DeCarlo News

Endocrine Update: The Fastest Doctor Appointment EVER!

2012-01-28T11:13:00.000-06:00

As if last week's trip wasn't enough, we went back to the medical center for another endocrine appointment this week. School has been tough with all that's been going on (Travis was so excited that he didn't have to have school the day we spent down with all Justin's sleep appointments, until I told him we would just have school on Saturday!) so I packed up everything to take with us to the doctor while we waited.

We got to the hospital and checked in and then went to the bathroom. (I am still working on potty training, with or without Justin's help!) After that, it was back to wait. Each floor of the clinical building where we have our appointments have different set-ups to entertain the kids. This one is a favorite, with an incredibly fast slide and an area with slanted walls the kids can try to climb. So Travis wanted to play a little before we started working on school. Well, he got about one slide before our handy dandy pager went off and it was our turn.

We went to check-in for weigh-in and height check and then into the room where the doctor was waiting for us. No kidding! She was all ready with her set of questions and then her tape measure to record Justin's growth. She measures Justin's head, and that along with his height and wight are recorded to ensure that Justin is keeping pace and growing. (Not growing would indicate a thyroid problem.) We went to the lab for blood work last week and she had the results all ready for us to examine. Justin's TSH levels are still high (out of range) but not as high as before. His T3 and T4 levels are still in range, so for now, still no treatment. She was very pleased with Justin's energy level and his awareness of what was going on with the doctor. He came over and "told" her that she needed to measure his head, and for some reason, he wanted his arm measured too (which she obliged him). That earned him good marks in her book and reconfirmed that he doesn't need thyroid treatment right now.

About the time we were finished the nurse (who is supposed to come in before the doctor and ask all the background questions) finally showed up and chastised the doctor for being too quick. When she left, the doctor whispered to me, "I don't like this new procedure we have with the nurses. I like to ask all my own questions. So I have to stay ahead of them!" Too funny!

We were out of there in less than 45 minutes! I carted all the school books around for nothing because that's about how much school we got done: nothing! But we did have a great appointment for Justin and another six months free and clear! Whoo hoo!

Back to the Sleep Clinic

2012-01-23T15:50:00.000-06:00

It was finally time for our return trip to the sleep clinic. Randy was able to go with us since it was his Friday off. I cannot tell you how excited he was to be able to get up early and drive down to the medical center in morning traffic to within a block of his office. What a treat on your day off! Travis was excited to have Randy with us because he has been playing some games on the ipad and he needed Randy to help him get to the next level. I always talk to the doctor and don't help him!

The appointment did not start out well because the doctor was flustered. It was not supposed to be a sleep clinic day and her schedulers had put us in on this day in error. And the DME had not sent the reports they were supposed to send about Justin's CPAP usage. (Grrr!) And since they put a modem on our CPAP, somehow the first nurse we saw assumed that meant there was no data card to read. It took probably 45 minutes for everyone to settle down, get the report, figure out that we have a data card and get it read. Whew! Then the real discussion began. The doctor started listening, Justin demonstrated the masks, and we shared our dramatic descriptions of wind storms and whistling noises coming from the various assortment of masks.

The doctor finally concurred with our analysis. Based on the report, Justin is having just as many OSA episodes per hour before the CPAP as with the CPAP now. So something needs to be adjusted. She agrees that the masks we have are not working and she is willing to try some other options. She agreed to send us back up to the sleep lab for another mask fitting and we are going to schedule another sleep study just in case we cannot correct the problem before then. (They are scheduling studies now for August!) The sleep lab could not see us in the morning, so we scheduled for after lunch. That was actually okay because we had planned a little side trip to the zoo since we were close.

It has been a while since we have been to the zoo. A lot has changed, but we didn't have a lot of time to see it all since we had to get back to the sleep lab. Some things never change though: Somehow, the play area is always the hardest place to leave, and Travis still doesn't like touching animals.

Then it was back to the hospital and back to work.

We had to tell our whole story again and the nurse who works at the sleep lab was so good to us. She brought out a bunch of different masks and she sang to Justin while she tried to fit one of them on him. This was getting to be a challenge because it was pushing his nap time. He let her put it on without any big trauma and it was so quiet and it fit so well! The only big drawback (there's always something) was that the head gear that goes with it is huge. It was pulled as snugly as it could be and it still was too large. It needs to be cut down and resewn to make it fit properly, but I think it has potential.

The "nugget" for this trip to the doctor was all about this nurse. She is like a sleep guru. She came from another hospital where she set up all sorts of protocol and programs to help improve CPAP usage. Now she's on the same mission at our hospital. The hardest transition is that now she is working with kids. So instead of just being able to ask the person what is the problem, it's all about statistics. The top three reasons people don't use the CPAP machines are: 1. poor fitting masks 2. nose issues 3. Lack of education/understanding why the mask is necessary.

So we are starting with number one: the mask. We are going to try to make the mask fit as well as possible and then when we restudy we can use this mask and get hard data to see if this works. She also recommended going ahead and working on number two: the nose. Justin may be having a tough time adjusting to the air blowing in his nose and it may be irritating him even though we cannot see it. There are preventative nasal sprays that coat the inside of the nose which would make the air more tolerable. This was the first time I have heard of this so this was big news. And number three we already understand so we're good with that. She recommended trying to make Justin understand that it is good to use the mask and that it makes mommy and daddy happy when he uses it. Randy and I listened and nodded, but then both agreed we are at a loss for making Justin do anything he doesn't want to do (case in point, potty training). If it's something we can strong-arm him into doing, we're okay, but if any of it requires his initiative, we're stumped.

I went home and made bar covers for his crib so when the hose moves through it it doesn't rub and make a loud noise. I also plan to make a cover for the hose to insulate it to make sure the warm air going through it stays warm (and thus irritates his nose less) and also to make it rub less on the crib. My mom is coming this week and I am waiting to cut apart the mask head gear until she gets here. She does much better at that type of stuff than I do. Although I did impress myself making the bar covers for the crib. They ended up being nice and snug and perfect-fitting. Randy said even he was shocked since they looked too big at first. Measure twice, cut once! Okay, so I did make one a little too small, but the width of the velcro covers my error. (I was hurrying, I admit it...)

So far, Justin is not impressed with the small changes. He was still up 8 times that night after the doctor. (And not to be outdone, Travis woke once.) He did fall out of bed once, so I will let that one slide. But mostly it's just for me to come in and lay him back down and tell him to go back to sleep. But I hope we can get this new mask to work and start making some big improvements.

P.S. Randy was able to get Travis to the next level of his game, so it was a successful trip all around!

More CPAP

2012-01-17T22:00:00.000-06:00

Last week the DME company came with their "bucket-o-masks" to try and find a better mask to fit Justin and help him sleep better. They brought the one we had ordered, plus several others, including the one I found on-line that seemed like it would fit better. We tried them on a very reluctant Justin, who cried through the whole process. The one super sweet part was Travis consoling Justin. He hears me tell Justin all the time that "it's going to be okay" and "don't worry, I will be right here" and Travis came up with his own line, while holding Justin's face in his hands, "Justin, don't worry, I will always take care of you." I melted right there in the middle of the kitchen, with Justin sniffling and the DME person offering more choices of masks. That was a good moment.

So we decided on a new mask and the DME would send it out the next day so we would get it in a couple of days. Not a problem, since we were doing okay with what we had for the time being. The new mask allows a lot more space between Justin's upper lip and eyes so it's not so big on his face. Plus I think that I can sew a piece of velcro on the little cap (it so looks like a yarmulke!) so the tube goes over his head.

The other interesting information was contained in the sleep report that the DME person brought out with her. It recorded all kinds of interesting information about his breathing and mask leaks and yeah, OSA incidents. Absolutely astounding! Justin had almost 100 incidents of OSA that night, with close to half of them occurring during a 45 min. window. "How is our child not dead?" Randy asks when I show him the report. Okay, so maybe not that serious, but still, Justin is not getting good sleep. Not by a long shot. We have a lot of work ahead of us still.

We got the new mask and tried it the first night. It lasted about 4 hours and after I had spent more time awake than asleep, I switched back to the old mask. I tried the new mask again the second night, and it lasted about an hour. I didn't even try after that. This is where the communication barrier is enormous. I cannot understand what it is about the mask that he doesn't like. I called the DME to see what the report showed to see if that would lend any insight and she asked what he doesn't like. Oh, if I only knew!! It makes me so frustrated because I want to understand and I can't. And when he's tired and upset with the mask, he just wants me to take it off and then he lays back down and goes to sleep.

I am scouring the internet for feedback on different masks and problem-solving websites to help me figure this out, but it seems like it's all personal preference. Everyone has the thing that makes the mask work best for them, and it's just a matter of finding that out about Justin. That's comforting and frustrating.

Justin has taken to crawling back into bed around mid-morning. He goes back in his room and climbs into bed and lays there, not really sleeping but just resting. It makes me so sad that when my child is quiet, and mother instincts start telling me go look for him, I find him in bed, not causing a lick of trouble. I am glad for no trouble, but I wish he had energy to do something!

We're going to the doctor this week, so we're hoping we can get some answers and make some plans for what to do next. Please pray for quick resolution. Our goal is to move the rooms around to get ready for the baby's arrival and we need Justin to be sleeping well to make the move easier. And if we need more sleep studies, we need to do it before too long. We both won't fit in the beds in the hospital after too much longer!

Thank you for ALL your prayers! We are so comforted and encouraged by you all!

Cowboy Breakfast

2012-01-09T15:17:00.000-06:00

So just what does a pistol-packing gun-slinger eat for breakfast?

Bitter coffee and biscuits as hard as rocks.

Or lukewarm hot chocolate and hot fluffy biscuits (with jam).

That sounds much better, I think!

Travis Helped

2012-01-09T15:11:00.000-06:00

I think Travis might mave helped Beyonce name her new daughter:

Blue Ivy

Yep, it sounds like him!

CPAP Update

2012-01-04T20:37:00.003-06:00

It's been a few weeks since I have said what's going on with Justin and his CPAP, so I wanted to make sure you knew that things are going much better!!

After my last ranting post, my awesome aunt took pity on me and she called to offer some suggestions. Not only is she a nurse, but she also knows a lot about insurance and DMEs (durable medical equipment companies) and she is a long time CPAP user herself! A wealth of information right there! She explained to me a lot about the different features of the CPAP machines and masks, plus what other things are the most influential and what I needed to make sure to focus on changing and adapting to make it better for Justin. When we finished talking I felt much better about what I needed to do and hopeful about working this all through.

So I ordered Justin a new pillow and we just got it this week. It is firmer so it doesn't push the mask off his face as easily. My aunt said that having the tube go over his head was a much better option than the tube that swivels around the front. I tried taping the one we have over his head, but it sticks out too much and by the time it can reach his head, there is nothing to tape it to except well, his head. I don't think I can do that. :)

I was also able to talk with another friend who uses a CPAP machine and get his insight. His machine is much different than Justin's so it was good to see something in person rather than simply pictures on line. Looking at pictures on line and talking with my aunt helped me to understand what our options are so I can push for the right things for Justin.

I didn't even realize that there are so many different types of actual CPAP machines! And some of them have really cool features: The flow rate adjusts automatically based on how it senses you are breathing, they have ramp features so the flow starts out low and then increases to what is prescribed by the doctor, the machine senses when the person is breathing out and it decreases the force of the flow so it's not fighting the exhalation. Very cool!

Before I could even call the DME and make an appointment to see all their machines, we got a visit from them to check our data card to monitor compliance. (They check to make sure we are using the machine and how it is going for the patient. They are checking both for the doctor and insurance.) They installed a modem so they can follow all of Justin's readings in real-time.

By the time the holidays were over and I felt mostly recovered from my bout of illness, I was finally prepared to face the DME. I called and asked for an appointment to see all their equipment and it turns out I don't get any options. The doctor prescribed the specific machine we are using (which is "top of the line" according to the DME. But they only carry one brand. Is that still "top of the line"?) But she did agree to try some different masks. (That is still coming.) The "nugget" that I gleaned from this discussion is that not only can they track usage with the modem, but it's also like a mini sleep study. They can tell if he's snoring or his mask is leaking or if he's he's having any apnea. She told me that they can tell that Justin is still having OSA episodes while he sleeps!!! Do you think that might be something I want to know??? I have been fretting about whether this is the right therapy because I just don't see the level of improvement I was hoping for from the machine. Well, if he's still having apnea, that might be part of the problem!!

Okay, deep breath. I was very polite on the phone, truly I was, but I am really, really glad I called. That was the lightbulb I needed. And, I even got a little encouragement: It's very impressive that Justin wears his mask for 8-10 hours a night. Every night. That is much more than any other DME patients Justin's age. That makes me feel slightly successful, even though my goal is not usage hours but improved daytime alertness. We go back to the doctor in a couple of weeks and we can discuss what to do next given this new information. For now, we'll keep doing what we're doing and try to figure out any other improvements we can make.

More Things

2012-01-04T13:47:00.001-06:00

There are a few other things I wanted to make sure to document before we get too far into the new year:

Justin made some great projects in therapy last month. It's really hard to see because it's not very dark, but Miss Caroline drew a Christmas tree and then Justin drew circles for ornaments and squares for presents. It was too cute!

And then he made this snowman with Miss Sarah. They practiced saying "arm" and "hat" and just having fun I think. We taped this on the wall behind his chair at the table and he points to it all the time to remind us of his beautiful picture.

Miss Caroline photocopied Justin's hands (they totally look like x-rays though, and that's what both Travis and I thought they were at first!) Then she practiced turning the scissors while cutting. So he is missing the tips of a few fingers, but it's the cutest little reindeer antlers you ever did see! Miss Caroline said he wore them for the first 10 minutes of therapy and didn't want to take them off.

Randy won his fantasy football league! The first time he ever played fantasy football and he won. I am so proud of him. It was really interesting watching how they figure all the numbers. I am glad it got him rooting for my team (the Packers) since he had some of their players on his team. He's already planning his strategy for next year. He's going to do some scouting and analyzing before draft day. If we weren't a football house already, we sure are now!
Justin even knows what to do when a team scores. He raises his arms and shouts, "Yeah!" He just doesn't know how to descriminate between our team and the opponents. Still workingon that.
He knows our teams logos and he can almost say "fooball" when he sees them around the house.
We have begun brainstorming some names for our little girl. Travis suggested "Travis". I said that might be a little confusing since we already have a Travis. Travis said it was just as confusing as when I call one of the boys "honey" since they don't know who I am talking to. Yeah, he got me there.
Travis might not be the best one to name our daughter anyway since he named his cousin "Shoehorn".
Then Travis started throwing out names like Summer, or Spring, or Lady of the Fall. I said, "Lady of the Fall DeCarlo?" He said, "Well, we would need a middle name too." Yeah, no seasons I think.
We started first grade this new year, since we finished kindergarten around Thanksgiving. Here's the picture from the first day. I am not sure why the boat had to be in the picture. I don't even ask.

How early do you need to call for a cardiology appointment? Five months. Are you kidding me?
More pipe leaks. Too many even to count. We have a routine: Randy turns off the water to the house, I fill pitchers with water, I get the flashlight, Randy scopes out the situation, we open all the faucets to drain the pipes, Randy calls the plumber. They fix it two days later. Do you know how hard it is to go without water when you're pregnant and have to use the bathroom all the time? Our neighbors don't even flinch when they see us filling our buckets from their outside faucets. We are getting estimates on repiping. We heard that it's the chemical they use to treat the water that's tearing up the pipes, and everyone is having the same problems. And the new chemicals are really hard to get out of water, so we're all drinking them too! The current water filtration systems have been focused on chlorine and they are good at removing that, but not the new chemicals. Thirsty anyone?
We are now on a first name basis with the pharmacy staff at Target. We have been there four times in the past week. They know all our health problems. And they know we're having a girl, thanks to Travis.
We received our first little girl outfit, the most adorable pink dress with bows and flowers and everything. I love it!
Miss Sarah asked me if there were any words I especially wanted her to work on with Justin. I couldn't really think of anything I really wanted him to say (that I know wasn't really hard, like "I love you" - what mom isn't dying for her child to say that?) But there are a few questions I hope she could get answers for, like what does he mean when he babbles and spreads his arms way out like he's opening and closing something? And what does he need when he keeps waking up during the night? She laughed and said she'd see about that.... Not holding out much hope...

That's a little of the past couple of weeks. Things have been going well and we are excited about 2012!

Happy New Year!

On the Mend - A Few Things

2012-01-03T14:18:00.002-06:00

I mentioned in my previous post that Justin had an eye infection on Christmas. By Wednesday, it still didn't seem to have cleared up, so we took him to the doctor. Meanwhile, he gave it to Travis. And Randy. And Randy also came down with a sinus infection and an ear infection. He was quite the mess, as the doctor said when Randy was finally able to see him.

The doctor gave us some new eye drops for Justin. And Travis. And thus began the fight to get the drops in the eyes every morning and night. Randy was sick, so after the first couple of times, I was left to get the drops in every session. Justin lays in my lap and I can usually get the drops in okay. He doesn't cry, but he grabs to pull my hand away. Doesn't help. Travis cries and then Justin starts up with the sympathy tears. It's cute, in a frustrating sort of way.

I was starting to compose this post with all of the various things that came up the end of the year. I was prepared to say how Randy always seems to get all the boys' illnesses, but to the extreme. When Travis had hand, foot and mouth disease, it was inconvenient, but not unbearable. But when Randy got it, I don't think he could eat for about a week with the way his mouth and throat felt. And Justin's eye was swollen and goopy, but Randy's was downright disgusting. I, somehow, seem to avoid most of the illnesses. I could reason that it is because of my job and all the things I am exposed to while flying. The first couple of years I worked I was sick all the time, but now I am reasonably healthy. Yeah, I am sure that's it...

Then on New Year's Day in the afternoon, I started feeling my eye burning and goopy. I prepared to call the doctor the next day to see what I could do about it. During the night, I got all the symptoms of Randy's sinus infection too: sore throat, congestion, achy, headache. Not sure if it was the same thing, but it made me feel awful. And I woke up with my eye gooped shut. It took two hands to pry it open. Not even kidding.

Thankfully, although Randy had to work, the rest of the city still recognized it as a holiday and we had no appointments or duties. We could stay home out of sight of the world. And we did! My eyelid was swollen and so was about an inch around my eye. The boys watched TV and I laid around and suffered. I did manage to find a doctor to call in a prescription and that was our lone venture out into the world. I look much better today, but during the night my other eye started gooping.

Travis is healed, but Justin's eye somehow is still red. So I get to continue with the drops and decide when is enough time before we go back to the doctor and see what else might be wrong. Randy is feeling much better. I still need a couple of more days before I call myself healed. Eye infections are the worst!

Christmas

2011-12-29T14:17:00.000-06:00

Christmas was a ton of fun! Every year it's different as the boys are growing and learning more. Travis is completely aware of everything going on around the holidays. Justin does whatever Travis does. That makes it completely humorous as Justin cheers or acts excited just because he sees Travis doing it. Justin figured out how to open presents this year. All I need to do is rip a little bit up and he can tear off the rest. And now he is concerned with what's underneath the paper, although not totally. He rips off the paper and he's ready for another. Travis was excited about all his presents and he even got distracted enough to leave unopened presents so he could play with the most recently revealed. Watching the boys is still the best Christmas present I get as a parent.

The boys were beside themselves waiting for Me-Me and Pop to arrive on Christmas morning. They came after breakfast to watch the boys open their presents (from us) before church. They get a kick out of watching the boys just like we do! This was the only shot of both boys together all day. After this, they were off and didn't settle down until bedtime.

Santa brought Travis a scooter. It's his attempt to teach Travis balance so he can ride a bike. Isn't Santa thoughtful?

Santa brought Justin Buzz Lightyear toys. He does some great flying with Buzz!

Did I mention that Justin woke up with another eye infection on Christmas morning? Oh yeah, just like in July when it looked like we punched him. You can sort of see how his right eye is puffy. Fortunately we still had some of the medicine from that incident, which we quickly instilled in his eye in hopes of averting another huge flare up. Justin also received a Larrymobile (Veggie Tales). It's pretty cool and Justin in enjoying it (Travis too!)

I love buying books, and Christmas is the best excuse I know to stock up on books. My kids never turn down an offer to read to them. Justin picks his favorite and we read them over, and over, and over!

After the morning present-opening session, we went to church and then home for nap. All of us! Then we went to Randy's parents for more presents and Christmas dinner.

Justin received a pirate dress-up costume.

He looks scary, doesn't he?

Travis received a light saber.

Here is something to be scared about!

Travis received some fishing items for his tackle box for the next fishing excursion with Pop.

And Justin received a Thomas book and play mat with trains. Travis already broke Harold the Helicopter! (Fortunately, superglue is one of those holiday staples along with batteries!)

Christmas was very relaxing and low-key. We enjoyed celebrating with our church family and being at home with our immediate family. Definitely a holiday to remember!

It's a.....

2011-12-28T16:56:00.002-06:00

I know I haven't posted about Christmas yet, and it's coming, but today we went to the doctor and found out that we are having a...

Girl!

This is Travis' picture...

And here is Justin's!

And she's healthy and growing just beautifully. We're excited! Can you believe it?

Christmas Eve

2011-12-27T09:26:00.005-06:00

Randy's family has a long tradition of getting together on Christmas Eve. They take turns hosting and everyone contributes to and eclectic and delicious dinner. The past few year they have fallen out of the practice and this year they decided to try and revive the tradition. I didn't take many pictures since we arrived late and Justin spent most of the evening eating! He loves his ham!

The "kids" did have lots of fun hanging out together. Our kids are by far the youngest as Randy's dad is much younger than his brothers. Justin and Travis were the center of attention, hamming it up for everyone. The older kids enjoyed egging them on.

These are the grandkids from Randy's dad and his 2 brothers. There are 4 missing, but we still had a great group!

This was before we got ready to go. Justin was telling Randy that he is sleepy, and Randy repeating it. To the right is Randy's cousin Morgan. She is trying to decide what to study in college and she is fascinated with Justin and his sign language. She wants to work with kids and speech, so we spent lots of time describing what Justin does in therapy. I hope we made a convert since speech paths are in such high demand!

Live Nativity

2011-12-24T08:59:00.000-06:00

One of our holiday highlights was our neighbors' live Nativity performance. This is the second year they have done it, and also Randy's second year to participate. The show features a person reading the story and the "actors" doing what the story requires (shepherds are visited by angels and wise men see a star and go find baby Jesus, etc.) The cast repeats the performance for a half hour and then they switch with another group for the next half hour. This goes on for 2 hours. They advertised on the local Christian radio station and they got over three times as much traffic as last year (more than 300 people)! They gave out candy canes and Bible tracts. Some people just drove by and others stopped and watched.

By the last half hour, the cast was primed and having fun! The shepherds were very afraid, the sheep baaed, and the wise men were very excited in offering their gifts to baby Jesus. One of the funny highlights was a real baby Jesus! My neighbors had their 10th child this year so she played the role of baby Jesus. Baby Halley had to get replaced a couple of times when she got fussy.

We had some of our friends come and help. They were wise men and they actually did about three rounds of wise men performances. They really got into it! They were high-fiving and making a circuitous trek around each other to get to the stable. Very funny!

Randy was Joseph for an hour. He just stood there and shivered. (It was kind of damp since in rained all morning.) He is such a good sport! He wants a moving part next year though!

Towards the end my neighbor came over to me and said that next year they want me and the baby to be Mary and baby Jesus! I laughed and said we would see about that! It was a fun evening and lots of people enjoyed the show. It was a good way to remember the meaning of the holiday.

Christmas Program

2011-12-22T18:31:00.003-06:00

The boys were in our church's Christmas program this week. The little kids sang some songs and Travis group acted out the nativity story, and the bigger kids did a skit about the 12 Days of Christmas song. They have been practicing for several weeks and I got glowing reports of Justin's practice performance, so I was really excited to see how he did. We didn't practice the songs at home because I knew he couldn't really sing them anyway, and he picked up the tunes very quickly. He was swaying and rocking with all of them! He did very well with the motions when he was standing up, but he did spend a good portion of the performance sitting down. He was super cute either way! He fit in with all the kids. They alternated between singing and doing the motions and:

picking their noses...

...whispering to each other...

...and checking out what their neighbors were doing.

It was precious! The cheering always seems to be the loudest for the littlest kids. And the smiles are the biggest. The kids even bowed at the end. Loved it!

Then it was Travis' turn. He was a shepherd. Those are their sheep in front. That's the angel making her way up on the stage to give them the good news of Jesus' birth, and the rest of the "heavenly host" coming to join her in a minute.

Travis did a good job of acting very frightened. He knew exactly what to do and he made sure the rest of the shepherds didn't go see Jesus until it was their cue.

I think those were the animals in front of the manger. They were fairly disinterested, but really cute!

After the story, they sang Away in a Manger. They did a great job singing loudly and doing the appropriate motions. Travis practiced a long time to learn the first two verses. He really enjoyed doing the program!

The "after" pictures of Travis, Justin and out friends Clara and Robert. Clara was the angel who brought the good news to the shepherds. Robert was the cheering brother in the audience.

After the show, there was soup for dinner and crafts for the kids. Plus, Santa made a visit to hand out candy canes and listen to Christmas wishes. This was our only Santa picture of the season. I was slightly uninspired this year. Randy's parents took the boys to Bass Pro Shop earlier this month and got pictures with their Santa, and a large elk and various other woodland creatures in the background. Very cute!

It was a good evening and we all had lots of fun. It's always great when our church family spends time together. And celebrating Jesus' birth and the holiday season is a wonderful reason.

CPAP Update

2011-12-20T07:44:00.000-06:00

The CPAP machine seems to be controlling my life these days. I have not been sleeping in Justin's room, but I spend a large part of the night walking back and forth between his room and mine, making me think it might be better to sleep in with him. He still cries a bit when I put on the mask, but as soon as it's on. he's ready for me to turn it on and then he gives me the fist pump so I know that it feels good. He lays down just fine and goes to sleep, but then he wakes up about 6-8 times per night. Given that many wakings, it seems to me there is no way he can be getting better sleep.

His wakings vary from the mask having slipped and needing readjustments (those wakings are heart pumpers since I am woken by piercing screams) to just sitting up and needing to be told to lie back down. He is trying to sleep on his side, and that tends to push the mask slightly askew. This new mask has a swivel hose attachment and sometimes it gets slightly kinked and that makes the air flow interrupted. Wes (at the sleep center) told us that the CPAP machine adapts to some of those interruptions, so I am somewhat comforted by that, but I am not sure what that does in the long run.

I have been brain storming ideas to see how and what to fix. Every aspect of the set up needs consideration: Is his pillow too soft causing the mask to shift too much? Is the mask too loose? Too tight? Is the mask fitting well enough? How can I adjust a mask clearly made for an adult to fit well on a small child with a flat face and low nasal bridge? I have been thinking about how I can revamp the straps to fit tighter and yet still make it flat enough to be comfortable when he lays on it. By tighter I mean more securely, I guess. Is Justin just convinced this is temporary and he's trying to hold out for us to give up? Is this really not the right therapy for him? A million possibilities.

I have plenty of time to think about it since I am awake so much at night. I usually get up early to get ready before the boys wake up, but with Justin being so unpredictable I haven't been able to keep my routine very easily. This morning I woke up and the coffee Randy was making (which I have been trying not to drink) smelled so good, and the peppermint mocha creamer called my name. (I am drinking as I type...) Please pray that we can pinpoint the problem and solve it quickly. Thanks!!

Christmas Ornament

2011-12-18T21:02:00.000-06:00

I finally got around to making our Christmas ornament this year to give to the grandparents. I was planning to use an idea a friend had shared last year about putting the kids handprints on a ball and making snowmen out of them, but my creative juices were not flowing enough to think I could create anything out of handprints so I opted for hot glue and dried beans. I found the idea in a library book (175 Christmas Crafts) and it appealed to me because I had everything I needed already in the house. I know, lazy of me...

The idea was to cut a heart shape out of poster board and glue beans around the outside, working in until the middle where you glue a bunch of pearl barley. I didn't think I wanted a heart, and I thought the wreath shape would give us more rounds of beans to glue. And I had no poster board, so cereal box it was. Randy and I cut the shape with a bowl for the outside circle and a glass for the inside circle. Then we painted them green so that would be the color that showed through the beans. It took several coats of paint to cover enough, but this was the part that Justin helped with so he enjoyed it.

I had a bag of 15-bean soup which worked perfectly! We sorted the beans into small bowls for ease in gluing. An awesome toddler activity in itself! The mix I had was a great combination of small/large and dark/light colors. I was surprised that it had very few black beans though. I had to break into another bag to find enough of those for our purposes. We made three wreaths out of the bag I had and there are plenty left for more ornaments. Each one is different, which is fun. Someone suggested putting a picture of the boys in the middle, but that kind of would make it a large picture frame... Maybe another time...

So after the paint was dry we started gluing. Travis did this part by himself. Justin supervised. I was glue master. We used a hot glue gun to ensure sufficient stability. I highly recommend a glue gun. It worked very well. Then we just picked our design and glued. Only put glue in a small section at a time. Children are not quick in attaching beans given their (the beans) small size. Otherwise the glue dries too quickly.

When it was dry I cut some ribbon for a loop for hanging and made a bow for the bottom to make sure everyone knew it was supposed to be a wreath. I would use thicker ribbon next time, but it's what was in my house and available. Using two thinner ribbons worked just fine. And the red/green thing helped my identity concern I think.

(Travis was playing pirate, thus the camouflage headscarf. (?) Good thing I didn't take the picture later when he had taken off his shirt because "Pirates don't usually wear their shirts, Mom.")

I was very impressed with Travis sense of design and color combination. He picked everything, with a little help from the peanut gallery/supervisor. I thought the large/small alternating was nice on the outer row. One more fun Christmas activity, check! Down to 7 more chains to cut off before Christmas!

P.S. Nana, I hope you like this ornament...It's yours to claim whenever you come back to see us!

CPAP: A New Mask

2011-12-13T20:10:00.000-06:00

I got a call from the sleep center last week asking how we were doing with the CPAP. We had a pleasant chat about the medical equipment company who delivered the machine and helped us set it up. I have not been 100% pleased with the mask Justin has and the way it fits. The sleep center informed us that we have 30 days to return the mask and request another one. Well, that would have been good to know! I thought we had to wait 6 months until insurance approved another one. The man (Wes) from the sleep center also said that we could come down for a mask fitting and check of the machine any time we wanted. Another good piece of info to know. So I made an appointment and we went today to see what we could see.

Right away Wes agreed that the mask wasn't a good fit. He also said that there aren't a lot of pediatric masks available and that is their constant struggle. He found us another one that we could try to see if it works better so Justin is sporting it tonight and we'll see how it goes. The problem is fitting something in the small space between his upper lip and the bridge of his nose. And we want a good seal so air doesn't blow out either the top and irritate his eyes or the bottom and irritate his cheeks or chin. Winter is brutal on Justin's cheeks and face anyway and he always has red skn no matter how much vaseline and lotion we put on. Nightime was always our time to grease him up, but now we can't with the mask. Wes also said we need to make sure we wash the mask every day since facial oils will eventually cause the mask to slip and leak.

My other huge dilemma was the humidity setting on the machine. I was wavering between the lower end settings, but last night I noticed the mask leaking and the air being so cold that it made Justin's cheeks cold. (He woke up several times last night. I spent the first night back in my bed but I went back and forth a bit. About 4 times I think after we finally went to bed. And then I took the machine off around 5:30 am because he was groaning and Randy was awake and I didn't want Justin to stay awake too.) Wes said that it's better to err of the side of too moist because too dry will cause stuffiness and nasal swelling. He did a great job to explaining the purpose of everything so I can understand it all and make better decisions.

And I have to say, for a guy Wes was extremely patient and encouraging. He even said that he could tell based on how Justin tried on his masks and used the machine for him to listen that we have been doing a good job. He wasn't even upset when the first thing Justin did was pee out the side of his diaper and all over my leg. He got me a towel and left the room for Justin to calm down. And after listening to all of Travis' peanut-gallery comments and putting up with all of my million questions, he still thought enough to get both boys foam gliders and stickers to have as prizes for being so good. Justin trotted out of there mighty proud with red puffy eyes, glider in hand, wearing no pants. I am glad it was a warm day!

Another Gingerbread House

2011-12-11T21:32:00.000-06:00

We have friends who have a gingerbread making party every year around the holidays. They use it as a chance to spend time getting to know people from different circles of their lives. They try to get a good mix of people, some older, some with little kids, some who have never made a gingerbread house before. They have snacks and drinks and provide the houses, the guests bring some candy to supplement what comes in the boxes. It is usually a great time to get to know friends and relax around the holidays.

Let me begin by saying that we do not get invited to this. Not because they don't like us, but because they know us too well. That's what I keep telling myself anyway. So last night we get a call from them saying that it's gingerbread house party night and two of their three families cancelled and were wondering if we would be a last minute substitution. Now that would put most people off, but knowing the thought that goes into this party, I understand the last minute call. And being totally aware that we were not first round picks, we went to discover the mystique of the gingerbread house party.

The other guests were a little late, so we started in on the snacks. Chris made real egg nog, which I didn't get to sample, but it looked delicious. I stuck with the chips and rotel. Justin ate his share too, since he didn't like dinner. Kelsey had everything laid out beautifully down to the holiday paper plates. The other couple was Chris' boss and his wife so our kids were the only other little ones. The kids got their own pre-fab house to decorate so they went to it. Justin and Robert just watched, but Travis and Clara got into it. It was hysterical listening to them jabber about what to put where and how to decorate their house. They worked really well together and they didn't even fight once. There was quite a bit of whispering and giggling though.

I did the top row of swirls on the roof, but they did the rest. I was impressed!

The adults turned out some fabulous homes complete with candy rock paths, shutters and shrubbery. Randy and I didn't attempt our own house, which was good in retrospect. Ours would have paled in comparison. My lack of sleep was catching up to me!

After Justin ate his snack he went and played and did some light reading.

Here's the finished project. Most of the candy ended up on the house along with lots of extra frosting. They even created snowmen/gingerbread people to go on their house from cookies Kelsey bought for us to eat. They had a great time and they ended the evening watching the Grinch on TV. An all-around good time! We appreciated the invite and even though we were second-tier, we had first-rate fun!

Back to the CPAP

2011-12-11T21:04:00.000-06:00

Justin's nose finally dried up enough to restart using the CPAP machine this week. I wanted to try it the night of Cookie Day, but I had the cookie exchange and I couldn't get home in time for Justin's bedtime and I didn't want to wake him up and try to put it on later in the night.

So, we started up the next night and it was just as bad as the very first night. I wasn't surprised. He let me put it on with no arguments, just a few tears, but he woke up quite a bit. The first stretch was from 9 pm to 10:30, and then he woke up every half hour from then until 3:15 am. Most of the wakings only lasted a minute or two, maybe up to 10 minutes at most, but at 3:15 he was up for an hour. And I had to get up at 5:45 (which is late for me). I was prepared for a tough day since I had to go to work.

Night two was better. He slept for longer stretches, but he was still up about 6-7 times. This time his wakings have been different than before. The first time we tried the CPAP he would sit up when he woke. Now he is just staying down on his pillow, but he moans and waves his arms. So a few times after a minute or two of moaning I had to sit him up and wake him completely so he would stop and go back to sleep. I didn't sleep very well, but I think Justin did better. I had to work again that day and I was pretty tired!

Night three was amazing! He slept the entire night straight through! I woke up around 4 am (I had to go to the bathroom, go figure...) and realized that it was almost time to wake up (for another day of work for me) and Justin hadn't stirred. I was thrilled and I almost wanted to wake up Randy and tell him. I thought better of it and went back to sleep for another hour or two. I went to get ready for work and checked the computer just to see if someone had taken my trip. (I was trying to get rid of it since it was Sunday but I wasn't holding out much hope.) But someone did take my trip so I didn't have to work.

What a fabulous day! Great sleep, no work, and I was able to go to church and spend the day with my family! There were a few tears shed while singing today at church. God is so good! I have high hopes for getting back into my own bed again soon. One more night on the floor and I think I will attempt going back to my bed. Please pray that's a good (and easy) transition.

Holiday Activities

2011-12-08T20:13:00.000-06:00

This week we did some things to get us in the holiday spirit. It was Cookie Day this week and Travis and Justin built and decorated a gingerbread house. I love anything that involves eating and yummy smells, so these were both great activities!

Cookie Day was slightly less lofty this year. I perused my cookbook and searched for some tasty treats to make for our neighbors and therapists and I realized that this would be my first solo Cookie Day. I have always had either my sister or my mom (or both!) here to help and they are both gone. I even broke down the day before and called my mom and asked her to come down for the day. Cookie Day has become one of my favorite mother/daughter activities and I was missing her even thinking about it. My mom was a Home Ec teacher and she always taught me so much about dough consistency and flavor combinations and substitutions and more. She couldn't come despite her best efforts, so I had to do it on my own. I decided to do better planning next year and have lots of people come help to make it more fun. It's just more fun baking in groups!

I settled on 7 different kinds of cookies, with some bars, some drop, and one refrigerator variety. Not all chocolate (but some of course!) one pumpkin, one cranberry, one lemon, one gingerbread/apple. I even attempted my first meringue cookie! (No wheat, so Justin-edible.) Only one smores bar failed for lack of proper extraction from the pan, but it tasted good as we scraped it out with knives and fingers. The rest were really tasty! I didn't take pictures since I was too busy and on a deadline. The kids watched too much TV, and I forgot to eat lunch (I did feed the boys!) I went to a cookie exchange that night and traded a few white chocolate pumpkin cream cheese drops for everything under the sun. Fortunately there was hearty soup at the cookie exchange to help rejuvenate me and bring me down from my sugar high! The cookies I traded for were the only ones Randy and Travis could eat until I got the rest packed up and delivered and I knew what would be left over.

The next day I let the boys assemble the gingerbread house we bought last week. Justin didn't help much last year so I was curious to see what he would do this year. Well, he ended up digging right in! After I got the walls erected and it was candy time, he enjoyed it just as much as Travis. Justin is not a candy eater, which surprises me. He puts everything small in his mouth, except candy. Don't get it. Travis did the top, and Justin managed the bottom. Justin is very precise and Travis just sticks on the candy. The result was a beautiful masterpiece! What a combination of brotherly love! (Oh, and you can see some of the cookies in the background of the pictures.)

Buddy Walk

2011-12-03T18:35:00.000-06:00

Today marked our fourth Buddy Walk (Houston's 11th) and we had a great team gathered. I think it was one of our largest. We had a great turnout from our church, plus therapy and family. We were at a new location around Minute Maid Park, which wasn't near as pretty, but it relieved our overcrowding problem at the other location downtown. It took some phone calls and direction aid to get everyone to our meeting point, but it turned out to be okay with lots of room for the kids to run and benches for the older folk to rest prior to the Walk. The weather was perfect: sunny, light wind and mid-70s. Great for early December!

Here's a few pics prior to the start:

Cheyanne and Justin

Pop and Justin

The whole team: There were a few returnees, but lots of new members too.

During the Walk the kids had lots of fun. The street is wider than the path we've been on in previous years and made it easier for the kids to goof around.

There were more than 6,500 walkers and we took up the entire block around Minute Maid Park.

The level street made it easier for wheelchairs and Me-Me's scooter.

Our friends from therapy (and the movies), Melissa, Cheyanne, and Cody.

The girls loved hanging out together. The five girls in the front row are all the same age and used to go to church together with us.

We got medals for the kids again. Justin was fascinated by his medal.

The kids and their medals

A friend took this picture. Isn't it the cutest?

Next year's Walk is scheduled for December 8 so mark your calendars now!

Randy and Me

2011-12-02T19:03:00.003-06:00

With so much about the kids, sometimes Randy and I get left out, so here's some of what we've been doing:

Randy is participating in his first season of fantasy football. He has always been an avid college football watcher, but this has developed his taste for the pro variety. It has definitely changed the way we watch football, and it has been determined that the best players do not always post the best fantasy football scores. It has been a steep learning curve for him and I am so proud of how quickly he has picked up this new sport. I am enjoying it as well. It's kind of fun to root for my husband, even if it's not on the field.
I have been muddling through a Bible study of some of the minor prophets. It's a Kay Arthur Precept study that the women of our church did in the morning class this fall. They are finished, but I am still working my way through Habakkuk. (The study included Micah, Nahum, and Habakkuk.) It is quite challenging and I am learning a lot. I think Habakkuk is my favorite, but I am ready for some more uplifting books from the New Testament next spring.
We are making some decisions about some home repair projects we have been planning. We have lots of things we want to do, so we are prioritizing. It's finally cooler around here so we can think about doing work without breaking out in a sweat! If you know of any good plumbers, painters, or general contractors we are looking for recommendations.
I have been in a decluttering mood lately. I am purging and sorting and reorganizing. I am loving it! I went through the boys' clothes today and now only the clothes that actually fit are in their closets. (It's a problem with Justin because so many of the long sleeve/long pants are just way too long and need to be shortened or even set aside until they fit a little better. Justin still wears most of his 18 month pants fairly comfortably. I was saying a prayer of thanksgiving for living in a warm climate where we don't need long sleeves but maybe 3 months a year!) My goal is that the attic be empty except for Christmas decorations. Lofty, but attainable I think!
Oh, and one last thing: We are having another baby! Coming in May...

Thanksgiving

2011-12-01T15:33:00.000-06:00

We spent Thanksgiving with Randy's family. Randy's brother and his wife came into town with their daughter, Lauren. Lauren and Travis had a great time playing together! Lauren is not used to boys but she adapted quite well to Travis' running and rough housing. Justin did his usual tag-along routine. It was so great to watch. We don't get to see them very often, so this was a special treat. The kids got their own table for Thanksgiving dinner. They even ate a lttle bit!

We won't be seeing Lauren for Christmas so the kids exchanged presents on Thanksgiving. They all loved their presents and they became the focus of play for the rest of the day. Justin got a Swat team dress up set with a very cool gun, headset radio, grenades, glasses, vest and helmet. They all loved playing with his gift. The went on quite a few "missions" that day.

And football: The Packers and Cowboys won, but the Aggies lost. And the loss almost cancelled out the wins. It was quite a tough loss and we are still recovering. The Badgers win on Saturday helped some, but it's very sad to know that it's the beginning of the end of (college) football season.

CPAP: The Next 2 Nights

2011-12-01T14:25:00.001-06:00

The next night we really turned the corner. Justin only woke up three times and he settled down quickly. The fourth night Justin only woke up twice and I didn't even sit up to help him. He managed to settle himself down all by himself! We even used the CPAP for nap and he slept three blissful, uninterrupted hours. I put Justin to sleep without laying down myself so I was able to have a couple of hours to catch up on other things before I went to bed on the floor by his bed. He was able to do it without any major drama. It's amazing to watch the difference in his sleep! Usually, he tosses and flips and rolls and sits up and wraps himself up in the covers. With the CPAP, it's like seeing a body in a coffin (with his chest rising and falling though!) He is so still and peaceful. He lays with his head right in the middle of his pillow with his arms right down by his sides. I love it!

The next day Justin got sick though, and that ended our great run with the CPAP. It started with a runny nose and cough and by Tuesday it had escalated to an inability to sleep alone and an inconsolable whine. I have to say that whining has to be one of the worst parts of Justin being unable to talk and effectively communicate his feelings. So we went to the doctor and Justin had at least one ear infected. The other was full of wax, but really it didn't matter since he's getting the medicine anyway. The problem was that the doctor heard the beginnings of a wheeze so he ordered a chest x-ray to be certain that Justin didn't have pneumonia. (The doctor couldn't really hear Justin's breathing very well because of the whine!)

After several more hours waiting for the x-ray and a missed nap, our day was complete. We got the word later that day that Justin's chest is clear and it's just the ear infection. The odd part was that Justin didn't have a fever at all. But that's okay, Justin waited until that night to work up to a fever. We spent another sleepless night tossing and turning and consoling a feverish child.

The good news is that now two days later we are on the mend and we are over the whines. The nose is still running so we can't use the CPAP yet. But when we can, I am praying it's not like starting over again.

CPAP: The Second Night

2011-11-24T07:52:00.001-06:00

We were not put off by the long first night and so the second night I was prepared with a few changes. We put the hose through the headboard and got Justin a better pillow so his head didn't move as much. I also upped the humidity setting on the warm air he gets through the hose. I was able to get the mask on without any additional help and Justin didn't get as upset. When we said it was time for bed he put his hand on his mouth to say that it was time for the mask. I was very encouraged and ready for a better night.

He woke up the first time 2 1/2 hours after we went to bed, with the same flailing as the night before. That was the longest time he had ever gone without waking up so that was great. But he was still a little too upset when he woke up, so that discouraged me. But the rest of the night was better: He ended up waking up about 7 times, but he wasn't upset at all when he woke up. All I had to do was talk to him and tell him to calm down and lay his head back down. It took a little coaxing, but he didn't fuss and he did lay down. The last time he woke up was about 5:30 or 6 and so I took off the mask and told him to lay down. He went back to sleep until close to 8 am. I counted the night a resounding success and definite progress from the previous night.

CPAP: The First Night

2011-11-23T22:20:00.001-06:00

The CPAP machine was delivered yesterday. The respiratory therapist arrived around 1:30 (30 minutes past nap time) and she showed me how to use and care for the machine. Justin was sitting in my lap and Travis was standing next to me while she had pulled out the water reservoir to show me how to open it and clean it. To get it out of the machine, you have to lift a door on the top and slide it out the front. While it was open and we were talking, Justin pushed the door closed. Travis pulled it up, Justin pushed it closed. Then Travis pulled it up so hard that the pulled the door right off. The respiratory therapist gasped quite audibly and froze. When she regained her composure, she sputtered, "That has never happened before. I am not sure it can go back on..." She spent the next several minutes attempting to reattach it. She finally did get it back on and she turned to Travis and said, "Don't ever do that again!" He did one of those half laughs and stood very still the rest of the time. He said he wouldn't touch it at all. (And so far, he hasn't!)

She went through her whole spiel. They sent another mask for Justin (appropriately called the "mini-me") which seems less cumbersome and might work better. The hose attaches to the top and goes over the top of his head so it stays out of the way. Here's how it looks on him. It's really not too bad. The one bad thing we discovered is that the mask kind of pulls whichever way the tube goes.

The therapist tried to show me how to put it on Justin the very last thing before she left. By this time it was 2:15 and way past nap time. That did not go over very well. She said that she had to do it so we did it quickly and then yanked it off. I had planned to let him try it for nap, but there was no way he was having any of that so we put off trying it until night.

That night was the first night. It took both my mother and me to get it on him. Once it was on he didn't try to pull it off. We put the machine on the floor at the foot of his bed. We ran the hose around the headboard to come up the side by his pillow. We learned that caused the mask to pull and the next night we put the hose through the slats in the headboard. (Much better!) I planned to sleep on the floor by his bed so I could be there when he needed me. I had all my supplies: kleenex for crying and nose-blowing following overnight hysterics, a flashlight to check the fit of the mask, and a clock to give me some idea of time. It took him an hour to go sleep. He went to sleep very peacefully, but then the fun began. He woke up at least 17 times. (I lost count after that...) And he would sit straight up in bed and flail his arms. We had practiced breathing deep through his nose so we would do that to calm down and then I had to coax him to lay back down. Some wakings were quick and others took several minutes. He never tried to pull off the mask, but he wouldn't let me adjust it. Since he had been so uncooperative when we were putting it on, I didn't think I got a good fit. The hose pulled it off center and it was off his nose by morning. He woke up around 6:15 and I had him lay in bed until 6:30 before I would let him get up.

The night really went the way I expected it to go. It's just a question of how long it will take to improve. Justin was really tired during the day but I hoped it would make for a better second night because he would be so tired. I haven't had much time to blog because I have been with Justin whenever he is asleep ( I go to bed at 8 pm and we do naps together too.) I will tell you how the next few nights go when I am more awake!

Results

2011-11-21T19:59:00.000-06:00

We went back to the doctor this morning to find out the results of Justin's sleep study. The doctor said that Justin had mild sleep apnea the first part of the night, prior to the CPAP. When Justin settled down and went to sleep he had some incidents of apnea and snoring, plus restless sleep. When they put on the CPAP machine, they began titrating it at the lowest setting and he didn't have significant improvement so they upped it to the next setting and that did the trick! He did not snore at all, he didn't have any apnea episodes and he slept calmer. Wow! I am so glad that we got such great results at such a low setting. That will help him tolerate it much better and still be effective. She thinks the CPAP is what he needs to get improved sleep and correct his sleepiness. Right now Justin goes to bed around 8 pm and wakes anywhere between 5:30 and 6:30 am. She recommends that he go to sleep at 7:30 pm and sleep until 7:30 am. That plus a two hour nap will get him the recommended amount of sleep he needs for his age.

So the doctor ordered the CPAP machine and said that we would hear from the medical supply company within a few days. They will come out and show us how to use it and care for it and make sure we have the supplies we need. With the holiday coming up, I figured I won't hear from them until next week. I was surprised to get a call during dinner that they had received the order for the CPAP and that they could come out tomorrow before nap to get us set up! That will be wonderful because my mom (who uses a CPAP) will be here and she can help Justin get used his and they can be twinkies!

Please be praying that this transition will be as easy as possible. I am expecting some trouble and lots of waking during the night, but I really think Justin will do well. He's been playing with his mask and he doesn't mind wearing it at all. And the low setting should make it fairly easy to use. In his own bed without any extra wires, he should be fine. I am praying that this is the last phase in the long journey to better sleep! After Justin uses it for a few weeks we will go back to the sleep center for an evaluation and they can read the data off the card to make sure it's all doing what it's supposed to do.

Sleep Study - CPAP

2011-11-13T21:50:00.000-06:00

We went for Justin's third sleep study to titrate the CPAP machine.

It was the first time we have gone when it wasn't a cancellation appointment so we had lots of time to prepare. My mom uses a CPAP machine so she napped with Justin this week and showed him how it works and he got to try it on and test it. He didn't mind the mask, but he did not like the air at all. I was glad we could prepare him for what was coming, but it was still tough.

He knows exactly what to expect and he was fine up until the nurse had to begin hooking everything up. We had John helping us this study and Justin did not click with him...at...all.

Justin got to watch Barney, as promised. All was good until the pile of wires came into view.

No pictures of wire attachment because it took all my energy to hold him still enough to place them. There was no discussion of the best way to do this or how to make it less traumatic. John's method was "get it done...get it done fast...the more tape, the better!" We went through a box of kleenex wiping and blowing poor Justin's nose. And I was fighting this internal battle like I fought when we handed Justin over for heart surgery. I know it needed to be done, but I didn't want my son to hurt. And Justin's mournful cries for "mamaaaa" nearly broke my heart.

So here's with the top part of his head attached. Still needed chin, chest, thumb and nose. Plus the fancy hat!

Now he had on the stocking cap. He missed almost all of Barney with all the screaming. When it finally ended he wanted us to restart it.

They put the pulse ox on his non-sucking thumb. One of the good things John did for Justin! You can see everything hooked up to the box on the bed behind him. I had to take all the pictures holding the camera out in front of me since Justin wouldn't let me leave him. You can see how red his poor little nose is!

Completely ready for bed. He had to calm down for us to attach the nasal cannula so it wouldn't get filled with snot! I am so grateful for his Bee!

The study was scheduled as another split study: the first half of the night was without the CPAP and the second part was with it. That was not what I expected and I expressed my concerns right away because the last time Justin didn't meet the requirements for the CPAP with enough time left in the night to try it. I did not want that to happen again so that we would need to come for another study. John said he could call the doctor and see what he said. I never found out what the doctor said and we just went to sleep without me knowing what was planned.

Around 12:30 am John came in (with help) to attach the CPAP. He said that Justin hadn't been experiencing much apnea, but that he would try the CPAP to see what happened. It took some time to get it put on and Justin did not like it. By this time, Justin was screaming any time John would come in the room. He didn't even have to touch Justin for him to start screaming. Some of his more blood-curdling cries were when John wasn't touching him!

Justin didn't mind the mask so much, but when they turned on the oxygen, he started fighting. John finished and I was left with the task of getting him back to sleep. The words I found that worked the best were, "Calm down and go back to sleep. We cannot go home until you go to sleep." That actually made him lay back down! When Justin finally relaxed and was sleeping (I think), John came back in and had to change the nasal cannula because, would you believe, it got clogged! That set off another round of hysterics and I had to start over again.

Somehow, we made it through the next 5 hours and we were awakened at 6 am. I got a picture with the CPAP before John took it off. The entire night Justin didn't try to take it off. I think he would wake and it would scare him and then hearing me talk in his ear would remind him of what was happening and then he would settle down again.

Taking everything off caused more hysteria and poor Justin was not happy by the time he was finally free. I learned a little more about John's philosophy: more waxy goop, the better. Justin's hair was coated and it still isn't all out of his hair. I could only scrape so much before Justin pulled away.

Poor guy!

So how do I think it went? In spite of all the tears and trouble, I think Justin slept much better with the CPAP machine. I think he fell asleep quicker and slept deeper. He was more still when he slept (not so much flopping) and calm. When I nap with him, I notice that he seems to hold his breath as he's going to sleep and I need to tell him to remind him to stop. When Justin laid down, I felt like he slept very quickly with none of that weird breathing. Of course, this is all my perception in a completely dark room while I am sleeping in the same bed with him. We have an appointment next Monday to hear the official results. We got to keep the CPAP mask and Justin put it on show Randy and my mom, so I don't think he would mind wearing it. I think being at home, with no extra wires and no John we would do just fine. Now we wait and see.

Travis News

2011-11-08T14:41:00.001-06:00

So Randy e-mailed me last week to help me correct some of my spelling errors, plus to remind me of the big thing that happened to Travis last week: He pulled out his (third) tooth!

He tried to tell me it was loose, but I didn't really think it could have gotten that loose in the few days since I had felt it last. It can, and did!

We were having lunch with a (slightly older) friend and she told Travis that the tooth fairy at her house growing up paid more if you pulled out your own tooth rather than having parents pull it.

So at naptime Travis came out of his room trimphantly and declared, "Mommy, I pulled out my tooth!"

So who's paying the premium on this tooth I wonder??

A Few Things

2011-11-02T21:01:00.000-05:00

Here's some of what's happening around here:

Justin has started doing stomach crunches when he gets his diaper changed. He lays down, puts his hands behind his head, and up he goes. It's a hoot!
When the boys' cowboy vests arrived, Travis started playing cowboy. He came in wearing his vest and asked me (the ranch foreman) what he needed to do. I sent him to go check the cattle. He came back and said they all got away. I said that he needed to go find them! He said that he couldn't, they were in North America. I couldn't bear to tell him that we are in North America, so I asked him how he knew that's where they were. He said, "I have GPS!"
Justin has a few new words: "blow" and "purple". I love making him show off!
Justin has a sleep study to get his CPAP machine next week. Please pray it goes well!
We moved Justin to a toddler bed tonight. I eventually want to move both boys together and this is the first step. Plus, I think the CPAP machine will be easier with the toddler bed. I am not at all sure how to make it an easy transition. I am preparing for many sleepless nights and lots of daytime napping!
Travis went fishing today with Me-Me and Pop and he caught two catfish! Guess what we had for dinner? (They were already cleaned or there is no way I would have touched them!) Justin probably ate an entire fish himself. I will post more when I get pictures.

That's about all the cool stuff for now. We are enjoying the cooler weather and spending lots of time outside. It's wonderful!

Halloween

2011-10-31T20:26:00.000-05:00

Halloween was tons of fun. We went trick-or-treating with our friends, the TD Family. They live in a very cool, kid-friendly neighborhood so we knew we would have enjoy the holiday with them. I decided to do a little thumbs up, gig 'em picture to get the kids excited for the evening.

Here's the cowboys with the bumblebee and the Jedi. The weather was perfect for trick-or-treating.

After I took the previous pictures, Justin began shedding his costume. A neighbor's (tiny, but admittedly very excited) dog came out to join the fun and the boys jumped into the back of the truck. Okay, so I helped Justin a little. Travis is afraid of dogs and he is passing on his phobia to Justin. They both survived. Phew!

Justin only lasted a few houses. We ran into another (small harmless) dog and I couldn't protect both children. There was screaming. It wasn't pretty. They both survived. Phew! He helped Mr. TD and Daddy hand out candy.

Travis loved feeling his bag get heavier and heavier. He really enjoyed the night. He was ready to go for more and more. I ended up carrying the bag by the time it was all over. That was okay. Then I could help make it lighter! (Wink!) I like Halloween too!!

Pumpkin Patch

2011-10-29T20:01:00.001-05:00

It was Pumpkin Patch at our church this weekend and while I had to work, the boys' schedule was wide open so they moseyed on over to check it out. I found some great cowboy vests on Etsy to go along with the other cowboy gear we already have so we turned out some fine lookin' dudes for Halloween. They rustled up some excitement and some candy too!

They had a little trunk-or-treat row with the cars all decorated and filled with candy. They visited all the cars, except for the Texas Longhorn one. It's football season, for goodness sakes! We need to be loyal to our team!

There were some games too. Justin enjoyed the Dino Dig and we might have a budding archaeologist here. He uncovered lots of artifacts.

Travis tried his hand at the ring toss, without much success I heard. The rings weren't much bigger than the bottles, but he tried.

Justin and Travis both liked the basketball game. This is the best picture of Justin trying to get the ball in. Randy said he did pretty good. He doesn't lack for enthusiasm!

And of course Justin got to spend a little time with Mr. Rick. He's an elder at our church and every week he comes and whisks Justin away for a little giggle time. They have some big fun!

There was a bounce house, petting zoo, pony rides, and a hay ride too. It was a busy place so they didn't stop to see the animals. You know, they have plenty of horses and cattle back at the ranch...

Fall Cooking

2011-10-29T07:26:00.001-05:00

It started feeling like fall this week so I decided that it was time for some fall foods: We made caramel apples and pumpkin muffins. And my very favorite cool weather food - soup! I love winter squash and it's just coming into season. Butternut and spaghetti are my favorite. And the boys really like them too so it works well. I am not typically a recipe blogger, but I thought some of you might enjoy these recipes as much as I do.

Black Bean-Pumpkin Soup (From Healthy Cooking)

2 cans (15 oz) black beans, drained and rinsed

1 can (14 1/2 oz) diced tomatoes, drained

2 medium onions, finely chopped

1 tsp. olive oil

3 garlic cloves, minced

1 tsp. ground cumin

3 cups vegetable broth

1 can (15 oz) solid pack pumpkin

2 Tbsp. cider vinegar

1/2 tsp. pepper

2 Tbsp. bourbon, optional

1/2 cup reduced-fat sour cream

1/2 cup thinly sliced green onions

1/2 cup roasted salted pumpkin seeds

1. Place beans and tomatoes in a food processor; cover and process until blended. Set aside.

2. In a Dutch oven, saute onions in oil until tender. Add garlic and cumin; saute one minute longer. Stir in broth, pumpkin, vinegar, pepper, and bean mixture. Bring to a boil. Reduce heat; cover and simmer for 20 minutes.

3. Stir in bourbon if desired. Garnish each serving with sour cream, green onions, and pumpkin seeds.

My notes: I use chicken broth instead of veggie broth. I don't add bourbon. I garnish with shredded cheese for the kids and they eat it up. I garnish with plain greek yogurt for me and Randy. I have never garnished with onion or pumpkin seeds because I never have them on hand, but they would probably taste good. The pumpkin taste is barely perceptible but it makes it healthy! Being pureed means I can get away with adding tomatoes (not a Travis favorite) and the kids don't even know! Thick soups like this I give my kids crackers to scoop up the soup and that helps them get started eating it. They always end up finishing with a spoon because they like it!

Very tasty soup! Makes about 8 (1-cup) servings.

Sausage and Bean Ragout (from allrecipes.com)

2 T vegetable oil

1 pound ground beef

1 pound hot italian pork sausage (casing removed)

1 large onion, chopped

4 cloves garlic, minced

3 1/2 cups chicken broth

1/4 chopped fresh basil leaves

2 (14.5 pounce) cans diced tomatoes seasoned with garlic, oregano, and basil

1 (16 ounce) can white kidney beans (cannelini), rinsed and drained

1/2 cup uncooked elbow pasta

1 (6 ounce) package fresh baby spinach leaves, washed

1/3 cup grated Romano cheese

1. Heat oil in saucepan over medium heat. Add beef, sausage, and onion and cook until meats browned, stirring to separate meat. Add garlic, cook 30 seconds more.

2. Add broth, basil, tomatoes, and beans. Heat to boil. Cover and cook over low heat 10 minutes, stirring occasionally. Add pasta and cook until pasta is done.

3. Add spinach and cook just until spinach is wilted, stirring occasionally. Remove from heat and stir in cheese. Serve with additional cheese.

My notes: I don't use oil to cook the meat; I use mild italian sausage; I use dried instead of fresh basil; I use regular tomatoes and add the oregano and extra garlic and basil as desired; I use Parmesan instead of Romano cheese. This soup is very tasty! The kids eat it all up! I don't give Justin very much broth so he can eat it with a fork. The sausage makes it a little bit sweet and the spinach is a healthy and good addition of a different texture.

Makes about 6 servings.

Soups are easy and go with anything! Do you have any good soups to share?

Leaf Peeping, Coal Mining, and a Wedding

2011-10-27T14:47:00.000-05:00

When my brother announced his engagement earlier this year and told us the wedding place and date, I got really excited since I LOVE fall in the north! October in Pennsylvania sounded great and besides a little rain, it was perfect!

My mom rented some awesome homes in the Pocono Mountains and out whole family and some friends had a little vacation before the wedding. We had two houses just down the street from each other so one was designated the main eating house and all 17 of us managed meals around the mish-mash of tables that we assembled. Both houses had pool tables and one had videos games and air hockey so the boys had lots of fun. We got there on Tuesday and most of the gang was already there. We spent Wednesday sleeping and hanging out at the houses since it was raining, but Thursday we ventured out and took a coal mine tour since the rain wasn't a problem 250 feet underground!

This was the coal mine we visited. Travis really wanted to go see the mine and of course, by the end of the tour he was ready to sign on and be a coal miner. It's been closed for a few years though (after operating for more than 100 years!) so he'll have to find another location. He decided he would open the first mine in Texas and I had to break the news that you have to mine where the coal actually is. Slight problem...

The yellow train/trolley is what we used to descend into the mine. This is Justin's new "smile" face. I am anxious to see the wedding photos with this expression.

Most of the pictures in the mine turned out well, dark, so they're not worth reporting. Here's a 1,300 pound chunk of coal that was pulled from another mine nearby (I think). It was starting to drizzle by this time so we didn't last very much longer outside. That plus our tummies were growling. Meals were a little off since the people in the meal house were not early risers!

And finally the next day Ami, Uncle Jerry and Thatcher arrived. Travis took our picture. And Ami and Uncle Jerry learned that it's all about Thatcher!

And the boys love Uncle Jerry too!

Travis was so anxious to meet Thatcher. And he wanted to hold him too. And so he did. A lot.

Since our camera is acting up, this is the best group shot I could get. Travis looks a little buried!

And then there was the wedding. It was Uncle Jon and Olivia and it was beautiful. Travis was the "ring bringer" so he wore a tuxedo along with Randy (a groomsman) and I borrowed a suit for Justin. My three guys looked so very handsome so we took some family pictures. (You might see them on a Christmas card coming your way later this year...) Here's one of the little guys. They were so cute. Justin didn't last very long in the whole ensemble, but at least as long as the pictures.

Olivia looked gorgeous and Jon, well, handsome and all. Travis was a ham coming down the aisle looking each way and flashing big smiles. Check out Uncle Jerry as the best man!

The flower girls were antsy and tipped over their baskets of petals. So of course they had to recollect them. Twice.

All the groomsmen and ring bringer: Isn't Travis the cutest ring bringer ever?

Praying during the ceremony: Travis was so serious! My heart was melting.

The reception was so fun. Travis discovered his love of dancing. He wanted to dance with me every chance we got, but he got a little upset when the dance floor got crowded. He told Randy, "Daddy, this wedding changed me. Before, I didn't know I liked to dance. But now I love it!" Justin enjoyed the dancing too. He was more into the dinner than dancing though.

Sunday morning after the wedding we all got together at the meal house and had a little church service. Travis led singing and did a bit of interpretive dance. Residual from the night before maybe? :) My aunt is learning to play the clarinet and she played Amazing Grace for us, after only three lessons. My mom shared some thoughts from the book The Blessing, which I just bought to read. My uncle shared some awesome stories about his experiences of God's protection. Travis recited one of his Bible verses and Randy shared some thoughts about the verse. I have been reading the book Pagan Christianity which describes how a lot of our church traditions actually have pagan beginnings and roots. One of the traditions it describes is the worship service. In my opinion, the small home gathering that we had that Sunday was the ideal embodiment of what Christ envisioned. Everyone sharing and learning from each other, asking questions and being spontaneous. It was beautiful. It clarified what is lacking in traditional services and how much richer small, give-and-take experiences can be.

One of the very cool things about the week was getting to meet my brother Ben's new wife, Iris. They got married the weekend after Randy cut his thumb so we couldn't go to the wedding. Because it was out first family get-together with the almost the whole new family, we took some pictures. Of course, Jon and Olivia weren't there so we'll have to photoshop them in later! The clan (L-R): Randy, me, Travis in front, Justin, Mom, Mireille (holding Thatcher), Jerry, Iris, and Ben. Whew!

I love my family, everyone who was there. Staying in the houses gave us lots of time for talking and being together. And the houses were far from town and the wedding so we got to see lots of beautiful fall foliage during the drives. I wish I could have gotten better pictures with everyone I love so much. (We are so buying a new camera the day after Thanksgiving!) Times like that are so special and we will cherish them forever.

A fun bonus was that we got to fly back to Chicago with our great friend Mary. She used to live in our house in Madison a few years ago when she was in college. (I think I was 6 when she lived with us.) Both boys love her and we enjoyed the extra time together on the plane. We even discovered one fun fact during our trip: She just celebrated her 30th wedding anniversary the week before Jon's wedding and all of my siblings and I were in her wedding! In fact, Jon was the "ring bringer" in her wedding!

Sorry this is so long in coming. After the trip, both boys were severely sleep deprived and so we have been taking family naps in an effort to catch up on sleep. Now I am slightly addicted to naptime and I am forcing myself to stay awake today during nap to do some long overdue computer work!

Pin Removal

2011-10-20T07:44:00.000-05:00

The moment Randy has been waiting for since surgery finally arrived - time to remove the pin!

The appointment began with another x-ray to check the location of the pin. A good idea since Randy has been hammering it in with various hard surfaces throughout the past 6 weeks. Looks kind of freaky, doesn't it?

Then while we were waiting, Dr. Travis did a little doctoring. Assistant Justin stood watching. It was quite the scene!

Next the real nurse came to set the area for the real doctor. You can see the assortment of pin removal devices in the sterile kits up on the table. Travis picked the one he thought the doctor would use, and he ended up being right! Poor nurse got lots of questions!

Randy got shot up with some numbing medicine to make the process less painful. From the look on his face, thee should have been some other numbing medicine before this numbing medicine! It was painful, but before he stopped writhing the doctor had already yanked that puppy out! It's a good two and a half inches long! (We got to keep it!)

Justin and Travis both went with us since it was a late appointment. Justin was upset when everything started getting set up, so we had to reassure him that nothing was for him! The doctor misunderstood Justin's concern, thinking that he didn't like what was happening to Randy. It's hard to explain to someone in a few words all of Justin's idiosyncrasies! Travis, on the other hand, might be slightly traumatized. Nah, he just thought it was cool!

One thing we have learned about this doctor is that he loves big dressings! Randy always walks away with several layers of protection, for which he he is very grateful! This one was only necessary for the night and now he is a a free man! Well, almost. He is supposed to keep from moving it for another week and then he can try out his new thumb. But no more doctor unless he wants to go for OT or unless the graft doesn't hold and his thumb starts drooping again.

So he only has a band-aid on the top of his thumb where the pin was removed and that's it! I still have to button his shirt cuffs, but he's good with everything else. He went back to his regular keyboard at work. (He was using the angled one because his thumbs kept hitting each other.) The pile of medical supplies on our bathroom counter is slowly diminishing. The one funny thing he noticed about his thumb is that the little hairs on the back of his finger (between the joints) are not in the right spot anymore because of being "readjusted". There is one dark one left that looks mighty out of place! I guess you take what you can get!

Post-Op Visit with the ENT

2011-10-19T10:14:00.000-05:00

I know! I am so far behind. I have several "catch-up" posts, so please be patient with me. They are coming.

Last week we went back to the ENT for Justin's appointment post-surgery. Like every other appointment, after the nurse calls Justin's name, Travis is quick to point out that it's not him, it's the little guy. Always thankful for the clarification! After quite a bit of cajoling I got Justin to open his mouth just wide enough for the doctor to see in without a stick. She declared him healed! Justin told her that she needed to listen to his heart (like every other doctor) but she didn't even have a stethoscope with her! (Lungs aren't her area of expertise!) I asked about the size of the tonsils since she had mentioned after surgery that they weren't as large as she had seen in the office. She checked her notes and confirmed that they weren't as large, but that with them being glands they can grow and shrink with or without cause. So that could explain why Justin is more tired some days than others.

Then she asked about sleeping. Randy and I agree that there has not been a significant improvement. I wasn't sure what the next step would be and she said to move ahead with the CPAP sleep study. Given the DS, he likely has complicating issues that make the CPAP an obvious next step. (Large tongue and low muscle tone.) She said she would send a note to the sleep clinic to see if his appointment could be moved up (it's currently set for March).

So we are waiting for a call from the sleep clinic and things are pretty much back to routine. And everyone is healthy! Whoo hoo!

Since Then

2011-10-06T16:41:00.000-05:00

So the boys got sick last Tuesday and I went to work last Thursday night. I have been dying to go to work and have a nice, long, relaxing layover. I did! Whoo hoo! I went to Argentina and I didn't make any plans. I just went strolling and people watched and read Gone with the Wind (for book club).

It...was...great!

I sat in the park and watched the clouds float by and a flag flapping in the breeze and smelled the spring flowers blooming. (You know, opposite seasons and all...) I even grabbed a Mc Donalds coffee with dulce de leche and sipped it casually as I did absolutely nothing. For a whole hour! It actually went by quicker than I thought. I was refreshed and excited to come back. I took mental pictures of the park and decided that could be my "happy place" when I needed a break.

I arrived home and found Randy on the floor with a bandanna tied around his face. After the usual flurry of greetings and demands for presents I asked him if they were playing cowboy or if he was trying to keep germs from spreading. He said the germs thing. Apparently he had gotten sick the night before and so he spent the whole night throwing up.

Great. Are you kidding me?

See, I hadn't slept the night before either and I was counting on Randy to help me survive until nap time after lunch. Instead, I took a quick shower and fed and dressed the boys and we left for church super early so we could avoid the "sick den" as long as possible. The boys didn't go to Bible class, they had to stay with me while I helped greet for the Children's check in station. Then we hurried home before we infected any children at church. I fed the boys at home while they watched more TV. I am pretty sure I fell asleep while they ate/watched. Randy slept the whole time. I had to cancel our small group Bible study at our house since I wasn't sure if we would all be throwing up by that evening.

I was so glad to be able to fall into bed for my nap while the kids napped. Randy was finally awake and he entertained the boys while I finished my way-too-short rest period. After not sleeping all night, three hours just doesn't cut it!

In the end, Randy had some 24-hour thing and so far, no one else has gotten it. I spent the evening cleaning out the bathroom and the trash can and changing the sheets on our bed. It has taken me naps nearly every day this week to catch up. I think I am good now. But nothing else more for a while.

Please!

Better Again

2011-09-28T13:22:00.000-05:00

So today has been a much better day than yesterday. Travis and Justin both made it through the night without any problems. That made for blissful sleep for Randy and me. And Travis is just fine today, although he wants more of the medicine I gave him to drink yesterday (pedialyte). He thought that was pretty good! Justin is a little cranky and we don't have any results from the miralax, so we're keeping at it. We'll go back to the doctor next week to see how his weight is doing.

We did find out the "score" from Justin's OT reevaluation. There are two areas, grasping and visual motor integration. Grasping he went from 20 mo. to 28 months. There wasn't as much progress in that area because there isn't as much to test. The age range of skills jumps from around 18 months to over 40 months. The next big thing he should be doing is buttoning buttons and he can't do that at all, so that stunts his scoring. But 8 months progress in 1 year is still great! And in visual motor Justin rocked! He went from 22 months to 36 months! That's huge! He is really moving along. The things he is working on now is refining some of the skills he has learned. Like he can draw a line, but now he needs to draw it straight from one point to another. (They even use a certain degree of variation to determine if he meets the criteria!) He can cut, but now he needs to cut straight following a line without help. (This takes major coordination to cut with one hand and feed with the other.) So Miss Caroline is very pleased and is anxious to see how things go from here!

2011-09-27T20:53:00.000-05:00

I think I am ready to say enough is enough. Or "I give". Whichever will make the madness stop!

Justin has not been sleeping well, and I was sure it was part of his ploy to get me to hold him because he slept great while I held him. I did not sleep so well. This morning he woke up (around 5 am) and started gagging like he was going to throw up. He didn't, but I noticed that his belly was really hard. He always has trouble with constipation and the pain meds he has taken for his tonsils only made it worse. We have been using our usual methods to help him, but this was beyond, so we opted for more extreme measures. That started things going and Justin dozed in my arms between having to push things out and gag some more. He eventually threw up several times and blew out more diapers than he has since being a newborn. So, we called the doctor.

The doctor was very busy and we waited over an hour past our appointment time to see him. During that hour we watched half of "Finding Nemo" and Justin made some more diapers and napped some more. The doctor checked Justin and didn't find anything, but he did notice that his weight is down nearly 2 pounds in the past 10 days. (Using the same scales we were on when we made his vomit run to the doctor between the 2 surgeries.) That worried him so he sent us for a belly x-ray. While we waited for that Justin blew out 2 more diapers and dirtied his shorts, socks, and my shirt. I had more clothes for Justin, but not me... Yuck!

The x-ray showed lots of stuff needing to come out, but no obstructions or any other problems. So we went home to clean up. Travis was very patient through this whole process even though he was ready to be done after the first doctor. We got home and Travis said he didn't feel well. I gave him juice and a bowl and went to fix some lunch. A light lunch for sure. Justin made another diaper (#7) and while I was changing him Travis yelled that he had thrown up. Red juice all over the white couch. He forgot about the bowl.

I wiped up the couch as best as I could and left lunch right...where...it....was.

Then I collected Travis from where he was...

And Justin from where he was (he was not climbing up onto the chair, this was how he settled down to rest)...

I whipped open our bed and laid all three of us down and we took a nap. The boys were asleep in 2.5 minutes and we slept beautifully for 2.5 hours. In time for Daddy to get home and save us. Or get sick himself, not sure which just yet. Anyone know where we can pick up a good couch cheap?

So Much Better

2011-09-26T16:13:00.000-05:00

Justin is doing so much better. Friday dinner was the first meal he ate entirely in his own chair. He still has episodes of clinginess and cries more than usual, but they are less often and not so long. He is starting to recover some of his playfulness and silliness. We were really missing that!

Justin also caught on to the idea that when he doesn't want to do something, he just says that his throat hurts and then he gets snuggles and he doesn't have to do it. This usually involved eating. He has gotten lazy and he likes for us to feed him. So we put his plate down in front of him and he points to his throat and whimpers and then we set him on our laps and feed him. He won't even hold his glass sometimes, the little stinker! It also carries over to brushing his teeth and putting on his clothes. Figure out how that makes your throat hurt!

He went to some therapy last week (not speech) and it turned out it was time for an OT reevaluation. I was a little skeptical that it would go well, but Miss Caroline said she would try and see how he did and wait if it was too much. Well, he did so well that she couldn't finish. Remember, she goes down her list of activities and she gives him either full, partial, or no credit for doing the things she asks. When it's three in a row of no credit (he can't do it at all) then she stops the test. He kept doing so well that he would be able to do one of the tasks and not skip three so she could stop. He has a smattering of skills up to 41-44 months! He's not even 42 months yet! She has to finish the test this week and then score him. She guesses he'll be in the mid to upper 30s by the time she figures it all out. How cool is that??

I am so glad Justin is doing better when he's awake, but the nights have not settled down yet. He is still not sleeping well and waking up very fussy. We go back to the ENT the middle of October and we will see how he's doing by then. He still has the appointment for the sleep study for the CPAP machine, but we might need to go back to the sleep clinic (doctor) for reevaluation now that his tonsils are out. We'll see how he does when he is completely healed. Really soon, I hope!

The King of Small Odds

2011-09-22T14:41:00.001-05:00

So Justin had about a .3% chance of being born with DS and it happened. He had about a 1-3% chance of having his tonsils open up and bleed when the scabs fell off, and that happened too.

Here's how it all happened...

Sunday night I went into Justin's room around midnight and I noticed something dark on the sheets. Justin also seemed to be breathing sort of watery so I took him into the bathroom to blow his nose and wipe his face. When I looked at the kleenex, it was dark too, so I turned on some lights and saw that it was blood. And then I saw that his face, PJs, lovey (affectionately known as "bee") and hand were covered with blood too. I went to wake up Randy so we could pow-wow and decide what to do. That was easier said than done. It took four "Randy"s of various volume levels and an arm shake to wake him. He held Justin while I searched for the ENT phone list sheet. I found it and made a call to the on-call doctor. She said that in a small percentage of cases when the scabs fall off, around 7-10 days post-op, the tonsils start to bleed. So she said to take him to the ER. Blood was running out of Justin's mouth down Randy's shoulder while I was talking with the doctor, but he was calm at least. I asked if we should come to the hospital where we had surgery or if the closest place was best. She said we should come down to them if we could make it.

So then I had to find someone to come spend the night with Travis. Again. The second time in less than a month. Does everyone go to the ER as often as we do? Is this normal???

Our awesome friends came (same ones as before...they are going to start blocking our number, especially between the hours of midnight and 6 am) and we were off. Justin was fine so we decided to make the trip down to the surgery hospital.

The ER brought the usual tests and a stick down the throat to check his tonsils. Quite unsuccessfully. The ER docs called up to the ENT group and a doctor from there came to try his luck. At this point I started to get mad. Not at the doctors, but at God a little bit. Justin was screaming, crying, looking at me pleading for me to make them stop and I couldn't. I mean, it was what they needed to do to help him, but it's just not right. There are pokes and prods and tests that Justin needs, but this one was not one he needed. This was not something that Justin should have needed to go through and yet, he did. Why couldn't this have been spared? That was my inner discussion/argument with God through this whole ordeal.

Here's the ER. We got there about 2 am so between doctors he fell asleep. Do you like my just jumped out of bed look?

The doctors wanted to know how much Justin bled. That's hard because it was spread out everywhere. And they didn't know how much he had swallowed. If he had swallowed a lot there was a high likelihood of him throwing it up. Several doctors made sure we knew how bad swallowing blood makes the stomach feel and that it might look really bad when it comes back up. I was ready to throw up by the time they were done describing it!

It was determined (by blood test, another needle stick) that he hadn't swallowed very much. (Thank you, tummy sleeper!!!) The bleeding appeared to have slowed so they decided to monitor him and wait for his doctor to come in in the morning. Fortunately, it was her surgery day so she would be there early. They started an IV and began giving him fluids, which was good since he was barely above the dehydration line. We got into a room around 4:30 am and we settled in for a little sleep. Okay, Justin and I slept, Randy watched us and played on the Ipad.

Then during 7:30 rounds they stuck another stick down Justin's throat and found the bleeding had slowed, but still trickling so it was determined that he was in for another surgery to recauterize the spot that was bleeding. The doctor said it was quick and easy and after a couple hours in recovery we would be on our way. We just moved from the room to pre-op where Justin fell back asleep. All the various doctors made their pre-op visits. I asked the nurse if they could put the heart monitor stickers in the same spots as before since I hadn't gotten them cleaned off yet. She offered to clean him up while he was passed out. I enthusiastically agreed! And then for the second time in a week, we handed Justin over for surgery.

We rushed out for some breakfast since the surgery would only take about a half hour. We needed some caffeine! I knew my lap would be called into action and my hands would not be my own for a while so needed some sustenance.

We met with the doctor after surgery and she said that everything went well and this should be it. The chance of recurrence was very slight (yeah, whatever!) She just wanted to keep us for 12-24 hours to make sure he was okay. What! We thought we were out of there!! When we said that everyone had said "easy, out in a couple of hours" she looked shocked and said that she doesn't do it that way. Okay, so we're grateful she's cautious, but bummed that we now have to start planning for what we're going to do with another day in the hospital and our other child who think we abandoned him again!

Recovery went well. Justin found the most comfortable position to be with his chin planted firmly in my chest. Ouch! The things you do for your kids, right?

We got back to our room and enjoyed some TV time. They had changed Justin out of his nasty PJ top, but the gown they found for him was 4 sizes too big, so we had to change him back into his former bloody attire. And by this time Bee had blood, tylenol, apple juice, and spit up on it. It pained me to give it back to him, but we weren't going to make it otherwise. Randy went and bought me lunch and Justin had some jello. Wouldn't touch the applesauce...

We hung out until around 6 pm and we had seen no doctors so we asked our nurse if there were going to be rounds because we were ready to go. She looked surprised, which led me to believe that she thought we were spending the night. We really wanted to go so we asked if we maybe could see a doctor. We were getting stir crazy in our room so we walked the loop on the floor. Randy was pole master of Justin's IV and I was baby holder. After a scrape on the heel (mine!), Randy got the hang of it and we were cruising. Justin wanted to keep going, but he was getting heavy and he refused to walk. So we sat in a chair in the hall and waited for the doctor.

By this time, Justin was screaming at everyone who came by and even looked his direction. He yelled at the PCAs who took his temp and BP. He yelled at the nurses, and even the poor cleaning people! Of course, he was due for one more stick in the throat before we could leave. The doctor came and did his obligatory throat check, determined we were okay and was ready to let us go, until we mentioned that Justin had not drunk anything all day. A half of a tiny juice box. He was concerned but I said that he wasn't going to drink much during the night so we might as well go home and see if we could do better there. (Where he wasn't yelling at everyone...)

The doctor called our doctor and she agreed so we left the hospital close to 8 pm. Defintely our longest ER visit yet. We took our bloody selves home, cleaned up, watched Monday Night Football, and went to bed.

Justin has done much better since then. He ate 2 hotdogs for lunch on Tuesday and he drank two cups of water. (The threat of a return trip to the hospital might be slightly motivating...) We have definitely turned the corner. The doctor said that it wasn't like starting recovery all over. By the end of the week he should be close to back to himself. I have high hopes, again!

And Travis? Of course he woke up shortly after we left and cried himself into a fit that we abandoned him again. Our friends calmed him down and brought him downstairs and let him lay on the couch. Now it was Ms. Tina and Mr. Rob who came over this time, last time just Ms. Tina. So this time Travis had new audience and after he woke up some he was ready to get up and play. Ms. Tina finally had to say "Mr. Rob, it's bedtime!" Travis slept on the couch and they got the floor!

Such...good...friends!

We are none the worse for wear from our little adventure in the hospital. I think Justin may be scarred though. He usually does so well with all the doctors and he is the best "ahh"er but there was no getting him to let anyone look in his throat. I think it might be permanent. We'll see when we go back for our post-op follow up next month. We did get one good thing out of this trip: a real stethescope! It was in our room when we left and Randy asked the nurse about it and she siad that we could have it. That kind of made things all better with Travis. He had Justin laying on the couch listening to his heart. Then he flipped him over to listen to his breathing. Justin played right along. Maybe that's the trick, let Dr. Travis get him to say "ahh"!

Tonsils & Adenoids Recovery

2011-09-18T08:36:00.001-05:00

One word: Brutal

I honestly thought that Justin would do better than Travis because Justin seems to have a higher pain threshold. But Justin has been worse by 1000 times. I think it's because Justin can't talk and tell us what is going on. We explained that his throat would hurt and that it would hurt to swallow for a while, but that it would get better. He ate a couple of popsicles in the hospital and some jello and applesauce, plus some scratchy foods, so I really thought it would only get better. If he was eating that so quickly post-op, then by the end of the week we would be golden.

Not so much.

He has been screaming at the top of his lungs to the point of near hysteria and no amount of consolation helps. I was up with him most of the first three nights (counting the one in the hospital) and he was exhausted all day long, taking naps nearly every morning and afternoon. But the morning naps were while I held him and the afternoon naps started in his bed and ended with me holding him. He whined every mealtime, even after we knew his throat didn't hurt because he was eating chips. He would whine so much that I have had to hold him during meals and even that doesn't help. I believe we have only gotten the bare minimum of liquids and nutrients in him to avoid the ER because of dehydration.

We went to church Wednesday night because I wanted to go to class and I wanted Travis to get some attention. Justin sat with me in my class and did great! I was answering a question and the next thing I knew, Justin had his hand down my shirt! That was quite the fun game for a while and I thought we might be doing better, but it didn't last.

He started vomiting on Friday and so we had to go to the doctor who said that his scars look great and all she could do for him was give us some anti-nausea medicine and warn us about dehydration. Believe me, he can still crank out some major crocodile tears so we feel like we're still safe. Randy got home Thursday and I was looking forward to some relief, but no. Justin won't go to Randy so the only one who has benefited is Travis because now he has someone to give him some attention.

Justin does feel better between meals, but the minute we bring out food he starts whining and complaining. That's when I really wish he could talk. I have tried smoothies, jello, ice cream, popsicles, juice, water. Nothing is a winner. I keep praying that I could understand what's going on but so far I got nothing. I don't think he's in pain, but I don't know why all the protesting.

It has been a bad mommy week. I am so tired that I am getting as cranky as Justin. I feel bad for him, but I just want my sweet cuddly boy back! Travis took a solid week to get back to himself, so I have high hopes for next week.

Tonsils & Adenoids

2011-09-12T18:31:00.016-05:00

Surgery #2: I am so impressed that it took three years before Justin needed more surgery! It did not take long for us to get back into hospital mode. It's a little funny because today has been a mix of flashbacks from both Justin's heart surgery and Travis' tonsillectomy last year. Same surgery as last year, but the same child/hospital stay as 3 years ago. I even got a snuggle/nap with Justin like we did before! But I am getting ahead of myself...

We had to be here early at 6:15 to check in for surgery. We are in the other day surgery area, opposite of the one we were in last year with Travis. It's a little smaller, so we got to know the other families while we were waiting.

Here's some pre-surgery pictures. When we were prepping Justin for surgery, my mom suggested that we find out if Justin would get some special pajamas to wear like Travis did last year. I actually asked the person who called with our surgery time and she said no, so I was a little disappointed. So I had to come up with some other "cool" things that Justin would like about surgery. It really all comes down to ice cream for him. But then he ended up getting PJs so it was cool for him too. The other kids were too young to catch on to the "coolness" factor.

Justin went in a little after 8:15 and he was out by 9 am. He was more restless than Travis and it took longer got him to calm down after medication. He did finally go to sleep after the medicine kicked in. They didn't even offer Justin a popcicle, which was fine because he wouldn't have touched it. He was one whiny baby!

We got to the room around 11 am after a slight delay. Our recovery nurse was very anxious to get rid of us. She called several times to check on the room. It turned out they were replacing the TV and then they had to touch up the paint around it, so they had to wait for it to dry! It turns out I was really glad there was a TV since I didn't get out from under Justin for most of the next 18 hours. It was me and the TV remote!

And a little napping too. Which was good since we only got about 5 hours sleep the night before!

The reasons they wanted to keep Justin overnight was because he is young, he has DS, and the reason for the tonsil removal was sleep apnea. The tonsil removal can cause swelling and that can cause the apnea to increase. So they had an IV hooked up keeping him hydrated and a pulse ox on to monitor the oxygen levels. The afternoon was non-stop alarm madness! Both the IV and the pulse ox were beeping and Randy just stood there to watch the monitors and silence them as necessary. Randy finally had to leave to head to the airport for a conference out of town. So that left me to listen to the alarms since I couldn't reach them (holding Justin and all...) In the evening the nurse finally decided to give him supplemental oxygen through a cannula. By this time, the activity in the room had gotten to Justin and he was nearly beside himself every time the door opened. It took both of us to get the cannula on him. So he had O2, IV, and pulse ox on his nose, arm, and toe. There was no moving him very far!

They turned off the O2 around midnight and while the alarms continued to harangue us, Justin did well enough to get released in the morning. The alarms were even in my dreams during the 2 1/2 hours I slept! Good thing we were up for 6 am rounds! The nurse and I managed to remove the IV and the tape on his face from the cannula, but the heart monitor stickers stayed on. I took quite a bit to get them off of Travis last year too. And the tape residue lasted at least a week. Apparently it's uncomfortable to rub on boys' chests with nail polish remover. Who knew?

Check out our tiny pile of stuff compared to our Ike pile!

I spent the whole time having flashbacks to heart surgery. The first thing that came to my head was the song " As the Mountains Surround Jerusalem". I laid there, surrounding Justin as he was sleeping, and thinking how faithful God has been surrounding us the past three years. I love being able to look back and be reminded again and again of how awesome God is and how he works in ways we can't even imagine. God is so good! And Justin is healing perfectly well (as can be expected). Don't expect too much from me this week! We are doing much snuggling!

Another Anniversary

2011-09-12T06:00:00.000-05:00

I know, I know! Terrible picture!! We could not find anyplace with enough light to get a decent picture of our thirteenth anniversary dinner. We could not make the flash go off (we have a lousy camera!) So we will have to try again another time. I took three pictures just like this, and this was the best, so that's all I can do. Randy was impressed that all three pictures have both of our heads in them, and centered! The restaurant in the background is the place we ate. It was tasty, but the company made the evening. Both of us found awesome cards for each other, which is all we ever exchange for the occasion. I love my card collection! Randy writes the best thoughts, and if anyone else were ever to read them, he makes me look much better than I really am. What a sweetheart!! Thirteen is an odd year to celebrate, but I know the time will go so fast that it will be 25 before we know it!

Today is also Justin's tonsillectomy, so we're planning another hospital stay to coincide with our anniversary. At least we will never forget when surgery is. I will try to keep updates coming, but I don't have any way to upload pictures, so you might have to wait until we get heme for that.

Stitch Removal - Slight Gross Out Warning

2011-09-11T15:57:00.000-05:00

Randy got his stitches out on Friday. He was SO ready! They were itching and pulling and he wanted to scratch his thumb so badly. Since I had forgotten to get pictures up until this point, I took advantage of the opportunity to get some prime shots. We took Travis with us because it was Mommy/Travis Day and the appointment was during nap/rest time. The first thing the nurses said was, "He looks like your Mini Me!" Yeah, we know. Travis is the hit wherever we take him.

Here's the "before" picture. You can kind of tell the stitches were blue. Randy wears a band aid with a little cotton on the end of his finger so it doesn't hurt quite so bad when he bumps the end with the pin. That has really helped, but he still winces when it's thumb vs. car door.

Travis was right in there watching her pull out the stitches. He thought it was very cool. The nurse was very patient with his questions. (She has a 4-year old daughter!)

The doctor had her put steri-strips across it for another 10 days just to make sure it doesn't split or get infected. He has another 5 weeks with the pin and thumb splint and then he'll start OT to rehab the thumb. He thinks he will get some movement back, but it will not be complete. Please pray it's so close to full range of motion that he doesn't even notice.

He's the "after" stitch removal picture (before steri-strips). Doesn't it look great?? The bottom is closed, but the side and the curve right under his nail are still a little open. It wept/bled some and it has some crusties. But he is well on the road to recovery! He can shower without wrapping up his hand and in a week he can immerse it in water. Randy is ready to give it a good scrubbing!

More Appointments

2011-09-08T21:41:00.000-05:00

Yesterday I realized that I will have attended, by the end of this week, 5 doctors appointments and 1 surgery in the past two weeks.

Yikes!

But let me say, without having gone to Randy's follow-up, stitch-removal tomorrow, that they have all been really good news!

Last week started with Justin at endocrine. It's been almost 5 months since we have been there and we did the blood work before we went this time (usually it's after). She was very pleased with Justin's growth - 2 cms and 1.5 pounds, and I forget his head measurement. She felt he was doing well, and his T3 and T4 levels are still in range, although the TSH level went up again after going down last time. His growth didn't seem very significant to me, but she felt like things were still good, so we're good for another 4 months.

Then we went to check Justin's orthotics. Sometimes I have to take a picture of the play area they have set up in his office. It is Travis' favorite of all Justin's doctors. I have considered just going there to play sometime because both boys love it so much. The orthotist is a Christian too, and I think he is great. Well, he said that Justin's feet haven't grown so he just put on new velcro straps and we were good for 6 months. Then it took 10 minutes more to get the boys out the door. Not sure how the office staff gets anything done.

This week Justin had audiology appointment and it went fabulous! We saw the audiologist who we haven't seen since Justin's ABR test when he was a baby. She was so sweet with Justin. She checked and there was no fluid behind his ears so she doesn't think that tubes are warranted - Yeah! And then she did the "big boy" hearing test and had Justin put pegs in aboard every time he heard a sound. That's like combining Speech and OT and Justin did beyond fabulous. He even heard (and responded to!) some of the really quiet sounds. Travis and I were both in the sound booth with him and Travis kept wanting to give Justin the answers and tell him when to put in the pegs. I finally had to hold him and clamp my hand over his mouth! He didn't quite understand that it was a test and we needed to know if Justin could hear, not him! He was mad at me at first, but by the end he understood. Then the audiologist asked him to pick the orange peg and I had to tell her that he doesn't know that color yet. After I told her what he does know, he did just fine. Then she did body parts and he nearly fell out of his chair trying to show her his shoes! I thought it was pretty cool that he did so well with the "big boy" test. She declared him completely able to hear and good to go for another year. Whoo hoo!

Those 3 visits, combined with Randy's two, plus surgery, have filled up my days. And next week is Justin's tonsillectomy. I went to our new Wednesday night Bible class and the subject in "Balance". Boy, I could use some of that!

(P.S. Happy Three-Year Anniversary to Justin! Heart surgery three years ago today! Can you believe it?)

Prayers

2011-09-04T19:40:00.000-05:00

Justin has been "praying" before meals for more than a year now. He folds his hands, bows his head, babbles, and then stops for us to say "Amen" for him. Last year when we went to visit my sister and her husband, Justin prayed and my brother-in-law just about fell out of his chair! Justin prays at every meal and he insists that we all do as well. His prayers are so sincere and I love how he folds his hands so sweetly.

Well, this week he was praying and he made the signs for "mommy" and "daddy" and said his word for "Travis" and I promise you he was praying for us! I was touched! You cannot deny that Justin knows what is going on!

Question

2011-09-03T06:15:00.000-05:00

A conversation with Travis this week:

Travis: Mommy, do you and Daddy fight ever?

Me: Yes, sometimes we do.

Travis: What do you fight about?

Me: Well, sometimes we just disagree about things.

Travis: Like if you want to watch Peter Pan and Daddy wants to watch Toy Story?

Me: Yes, kind of like that....

Updates

2011-09-02T21:43:00.000-05:00

Here's a few family updates and progress reports:

Travis lost another tooth this week. Now he's down the two teeth bottom, front. Big gap. He's just pleased with the money he's netted so far.

Justin moved up to an open cup this week. He's been able to do it for a while, but I've been putting off making the move so I wouldn't have to clean up so many spills. He's good at drinking, but he doesn't tip the cup far enough down after drinking. So I don't put more than about 1/4 cup in each time and then refill, refill, refill. I'd rather do that than clean up, clean up, clean up. He's doing really well! I haven't had to clean up very much at all.
Justin also is making great progress walking up stairs. We have a staircase with spindles (and so does therapy) so he can hold at whatever height he needs. He sometimes forgets to advance his hand before taking steps, but he remembers with just a little help.
Randy is healing well. We had to make a trip to the dr. this afternoon because the dressing was getting really loose. They cut it off so we got to see it for the first time. It looks really good! They cut from the base of the thumb up and around where he cut it and then pulled it around to stitch it. The stitches are huge and blue! And you can see the tip of the pin that's in his thumb. He said we can just leave it exposed like it is. Randy's bumped it a few times and it smarts. I believe him! They gave him a splint to wear and some gauze to wrap around the thumb under the splint. We have experimented with a few other dressings for underneath the splint and that gives him more cushion so it doesn't rub quite as much.
I am doing just fine! The pressing needs are being met and for now, that's all that matters. God has been so good. I don't usually get much "girl" time, but I think God knew I would need it so it just worked out that I have had several evenings out with my friends this past week that have been so refreshing and encouraging.
Travis' prayers are usually very rote, but this evening he thanked God for healing Daddy's thumb today and for taking care of him and how He knew that this would happen even before He made the world and He planned for it to be okay. So cute and honest. Travis always is very concerned with bad things happening and so last week I talked to him about Job and that made me realize that none of his Bibles have that story in them. What a shame! That's hugely important for little kids! And then guess what his lesson was about this past week in Bible class? Of course, it was Job. I am so in love with God's timing!

Surgery

2011-08-30T21:57:00.000-05:00

Randy was scheduled for surgery early this morning and everything went very well. It only lasted about an hour and no complications. They didn't have to do any grafts! The surgeon was able to reconnect both the tendon and the skin without cutting anything else. He said that it is going to be tight, and he might not have complete range of motion, but it was a much easier fix than was expected.

I got some pictures to make up for none from the ER. Here's the "before" pictures:

And here's the "after". Randy was so adorable asking the same questions again and again. His nurse, Janet, was so patient and answered all of his questions. I have so much respect for people who can do jobs like that. She did her job very well!

Check out Randy's styling blue socks! They looked good with his sandals.

We set Randy up on the sofa with his pillow and ice packs. Justin wanted a pillow and ice pack too! (He is just wearing his diaper because he had an accident at therapy. He did great the rest of the day going to the bathroom though.)

Randy is starting to get feeling back in his hand and it's not feeling very good, but the pain meds are helping. He goes back to the doctor next week to see how he's healing. Thank you for your prayers. Randy's doing fine!

Do Over

2011-08-29T19:04:00.001-05:00

This week has been one we wish we could do over for sure. It has not turned out at all like we expected, hoped or planned. I already told you about Randy, but then yesterday we had another set back. My brother got married yesterday, but we didn't go because of Randy's hand. So we had some unexpected family time! The lawn needed to be mowed and I had planned to wash the car, and then we were going to be free. So I gave Randy a list of what needed to be done inside, and I went outside. Justin went with me and Travis stayed inside, with strict instructions to come get me if Daddy needed me. In less than 5 minutes, Travis came running out and yelled, "Daddy needs you!" I grabbed Justin football style and dashed indoors.

He was up in the attic, pouring bleach down the A/C drain to unclog it. (Something that we need to do every few months, especially when the a/c runs all the time.) He was adjusting his feet to be able to pour the bleach down the drain, when you guessed it, he stepped right through the ceiling of Travis' room. And in his floundering to prevent falling completely through the ceiling, he grabbed the bottle of bleach and it fell straight through the hole. It caught the corner of Travis' dresser and splashed all...over...the ...floor. And then it poured out the rest of the completely brand new bottle (minus about 1.5 cups) all over the carpet.

I rushed into the room and grabbed the bottle of bleach and then realized that I was standing in bleach and everywhere I walked I would be spreading it. I accepted that the carpet was ruined, slipped into the bathroom right next door with as few steps as possible, washed off my feet and ran downstairs to grab all the rag towels we own. I paused only long enough to instruct the boys not to come upstairs under any circumstances. The fumes were overpowering!

By the time I dumped all the towels on the floor, Randy had made it out of the attic and he was assessing the size of the hole he had made. Apparently it was close to the site of a previous repair so the hole ended up being HUGE compared to the size of his foot. He set to work figuring out how to close the hole (temporarily) and I rescued Travis' blankets that were in a basket surrounded by bleach. I think they are all safe, but the wicker baskets are a slightly lighter color around the bottom edge now.

Randy decided to screw the sheet rock back into the ceiling until we can get back to fixing it. So he somehow managed to do this with only one hand (see previous post...). I was very close by and praying that this clean up would not somehow become the third incident in Randy's string of bad luck. He did a superb job and then we taped up what was left. I cannot believe that packing tape is holding, but so far, so good!

I attempted to sop up the bleach, while at the same time trying to keep my feet dry so that I wouldn't spread bleachy footprints all over the carpet. Fortunately with the bathroom next door, as soon as a towel became drenched, it was tossed into the bathtub. Once the damage was done, there wasn't much else we could do! Now all our rag towels are white!

In the midst of clean up, I got a call from my father-in-law. "Whatcha doin' ?" His favorite call opener. "Cleaning up the mess from where Randy stepped through the ceiling of Travis' room." I said, attempting to sound very casual. "WHAT?!" I quickly summarized what was happening and he offered to come help us. Not really sure what else to do, I agreed.

They both came over and it was decided that the carpet where the bulk of the bleach was poured needed to come out to ensure that it wasn't seeping through the floorboards eventually to come dripping into our bedroom below. So the guys ripped it out. Then Travis and Justin got to help pull out all the staples. I am not sure all what happened during that time, but there was a whole lot of giggling. And this was the end result:

Here's the "after" from the ceiling. The before was much more dramatic, but I forgot to take a picture in the chaos.

And while I know Randy wishes he could get a "do over" for the day, it really isn't all that bad:

Randy did not fall all the way through, requiring another trip to the ER. Now that would have been embarrassing!
Travis was inside prepared to come get me, just in case. He did awesome!
This hole, plus the holes caused by the pipe leaks from earlier this month, means we have enough sheet rock repair that we can justify hiring someone to do it. Yeah! Any names of good sheet rock repairers?
There are no bleach footprints outside of the bedroom!
The fumes were nearly unbearable while we were fixing the ceiling. Cutting out the carpet made the room "sleepable" again, which was good because Randy's parents spent the night last night after their A/C went out! I love being able to help someone else out after all the help we require!

It's really all good. We have a few more expenses than we planned for at the beginning of the month, but we are making it! Everything is safely and adequately patched so we can sort through and decide what comes first. Actually, we know what comes first: Randy's hand, tomorrow morning bright and early. After he's healed, we can decide what comes next. Please pray for him tomorrow, and me too! Thanks!!

Good Intentions

2011-08-25T20:16:00.005-05:00

When Randy mows the lawn, I am usually working so the boys go outside with him and play while he's working. Travis likes to find things and get creative in playing with them. So a few weeks ago he found a stick that looked like a knife and somehow the talk came around to Randy whittling the stick into a wooden knife for Travis. This was right before vacation and Travis was so upset that he would have to wait until after vacation for his knife. So this week Randy started working on it. He decided that since he had a little more time, he should use something a little more substantial than the stick that Travis found. So he found a piece of scrap lumber in the garage and cut it down to the size he wanted.

The whittling project itself lasted exactly two nights. The project ended on Wednesday when Randy sliced open the top of his thumb and we spent the night in the ER. I called a neighbor to stay with the boys (they were already asleep). Randy was in a little bit of shock and I never actually saw what he did until the doctor did a little coaxing to get the cloth off his hand. It wasn't bleeding very badly by that time, but there wasn't much skin left to do any bleeding. He cut out a chunk the size of a large thumb nail! Randy wouldn't look, so I checked it out for us both. Wouldn't you know it, I forgot to bring my camera! I was so mad, but that wasn't really my thought when I was trying to get out of the house. Sorry... After a quick tetanus booster, they gave him some antibiotics, irrigated and dressed the wound and gave us directions to visit a hand surgeon the next day. The doctor was concerned that Randy couldn't move his thumb up. The doctor thought there could be some tendon damage.

While we were checking in at the ER I got a call from our neighbor who was staying with the boys and she said that Travis had woken up and he was very upset and inconsolable when he woke and found out that we were gone. She spent most of the time we were gone telling him stories of nice happy places, praying and trying to convince him that we were coming back. He threw around the word "abandoned" a few times to describe what we had done. It was way more work than what we ever thought "staying with the kids" would be! Travis didn't even fall back asleep until about 11:45 pm. (He did sleep until 7:30 the next morning though!!!)

Ok, so back to Randy: After we loaded up on pain meds and antibiotics at the 24-hour pharmacy, plus a Wendy's Frosty to make the pain meds go down easier, we went home. Randy mentioned that we should be sure to look for the part of his thumb that he cut off so that Travis or Justin didn't accidentally find it the next morning. Good thinking! I found the chunk of skin still stuck to the blade! We did a quick clean up of the accident site and went to bed, ready to get up early and start calling the doctor as soon as he opened. My many years of doctor-appointment-making skills were to my advantage as we snagged a perfect slot after lunch. :)

The morning brought the challenge of the shower and getting dressed with one hand. Randy bumped it a few times and it nearly sent him through the roof! Poor guy! He even rode along with us to therapy and to Justin's blood draw (we go back to endocrine next week and the doctor wanted another thyroid reading before the appointment). Then it was time for his appointment. We had to explain what "whittling" is to the nurse. They did an x-ray to make sure he didn't cut or damage the bone (he didn't) and then we met with the doctor. He said that Randy did a really good job of cutting his thumb and that it was a tough case because he cut all the way to the bone in a scooping motion (kind of like, when you whittle...) and so he actually cut out a section of the tendon. When it gets that close to the end of the thumb, the tendon is very thin and fragile and so he can't just pull it back together and stitch it. It will simply pull right out. Instead he'll have to graft in a piece of tendon from his wrist. As for closing up the hole in Randy's thumb, the surgeon cannot graft skin he cuts from another part of the body over the bone and cartilage that is exposed because it will not take. It has to be "live" skin that he cuts and stretches around from the rest of the thumb. He will then be able to graft skin lower down on his thumb over the muscle that he exposes while stretching the skin. Pretty intense, huh? And he plans to pin and immobilize it because the repair will be so delicate that he doesn't want it moved for several weeks. By that time, scar tissue may form so firmly that it may not even bend at that joint.

That means surgery on Tuesday and a very long, painful recovery process. So until then, he is brandishing a splint and some major gauze wrapping. He is already tired of it. He said that buttons are nearly impossible and he contemplated wearing elastic waist-banded pants to work on Monday. I am pretty sure that's not in the dress code!

I want it noted for the record that in spite of my many incidents with knives, I have never required a visit to the ER, much less surgery. My clumsiness with knives has become the brunt of many a joke, but this time it's not me! I have had to awaken Randy to help bandage my hand after cutting myself washing our brand new steak knives, I have splattered blood 360 degrees around the kitchen, narrowly missing Randy standing right next to me, and I have various scars from knife slips and fumbles, but never did I do anything this good. You know this means our children are banned from knives forever. They are likely to lose a limb with our history!

(Travis took the picture!)

Visiting Wisconsin

2011-08-23T15:58:00.004-05:00

It has been a long time since we have taken a long trip to Wisconsin to visit my relatives and spend some quality time visiting and relaxing. Now that my mom is back and her treatments are completed, I thought it was time to fix that and make it a vacation. Once we started talking, we realized that it has been more than 6 years since Randy has been to WI, so he was well overdue for a visit. He said that he was protesting since he told me that he never wanted to go up in the winter and the last time we made him go for Christmas and there was a huge snowstorm. He's from Texas; I can't blame him!

In spite of everything, I got all four of us up to WI in the midst of a Texas heatwave so the efforts were well rewarded. We played outside and enjoyed the sun all day long. We made out first stop at my cousin, Kurt's house. He and his wife, Mary, have one beautiful daughter, Lexi, who we haven't seen since they visited us last February. We started the visit with a walk and a trip to the playground.

It poured rain the night before when we arrived so the playground was incredibly damp. Of course we didn't bring anything to wipe off the equipment, so Justin sacrificed himself and went down the slide first to clean it off for the rest of the kids.

Lexi finished up the job.

After that, Justin's shorts were so wet that he just got stuck whenever he went down the slide. This is a true to life picture of how fast he went:

All three of the kids had a great time playing. It didn't take long for them to get comfortable with each other. They played like old friends!

And then began our fascination with bugs. Right before we left Texas, we read the book A Pocketful of Cricket and Travis decided that he needed a pet bug. Thus began the quest. He found a grasshopper and enlisted Kurt to catch it for him. The one problem was that he refused to touch it and grasshoppers are not known to sit still for very long. So it disappeared quickly.

Justin and Lexi made friends too. They are a good pair.

Travis found his favorite playground toy: a sand digger!

Then we went home and on the way found a caterpillar. I got another pet request and a refusal to touch so after watching it crawl up and down Kurt's, Lexi's, Justin's, and my arm, we put it safely in the grass and continued home. Then Kurt blew up the bounce house and the kids jumped themselves silly while Kurt and I tried to sit and talk. (Mary was working.) It's hard to take pictures of three kids bouncing!

After nap, dinner, and a little more bouncing, Kurt got a fire going and we roasted marshmallows for smores. We could never do this in Texas! Between the fire ban and the 100+ temperatures there is no way we would stand around a campfire in Texas in August!

I decided to let Justin have a smore (even though it has wheat) because he was refusing just the marshmallow and I figured he wouldn't eat very much of it anyway. I was wrong. Do you see that tongue coming out of his mouth? That's a "Ooh, this is tasty" sweep over the top lip. He polished off the entire thing. Lexi barely touched hers. Figures.

It's hard to see, but if you follow the stick all the way up, you can see the perfectly toasted marshmallow. Not his doing by the way. Kurt makes the perfect mallows. He has way more patience than the rest of us.

On the way back inside to throw all the kiddos into the bath Kurt spotted another creature. I think he called in a tiger striped frog, or something like that. By this time, Travis worked up enough courage to touch, but not hold. Justin thought it was pretty cool! The next morning we found tree frogs climbing up the picture window in the living room. Mary captured one for Travis and he touched it again. But it was pretty jumpy!

Day two started out with a visit to the "zoo" on the way to get Daddy from the airport. "Zoo" is a generous term, but it was perfect for the kids. Just enough animals to keep their attention, no crowds, and the perfect price - free!

This is Justin's sign language for "pig". He holds his nose and on occasion we get a solid "snort" out of him!

The alpacas have some serious teeth. We kept the kids away from him!

Daddy was safely rescued from the airport and at nap time he settled into what would be his vacation routine of napping with the kids. Then we went to my uncle's house for dinner with my other cousins too! I took pictures for my grandmother since she has never been there, but I forgot to take pictures of the actual house! (My mom has since taken my grandmother to visit so no worries.) Travis had a great time with my cousin's son, Matthew, who is about a year older than he is. It took about two minutes to get over the nerves. And Justin joined the fun chasing them! The kids were having so much fun I told my aunt we'd just pick them up the next day. She didn't go for it. I am sure they'd take care of themselves!

(L-R) Kayla, Justin, Lexi, Travis, Matthew, and Brianna

The next day we all went to my grandmother's house. And what visit is complete without a trip to the cookie factory? Mary had never been to the cookie factory so we had to show her what it is all about. Lexi enjoyed it too! Randy hasn't been there either so it was a big trip for us.

Kurt, Mary and Lexi on their first trip to the cookie factory.

The kids definitely got their dessert that day. I used cookies as a bribe to keep the kids in bed. If they didn't get out of bed the whole time we were there they got to pick out one kind of cookie to buy. And if they behaved well they got to try more samples. If they misbehaved, they lost samples. This only really worked with Travis, but he influenced Justin to behave by not being the instigator. :)

Three wiggly great-grandchildren and a great-grandmother!

Grandma enjoyed reading Elmo to Justin, and he enjoyed hearing it for the 150th time.

I treasure each picture that we get of the boys and my grandmother. I want the boys to know the rich legacy they have. It was a fabulous visit. I got to hear more stories and I was able to cook for grandmother, although nothing compared to the years of delicious roast beef, mashed potatoes, fresh garden vegetables, and fruit-filled pies that we all enjoyed as kids.

We rounded out our trip back in Madison. I made plans to eat at all of my favorite places: apple fritters at Greenbush bakery, pizza at Rocky Rococo, and baked goods at Perkin's. All I got were the fritters, and the boys got a meal at Ella's Deli. It is a childhood dream with all kinds of carnival decorations and moving characters. Justin was mesmerized by the moving tools. (Trust me, they move in real life.)

Each table is decorated inside and some even have moving parts. Here's one of my favorites, but no Continental plane. I didn't even look for United! Our table had a train, but it didn't work. Big disappointment for the boys.

What carnival restaurant would be complete without a carousel? The boys finished off the meal with a couple of spins.

The second time around Travis got the Badger horse! Check it out with the big "W" and even the rose for the big Bowl game. Travis even had on his Badger shirt. (We stocked up on our Badger and Packer gear while we were visiting!)

It has been so long since we have taken a week-long vacation that I ran out of camera battery and I didn't bring the charger. So the flash didn't work very well for the last few shots. We fit in as many family visits as we could during our Madison time so here's with my cousin Jeff and his wife, Michelle's kids. Sorry for the absolutely lousy exposure. It in no reflects on the awesome visit we had. It has been so long since we have seen them and I am totally loving the way they all played so well together. Anaiah even shared her pet rats with Justin. (What did I tell you about the "animal" theme of our trip?)

We also fit in a visit with one of my mom's cousins and her husband. This is the best one of the bunch, sorry! But dinner and the conversation were great! The kids love Nana's toys (our toys growing up) and they were perfectly content playing while we talked. I so appreciate adult conversation!

Even some of Nana's not toys are fun. She has a bucket of wooden apples and the boys spent hours playing with them and stacking them and sorting them and throwing them. Travis even practiced counting by three's with them.

And then the camera died, so no pictures of my Uncle Mark and Sam during their dinner visit. But the rest of the trip was spent helping my mom organize and clean as she unpacked and sorted everything that she brought home from our house. We got it on both ends! Randy cleaned ceiling fans, I mopped the kitchen and killed spiders in the storage unit. Can I just say that I am not scared of spiders, but dark areas filled with spider webs on all sides, all currently occupied by their makers was enough to make me squirm. I emptied the end of a can of Raid (perhaps twice as much as necessary...) and then l ran out to wait for the smoke to die down. Even then as I scraped out the remnants with a broom, I was certain that at least one spider had survived to avenge the deaths of his friends and relatives. Not my favorite job, but I took one for team. I asked Randy to check my hair and back for any taggers along and he pronounced me clean only for my next trip out to find a bug clinging to my shirt. I jumped back about a foot, like that was going to help! But I survived and we did what we could to improve the appearance of her home. There is more left to do, but that can wait for another visit.

We also found time to hit a Border's going-out-of-business sale, Trader Joe's, and the Brandon Meat Market for our supply of brats and bacon. That, along with our cookies, more than filled up our bags. Then it was time to say good-bye. I threatened to stay until the temperature in TX got below 95, but that doesn't seem to be coming any time soon. WI weather was beyond perfect. Sunny, breezy and mid-80's. Love it. Just like I do all my family and friends who live there. You are welcome to visit Texas in January. :)

ENT Visit: Apnea Update

2011-08-23T15:27:00.000-05:00

We went to the ENT this morning to see if Justin's tonsils are a playing a part in his sleep issues. One look confirmed that his tonsils will soon be history. His tonsils have grown from a +1 (growth blocking 25% of his airway) to +3 (blocking 75% of his airway) since last summer. Why is everything growing inside and not outside? That's where all his food is going! The doctor will remove the adenoids at the same time, even though she cannot see them to know if they are a problem. I asked her why do the surgery if he will probably need CPAP anyway. She said that it's still likely that he will need CPAP, but the removal of the tonsils means the air flow settings will not need to be as high to force air past the tonsils. And removing the adenoids will give an extra millimeter, which will help too. The lower flow settings will mean he will tolerate it better. I am all for that!

Because of his age and DS he will need to spend the night in the hospital. And the doctor said to be prepared for at least a week of complete dedication to Justin's healing. She talked with Travis about remembering how he felt after surgery and that it wasn't time for wrestling and picking on his brother but that it was a chance to be a loving and helpful big brother. Travis definitely said that it was no fun having tonsils out, so he can commiserate with Justin. I am glad we didn't do them at the same time! Time to stock up on ice cream and pudding...

The First Day of School...But Not for Us!

2011-08-22T17:11:00.023-05:00

Today is the first day of school in our school district. But Travis did not score a lunch bag this weekend during tax-free weekend, he did not "meet the teacher" earlier this month, nor was he outside waiting for the school bus this morning. Neither was Justin, for that matter, given that he is able to start school because of having DS. I am not a terrible mother, we just are continuing the adventure of homeschooling. I have to admit, I had a few "tummy in the throat" moments today as I was battered by doubts and concerns. And school did not go great this morning as Travis struggled to understand the long "a" sound in its various spellings. Wiggly does not begin to describe it! But during nap/rest time I listened to a recording of one of the sessions from the homeschool conference we went to last month and I calmed down.

This was the third year we went to the conference and as one of my friends said, "Every year I get so much more out of it!" The first year it's like the deer in the headlights look. The sheer volume of vendors in the resource hall is enough to cause panic. It's so much better as I recognize names and understand the lingo. I had a plan of attack and knew what I needed. Of course, we came out with more than just the "needs" fulfilled, but I think that's how God works.

The event is amazing and I love the fact that this group makes the effort to plan something so encouraging. The two-and-a-half days are filled with speakers, meetings, shopping, children's and teens' activities, family fun, and the whole experience is infused with encouragement and prayer. I cannot help but come away feeling excited and renewed. (I know that's the point....)

Randy and I usually go together to hear the speakers, but if it's difficult to chose we split up and attend two. Every year it's more difficult to chose so we end up getting the sessions on tape and listening to them later. Every year there is a session for homeschooling kids with special needs, which we have purposefully avoided because we aren't quite there yet with Justin and there are other sessions we think are more important at the time. That was our plan again this year, but for some reason I changed my mind and went anyway. I am so glad I went because my nugget for the conference was in that session. The speaker (who I ended up running into at the gym later the next week!) recommended working on teaching skills that are age appropriate rather than waiting until you have no choice. Like not waiting to teach shoe tying until shoe manufacturers no longer make velcro closures in his size! Even if it takes longer, she recommended putting in the extra effort. It was the nugget I needed in my struggle with potty training. Of course, I understand that not everything works within her theory, but I can see the value as children watch their peers and learn from and with them.

I admit that we are not committed to homeschooling forever, but it's the right choice for us right now. If Travis had been in school, I would have missed him singing this on the way to the grocery store this morning:

(I love recreating moments for blog-post effectiveness!)

And since every first day needs a picture, here's Travis' first day of kindergarten. It's from February!

Progress Report

2011-08-16T07:54:00.000-05:00

Here's the updates on a few of our ongoing operations:

Bike Riding: I did begin working on this with Travis. It would have been easier with air in the tires. Trying this again next week...
Potty Training: I have been reminded of the need for patience. Justin does great when I put him on the potty. He does his thing nearly every time. So if I could have the intuition to know when he needs to go, we would be great! I am, however, not that in tune with Justin's bodily functions. He is getting better, and we are working on the recognizing when we need to go. (It is "we" for a while since he can't pull down his pants, or more accurately pull them up!) He is much more cooperative in going, although we still get the big sigh and shoulder slump occasionally. He wants to wear underwear, so that's encouraging too.
Apnea: I think this is affecting him more and more every day. The past few days sometime between 10 and 11 am he has a little meltdown if he cannot be held. When I was trying to pack to leave WI (more coming, I promise) he was nearly beside himself crying and whining. It took about 11 minutes for him to pass out once we got in the car. And yesterday at therapy Miss Caroline said that he seemed more tired and he wanted her to hold him. She loves this and gladly complied. And again, he fell asleep on the way home. So, if I can somehow manipulate my schedule to be in the car every day during that magic hour, thus allowing him to get a 20 minute nap, we can make it through lunch to regular nap time. Either that or put him down for a nap early and then more nap time later in the afternoon. We go to the ENT next Tuesday. As soon as we get through that appointment I plan to start calling for another sleep study cancellation as soon as possible. I am losing my patience and I am snapping at the boys more than I should. Not liking myself too much, so I am trying to get myself more sleep in a possibly futile attempt to gain a bit more control over my short fuse. That and some major deep breathing and prayer.
Air conditioning is finally fixed! Just three attempts. Can't wait for the next electric bill....

I have a couple more posts coming about the homeschool conference and our great trip to WI! I have to work this weekend and it's tax-free weekend in Texas so I will be doing some fall shopping in the little time I am home. Time to stock up on school supplies and "winter" clothes for Travis!

Bites

2011-08-10T07:44:00.000-05:00

I bought foam swords for the boys earlier this year. I decided to buy them after I took away the boys' plastic baseball bats, flags (on long wooden sticks), and even butterfly nets after they were all used to beat each other one time too often. I figured they could hit each other and there would be less blood. It has been successful so far, but there has been one unexpected consequence:

Can you tell which one is Justin's?

A Bad House Day

2011-08-04T21:54:00.000-05:00

With working in Travis' new old room yesterday, I didn't get to do the cleaning I usually do on Wednesdays. I wasn't really excited about doing it today, but I knew that I needed to do it so I wouldn't get too far behind. It turned out I didn't need to worry because when I walked into the kitchen this morning I stepped into a puddle of water where a pipe had leaked in the ceiling. Randy quickly shut off the water to the house and I got out of cleaning duty. I also didn't get the chance to take a shower so I was a bit odiferous today. But don't worry too much, because with the A/C acting up, it was close to 80 degrees in the house today, so the shower wouldn't have lasted very long anyway!

Since I know God is still in control through all of our home repair issues, here's what makes it all okay:

My mother is already on her way home so I don't need to worry about her in this situation.
I didn't have any play dates with extra children in our home today.
I got extra time to play pirate, indian, cowboys, trucks, and do some wrestling with the boys.
We found the leak without it doing any extra damage.
We still was able to do all the things that needed to be done, including therapy, plus a few minutes at the gym.
I had the opportunity to appreciate my husband for the way he takes such good care of our house.
My schedule got a little bit out of whack so I ended up at the gym at an off time, and ran into another mother of a daughter with DS and ended up making a great contact! I am so excited about this one!
Our neighbors brought us super yummy cake for no reason.

It was one of those days, but I am happy to say that God is so good through it all.

The Bucket

2011-08-04T21:36:00.000-05:00

My mom left to begin driving home to Wisconsin yesterday. One of the saddest days yet for our home. She managed to fit everything that she brought with her last fall plus all that she acquired since then into her car for the 1200 mile, 20 hour drive. Did I mention it was horribly sad? It was a bit of a power struggle for me to agree to let her make the trip solo, but in the end I understood her need for some alone time and let her go. So why do I feel like a parent sending their child off to college or to their first job?

So yesterday afternoon I spent cleaning out the room and moving all of Travis' clothes, stuffed animals, pictures, etc. back into the room.  All the time I was thinking what a good room that has been for my family. That room was the first bedroom Randy and I painted together. My sister spent six months in that room living with us after college/ graduate school. It was Travis' first "big boy" room when Justin was born. And now I am considering moving both boys together into that room. (Thoughts?) It is overflowing with memories. They fill the room beyond measure.

And the bucket? When my mom moved in and she began chemo she wanted something that would be "just in case" she needed it for whatever chemo might do to her. She kept that bucket by her bed for almost nine months. It became the elephant in the room. The reminder that while it was wonderful that she was with us, it was for another reason. I moved the bucket dozens of times during her stay.  The bucket became cancer for me.

But when she left, the bucket stayed behind. Its usefulness passed.  She is no longer to be identified with her bucket, nor it with her.  Washing the bucket and putting it away was cathartic. I relived the past nine months in quick flashes, moving more quickly as time progressed. I felt a weight removed and joy abounding when the last image flashed of Randy bringing the bucket out of the room. The bucket is back to being...just a bucket.

Toy Swap

2011-08-04T14:40:00.000-05:00

A couple of years ago I had one of those frustrating moments that maybe only I have where something in my house is kind of bothering me, and then it nudges a little more, and then finally I cannot take it any more and I must do something about it now. I usually pertains to cleaning or organizing. I have been known to organize so well that I cannot find things. It's in the perfect spot, I know, I just cannot remember where that spot is! (Believe me, there are plenty of things that probably bother other people about my house, but they haven't even entered my radar yet!)

So this time, it was about toys. I struggle big time with toys. Like most families, we have way more than we could ever play with. But I hate to discard and pass on when the kids really do play with them. We are attempting to limit the introduction of toys into our home, but that's another story. So when the big huge mammoth armoire entered our living room, a light bulb went on in my head and toy swap began. I bought some bins and separated out the toys into two piles and stored one in the armoire and the other went neatly on the toy shelves. So now every month I switch toys. Travis loves it and asks if it's time to switch toys. (I also take the opportunity to switch CDs in the car so we get some variety there too.) I had another light bulb moment last month and I made Travis help me gather all the toys in the living room so I could do the swap. He hauled all the buckets and toys from the play room into the living room in front of the armoire. It made it go so much faster! And then this month I tried something else. I used to do the swap after the kids went to bed, but instead I tried to do it with their help. I knew it would take a little longer, but I thought it might work anyway. It did! The kids were very helpful (Okay, Travis was very helpful, Justin needed a little more direction!)

The scope of swap has expanded since its inception. At first it was only the smaller toys and a few other things. Now I even take the play tent down every other month. A few of the larger things sit in the corner of Justin's room (the basketball hoop, the larger trucks) because the boys don't play in there. And the games switch out too. The other day when the kids had their play date and one of the boys ventured into Justin's room and started playing with something, Travis even told him that he couldn't play with that until next month!

We are reading and discussing the book Radical by David Platt in our Bible class. It's a great book, if for no other reason that it makes you think about what's truly important in life. How much is too much? What kind of life does Jesus want for his followers? It's really causing me to take a serious look at our lives and our "stuff". Is it about what makes me comfortable? It's difficult to teach the children about serving others and sacrificing when our closets are overflowing and there is no need left unmet. Toys are my biggest struggle (there are others too...one is our pantry) and I am at a loss as to how to handle, control, deal with the mountain that is toys. If you have any thoughts or great ideas I would love to hear them.

One half of Travis and Justin's toys, ready to be put up

The other half, ready to be put out for the month

One half of the toys, stored

Play Date

2011-08-01T22:00:00.000-05:00

Today we had some of our neighbor boys come and spend the afternoon with us. Last week as I was calling another person to help watch my kids so I could go to the doctor (with Randy this time!) I was thinking that I wish someone would call me and ask me for help. I think everyone thinks I am too busy, but really there are times that I am free and I would love to return some of the favors I continually solicit. So yeah! I was able to help someone today! And my boys had a great time too. The boys are both older than Travis but they do great playing together and today was no exception. I love how all three boys really tried to include Justin and no one had to sit in time out the entire time!

My favorite moment was when Braydon took Justin into his lap and he tried to help Justin play catch. And then all four boys played hot potato. It's one of those times that makes a mother's heart all warm and fuzzy.

Speech Therapy

2011-07-31T20:47:00.000-05:00

Miss Sarah has been working on some vowel-consonant combinations with Justin. He can do well beginning with the consonant, but this changes it up and makes the consonant sound the end sound. She worked on vowels first and she gave us some "cues" to use to get Justin to make the sound. Like to make the "eee" sound, she touches the corners of her lips, and "o" (like "boat") she circles her index finger around her lips. Justin does very well with this, and he even has the order of the vowels memorized so Miss Sarah had to switch them up a bit! She did the same thing with consonants and now they are working in combination. For this, she gave us some pictures of things that used basic vowel-consonant combinations (the ones he knows). So we have all of this posted on the wall by Justin's seat at the table so we can practice while we're eating. Justin loves the pictures and he points to them and practices by himself at every meal. It looks funny, but Justin loves it. Travis gets involved too. He asks Justin to say a word and then he repeats it really fast in a twisted effort to encourage Justin to be able to say it better. (Boy logic: faster = better) Justin's best words are up and out. When he says "oat" there is a very defined break between the "o" and "t". And with "arm" he just points to his own arm and babbles. He somehow has forgotten how to make the "m" sound. I'm not sure how that happened. I am trying to remedy the situation and so far I am failing!

The words are: out, eat, oat, up, arm. (I had to ask what "oat" was!)

This and That

2011-07-25T20:28:00.000-05:00

Lots of happenings and no time to tell it all, so here's the short version:

My mom had her last radiation last Monday! She is officially done. She got the go-ahead to remove her port, although it may take a few months to get scheduled. She begins her "anti" hormone therapy pills in a couple of weeks. She has to return for checks every three months and she will have a few more scans at her next visit in October/November. She is tired, but upbeat. Her neuropathy is improving, especially in her right hand. Her hair is so cute! Very short and very curly. She will need a bit of shaping soon. She said Randy would have to do it, not Travis this time!
We have added some more therapy to our schedule. Melissa has been great in manipulating our schedule and she got us time slots together so we only have to go three days a week, but two of those days we have two therapies back to back. We've been having one day that has one therapy in the morning and then an hour and a half off before the next one. This new schedule eliminates that break. It works great for Travis' school because it gives us two days with an hour and a half of dedicated time to do school. So now we'll have 2 speech, 2 PT, and 1 OT.
Speaking of therapy, Justin is doing fabulously! He is getting really close to being able to jump, he is learning his colors, and in speech he is working on putting consonants at the ends of words. Justin has been practicing jumping off the edge of the pool! It's more a squat/fall, but it's cute.
Both of my brothers are getting married this fall. Ben is getting married in August in Florida and Jon in October in Pennsylvania. It affords us quite the chance for Travis to work on his state geography!
My mom is planning to head back to Wisconsin the beginning of August. It's going to be hard to have her place empty in our house. She has been here since Thanksgiving last year. Sad even to mention.
Travis is about three-quarters of the way through kindergarten. He doesn't like sitting down to do it, but once we get going he does fine. Why is that?
My mom went to LA this past weekend to meet a new grandson of hers. Not newly born, but newly discovered. His name is James and he just turned 15. We learned about him last fall, right before all of my mom's treatment began so she didn't get to meet him. She's been talking with him and now she got to meet him. It was a great trip for her and James was thrilled to meet some family. She took lots of family pictures and he loved seeing them. We look forward to more time together in the future.
Potty Training: Ug, don't even ask about it. Justin does great when I put him on the potty, but he's one of those who doesn't want to be interrupted when he is playing to take care of business. We are now camping out in the kitchen so that if he has accidents they are less messy. We have had our share, believe me.
Bike Riding: Yeah, haven't really done much with that yet. Things keep coming up! I mean to get Randy to lower the seat on his bicycle, but I keep forgetting. Other things keep coming up!

Lots more in the works, but nothing else to report. August is going to be busy. I am not sure how I am going to fit work into it all! Randy's got some busy weeks at work too. I am helping mom get her things together to go home and then rearrange all the boys' things after she leaves. Travis is excited to get his room back. I think he forgot it was his for a bit there!

It's Outta There!

2011-07-21T21:21:00.000-05:00

Travis lost his first tooth tonight! It has been loose forever and about a week ago he finally mentioned that it seemed looser than before. Uh, yeah! It was really loose! But it wasn't quite ready to come, so we said maybe another couple of weeks and then it would be ready. Well, you know how tempting it is to keep wiggling that tooth. And wiggling. And wiggling! I have to go to work tomorrow and it was so loose that I was sure it would come out while I was gone unless we took some decisive action tonight. So when Daddy got home we tied some yarn to the tooth and I did a quick yank and it was out! I think Travis was more surprised than anything. After some rinsing and sucking on ice, he was in good spirits and we did a little skyping with the family to share the news.

Fortunately we did some crafting this afternoon to prepare for the big event. I had been intending to make a tooth fairy pillow for Travis for about 6 months, but it never seemed urgent. That got stepped up a little and today was the day. It was good that I had done some research and had a plan, but I just needed a design. So Travis picked pirates for the theme and we went to the craft store for a few supplies. This was easy and very cheap! A few pieces of felt and ribbon and we were set. Most of it is glued with just the main body sewn plus the pocket on the back for the tooth, which gets exchanged for pirate treasure, I mean money. Travis helped with the gluing. He loved helping me so in a way I glad I waited until the last minute. It's supposed to be a pirate tooth, and I know teeth are normally white, but Travis got to pick the color for the tooth and that's what he chose. I say he lives on a boat in the sun so he has to be tanned.

It was another BIG first for Travis. The beginning of the end of baby teeth, and the beginning of the end of thumb sucking. I think that one's going to be a whole lot harder...

A Picnic, Pony Rides, and a Zebra

2011-07-12T07:00:00.001-05:00

Before I begin, I have to tell you that I went to work this past Friday when Randy was off. When I called home to check on everything, Randy said that he had gotten sick and that Justin had woken up with a swollen eye. Randy was not doing well, and Justin was acting just fine, so we assumed it was a reaction to a bug bite or something. Justin's eye was the size of a small citrus fruit all weekend and finally on Sunday I asked a optometrist friend to check it out and he said that it was infected and to take him to the doctor right away on Monday morning. He said a few other things that put the fear of God in me and I watched him like a hawk the rest of the day to make certain he didn't develop a fever or lose vision. Randy went to the doctor too, and he's staying home from work even tomorrow so you know he's bad. Justin looks much better. But some of the following pictures look pretty pitiful. I just want you to know that Justin felt just fine, he never had a fever, and he had a great time!

Our friend, Melissa (the receptionist/insurance person/sticker purchaser/everything person at therapy) invited us to join her family for a movie in the park. Her son just got a set of orthotics like Justin and he wanted to show them off to Justin. So we met them and had a great park day. The weather was hot, but there was a little breeze and the sun stayed behind the clouds so it was very pleasant. They show a movie every month, and this month was Racing Stripes, about the zebra who wanted to be a racehorse, so they had pony rides and a zebra to pet.

Travis, Justin, Cheyenne, and Cody

They had a small pony and a large pony. Both kids wanted to ride the big pony. Justin did really well! He held on and never lost his balance. I was really impressed!

The zebra mostly wanted to eat grass so the kids pulled grass and fed him. Travis got his finger nibbled so he's been telling everyone that a zebra bit him. Justin pulled grass and threw it at the zebra. Cody tried to help him figure it out, but Justin never got the hang of it.

A Daisy Troop had games for the kids to play. Travis and Cody played the bean bag toss. Justin just put the bean bags in the hole. Then he clapped for himself!

They had a magnetic fishing game, but they put the fish in a metal tub so the fishing lure kept getting stuck to the side of the tub! Justin was telling Cody which fish to get. It was hard even for the bigger kids! When Justin took a turn later he just dipped the lure into the water and then swung the pole around spraying water everywhere. It was warm so we didn't mind very much. They also had a sponge toss and water guns, but the big kids took over that area so it was too much for the littler kids.

Here's a good one of Justin's eye. They also had visors for the kids to decorate. Justin didn't get much into the decorating, but he loved wearing it! This was his favorite method of donning.

Travis and Justin had so much fun. There weren't a ton of people so I could let Travis run and I could still keep an eye on him. I meandered behind Justin and Melissa and I could alternatively talk and tell the children to stop doing whatever it was they were doing. There was a caboose by the park because it was near the old train depot, and the kids had fun climbing on and running around it. All my pictures of Travis are blurry because he wouldn't stop moving!

The movie started at dark, which was around nine. Travis sat and watched the movie, but Justin was all over the place. He borrowed Cody's chair, and then climbed in, and out, and in, and out. I knew we wouldn't make it through the whole movie, but Justin was not settling down so we left earlier than I had planned. Justin was supposed to fall asleep on the blanket and then Travis could watch the movie until he got tired. Well that didn't work! And I forgot to tell Travis that we weren't going to be able to watch the entire movie, so that was a little bit of a struggle. But of course I promised we would rent it and watch it later, so he gave in. The boys went to bed at 10:30. Guess what time Travis woke up.

6:25 am

4-0

2011-07-11T21:10:00.000-05:00

We had a big party this past week because Randy had a big birthday. It was the very special and monumental 4-0. His birthday is close to the Fourth of July, so we celebrated on the 4th since everyone was available! He's used to his cake being red, white, and blue, so I made a red, white, and blue trifle. Okay, so it had a little brown in it too, but I didn't have time to make white chocolate pudding. It tasted okay anyway. And in spite of it being Randy's birthday, he manned the grill and cooked us some delicious beef and chicken kabobs!

Randy's parents put together a cute poster of pictures of his life. Of course I forgot to take a picture and they wanted it back since several of the pictures are only copies. Man, you can tell we're old when our baby pictures and even our wedding pictures are only in print form. Way before the digital age!

Randy and I tend to wax eloquent in our cards to each other, and this birthday was no different. Usually when I write cards I reminisce about where we've been and all we've been through, but this birthday really made me think forward instead of back. We are often told that 40 is the "beginning of the end" and "it's all downhill from here" but now that's we're here (I am close you know) I see ahead much brighter than behind. And while behind had some big bumps, it was still pretty great. I just know the best is yet to come. We may have been together for 15 years, but I hope that we are together for plenty more than that. I pray that God has even bigger plans for where we are going. I am glad to have a silly guy with whom to share it all.

Happy Birthday Randy!

Family

2011-07-07T18:23:00.000-05:00

Randy's brother, Craig, his wife, Kristi and their daughter Lauren came for a visit the end of June. It has been a long time since we have seen them since during their last few visits either the boys or Lauren has been sick. This time we were all germ-free so we all spent the day together.

They have a dog, and the boys are typically scared of dogs thanks to some neighbors and their huge boxer dog. But before too long, both boys were willing to pet the dog and stopped making huge circles to get around her.

Uncle Craig and Travis did some wrestling.

And some arm wrestling...

Even Justin got in on the arm wrestling. You know, whatever brother does...

Here's the whole gang (minus us of course). They took some group pictures while we were gone at a wedding so we missed the "cousin" shot. It's supposed to be coming via e-mail, so hopefully we'll get it soon!

It was so much fun and I am glad we were able to see them. The cousins had a good time, and Lauren enjoyed playing with the boy toys! I think her favorite was the garbage truck. It's one of our faves too!

Results!

2011-07-06T14:30:00.000-05:00

We went back to the sleep clinic this morning. It was a very successful visit! I was very pleasantly surprised. Last year, Justin averaged 6.1 apnea episodes/hour, which put him in the mild apnea range. Justin averaged nearly 12 apnea episodes/hour of sleep last week, which puts him in the moderate range. So he has doubled his apnea episodes/hour in the past year. And the more telling statistic is that during REM sleep, the average of apnea episodes goes up to 19/hour. So Miss Terry said he's not getting good quality sleep. That's what we've been saying, so it's good that we have someone acknowledging the problem and now we can make progress to fix it.

The next step is a visit to the ENT to rule out tonsils and adenoids. That's of course where we started last year, but things can change so I am on the phone on hold attempting to make as appointment as I type this. The ENT said that he wasn't a surgical candidate last year, but we will see if anything has changed since then. If that is ruled out, then we move on to the CPAP machine. It's a machine with a mask he will need to wear during sleep that pushes air into his nose to make it less difficult to breathe. Sleep apnea is very common in DS because of the low muscle tone. When everything relaxes during sleep, the tongue tends to fall back and block the airway. The CPAP should correct this, but it is very uncomfortable and there will be a huge learning curve to get his used to wearing it. Miss Terry ordered the sleep study needed to calibrate the CPAP machine since they are scheduling appointments for February already. Once we visit the ENT then we can decided the next step. So we're making progress!

And I'll end with a totally random picture of Justin. This Fourth of July we went to a friend's birthday party and the kids all got to make stick horses. This is Justin's. Both boys are gaga over their horses, but I couldn't get a good picture of Travis, so Justin will have to suffice. They are true cowboys!

Sleep Study

2011-06-29T12:43:00.003-05:00

Yesterday during nap I got a call from the sleep clinic saying that they had a cancellation and asking if we could come for Justin's sleep study that night. I am beginning to wonder if anyone actually has their study on the originally scheduled appointment time. Anyway, we were out the door and on our way in record time. (I am getting good at last minute packing jobs...) We had time for dinner with Daddy at Chick-fil-A and I left Travis with him before Justin and I went to the hospital. You will be very pleased to note that unlike last year, I remembered my camera!

Here's brushing our teeth to get ready for bed.

Here are all the supplies ready to go. The sensors are the wires laying across the front of the table. Very multi-colored!

Cheri, our nurse, put on Justin's leg sensors first, the ones that check for leg movement. She asked which I thought she should do first, head or legs. I said I didn't think it mattered. I was wrong, it did. He did NOT like the sensors on his legs, and they didn't even hurt. She marked the spots with the grease pencil, cleaned them off and then attached they with a waxy glue. Then they got tape and purple self-stick wrap. (You'll see that in a later picture.) Then she set to marking his head. He was too into Barney to pay much attention, but you'll notice the red, swollen eyes from earlier tears. Most of the head spots were easy! The lines down his shirt go to the leg sensors and EKG monitors.

Here's the grease pencil and scrubbing to prepare for the sensors. She did each spot several times so she would have to push too hard and bother him.

All the head sensors are on. She switched to cotton balls to hold on the sensors. I didn't get it, but they stayed on so who am I to question? She then moved on to the spots on his forehead and chin.

Almost all done. Here's the stocking hat/ski mask cover. She didn't cut it down the middle and make ears since we planned to use the CPAP machine during the night and it doesn't fit over the ears. Again, not questioning... Here you can see the purple tape on his legs.

Cheri gave him a mirror to check himself out. He stared very intently.

Very intently...

Here's all the lines coming together at the back of his head. Cheri put a stocking over all the lines so they wouldn't get tangled during the night. Really good plan!

All the lines attach to this box that then feed the information to her computer in the room behind ours.

All ready for bed! Now he also has on the nose cannula for carbon dioxide output and the temperature sensor (that's what makes his nose glow!)

She checked his pulse ox reading on his finger since his toe was reading low (96%). It checked out the same so that might be something to watch.

And then the lights went out. I haven't been to bed before 9 pm in forever, but I guess I needed it because I think I was asleep before Justin! Justin flopped and woke up quite a bit, but with me in bed with him he slept better than usual. He woke up, saw me, and went right back to sleep. Cheri came in at about 2:40 am to readjust a sensor and she said that he hadn't met the criteria before 2 am in order to justify switching to using the CPAP. I wasn't sure what to think, but she said we were just going to finish up the night. When she came in at 6 am she said to Justin, "You must really like sleeping with your mom." He said, "Yah!" Little stinker! We have a follow up appointment for the beginning of August to go over the results. I am not sure how the night went according to their criteria. They ask all sorts of questions about how long I think it took him to get to sleep, how long he slept, how often he woke up, etc. I just feel stupid because it's like a test where they know all the answers already and they want to see what I guess. I know that they recognize it's difficult to replicate home sleep at a lab, but that's the best they can do.

So here's Justin's morning stretch. They hadn't turned on the lights yet, but it's still a funny picture!

Then it was time to remove all the sensors. His hair was a matted mess. Oh, and we're watching Barney again, that's why we're getting the completely disinterested chin up stare.

I did my best in the shower getting all the goo out of his hair, but that grease pencil is tough to scrub off! I had to hold him since there was no bench in the shower, and the minute I stood him on the floor of the shower he ended up on his bottom. I scrubbed all around his head and then when we got to therapy I noticed that I missed the big spot in the center of his head! Not sure how I missed that. I also missed a spot behind his ear. I somehow got some in my hair too. All our PJs are going in the laundry! It's always an adventure. Cheri kept saying how cute Justin is and he kept agreeing. We all had a good night. I might need a nap though.

A Trip

2011-06-28T15:36:00.000-05:00

When I go to work, I usually try to work as much of the time I am gone as possible. That means I have very short layovers (or none at all - just day trips/turns). But this month I decided that the best use of my time would be to do a couple of longer trips with longer layovers. So I ended up with a 36 hour layover in Buenos Aires. Completely unheard of for me, but it doubled by providing me with some much needed rest and down time. I wanted to do a little sight seeing, so I found this fun little cemetery close to our hotel. It's called La Recoleta Cemetery. It happens to be when Eva Peron is buried, so it's plenty popular.

It's set up like a city, with streets. It holds 4800 mausoleums, all above ground. Most of the coffins are underground, but a few are visible through the windows or doors of the mausoleums. This is the map you'll find at the entrance.

Here's a view walking down one of the "streets". Eerily pretty is my description!

Eva Peron's mausoleum. She is buried with her father and siblings. This cemetery only lists dates of death, not of birth. And these plates have the date of when they are installed, so some are only a few years old.

This was one of my favorite. The next picture is of the right side of this mausoleum.

Here's one where you can see the coffins inside. The next picture is the close up of the inside.

Some of the designs and architecture is amazing!

It almost looks like a park!

It was a nice walk and a fun visit. You notice everyone has coats on. It's winter in South America! That was another bonus for us being from hot and humid Texas. It was cloudy and very windy so we got the true winter experience. I am going back this weekend and I think I am going to do some more walking and a little shopping! Maybe some early Christmas shopping?

Father's Day

2011-06-23T15:29:00.000-05:00

Sorry I am just getting to this, but I forgot to download the pictures. We spent Father's Day with Me-Me and Pop. They cooked a fabulous meal, featuring beef brisket. I contributed absolutely nothing to the meal since I had only just arrived on the flight from Argentina. My in-laws are just great! I am also fortunate to have an awesome husband who served me on Father's Day by having coffee ready when I got home. (They also had to deal with Justin throwing up profusely on Friday while I was gone. The whole gang ended up in the ER. Major cudos for dealing with that scare and all that clean up! Justin's just fine now, but we skipped church just in case he had passed it to Travis or Randy.)

We didn't do anything special, but here's a few pictures from the day:

It took about 6 shots to get this picture since Justin is such a fast kisser!

Me-Me and Pop just went to a family reunion last weekend and they came back with a book detailing the account of how Pop's family made it to Texas. So Me-Me thought she would tell the boys the true story of Pop's life, but she only held their interest for a few minutes. Maybe another day. But they look really interested, don't they?

Knees

2011-06-22T06:00:00.004-05:00

My boys are growing. Especially Travis. Do you know how I know?

I can see his knees.

This is the first summer that Travis' knees peek out from underneath his shorts.

To fit at the waist, the length was always excessive, but what could I do? His shorts have always been more like boot-cut capris than shorts. Travis put on his shorts this summer I thought maybe they didn't fit him.

(Here's Justin's "shorts".)

I pondered and considered and watched him and realized, he's just growing up.

Growing up.

A major accomplishment and yet sad for mommy to see. Travis is definitely NOT a toddler. He's growing up and moving on. Makes me proud, excited, and scared. Another new phase. Glad it's coming, but sad to see the old going.

Another Down Syndrome Clinic Visit

2011-06-18T17:07:00.000-05:00

This week we made our semi-annual trip to the DS Clinic. It was a crazy morning getting everything ready for the day. I had to go to work that night so I had to pack bags for the boys' overnight stay at Me-Me and Pop's and make sure the boys had everything they would need for day. Travis went to a friend's house while we were at the doctor's and he needed to be dropped off by 7:15 to ensure our timely arrival at the Med Center. So the boys ate breakfast on the road. I am always surprised that somehow it always works out. I have to say that it is in part due to my traffic reporter (Randy) who always gives me the best route to take.

We saw the doctor, OT and speech this visit. Speech and the doctor were first. I reported all the latest to the doctor - no ER visits, no major illnesses throughout the winter, what was happening with endochrin and the sleep clinic. I still hadn't heard from the sleep clinic about scheduling the sleep study so I was planning to stop by after this appointment to see if I could work on that since they don't give out their phone number. Well, fortunately, the doctor fixed me up and later that day I was able to get us in for January of 2012. In the month since our appointment, they have gone from scheduling in November to January. Yikes! Back to this appointment: She (the doctor) wants to be sure Justin does not have celiac disease now that I told her Justin is not eating wheat. There are other problems that go along with celiac and she wants to send us to GI for a more confirmed diagnosis. I think we'll go back to our pediatrician and talk things over with her before we make that call. I don't want to go back on wheat while I am trying to potty train. I hope that we can put that off for a little while at least. The doctor said that she "aged" him at about 26 months, which is feasible for potty training so she gave us the go-ahead on that. She was very impressed with his attention and good behavior. He stuck his tongue out and said "ahh" on cue and went through all the steps just like she asked.

I really like their Speech therapist. She is very kind and encouraging. She was very impressed with Justin's progress and she showed his "age" at close to 27 months. He answered some pretty hard questions like showing him pictures and asking which one do you read, which one is blue, and which baby is NOT crying (he didn't get that one- that was hard!) She also was impressed by his attention and good manners. They both recognized how that aspect of growth and development often get left behind and how important it is later in life.

Justin had a smattering of skills up to 36 months of both of their scales, which really encouraged me.

The OT came in later and she was beyond amazed at the way he sat and strung beads for her. He hasn't done that in a while in OT and he did fabulously!! She kept giving him more and he kept going. He cut a piece of paper and made crosses and circles on the paper. He stacked blocks and of course knocked them down. He followed her directions very well. She wants him to string smaller beads and build more intricate designs with blocks. (Like tunnels and pyramids)

The doctor wanted x-rays of Justin's neck since there is a chance he could have a weak spot common in DS. It's something they do around age 3-5 and since Justin is fairly active and also compliant they felt now was a good time. That took hardly any time at all and we were out in less that two hours total! I have never felt so good leaving the DS Clinic. I was prepared to make this our last appointment if I didn't get more encouragement and positive feedback and they must have known because they were on their game. We even got cleared for a whole year between visits now! He's not making quite as much progress quite as quickly anymore so they are giving him more time to learn and perfect more skills. (I am kind of glad for that because that gives me a year to get the potty training down.)

Gearing Up

2011-06-14T13:00:00.001-05:00

As you can tell from my previous post, we have great plans for the summer!

My goals are to potty train Justin and teach Travis to ride a bike.
(I am thinking positively here!)

I hadn't really planned to start the potty training quite yet, but Justin woke up dry this morning and I asked him if he wanted to use the potty. He said yes and did his business just fine! Then we went for a walk and ate breakfast on our journey (Travis' word!) We came home and started school and Justin went into the bathroom and shut the door. Never good. So I went in and asked if he needed to use the potty and he said yes. I took off another dry diaper and he did quite a bit in the potty. So we went for the big boy underwear and then it went downhill from there. He wore a diaper for nap and I called it a day after that. We have evening VBS this week and he will be in the nursery. Too much for them!

And I have been psyching Travis up for the removal of the training wheels. Now I have to psych myself up. More coming soon!

Please pray for all these plans. We ALL need it!

One of Those Days

2011-06-13T13:00:00.000-05:00

The day by the numbers:

Number of times Justin went pee-pee in the potty: 2

Number of times Justin went pee-pee in his underwear: 1

Number of times Justin went poopy in his underwear: 3

Number of times Travis spilled his food: 5

All...before...lunch...

Number of loads of laundry created: 3

(sigh)

A Sad Trip

2011-06-04T20:52:00.004-05:00

When I was working last week we got word that Mommy Sharon (my mom's good friend who stayed with her after surgery and a very special family friend) lost one of her daughters very unexpectedly. She died at age 49 of complications from an aneurysm.

We really wanted to be there for the funeral, but we weren't sure how to make it happen. Her funeral was scheduled to be the same day that my mom started her radiation. And one of my aunts was visiting and not scheduled to leave until that day as well. So we considered options and debated the best plan. The holiday made flights a little crazy and they kept changing so we kept changing our minds: First we were all going, then we were leaving my aunt and just going the four of us (mom, me and the boys), then it was just me. We just couldn't decide. I drove my aunt crazy to hear us going back and forth! She likes everything nice and planned out, and that's just not the way we travel. We don't have that luxury when we travel on my passes. She just finally said that she trusted me. That made me laugh, but I was glad that she would go with whatever we decided.

So we went to bed still undecided and the next day we got up and went to our appointments. (It was Doughnut Day after all!) I got back to the house first and checked the flights. Of course, the next flight looked great, but it left in 2 1/2 hours, and I had nothing packed. The next flights looked bad, so it was this one, or a dead-of-the-night adventure. Since traveling and lack of sleep are always constant companions for our family, I opted for trying to conserve sleep as much as possible. So I kicked into high gear and made the reservations, checked us in, printed boarding passes, and packed myself and the boys and we were out of the house in 40 minutes. The house was a disaster, I was certain I forgot something, and I think we almost gave my aunt a heart attack.

But we made it!

I called Randy from the airplane and told him we were on and he couldn't believe it. He was checking the flights and he only saw one seat available. But we were on and we were on our way. We made it to Chicago and we had to put both my mom and aunt in wheelchairs. One fabulous wheelchair pusher pushed my aunt AND my mother, laden with her suitcase, handbag, and Justin. Travis wore his backpack and pulled one small suitcase. I had our backpack and pulled both car seats on our handy travel wheels and two rolling suitcases, one stacked on the other. We looked like vagabonds, I am sure. We had to go to the bus station at O'Hare, which requires going down an elevator, through a tunnel, and up another elevator. Each elevator required two trips since we didn't all fit into one. (Go figure...) That man earned his tips that day!

We made it, with only minimal complaining, and bought our tickets. We sent my aunt home to Indiana with quite a story to tell and we headed up to Wisconsin. We got on the bus and Travis found a seat next to a girl on her way home from a trip to Sweden. She was exhausted, but somehow managed to entertain Travis for 3 1/2 hours. I kept trying to get Travis into the empty seat beside my mother, but she insisted she wanted him to sit with her. Travis shared his Jelly Bellys with her. They played with Travis' cars and people. Travis invited her to our house. He laid his head on her lap. She raced around with him at one of the stops. She even let him use her phone to call Randy!   They were best buds by the time we got to Madison and Travis was crushed to leave her. He was barely consoled by the knowledge that she had his phone number in her phone.

And then the adventure began. We stayed at my mom's condo in Madison. She has a roommate who lives with her, but my mom hasn't been there since November. The boys got in the bath and Justin pooped, not once, but twice. Then when we were getting them into bed, we found that the cat had peed in the bed. All the way through to the mattress. So we had to change sheets (this was just the beginning) and then we pushed the twin beds together and all slept together. Some more than others. I am pretty sure Justin didn't go to sleep until 5 am and then he woke up at 6:30 ready for the day.   I had forgotten that since it's nice weather they leave the windows open all night and they also live very close to the airport. Where fighter planes take off regularly for training assignments Starting early in the morning. Gotta love it...

So we were up and watching TV quite early. By this time I figured out what I had forgotten: my camera and my belt. So no pictures of the trip and I spent the whole time with my pants falling down. I tried Travis'. It didn't work. No worries! We managed to get breakfast, get dressed, and get to the funeral in plenty of time. It was beyond awesome that we could be there. I think Mommy Sharon nearly crushed the boys with her hugs as she murmured, "You came. I can't believe you came. I am so glad you came."

Since the funeral was at the church my mom attends, she was able to see lots of friends and people who have written her cards faithfully for the past nine months.   The boys both fell asleep during the funeral (go figure...) which was a beautiful tribute to Mindy. (The funeral, not the sleep...) Mommy Sharon and Daddy Jack are both very involved at church and many people came to support them. There is also a Laotian church which uses the building and several of its members were there. There was a sandwich pot luck afterwards and we spent time with the family. Justin made friends with one of their grandsons, Josh. He jumped right up on Josh's lap and settled in. He was quite comfortable and did not want to leave.

It was hard to say goodbye, even though we planned to see them the next day. No one wanted to leave. I think that's how funerals are. A simple good-bye means so much more. Justin added some humor to our departure by doing his tiger impressions. The routine goes like this:

Travis: Justin, what does a tiger say?
Justin: ROAR!
Travis: Justin, what does a tiger say?
Justin: ROAR!
(Repeat endlessly)

Justin has a pretty fierce roar and it's hysterical coming from a body so small.

We went to my grandmother's house next. The plan was for the boys to nap during the car ride, but the funeral nap was just enough to take the edge off the sleepiness. And since we were going right by the cookie factory, we had to stop there. So sugar took away whatever drowsiness remained and they were both bursting with energy by the time we made it to grandma's. It was great for my mom to be able to see her mom, if only for a few hours. And I always treasure whatever time I get with her. The boys sang some songs, said some of their Bible verses, and in general hammed it up. It was great!

The entire day was filled with dirty diapers. I must have changed at least eight dirty diapers. And Justin was incredibly wiggly. Not being in his usual locations he wanted to squirm around and see everything and get away to play. So I was forever attempting to contain the contents of the diapers and forever failing. Since Justin is starting to become familiar with using the potty I always let him try whenever he asks. He asked at grandma's and so I put him on the toilet only to get poopy smeared all over my arm. By the end of the day there was not enough soap to take away the smell. My hands had the aura of poop. Or at least flower-scented poop. It was too much! Oh, and to end the visit Justin pooped in my grandmother's bathtub.

We got back to my mom's condo late and tried to put the boys right to bed. It was close to 11 by the time the succumbed, but of course it was another night of rolling and flopping. Justin crawled over Travis to be next to me and then he slept on top of me and Travis in the crook of my shoulder and by 7 am they were still sleeping and I had to go to the bathroom like you would not believe! Of all mornings! I was able to get out from under them and make it to the bathroom before we had to change the sheets again. But it was not long before their sleepy smiling faces appeared in the living room.

It was time to get packed and make one final visit to Mommy Sharon and Daddy Jack. We had a great time visiting with them. Most of the family had already gone home, but a few remained. There was the business of cleaning out Mindy's house and signing more papers. Nothing fun. So we allowed for some diversions. We ate lunch with them to help eat up some of the food brought by friends. A funny story was that the older kids were left to receive food the first days as the adults were at the funeral home making arrangements. They were left with strict instructions to write down what everyone brought so that appropriate thank you cards could be mailed. But they didn't know who the people were bringing food! So they did what any technologically savvy youngster would do these days: take a picture of the person! Pretty smart I think!

We enjoyed nibbling at the mountains of food that remained from feeding the family of 25! Justin was enjoying some salsa and got a bit of jalapeno that just about sent him to the roof. I ate some mighty delicious carrot cake. Travis got some awesome whipped creamy jello something. We did not leave hungry!

But eventually we had to leave. When we got to the airport our flight was delayed two hours taking our 2 1/2 hour connecting time down to only 20 minutes. My mom had managed to reschedule her radiation to start the next morning at 7:45 so we really needed to get home. The airport we connected through had another tunnel we needed to navigate (I am starting to dislike tunnels...) so I took off with the boys to get to the other plane and beg them to wait for my mom. I planned to pull the radiation card if necessary. Fortunately her hair is still really short so it's obvious she is going through chemo. We made it, with time to spare to watch a little Direct TV on the airplane before leaving. I am starting to like the TVs on the plane. We never pay for them but the free preview lasts long enough to settle the kids down so I can say that it's time for nap/sleep when the free preview ends. It worked this night and we got at least an hour of sleep before landing. And after some crazy car swapping we got home and in bed close to midnight.

So when did the kids wake up, you ask?

6:40 am

Bring on the coffee...

Memorial Day, Water Play Day

2011-06-03T15:13:00.000-05:00

This past week was a very busy week. And when I talk about last week, I am probably referring to your week before last, because that's where I left off writing so there is some catching up to do.

It was my birthday, and that started out a few days early because Travis has been talking about doing something special for my birthday for about a month and now it was time to execute his plan. When I got home from work the Saturday before my birthday, Randy and my mom were hanging streamers and balloons in the kitchen. And Sunday Travis told me that I had to leave the room because he was going to make me a picture that he didn't want me to see until it was done. So he and Randy created this:

Pretty cool, huh? It's the best picture he has ever drawn for me so this is very special. Randy colored the bottom three colors of the rainbow and Travis did the top three. They cut off the bottom of the paper so they wouldn't have to make more grass. I love it!

I ended up almost not having a cake or a birthday dinner since I already had my birthday party for this year last year! My in-laws relented and made a yummy dinner and cake - with no numbers just in case!

Then I had to work several days and Randy finished the fence. Really! All done! I am so proud of him. It looks fabulous. At least that's one thing off the list for a while!

So by Memorial Day we were ready for some fun in the sun. We had a nice dinner with our friends, the Judds. The kids did some playing in the water. They couldn't manage to figure out the slip and slide so we "threw" them. They had a great time. Justin wasn't sure what to make of it all, but he kept going back for more!

Chris even sent the kids down backwards so they wouldn't get water in the face.

Clara and Robert just got a new sand play table. Travis and Clara convinced Kelsey to add water and they had fun making mud. All four kids were covered with sandy mud, but it was beyond fun. All the kids were exhausted by the time it started getting dark. It was a great day playing with friends and celebrating freedom.

Many Celebrations

2011-05-27T21:20:00.000-05:00

We had a DeCarlo family gathering last weekend to celebrate. Every time our family gets together it feels like it marks another major change. Two more are going off to college and moving away from family. Another is ending the working phase of his life and retiring. And another family is moving to Austin and beginning life without children at home. It has been quite a while since we have been able to get together and it was a really nice evening. Both kids filled up on barbecue and cake. Justin and Travis charmed all the adults and got a present of a play tent, just because. We had a great visit with everyone and we were sad to have it all end. It will probably be a while before we are all together again.

We were able to get one picture with the graduates (the two beautiful girls to my left!) It was funny being lumped in with the "kids" for a picture!

Travis' Explanations

2011-05-25T14:21:00.000-05:00

I had to return some pasta to the grocery store yesterday and so I went to the service counter with the pasta and my receipt. I laid it on the counter and Travis said, "Mommy didn't notice that it wasn't wheat-free. Justin can't eat wheat. He's the guy in the cart."
Aren't you glad he cleared that up?

The Itch

2011-05-22T07:51:00.002-05:00

Call it getting older. Or more mature. Or developing the "mother's eye". Or God working in me. Whatever you want to call it, I am becoming my mother. Or at least I am seeing more of my mother in me.

Before we went to Seattle, my mother got the itch to make loquat jam. We have a loquat tree growing in our atrium and she had been watching them ripening and pondering what she could do with this odd fruit. So one day she asked me to get her some because she was going to make some jam. You know when it's your parents you just smile and nod, and pray that your kids will be as accommodating when you get older. So I got out the ladder and cut off the fruit I could reach. She just made a small batch and now we have been enjoying the fruits of her labor. (I just had to say that!) The jam tastes like peach, with a bit of mango, which is actually very tasty.

So I was struck by how I get the same itch. My mom gets the itch to cook, but I get the itch to clean or organize. Kind of like a pregnant woman's nesting urge. (Except without the pregnant part...) This week it's the carpets. Barring any emergency, my schedule will be bent to allow for carpet cleaning. Because I have the itch and it needs attention. Sometimes it's washing the cars, sometimes it's cleaning out a closet, sometimes it's purging unnecessary stuff. It's just funny how I was struck this morning as we enjoyed loquat jam on our bagels. Her jam. My cleaning. More alike than different. I think it made God smile as he made the connection for me.

It has been so enlightening living with my mother these past 6 months. It's so much more than I could ever see in a short visit. Watching her make decisions and face difficult health challenges and interact with my kids. They made shields yesterday. Tinfoil-covered cardboard shields. Complete with loops for arms, smaller for Justin and larger for Travis. They spent over an hour cutting, covering, and decorating their shields. They won't last forever, but I have no doubt that the memories will. There are some amazing qualities and experiences savored by little children that become lost in the intermediate years and must be consciously resought by adults. Parents are often adored by little children and mocked by teenagers. But hopefully that comes back around to adoration as the children mature and become adults. These months have allowed my adoration to flourish. Instead of being distraught that I am becoming my mother, I say that with pride. There are some impressive qualities that I cherish and hope that can be attributed to me someday. Just like I desperately hope to inherit some of my grandmother's qualities. It has given me such pleasure working alongside my mother and having the opportunity to serve her in ways that I had never expected. I think I have been more blessed than she has been. That's the way it happens. It gets you when you least expect it. I really like that God works that way. It makes me quite in awe.

So that's what I was thinking this morning. You can think of me this week as I clean my carpet and I hope you can think of the ways God works that make you smile.

Sleep Clinic Visit

2011-05-16T13:48:00.001-05:00

We went to the sleep clinic today and talked with Miss Terry about how to help Justin's sleep. I had to wake the boys early so we could make it to the Med Center for our appointment. Except I didn't have to wake Justin. And therein lies the trouble! We left the house at 6:30 and took our breakfast with us. This was a new floor for us in the clinical building so the boys enjoyed exploring the play area. Every floor is different and Travis is starting to recognize the differences and he has his favorites. The hospital next door that they started building when Justin was born is really taking shape and is scheduled to open this year. Somehow Travis has a bond with the building as he has seen it being build. Out of the window of the exam room we could see another building around the corner that is being prepared for demolition. That is now Travis' favorite thing to watch. Anyway, we had fun before the doctor even came in.

I have to say that it has been one of my favorite appointments. (I think we are up to 9 doctors in at least an annual basis.) The doctor talked with us, including listening to and answering all of Travis' questions. She commented on Travis' choice of outfit (his fireman's coat, cape, compass, fire boots, and gloves) and asked Justin questions too. She believed me when I said that we had a good nighttime routine and that we keep a good schedule. She asked me several times if I understood everything or if I had questions. She wants to do another sleep study, since they like to do one every year to see how things change. She wants a split study, which has the first half of the night regular sleep and the second half with the CPAP to see how that affects sleep. After that we can discuss our options.

So, the upside is that we can get results after only one night rather than having to try two nights. AND, I can get a picture of Justin all hooked up with the stocking hat on his head! I know you are looking forward to that!

Justin did so fabulous during the exam. She wanted to look in his eyes so he grabbed the "eye checker" and looked right into it. He said "ahh" and stuck his tongue out. She didn't even need the tongue depressor (or "thermometer stick" if you ask Travis). Both kids walked out with tape measures and Travis scored a thermometer stick. She was impressed with Justin's ankle strength (she had to check both feet since Justin insisted) and his communication. A little bit of a mommy's boost.

And I am learning that every appointment has one nugget of information which makes the whole thing worth the effort. The nugget from this trip is that a person may suffer from moderate sleep apnea and not feel any problems during the day. No drowsiness, lack of concentration, etc. BUT, a person with mild sleep apnea could have severe trouble during the day! Why does no one mention these things? I kind of feel like that might be good to know. I want to ask every doctor we see, "Now, is there anything you think might not be important for me to know? Because I think I want to know it!"

And I think Miss Terry likes the boys. I wasn't sure I was ever going to get out of there! She kept wanting another hug, another kiss, another knuckle bump, another high five, etc. It took about 5 minutes to get away from the check out desk and all I needed to know was that they'll call me! Travis is very ready to go back!