Friday, June 29, 2012

Therapy

I love our therapists.  I cannot rave enough about how much they do for Justin, and really our whole family.  One of the things I love about them is they write sweet little notes about what Justin did in therapy.  I have a whole collection of really encouraging samples of Justin's accomplishments.  Miss Caroline even dates them so I can keep track of everything.  Miss Sarah has taken videos of Justin and writes down his new words when he seems to have a word explosion.  They are as proud of him as we are.  They laugh with him and love his cuddles as much as his mama.  I think that is so amazing.  As much as I constantly reevaluate our plan for Justin, I know I don't need to waste much time thinking through our decision to keep Justin with his therapists.  They are definite keepers!

Thursday, June 28, 2012

A Surprise Visit

We got an unexpected visit from Mommy Sharon and Daddy Jack.  They used to babysit me when I was a baby.  They took a detour on their way home from a trip to visit family in Arizona and ended up at our house for the night!   There have been several occasions when my kids have gotten to spend time with them and they love them as much as I do.  It just melts my heart to hear Travis say "Daddy Jack".  Whenever we are able to see them, I have to get a picture to remember the occasion.  This time, the boys wanted a picture with just them and Daddy Jack.  It will definitely be a treasured picture.  I love that Daddy Jack loves my kids, just like he loves me.



And Mommy Sharon is my Baby Whisperer.  She is the one who has advice for every situation.  She has kept over 400 foster babies and she knows all the tricks.  Daddy Jack even told me that pediatricians used to ask her for advice when she was in the thick of foster parenting.  She has made beautiful birth samplers for my boys and Alaina's will be ready soon.


I am so thankful for the short visit. I don't miss the value in every encounter and every moment the older I get.   Life is so short and phases pass so quickly.   I couldn't help but cry when I mailed Alaina's birth announcment to my grandmother.   I want so badly for them to meet, but as quickly as the thought entered my mind, it rushed out as I was filled with the image of heaven and how much more important it is for them to be together in heaven.  An earthly visit would be nice, but heaven is so much better.

Monday, June 25, 2012

Sports Camp

Sports Camp may have been the most highly anticipated event on Travis' summer schedule.  He has been excited about it since last year, and the enthusiasm never waned.  Last year he was on Team 45, for the 4 and 5-year olds (they work on sports skills like jump roping, throwing, kicking, etc.), and this year he got to pick a sport.  He declared that soccer would be his choice and that has not changed either.  So this past week it was finally time for Sports Camp.  It's three hours in the evening, from 5-8 pm, and I worked on the snack team so we had to be there early.  So all week it was an early snack/dinner and then out the door.  It's good that Alaina is so young and can sleep anywhere because the toddlers were nearly beside themselves with exhaustion by the end of the week.  Justin did okay because when he gets tired he's a cuddly tired, not a cranky tired.  All his coaches loved that!

The theme this year was Olympics, Beyond the Gold.  The verse was 1 Corin. 9: 24-25, which Travis learned before the week even started because he wanted to be sure to get a pin like he did last year (which he still wears at least once a month, along with his wrist band.)  Each day they have a theme word, like teamwork or respect, and they tell a sports story to focus on that theme.  Then they tell a Bible story that also emphasizes the word of the day.  The kids bring home a pamphlet with games and highlights from the story along with review questions that needs to be returned the next day to go in a drawing to win sports gear (jump ropes, soccer balls, and the all-important wrist bands.)

Here we are in our t-shirts.  You can see the boys pins on their shirts.  Justin conned one of the coaches into giving him a pin the first day too, even though he hadn't learned the verse.  Team 45 learned hand motions for the verse, which Justin did very well.


The evening started out with some high-energy singing.  The kids all loved this part.  It didn't take long for them to learn the songs and the motions to go along with them.  They are mostly songs written specifically to go along with the program.  Here's Justin's group:

And Travis' group:
(This was crazy hair and sock day, thus the crazy outfits)


We had a little over 100 kids in the program (our church's VBS).  Plus about 40 volunteers and the college kids who travel around doing these camps all summer.


On Friday the kids who are in individual sports play a game of campers vs. coaches.  The parents are invited to watch.  Travis almost scored here!  (The campers won only because it was like 25 on 6.)


I told you the kids were tired by Friday.  Travis spent a lot of time on the ground.  Plus it was really hot!


Randy was able to come and watch the game.  And Alaina slept.  We didn't get home until close to 9 pm every night and by Wednesday morning my kids slept in to the late hour of 7:30!  It was bliss!




Team 45 performed their memory verse and an adorable song about Noah.  Justin was so good!  It was a long song and he did a great job.  He was very proud of himself.



This is Justin tooting on his horn.  This might be my favorite part!  He really got into it!


And Team 45 all got medals for being a part of the program.  Justin's smiles sometimes confuse me.  He really was happy!




Travis won a soccer ball the last day.  Actually, another soccer player won the ball, and gave it to Travis because he saw how much he wanted it.  It was really nice of his friend to share with him.




Sports Camp was an amazing success and both boys and pumped for next year.  Justin will spent another year in Team 45 and Travis is all ready for another go at soccer.  It's a really fun twist on VBS and it's great that it gets the kids moving.  And the boys slept in until after 7 am until Monday morning.  I love Sports Camp just for that!

Saturday, June 23, 2012

Family Outing

We enjoyed a trip to the local Black Light Mini Golf Course on Randy's day off last week.  The boys played and Randy assisted while I carried our sleeping baby Alaina.  We were the first customers of the morning and it took a while for the lights to warm up so we weren't sure we would be able to see very well, but by the back nine holes it was much easier to see.  The first nine holes are a animal/jungle theme, and the last nine holes are dinosaurs.  Randy and I went once on a date night, and I took Travis on a mommy-Travis day, and he has been asking to go back forever.  It's a little expensive, but you only have to play if you play, so Randy and I were able to go through without paying.  Which really helps because the boys need lots of corralling.  They were all over the place!  So glad we were the first ones in so we got a good head start on the next group.



There was a whole lot of checking out where the ball went.  This one he could almost crawl through!


Oh, oh!  He lost his ball!  Randy had to find it under the octopus' rock.




Since we didn't do any school that day, Travis did some reading and learned some interesting facts about animals.  Check out his cool Sports Camp wristband.  That post coming soon.


Justin really wanted to golf on his own, but he didn't always get the concept of hitting the ball with the flat side of the club...

or that you couldn't touch the ball.  When he couldn't hit it through the tiki mask, he just rolled it through.

Yeah!  It worked!


The boys spent a lot of time watching the ball go under things.

All in all, it was a fun outing.  The boys all enojyed themselves, even Randy.  He borrowed the short putters and tried a few shots himself.  I hope it doesn't give him an advantage the next time he and I go golfing!  It's a really different golfing experience, and perfect for hot Houston summers when you don't really want to go outside.  You really need to watch where you walk so you don't trip.  Justin took a few tumbles, but nothing major.  I think he is very good at falling!  We will definitely do it again sometime!


Friday, June 22, 2012

A Dirty Weekend

We decided to start Justin's "clean out" on Saturday morning since we had nowhere to go and nothing else to do.  Actually, anything would have been better than this, but since we knew it had to be done this was as good of a time as any.  Randy mixed up the solution to begin chilling the night before.  It is a gallon of basically salt water that we needed to get Justin to drink until he was "clean".  There were four flavor packets from which to chose to flavor the mixture.  We were told that the flavor packets might need "enhancing" so we had already cleared it with the doctor to add some of the Mio drops to improve the taste without adding to the volume than needed to be drunk.  So after adding the flavor packet (we chose cherry) Randy added some Mio.  He added almost half a bottle before he deemed it "Justin-palatable"!  And into the refrigerator it went to get an cold as possible (apparently that helps the flavor too.)


Bright and early Saturday morning we poured Justin his first glass of "juice". The first one went down okay. He drank it with breakfast. (Since he wasn't doing this to prepare for a colonoscopy, which is the usual reason, he could still eat food.) He needed to drink 4 ounces every hour. By lunch time he had drunk 4 glasses with no results. We decided to forgo nap to keep the process moving along so we watched some TV and drank more juice. We were hoping he would get involved in a movie and we could encourage him to drink without much resistance. Well, not so much. One thing we had failed to notice was that the Mio we had added was Mio Energy, with caffeine. I didn't realize Randy would add quite so much so after 6 glasses he was bouncing off the walls!! Randy and I were laughing so hard at his antics!   He dressed up in crazy outfits and was falling down just to fall down. 






It wasn't until close to 4 pm before Justin produced anything from all his drinking.  After his first round of dirty diapers he fell asleep in my lap.  He woke up an hour later coughing and then he threw up.  Red.  Cherry red.  All over me.  Fortunately he missed the white couch.  After a bath and a clean diaper we were good. He threw up a couple more times and after each time he wanted more to eat.  I called a doctor friend for advice because by this time we didn't know if we should keep encouraging him to drink or if the throwing up was okay or if we should do something else.  She said we were okay, but we agreed to stop drinking for the night and let what was there keep working and then restart again in the morning.

Sunday morning we skipped church and switched Justin to apple juice to keep things moving.  He kept making diapers all day long, and he needed several baths during the day when his diaper didn't contain everything his body was producing.  Justin's stomach was getting much softer and smaller with all that was coming out and we all agreed that we had never seen his stomach so small and flat in a long time.  You could actually see him suck in his tummy when we laid him down to change his diapers.

This wasn't enough drama, so our a/c decided to conk out in the middle of this saga.  We had to pack up a large bag of diapers, plus extra pajamas and mattress pads to protect Me-Me and Pop's beds.  After we finally got everyone in bed for the night, Justin came out four times with more dirty diapers.  The first one required a bath and a change of pajamas and sheets.  After the fourth round Justin was done for the night and we were able to get some sleep.

The next morning we started Justin on some of the maintenance medicine to continue keeping things moving.  We had to determine how much to give him to start, since we don't really know how much he needs.  I am always tempted to be cautious since it takes more time for medicine to get through his system. I hate to overload him too soon without taking the time for things to build up.  We spoke with the nurse at the doctor's office to make sure we were still on the right track.  Justin did great the first couple of days and then on Wednesday he stopped making dirty diapers.  For the next few days he did just small diapers and so we increased his dosage slightly.  Already he is taking an adult dosage which seems like so much but it's still not having the desired affect.

It has been another week and we are not making the kind of progress I had hoped.  The medicine just does not seem to work for Justin the way it is supposed to work.  We seem to have more questions than we have answers and we struggle with how to proceed.  Justin continues to fill back up and we do not want to have to do another complete clean out.  We will see how this weekend goes and then we will reevaluate and talk with the nurses again.  I feel so badly for Justin.  I want to help him feel better but I don't know how.  We wondered if maybe part of his tiredness is because he's carrying around all that excess yuck in him all the time.  It certainly can't help.  And I cannot potty train without fixing this problem first.  Please pray for our little guy!

Thursday, June 14, 2012

Down Syndrome Clinic and More


Alaina took her first of many trips to Justin’s doctors appointments today.  We hit the DS Clinic and made our first visit to the GI doctor.  They both went very well in their own way.  And Alaina did her part and quietly slept through both appointments.



The DS Clinic was first, and I like going to this appointment because I like showing off what Justin has learned.  He did great!  He drew circles and identified pictures and stacked blocks just like a champ.  And it has been a long time since Randy has been to an appointment so it was good for him to see what goes on and what Justin does.  He got an OT and speech evaluation and both set his developmental age right under three years, with a smattering of skills above three.  They both were very encouraged with his rate of progress.  He is still making large gains, with no signs of plateauing.  And the doctor was encouraging for the first time with some of Justin’s medical struggles.  She agrees with our decisions about his sleep problems and was just as frustrated as we are with searching for answers.  And she told us that the protocol for DS has added a sleep study at age four for all kids with DS.  It seems that it is more prevalent than once thought, close to 50-75%.  And it only increases with age.  I had felt that she dismissed our concerns before, but now with more studies and a change in protocol, we’re not as hyper-sensitive as she once thought.  It was a good appointment and we are now good for another year!



The afternoon brought us to the GI doctor.  We went to one of the satellite clinics on our side of town, the place that is the parking nightmare.  Randy had never been there (it’s difficult for me to remember where he hasn’t been since we see so many doctors at this clinic) it figures we would find a place to park right away.  The first thing the doctor wanted to do was take an x-ray since she had looked at his chart and saw the horrible x-ray from September (which was the worst she said she had ever seen and that was after 6 diapers.)  She couldn’t see the x-ray from the ER so she wanted another baseline.  It wasn’t so bad, but Justin still was pretty full.  So after much discussion and debate, she decided the best course of action was a colon cleanse and then start over with a maintenance medicine to keep him going.  She consulted with a doctor at the Motility Clinic, a sub-specialty within GI.  Does it seem crazy that there are doctors who just study the motility of food and waste through the colon and intestines?  It doesn’t seem like that would be a very popular specialty!  We will probably visit them sometime so I will get to see what that’s all about.  We get to do all this with Justin and go back in four weeks to report our progress.



So this weekend we will be staying at home, encouraging Justin to drink salt water and changing his diaper.  And probably giving him baths and doing some laundry.  We hope.  It always takes Justin longer to get his system moving so we’ll see how this works.  Everything is based in adult dosages so we have to be careful not to overdo it, but still give him enough to make it work.  We don’t want to have to do this again!  Justin has suffered so much, and I just want him to feel better.



This week was also VBS at one of our neighborhood churches.  The boys went last year and had lots of fun so I was glad they could go this year again.  Randy and I were able to spend some time together with Alaina which was a treat.  Next week is Sports Camp at our church and Travis is SO excited.  He has been anxiously waiting since last year.  He even learned his memory verse already so he could get a pin like last year.  He wants a wrist band to go with his from last year too.  It should be lots of fun!

More Pictures

I got a request for more pictures.  I know I have been a bit behind, but this little vacation with Randy home has been anything but relaxing.  A huge storm went through this week and knocked out our power for 11 hours.  From dinner time until about 4 am.  It was hot and very dark.  I didn't realize how dark the city could actually be.  Feeding Alaina was a challenge since she's still not great at latching on without assistance.  It was so nice to have the power back on!  I just wish we could have a "do over" of the past two weeks, but without all the drama.

So, here are a few pics from this week:




Our first Sunday with Alaina at church.  Check out Justin's smile!


Justin wants to be with Alaina whenever he can.  He wants to sleep with her, hold her hand, and help with whatever she needs.  It's precious!

Saturday, June 9, 2012

Since Then

Alaina was born almost a week ago and it has been quite a week.  Alaina may have been the easiest part of it!  Well, maybe minus the first couple of nights.  She slept most of the days and then was up fussing during the night.  My awesome husband took the first shift of the night after I finished feeding her and then I did second shift and it worked very well.  By the third night we were doing much better and we both got more sleep.

We got some visits from friends to share our sweet girl. 



Clara requested a baby sister of her own.  I think she'll have to settle for sharing Travis' sister.


We took a trip to the pediatrician who declared her "perfect".  (We knew it already.)  Alaina wasn't fond of the once over, but Justin was a good big brother and tried to help her feel better.  He tells her "shh" when she cries.


Then we went to therapy where she got to meet all the therapists.  They all love her and fought to hold her.  Miss Caroline was enamored and Miss Sarah wanted to keep her during Justin's therapy.  She said she could work her into the session and Justin would enjoy it too!



There was lots of bonding time with Daddy and brothers.  Justin wanted to be in all the pictures!


There was lots of napping too.  Alaina is a great snuggler, just like her big brothers.



Some friends came to visit us Tuesday night and while they were here, Justin hurt himself somehow.  He started screaming and when I ran to him he was just standing beside the bed crying.  He looked fine, except for the tears and a little scrape near his eye.  He couldn't tell me what happened, but we figured out something more must have happened by the time he woke up with this:




His first shiner!

And then Wednesday things started getting crazy.  I left the freezer door open and everything thawed overnight.  I found it on our way to therapy so when we came home, my mom and Randy went through it all to see what we could save and what needed to be thrown out.  We cooked the four frozen pizzas for lunch, but the ice cream was all lost.  It was terribly sad since I had made spaghetti sauce, soup, meatloaf, muffins, and other things to eat over the next few months.  So now I am back to zero.  Not a happy day.  But that was better than what happened later.

We invited Randy's parents over for dinner (since we had lots to eat) and while we were eating, we noticed it was getting hotter.  Oh yeah, air conditioner failure again.  So we packed up and headed to Randy's parents house again.  I cried.  I had already planned a good cry for that evening after the freezer disaster.  It just got moved up a few hours.

And on our way over to their house, it started raining.  Heavy sleeting rain that turned into hail.  Hail!  Are you kidding me?  It's after 7 pm, I have three kids in the car, our new car, and it's hailing marble sized hail.  I called my mom and cried to her.  What else could I do? 

When the call was put it for fixing, the best estimate for when they could come look at it was next Tuesday.  I didn't cry, but I did appeal to Randy for a quicker fix.  By Friday he found someone who could come fix it and we were back home for the weekend.  We all breathed a sigh of relief.  Randy got a big hug and kiss.  Poor guy has had a tough week!

While we were at Me-Me and Pop's house, Travis and Justin helped make a cake for Alaina.  I guess it was a birthday cake?  Travis frosted and sprinkled it!


Justin and Alaina got some joint diaper changes.  They used the time to get to know each other!


And Uncle Craig and Aunt Kristi and cousin Lauren came to visit and meet Alaina.  It was a fun visit!  Travis and Lauren are great buddies and partners in all things adventurous.


We have almost made it one week and it hardly seems like we have gotten the family time I had hoped for Alaina's first week.  I am praying the next week is more calm and enjoyable. Alaina has been so good and adaptable with all the adventures.  She continues to be a blessing to us all!

Monday, June 4, 2012

She's Here!

I know, you were all beginning to wonder if she would ever arrive.  Oh wait, that was just me.

Things finally kicked into gear Saturday night and she made her appearance Sunday morning.  Her name is Alaina Nicole and she is beautiful.  Her birth went perfectly too, except for the whole pain thing.  I do not want to experience anything more painful than childbirth.  Ever.  Is it right to pray that?  Okay, you women know what I mean so I'll just move on.

My mom has been here waiting for baby to arrive for nearly two weeks.  She was so very good about not making me feel badly for not giving birth sooner, even though our friend offered to get things going with the trigger point massage.  Randy kept telling me that this weekend would be good and as Saturday wore down I was wondering if I would ever go into labor.  The pressure was on, and then the pain started.  Of course, my mom had decided to go to her cousin's grandson's high school graduation (in Katy) and so she wasn't planning to spend the night at our house.  Randy wasn't wanting to call her and ask her to come home, just in case things slowed down, but after a couple of hours (of him sleeping and me hoping things would progress because it was starting to get fairly painful) I made him call her.

Then it was more walking and more contractions until Randy called our doula.  She said that she could meet us at the birth center and help us make some more progress until she needed to call the midwife.  That sounded good to me, so we went in around 4:30 am.

When we got there we settled right in and I began walking laps around the birth center.  I think you can see the path I wore in the floor.  I am in awe of women who can lay in bed and have a baby without moving around.  I was walking pretty fast because you know, if you move quickly enough you can outrun the pain.   (I wish...)  Randy and the doula were talking and laughing.  I wasn't sure how anything could be funny at a time like that, but I wasn't stopping to ask.  Our doula asked me to lay down for three contractions so they could monitor the baby and check me.  I dilate very slowly, so I was just hoping that I was at least a 5, which I wasn't, but I was 90% effaced, which they tried to convince me was even better than being dilated.  If they had told me that before labor, maybe I would have believed them but the magical "10 cm" is so drilled into pregnant women that no other numbers mattered at that time.

I have no concept of time after arriving at the birth center, so when I finally did get in the tub, all I could think about was "no more contractions without a baby".  With Travis I had back labor, which was brutal, and Justin was regular painful labor (I think the easiest- isn't God so smart for planning it that way?) and Alaina was both.  That is not right.  So no position was comfortable in the tub and I just wanted her out.  I am glad Randy was there to see all the sweet touchy feely stuff and the doula was there to take pictures so later, after the pain, I could pretend that I enjoyed it all too.
And you know what?  Every snuggle, every smile, every little grasp of my finger, every sigh makes it all go away.

I mean, how could this face just not make you melt?


After she was born, we were able to bask in the moment and enjoy our new daughter.  She was technically "late" but she seemed right on time by her look.  Randy was able to hold her and get some Daddy-daughter bonding time while I got cleaned up.



She is perfectly made by God just the way he planned her to be.



We called home and had my mom and the boys come up and meet their new granddaughter and sister.  Travis loved her and wanted to hold her right away.  He has been wanting to be one of the first for a long time.  He did so well!




Justin did great too.  I cannot tell you how much I love this picture.  I hope Alaina treasures it as much as I do.  He has done well saying her name.  He calls her "Laina". 



The guys were doing "This Little Piggy" with her fingers.  It has been one of Justin's favorite games lately.  He can say "Wee, wee, wee, home!"  He does it with all fingers and toes.  He's not particular!


Our family of five!


After the boys' visit, Alaina and I got cleaned up one more time and she got dressed to go home.  That was emotional for me because it was when Randy dressed Justin that he felt like he knew that Justin had Down syndrome.  At various times throughout the morning, Randy had peaked at Alaina's hands and feet and ears to see if he saw the markers for DS that we have come to recognize in Justin.  He didn't see anything unusual and neither did I.  We didn't go through any of the prenatal tests because it wouldn't have changed our decision to go ahead with the pregnancy.  We did opt for an ultrasound to check for general abnormalities that could have been markers of something more serious and we would have followed up if something had been detected then.  It's hard to describe the emotions that go along with regular childbirth, and the little voice causing worry and doubt was difficult to ignore the entire nine months.  Early on in my pregnancy I was reminded very forcefully of the quote by Jim Elliot that says, “He is no fool who gives what he cannot keep to gain that which he cannot lose.”  That is what I held onto for Alaina.  When she was very tiny I gave her to God, and then I did it again and again throughout the nine months.  It's something I need to do for all my children because there is no amount of strength or wisdom or security by me that will guarantee their entry into heaven.  It's only by giving them up that God can take control.  It's hard for me, but I know that's his way.  And his way is the best.

We were on our way home not long after that and we had a reception from Pop, Me-Me, Nana and the boys when we arrived.  Pop and Me-Me were anxious to meet Alaina and get in some cuddle time.
 




Travis did not want to leave us at the birth center and he met us out in the driveway when we got home.  He wanted to hold Alaina again!  He is turning out to be a great big brother!  I really had no doubt.





Then it was time for naps.  The guys settled in together and took a long nap.  Alaina got a good rest after her tough morning journey and I took a few cat naps throughout the day.  It was a good first day with our family of five.  Lots more exciting times to come I am sure.  Randy gets to be home with us for a couple of weeks which will be tons of fun for us all, though I am sure it will go by quickly. 



Happy Birthday Alaina!  Welcome to our family!  We are so happy you are here!