Oh, Christmas Tree

We managed to put up our Christmas tree. Travis helped. He wanted as many ornanments as he could carry and then he would take and put them all on the same branch. We tried to get him to separate them, but we couldn't quite make it happen every time. He didn't want anyone else putting ornaments on the tree. Fortunately, we put some on before he woke up, otherwise there might only be decoration on the bottom foot of the tree. (My son is short!) Then the boys pushed the tree back into the corner. I love this shot! Travis is such a good helper!

And here's the whole tree. Justin was sleeping or he would have been in the picture too. I wanted a close up of Travis too, but he was singing Jingle Bells and dancing and shaking an ornament that has bells on it.

Full of Thanksgiving

There is a song by Caedmon's Call called Thankful (I think. Ask anyone, I am horrible at remembering names of songs/bands!) The chorus goes something like this, "I'm so thankful, that I'm incapable of doing any good on my own." Every time I think of being thankful, I come back to that song. I am so very thankful that I cannot do ANYTHING on my own. Certainly nothing good. When I try to go it alone, I often crash and burn. Or other times I am just not content. It's not comfortable being outside of God's circle.


Last night when Randy came home with our new car (it's pretty, by the way, and NOT a firetruck...) all I could think about was how thankful I am that we have the resources to buy a car when we "need" it. I am thankful for all of the usual things: family, my home, life, health. But this morning I woke up to change Travis' sheets when he pee-peed in bed and I couldn't go back to sleep. I started thinking about the things that I usually brush over and assume will always be there: my husband, his job, clothes, electricity, the ability to do nearly whatever I want whenever I want. This year it seems like there is so much more for which to be thankful, but it truly is the same as always. God had made himself visible in new ways. But he is the same as he has always been. It is ME who is different. I am so thankful.

Face Time with Daddy

Randy has been working a lot and since the hurricane, traffic has been so bad that he has to leave by 6 am in the morning to make it to work by the time he needs to be there. And some days he doesn't get home before the boys, especially Justin, go to bed. When he is home, Travis is all over him, but he doesn't often get much time alone with Justin. So today, they talked.

They made faces.

And then Justin got tired and needed to rest.

And we bought a car today! Well, Randy bought it. I actually haven't seen it yet. When I told Travis that Daddy couldn't kiss him goodnight because he was buying a car, he asked excitedly if he could buy a firetruck with a siren (and made a siren noise) so he could drive it, and Mommy and Daddy too, and go up the ladder and spray water. He was SO excited that I had to close the door to his room so he would stop talking! I am almost scared to show him the car we DID buy. Because while I haven't seen it, I am pretty sure it's not a firetruck...

Buddy Walk Preview

We will be participating in the Buddy Walk in about 10 days. It is a fundraiser for our chapter of the Down Syndrome Association, and this is a national event is led by the National Down Syndrome Association. This is the blurb on our web site about the Buddy Walk:

There are over 270 Buddy Walks nationwide in which tens of thousands of people from coast to coast, and across the world, participate each year. The goal of the Buddy Walk is to bring about education, acceptance and awareness of Down syndrome, and to create camaraderie within our own community - making the connection between community and individuals with Down syndrome. The Buddy Walk's vision is to create an environment in which individuals with Down syndrome are welcomed with fairness, enthusiasm and encouragement.

The event was originally scheduled for September, so we didn't plan on being able to participate this year because it would be during Justin's recovery. But, thanks to Hurricane Ike, it was rescheduled for December, and now we can walk! I am really looking forward to this because Randy hasn't been able to attend any of the events at the Down Syndrome Association of Houston (DSAH). I want him to be able to meet some of the people I have been talking with and talking about so he can put names with faces. Plus, I am hoping he can meet some dads to make some connections. I have no vision of him making friends like I have, because that is SO a girl thing, but at least he can see what I have been doing.

I picked up our t-shirts yesterday and they are so cool! Justin (and all the people with DS) have blue shirts, and the rest of us have plain white shirts. I think that is really nice. Here's my picture of the boys with their shirts. Justin's might be more appropriately called a dress! I will take lots of pictures during the Walk and post them after the event. You can check out the web site too. Our team is called "Justin's Jaywalkers". Isn't that fun?

Speech Evaluation

Yes, it seems silly to have a therapist evaluate Justin's speech given that he is not anywhere close to speaking, but at this age it is more about feeding techniques. We wanted to ensure that we are using proper techniques so that Justin uses the correct muscles which he will later use for speaking. I learned a whole lot actually. The therapist said that when we are born we have an arched palate that eventually lowers and flattens out as we move our tongues and babble as infants. Because of the low muscle tone in DS babies, that doesn't always happen, which then causes difficulty speaking. Justin, however, has a very good palate, comparatively. She wants us to work on flattening it out some more. And she showed me some about how to feed Justin with the spoon sideways on his lower lip to cause his upper lip to curl over to take the food off the spoon. She also gave us some passive exercises to stretch his lip and cheek muscles. And we have been doing well in some things: We are using a shallow spoon to feed him, we brush his teeth (gums) to get that sensory experience, and she likes the bumbo seat I have been using to feed him since he cannot sit up by himself. He can hold himself very straight and he has good posture. She told us just to skip the bottle and go straight to cup drinking. (I think she couldn't do it either and decided it wasn't worth her time since he is as old as he is.) He is not supposed to have a sippy cup because it still encourages the suckling movement rather than the sucking/pursed lip movement. He can use a cup when he can sit up by himself, but we will have to hold it for a while. She even gave him a veggie stick, like a chip, for him to crunch on the side of him mouth to get the up and down movement going, but he wasn't all that fond of it. He did really well the whole time. We had to go to a different office other than the one that is close to our house, so she won't be our therapist, but she was really helpful and explained so much to me! She also pointed out something that I hadn't noticed: Because of Justin's low muscle tone, his mouth hangs open, and his tongue hangs out, BUT right after he eats, he does a really good job of holding it closed. She said that after his muscles are worked, he has more control. It doesn't last for very long, but that is what we want to develop. This is all just what I took for the session. I am still learning the lingo and starting to get some understanding. It will be a long road, but we're in it for the long haul, so we'll see where it takes us!

Sleep Intervention Cont'd

I am really trying to work on the afternoon nap. I figure I can start there at least.

Travis: He slept for 3 hours in his bed and then he woke up crying, as usual (Want Mommy!) so I got him up and we were sitting on the couch when he fell back asleep. He has been wanting to sleep on my shoulder, so I let him since I had Randy for Justin duty. He slept for another HOUR and then I had to wake him to go over to family's house for dinner. So a total of a 4 hour nap. I would like to switch an hour of that to night sleep. Is that possible?

Justin: He slept for 30 mins and then when he woke I went in to reassure him and he cried for another 20 mins and then he went back to sleep for another hour and when he woke, Randy got him up since it was after the 2 hour mark I said that I would leave him in bed. Then he also fell asleep on Randy's shoulder until we had to wake him up to go to dinner. So he had a good nap, in spurts. I hate that it is so choppy, but 2 parents snuggling with their babies cannot be bad! I love Saturdays!

Then we had dinner with Randy's brother and his family who were visiting from out of town. We got another cousin picture, although it is quite a challenge to get everyone looking at the camera. This is the best we could do before Travis started melting down.

Justin was more fascinated with the reindeer than with the camera. We have to work on that before Christmas because I know we are going to want LOTS of pictures then. They look so cute together! And Travis had a blast playing with "Baby Lauren" as he calls her.

Sleep Intervention

Whenever I decide to work on either sleeping or napping, something goes crazy. I think Travis must be able to read because the morning after the previous post he woke up at 5:11 am. And this morning he woke up at 5:23 am. Great. So we start the day sleep deprived.

I will try one more time to get Justin to nap. I really need to do something to make certain that therapy is productive and worth the money. (BTW I called our new insurance and the person with whom I spoke said that it didn't appear that there was a limit on therapy, but everything isn't loaded into the system yet. I can call back later if I want. Sure, I have nothing but time...)

Nap: I replaced the batteries in the sound machine and fired up the water sound. Justin went to sleep beautifully. For 30 mins. Then he rolled onto his side and cried big tears and whined, not really cried, for the next 1 1/2 hours. And Travis, who I had gone to bed early because of his early morning, woke up crying after 1 hour of nap, so I went in and laid down with him to listen to Justin whine/cry. Travis slept and I even did for a few minutes, until the toddler bed got a little too small for the 2 of us. Then I just laid there and tried not to move. Then we all got up and I had to run another errand (it's that time of year) and Justin fell asleep in the car at 4:45 and I had to wake him up at 6 pm. Justin had a good night last night and didn't wake until 6 am, which is the magical hour after which I allow my children to get out of bed.

I think I need to make a more concerted effort to teach Travis his numbers so that he can read the digital clock in his room so that he doesn't get up too early. Either that or get one of the light alarm clocks so he cannot get up until the light is on. The problem is that the light comes on slowly so Travis will say there is light when it is only a tiny bit. He is too smart for my good.

Sleep

One of my biggest failures as a parent is getting my children to sleep. I have let them cry it out, for several hours. I have played music, I have put up dark curtains, I have rocked them to sleep, and many other things. Travis' naps topped out at 45 mins. as a baby under age 1, and now Justin's are at about 30 mins. He doesn't go to sleep well, and I HATE it. Every day is a struggle to get things done in the 2-hour window I have from when Justin wakes until he gets cranky and sleepy. And you know, the two naps never line up for more than...10 mins. Enough time to wolf down some food and read one section of the newspaper.


Night sleeping is okay, but both kids wake up early, before 6:30 am. Travis has been getting up at 6:02 for the past week. He does wake up happy. At the top of his lungs he cries, " Mommy! I'm awake!" (And he's usually dry, with no diaper, so yeah for him!) A friend lamented that her children woke at the crack of dawn, at 7:00 am. I had to laugh. I haven't slept until 7 am in well over 3 years.


It would not be that important except I am paying good money for therapy and that requires a well-fed, alert baby. Every day I analyze the clock and figure when Justin has to sleep so he will be happy for therapy. It is awful! It never works well. Today he took a nap in the car for his 30 mins. and he was still whiny and unhappy. And that means he sucks his thumb and won't do half of the exercises. Now that he rolls over, I lay him down and he rolls over and wakes himself up and cries. Sometimes I let him cry, depending on Travis and he cries off and on for 2 hours. I don't know if he sleeps. Sometimes, I don't care. I know parents obsess about little things, definitely my little thing these days is sleep. Part of me can't wait until they grow out of naps, even though I know it's something that most parents dread. If anyone has ideas, I would welcome them. I am still waiting for the magic solution, or the ah-hah moment when I realize what I have been doing wrong and how I have scarred them for life. I think I have to do that at least once a...day?

Physical Therapy

We had our first physical therapy appointment this morning. It was so great! I really liked the therapist. She did a very thorough evaluation and picked up on things that I hadn't even noticed. I am learning the lingo and the things that the therapists are looking for Justin to be able to do. There are so many "milestones" that I never even knew existed. He can hold items centered with both of his hands, he crosses mid line with one hand to grab things on the opposite side, and he can move his head in every direction. The therapist today noted that when Justin is seated, he does not reach above 90 degrees to grab an object. I never noticed that. And he stretches out his right arm when he is trying to support himself on his stomach (he doesn't keep his arms underneath him). He is REALLY attached to his thumb too, so we have to find something interesting enough to encourage him to take his thumb out and reach for it. She said that overall his muscle tone seems good, but at the joints it seems to be a bit weaker. She even took his shirt off and had me encourage him to move his head and arm so that she could see how the muscles in his back moved. Wow! I was very impressed. We go back on Thursday and I hope Justin is in a good mood to do some good work. She will give us some exercises to work on, but just watching her gives me lots of new ideas.


This was the place that warned me about the potential problem with our new insurance. I also went to another place yesterday, and both places verified my insurance and found out what I owe, and yet they charged me vastly different amounts. So SOMEONE is wrong, and I am hoping it is the place today and that they are also wrong about our new insurance. A girl can hope, right?

A Good Start to the Week (Another Trip to the Doctor)

We started out this morning with a return trip to the cardiologist. It was a super appointment! The chest x-ray showed that Justin's heart is normal-sized; it shrunk from the last x-ray. That is wonderful! That earned us the okay to drop Justin's blood pressure medicine, so now we are drug-free again. And we don't have to return until February! And then if the x-ray is unchanged, we can stay off the medicine for good. That was the good start to our busy week.

We have 5 therapy appointments this week, so Travis went with us to the doctor because he cannot go to therapy and I hate continually sending him away. As a result of his frequent doctor visits, he plays doctor a lot. He fixes out hearts and "checks" us, actually, he does this to anyone who allows it. Usually that is only us, but I did walk in on him fixing the person watching the children last night during our small group meeting. What a good sport! Travis has no doctor supplies (he is getting some for Christmas; please don't tell him!), but like the blower and trimmer outside, he has improvised. His instruments of choice are a cell phone and a leather shoe lace. I am not sure what they are supposed to be, but he uses them all the time.

Also, I am a bit late, but here is a picture 2 months post-op of Justin's chest:

It looks great! We are so pleased. We know it will shrink comparatively as he gets older. He isn't bothered by it at all, and he is rolling all over the place.

It looks like we are getting a new car this week. The car Randy drives has broken down for the third time in about 2 months. We have to get it towed in the morning, but Randy thinks it is bad. I don't mind the new car, but that means we will have to delay the new back door even longer. I think we will paint a scene on the plywood that covers the door so that people can see what it would look like if there was glass instead of plywood. Now we just have to decide: day or night? Night is easier, especially since there are no raccoons to paint, but day is much prettier in spite of the lack of grass.

I Am a Better Mom Than I Thought I Was

I went to the Mother's Coffee this week at the DSAH. I was able to go solo because my mother came to town and she stayed home with both boys. It was a wonderful morning. It was a small group and all the children were younger so I was able to ask more questions and find out what other families are doing. We also had a mother with a child with Prader-Willi syndrome which is more rare than DS, but has some similarities so she came to our meeting to find some support from people going through similar issues. I also met a woman whose daughter was born at the same birth center Justin was born at only 3 1/2 months earlier.



I was curious what other people thought about ECI services that they are receiving. Most of the women said that it seemed like the more serious the issues at birth the more services that are offered and they never really decrease. On the other hand, it is much more difficult to increase services later. One of the women has a 2 year-old son and he has never had anything but speech therapy twice a month. And he is doing wonderfully. He has accomplished all of his gross motor skills close to on-time. Their plan for him is to have things as close to "normal" for his because he will have to live in the "normal" world eventually. She allows for things to adapt and adjust, which I think is good. She summed it up by saying, "So I think in the end, I am just a better mom than I thought I was." I though that was great. Aren't we all? I know I think worse of myself than I probably should, and while it pushes me to do better, in the end it's going to be okay, whatever it is.

The other thing that I think was interesting was we all have a new perspective on odds. There was a .3% chance of Justin being born with DS. There is a 1% chance of us having another child with DS. That's a 99% chance of NOT having DS, but still 3 times the chance we had with Justin. The chance of the mother of the child with Prader-Willi to have had her is .08% and it happened. One of the mothers said that she would like another child, but it's a lot to care for one special-needs child, and even if a subsequent child does not have DS, there are lots of other syndromes out there too.

And then there's trust. While we may not see another child in our future, does God? Will I trust that his plan is better than mine? It is a huge leap of faith for me just to say, "Not my will, but thine be done" but LIVING it is sometimes beyond reach. I fall short time after time, but like I tell Travis, we serve a God who forgives us again and again, and who loves us through it all. I often need it as much as Travis!

Therapy

When we went to the DS Clinic last week they gave us a list of therapists who various other clients have used. That was to be our starting point for searching for additional therapy options. It had about 25 names on it and after eliminating the 10 or so that are too far away I called the rest. Wow, not fun. I got a variety of responses: We don't accept your insurance, we only take Medicaid, we no longer do pediatric therapy, we have an indefinitely long waiting list, we have no one available in your area, we only do therapy for the CLASS program (one of the 8-year lists Justin is on), and we have no openings. That left 2 places. I have appointments with both places, but I also learned something interesting about our new insurance. Apparently we have a limit of 25 combined sessions of PT/OT for the life of the plan. Not per incident, not per year, per plan. As long as we have the insurance we can only use 25 visits. We can burn through those in 3 months! After that it's out of pocket. And technically Speech is included, but for some reason they continue to pay for speech unless you press the issue with PT and OT and then they cut off everything and bill you for what they overpaid for speech.

Now this is only what someone told me. Our plan COULD be different. I don't know. But anyway, it's something else I could stress about. But I have decided not to. God is teaching me and I am trying to learn. I stressed about BCBS and our pediatrician and that was resolved without incident. I stressed about Randy having to leave the hospital during the hurricane and he never had to go. This has more than 6 weeks before it's a problem, and God can work in an instant. Can you imagine the things he can do in 6 weeks? We could lose our jobs. Justin could make radical progress and not require therapy. Someone could offer to pay for all Justin's therapy. And my favorite: Jesus could return. I trust God to take care of ALL my needs and if I am going to say that I need to act like I believe it. And I do believe it. God had proved himself again and again and I LOVE seeing where he works. Last week we had to drop Travis off with some friends at 6:30 am and I just marveled at how God led us to our home almost 10 years ago knowing then that we would need friends close by to help us during this time. We have so many friends close by who would help us in a heartbeat and God knew to put us RIGHT HERE. I love it! God is SO good!

Can you Help a Brother?

Yesterday I was cooking and Travis had taken his sock off (why, I don't know...) and I was too busy right at that moment to put it back on. So Travis decided to look for help elsewhere..

Justin, could you give me a hand?

Pictures and More

I forgot to mention that another one of the things we talked about with the social worker on Monday was about which Medicaid waiver lists we need to get Justin's name on. The lists have about an 8 year wait, so we need to get on them now to make certain that we get the benefits when we need them. One list is only for Texas and the other is only for our county, so if we move from either we go back to the bottom of the list wherever we move. These are state programs, so every state is different. For example, in Maine you can receive benefits the next day, but in Oklahoma, the wait is about 7 years. And the more we talked, the more I noticed that the "blue" states get more immediate help, but the "red" states tend to have lists, long lists. Just an observation. So we almost have to decide where we want to live for the rest of our lives, if we want some of these benefits. I am supposed to keep a spread sheet with all of the numbers and contacts I have with each of these programs. We are about number 23,000 on one list, and each year we get a letter with his number and I have to verify we want to remain on the list. So the file cabinets I have will be filled VERY easily!

And we had pictures taken today. We tried last week. That says it all. This week we had more success, and this is my favorite shot of the day:

I still cannot volunteer that Justin has DS. I don't know why! The photographer was perplexed why he couldn't sit up and she asked if he was premature. I just said no. I do know there will be a time that it is clear, so I continue to bask in the joy of ignorance. I spoke to another woman whose daughter is a couple weeks older than Justin and her daughter is very clearly DS she says. And people are always coming up to her and talking about their experiences with DS. I guess some of that would be okay, but I think I would have to ask God to filter that for me and to give me the words to say to those people. I believe that God can do so much more than we ever ask of him, and I think that is one of the things I need to start to pray about.

I also got some pictures of the boys together. A bit more of a challenge, but there were some good ones. This one is a weird angle, but it has Justin smiling a bit more. I was exhausted from making Justin smile. I wish the little feather-on-a-stick worked like it does on other children!

And Justin rolled over the OTHER way! On Friday we went to the doctor for the synegis shot and while we were waiting Justin rolled over on the exam table! Back to front... and now he has done it another time too. And he is doing front to back again since surgery. I am one proud mama!

So tonight Randy took Travis out and I put Justin to bed myself. We had such a good talk before he went to bed! We laughed and smiled and for the first time be really belly laughed! It was amazing. Almost makes me want to cry. I do have to work so hard to get responses that when I do I want to enjoy them. Justin is so fantastic, but it is incredibly easy to get lost in comparisons and by-gone wishes and dreams. I love that Justin is so attached to me, but I know I am on the road to be an over-protective mother. I think I want to stray down this path a bit longer though. The rewards are still quite nice.

Down Syndrome Clinic

We headed down to TCH one more time for our appointment with the Down Syndrome Clinic. It was nice with the time change not to be driving the entire trip in the dark! We met with several doctors, physical therapists, occupational therapists, a social worker, a speech therapist, and...I think that's all. Oh, wait, and a nutritionist. It was quite comprehensive, but nothing totally brand new to us. They estimated him to be at about the level of a six-month-old baby, which given his adjustment for surgery, is right on target. Now, we have to keep him progressing so the gap doesn't widen. They recommended that we increase his therapy, which we knew they would. Right now he only receives twice a month therapy (OT) and they recommend twice weekly OT, PT, and Speech therapy. Now, we just have to determine where the line is: Where is the point where Justin gets enough help that he progresses and we are able to continue working at home, without our family going broke in co-pays (that's $150/week if we do it all) and it taking a toll on Travis and the rest of our lives? We're not sure yet. Since our insurance changes in January, we have a little time to scout out some other therapy options and then start the new year with the changes.

We were optimistic about the appointment and it was positive for us. Justin is progressing and while there are things we could be working on, we're moving in the right direction. There's always so much information to process, and they gave us ANOTHER packet of information to read so we have more to try to fit in our heads somehow. Is it possible to hire someone to read and then teach it all to me? I have a stack that is about 6 books high right now, and they are all as interesting as textbooks. I love to read and I want to read, but the extra hour we got this weekend did not cut it!

Halloween

Randy was off so we had a lazy day. Justin got his first dose of the synagis vaccine which will protect him from RSV this season. (He has to get a shot every 28-32 days through March.) And Travis fell asleep in the car on the way home and missed lunch while he slept for 3 hours. I voted early! I waited in line for only 45 minutes.

Then we dressed the boys up in their costumes and went to the TD Family's house for dinner and then trick-or-treating. The boys dressed as M&M's. Travis liked it and Justin didn't really care. I couldn't find gloves for Justin, so I improvised and used socks. I cut holes so he could suck him thumbs, and the right sock was VERY wet by the end of the evening. The gloves worked both for the costume and to prevent the saliva issue from Hand, Foot and Mouth disease. (If he does have it...I cannot justify a co-pay to find out if he has something that cannot be treated with medicine.) He didn't suck his thumb most of the evening. I think the promise of lots of candy might have helped with that!