Noah's arching has just become very frustrating. His strength is almost uncontrollable, and every time he arches my arm literally pops out of socket, that's how strong he is. The therapists keep telling me to break up his arching at his waist, but it's almost impossible once he locks his legs there is nothing you can do to make his hips flex. Carrying him is terrible. Our occupational therapist says that this is very common with brain injury babies and that sometimes they'll come out of it and sometimes they won't. I'm really liking our occupational therapist a lot. She is so nice, and understands the importance of keeping Noah as healthy as possible for his continued recovery, so she's having me call her when I'm in the parking lot because she doesn't want me in the waiting room with other children and we have a private therapy room for Noah. And now that we're coming up on germ season again, we'll have to be careful again who Noah is around should they be sick.
Our occupational therapist is also doing a home visit tomorrow to see if we have a proper high chair, stroller, toys and things for Noah for his therapy. It was so wonderful for her to offer to come to the house to help us. She also recommended a pediatric therapy seat for Noah called a Tumble Form/Position seat. These go from anywhere from $350-$700. Something that Medicaid doesn't pay for. Yesterday Chris and I were watching the news and it said it takes $250,000 to raise one child to the age of eighteen, but we're wondering just how much will it cost us to raise Noah? Millions?
I also have been bombarded with this commercial on television for the storage of cord blood at birth. They have this cute little girl in pigtails playing on the playground and the commercial says she was born with a brain injury at birth but completely recovered due to cord blood therapy. The commercial made me a little bitter. I understand the choice to store cord blood for future possible purposes as an option, but I think that if you know that you have a brain injury at the time of birth that it should be the medical community's obligation to use the cord blood right then and there as a form of treatment. Bill me, I don't care, they billed me hundreds of thousands for brain cooling, so what's a few more thousands for taking our cord blood and giving it to him rather than just throwing it away! And I don't understand the controversy with stem cells. Regardless if you're pro-life or not, the realization is that the medical field throws out hundreds of thousands of embryos from in-vitro practices, if they're being thrown out anyways then why not use them? I think it's outrageous that other mothers are having to travel all the way to Costa Rica for treatment for their children. There is so much about the United States' medical practices that make me fume. And does the government really think they'll cure the "we won't cover pre-existing?" I'd like to see this all happen. In a perfect world really... It's about money, and I don't see that changing and someone needs to lobby for the use of cord blood upon birth for complications like Noah's.
Noah is at least trying to be happy in his stroller, and when I say "trying" I mean just that. It's a work in progress. He much prefers to be strolling outside but hates to be strolled really in shopping establishments unless it's Best Buy and we're staring at a wall of a hundred televisions. Most moms take their kids to the zoo for entertainment, I have to take mine to an electronics store for stimulation. Some days I'm just desperate for anything that will work to entertain him. He still doesn't have good head control or balance so I can't put him in a grocery cart, so I'm forced to hold him the majority of the time which is so hard considering arching is his favorite sport.
I'm dreading the winter because honestly I don't know how I'll keep Noah happy without the outdoors. Chris says I should just open a door and let him watch it snow but I think he'll only find that fascinating for probably about 2 minutes. I keep thinking if he could only learn to sit, or crawl that he'd be far more entertained that I'm able to keep him. But it could be several more months before Noah makes any attempt to sit. I'm praying so very hard with therapy that they'll be able to show him how to do it.
The waiting room at Children's is such an experience, there are so many moms there with little ones, many that are obviously facing bigger challenges currently than Noah is. They appear so brave to me, carrying medical equipment, handling wheelchairs and balancing enough hands to hold two other children. Yet they're finding a way to be super human. That's some amazing skill, it really is. I have trouble balancing Noah's arching body and a diaper bag and locating my keys all at the same time and I thought that was hard. There's just not enough praise for all those moms. They are true heroes in every sense of the word.
We had Noah's physical therapy evaluation today and they think that it would be beneficial to have physical therapy twice a week for the next eight weeks and then re-evaluate how he's doing and see if we should convert to once a week at that time. They have some neat gadgets for him there, a belly band much like that of a smaller post pregnancy band to help him strengthen his belly muscles so he'll be able to eventually sit. So far we're going to wear the band just in therapy but the therapist may recommend we purchase one in which time he'd wear it throughout the day on a schedule. Again something Medicaid will not pay for. I have a feeling we're facing a lot of things Medicaid won't pay for.
There was a little girl who came up to Noah today in the waiting room of Children's. We had to wait today since we didn't know who was doing Noah's evaluation this time. She came up to Noah while I was looking the other direction and held both his feet. At first I was a little taken back by it. Not quite sure where this little girl came from and caught off guard that she was handling Noah. But she was gentle and introduced herself to Noah only, not me. She told him her name was Shelby. She took her hands off of Noah's feet long enough to take her pink baseball cap off which revealed her balding head and a very long scar. Then resumed to wanting to hold and caress Noah's feet. Her mother turned to me and said she has a brain tumor, and her motor skills are affected. You could tell she had trouble speaking and had some braces on her legs. Her mother said she used to arch and be closed fisted too, but since February therapy has made her a completely new child. Noah appeared to love her. He stared at her intently the whole time she was talking just to him. It was like I wasn't even there. I don't know what that experience was all about, but clearly the two of them connected for a brief moment in time. And I will never know what drew her to hold his feet. It instantly brought back memories of Bill holding Noah's feet at the hospital.
Tomorrow Dairy Queen is having their Miracle Blizzard day, and for all those that buy blizzards they will donate all of the proceeds to Children's Hospital to give another child like Noah a chance at a Miracle. Please try to stop by and eat some ice cream for a good cause. Giving helps so many families just like us.
Love, Stacy, Chris & Noah
