Monday, September 28, 2009

Noah's Good Friday

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Sure enough just when we change Noah's therapy schedule he performs beautifully for his Friday therapist, Nikki. He probably felt sorry for me since I've been telling him the last few days I thought we'd really miss her. We practiced weight bearing activities for Noah He's doing better and is really trying. He also played with Kooshling balls that he thought were wonderful. I used to have those years ago, I'm not sure I even saved them, wish I had since he enjoyed them so much. I'm sure the dogs would also enjoy them just as much.

We got to meet another little boy that faces similar challenges as Noah named Jayden. Noah really liked watching and studying him. Jayden was so cute and has soft curly hair and the most angelic little face that makes you look right past anything that he might not physically be able to do. Or maybe I no longer see these precious special children for what they cannot do, but for what beautiful souls lie in each one of them. I look past the physical and see such sweetness in their eyes.

Today was Noah's occupational therapy. We only have one more therapy session that is Medicaid approved. If Medicaid does not approve more by next week then we'll have to take a break from occupational therapy until the approval goes through. I'd like to be optimistic and say it will happen by next week, but being the realist that I am I know that it more than likely will not happen that way. I expect that we'll have to stop our occupational therapy for a few weeks or even up to a month until we hear yes from Medicaid or longer if they happen to come back and say no for whatever reason. I wish the system wasn't like this. It should be easier than this, but it isn't. At least Noah will be able to continue on with his physical therapy in the meantime, although I love our weekly sessions with his occupational therapist, Julie. I feel like we're at a point where we are making progress, even if it's slow, Noah is responding to her and we're both learning a lot of wonderful skills from her. And if we take a break I'm sure our 11am time slot will get filled by someone else and I'll have to change Noah's routine again.

Next week we plan to try to introduce Noah to drinking out a cup. We're trying a product called Nuby that hopefully will allow Noah to transition from bottle drinking to drinking out of a cup or sippee cup. Noah still cannot hold a cup with both hands, or if he can he's not sharing that information with me yet. He won't hold his own biscuits, or popsicles, or anything really. He'll swat at his spoon during feeding but that's the best it gets for right now. I'm nervous about transitioning Noah to solid foods or drinking out of glasses. I don't think if Noah had been born without a hypoxic-ischemic injury that I would be as scared as I am now about moving forward. I try not to live in moments of fear, but I don't want us to go backwards and for me to go to fast and make Noah sick. Aspiration is still a concern, choking and gagging very much possibilities.

Noah's two bottom teeth are clearly visible today, and he's been somewhat agitated during bottle feedings and crying. Noah can't have tylenol like other babies, it never agreed with me so we're not sure if he's allergic too, and not all drugs are suitable for babies that have brain injuries. Hence why vaccinations are not possible for Noah. There are also many foods that we'll have to watch for Noah's consumption. Many people may not realize that artificial food colorings could have consequences for Noah that may differ from others. Red 40, Blue 1, Yellow 5 and Yellow 11, all have effects on the brain that Noah may be even more sensitive too. And you can't imagine how many foods contain those artificial dyes. That means no Kraft Macaroni and cheese, that means icings in cakes and sodas, popsicles, ice cream, chips, cereals, salad dressing, It's even sprayed on fruit to give them more appealing color and can even be found in shampoos, lotion and conditioners. These dyes are even in medicines and vaccinations Effects could range from hyperactivity, anger, rage, irritability, memory disturbances, violent behaviors and abnormal stages of excitement and abnormal cell growth in the brain. And shopping for things that don't contain those dyes is going to be more expensive because it forces you to buy almost everything organic and natural. It's already hard to hunt out special popsicles for Noah, special baby foods that I have to reach each label for, and if he learns to eat like the rest of us do, that will ultimately change how our family shops for groceries and what our diet is like. And not to put the horse before the wagon, but financially it will be one more thing we are going to have to consider with Noah.

Noah's personality keeps sprouting by the day. He's growing into one of the most intriguing human beings I've ever met. I want to capture that grin he gives me in the morning and burn it forever in my memory hoping to keep it just as fresh as it is today as it will be when he's a grown man. The tender sound of his cute giggle as I nuzzle his soft neck, the way he puckers his mouth when someone else other than me wants to love on him, or the way his ocean blue eyes light up every dark corner of my day. Noah, when you are old enough read and understand your caringbridge book , I want you to know that you are the very best thing I've ever done with my life. There's nothing more that I could ever do better, than you.

Stacy, Chris & Noah