Tuesday, September 15, 2009

Noah's Biscuit

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Noah tried to eat a gerber teething biscuit today in occupational therapy. His therapist wanted to see how he did with fast dissolving solids. She wasn't sure if he was a little distressed or not. Sometimes Noah has a tendency to get a little overly excited when he's eating, so I wasn't really sure if he didn't know what to do because he was so happy he got a cookie, or if he was having trouble dealing with more saliva and mushy cookie in his mouth. So it sounds like something we'll just be practicing at his therapy for a while. Food could be a hard transition and then again it might not be, we're in that stage where we're not sure yet, it's up to Noah, and I have faith that he's going to figure it out.

We also can't move into stage 3 baby food, ever. His therapist said Noah needs to know the difference between liquid food and regular texture food and to give him something that is half liquid and half chunks would make his life extremely difficult. She did say we could start to introduce things that I could mash like mash potatoes, avocado, banana and that I could even let him have a few sucks on a popsicle if it helped soothe his soon-to-be teething mouth. It's going to be a very new experience for Noah. His occupational therapist said to make sure his chin is tucked so that if he does have problems swallowing that we can handle it quickly without letting him choke or in any way cause him distress. She recommended we order that special chair for Noah that I mentioned a while back that is roughly $600. She is going to try to get Medicaid to pay at least a portion of it by saying we need it for feeding, which we do.

Unfortunately the swing, and other items Noah will be needing Medicaid will not help us with. I'm supposed to get a catalog soon of the things we need to get for Noah. I of course immediately phone Noah's daddy to say what's the plan to get all this? There are items around the house we're going to try to sell. I have a washer and dryer that I can sell, the XBOX gaming system can go... I'm sure there's other stuff in the basement that needs a new home that I could say good-bye to without getting a tremendous broken heart over. As they saying goes; Where there is a will there is a way.

Today I looked at Noah and just felt like he's going to beat every odd out there. He's trying remarkably hard. He's so driven. I admire his perseverance. He has more fight in him than I've ever had my entire life. Noah's occupational therapist I think was a little concerned how I felt about the term cerebral palsy. I know that Noah could be labeled as such, it's not crushing to me, none of it is crushing. You could label Noah anything and I'd still love him just the same, worry about him just the same, and know that he's going to be okay just the same. The road is going to be longer for Noah than others, but he's going to come away with something special because of it. He'll know from the start what it's like to work harder and feel sweet rewards. Noah won't ever be someone that takes anything for granted, like many of us do. He will be different, but in the most beautiful of ways.

I've been exceptionally tired lately, although Noah is making better attempts to sleep a little better than he used to. I think I'm mentally exhausted. I'm always thinking non-stop. Trying to think about how to improve our situation, how to get the things Noah needs, concentrating hard on Noah's therapies. My brain never shuts off. It even thinks when I'm sleeping. My dreams are often filled with strange solutions, or even beautiful things in the future. Last night I dreamt I was playing basketball with Noah who was about seven or eight. I let him hang a basketball hoop above the garage and I remember thinking how much I hated playing basketball, but how very much I loved playing it with him. In my dream Noah didn't have any disabilities. Every dream I have of him he's just like any other child. But like many other moms that I know that have children like Noah, we all dream like this. We all hate waking up from the promise that our dreams give us.

I've asked other moms how they fund therapies and things and they all say it's done through fundraisers and companies willing to sponsor. I however have no idea where one would start. Part of it is I'm not good at asking for help of any kind. It's never been my style. My genetic make-up has driven me to always find a way to provide for my needs, my families needs. Just the very thought of it is awkward for me. I'm not sure I could even get the words out to even approach a company to help Noah. What does one even say? Want a tax deduction? Contact 1-800-Love-Noah....? I have to be one of the most uneducated moms when it comes to this stuff. I understand God not giving me a rule book to life, that's fine. But when he plops me with his special miracle that needs things, he should have at least given me a mini pamphlet on tips. There are mornings that I wake up feeling like the least educated person on the planet. I haven't got a clue.

Our There with Care program is ending by October 10th. They have been such a blessing in our lives. They've helped us for so many months. We have gotten past our medical crisis, and that is when they are designed to step in. I will miss their services, but remain forever thankful that they had been there for us.

Stacy, Chris & Noah