avoided held off on this post for a while now. It's not because I can't talk about Tuck's challenges, although I admit I don't always want to, but it's more there is sooo much to say and I'm not sure I can properly articulate it here. I'm going to give it a whirl though. I am going to break it up into parts. Talking about his challenges first, then my fears/challenges/love/ect next week. Most of you only know tiny bits about his history, so this seems like a good place to start...
Tuck has special needs. It's tricky when I tell people that, because the question that always follows, naturally, is "what does he have?". I never know where to start because so far Tuck is still mostly undiagnosed, although he is "diagnosed" special needs, if you can be such a thing. I usually tell people he was just born really early and is developmentally delayed. It's a quick way to change the subject (okay, I guess you can say I don't love talking about it:) Keep in mind this is usually to complete strangers though. I am more than happy, relieved even, when I can talk about /unload to a real friend about it.
Here are the things we do know that Tuck has: Hypotonia, essentially low muscle tone that makes it hard for him to reach those typical milestones like Finn (physically or mentally). It's why he has all the baby fat he still does. It's why he is in therapy, and didn't walk until he was two (although everyone who I tell this to has a story of how their aunt's cousin's neighbors kid didn't walk until he was two and now he's an olympic athlete). It's why, if you see him, he looses his balance easily, falls over often, and is freakily flexible. It's why if you hold him he doesn't support himself, and flops into your arms (makes for a really good cuddler). Tuck will most likely always be in and out of therapy to keep his muscles and brain stimulated. He is also very developmentally delayed with his fine motor and speech skills. Tuck isn't talking yet. We also worked all year with him in therapy on being able to stack a few blocks and/or drop a token in a jar. He just recently (as of a couple weeks ago) started stacking and lining items up in a row!! It is so exciting to see. Not only for his development, but also because this is the first time Tuck has played with something with purpose, the way the toy was intended to be used. Usually toys just get tossed around the house, or go in his mouth. I'm so happy about it! We will be tackling his speech head on this fall with new therapists in Indiana.
Hypotonia is also, technically, not a diagnosis. I know that's confusing. It still confuses me. It's actually a symptom, a sign, of something else bigger going on, but it can be very hard to diagnose. That's what we're still trying to figure out. About a year ago we met with a genetics specialist who ran a boat load of tests on Tuck, thinking maybe he had pin pointed it, and although what he thought it might be sounded like a terrifying syndrome, I was a tad relieved to at least just know. It ended up not being that, or any of the other 100 syndrome's he tested for. He warned us that it could be 1 of 1000's of syndrome's and we might never find out. I gave it a good go, and for a few months took the twins to so many doctor appointments it felt like we did nothing else. Then I was done. Completely burned out. The unknown, in this case, is miserable. At least for me. I feel really unprepared, like I don't fully know him, and what his needs are. I wish I could know more about what to expect in the future for him. It's SO hard to not know what to expect from his future. Will he go to a normal school? Will he be able to play any sports? Will he need a wheel chair at some point? Will he be mentally capable to keep up in the world without us? Will he be able to attend college? It's really a day at a time with him.
He also has Asthma, and Tracheomalacia, making it harder for him to breathe. If you are around Tuck you will always hear a slight wheeze when he breathes. His immune system is weak, so he is frequently sick, and gets awful cough attacks. Because of his asthma and trachea thing, what would be a regular cold for Finn or Tate, means breathing treatments, and daily steroids for Tuck. This last winter he was only hospitalized twice, which was great! The previous winter, before he was on the daily steroids, he was hospitalized 6 times. It was the longest, hardest winter of my life, and his too I'm sure:(
Tuck also had brain bleeds during birth, which we won't ever really know how exactly that affected him, only that it did affect him. He also has new symptoms that we're noticing as he gets older, and as odd as it sounds I'm happy to know more about him, and have more to tell the doctor at his next appointment. Maybe this new information will help to diagnose him. The saying "No News is Good News" does not apply here:)
It's a funny thing not having a diagnosis. I have noticed, and myself included at the beginning, people want to believe no diagnosis means he isn't special needs...yet. I had a couple lumps in my throat the first couple times I said that out loud. I mean is he? Well, if he is, then what does he have? Then we got a letter from the state of Michigan health saying that we qualified for free such and such health care for our "special needs" son because of all the extra "special care" he required, and then we got a free home therapist, and then it was real.
Part Two: My fears, thoughts, one is not like the other... next week!
*I'd love to hear your thoughts, especially if you can relate in any way.