Sunday, June 5, 2011

Hold on to your breetches, it's an update!

Hola, remember me? The world’s worst blogger? I’m back, if only for a moment. Time for an update!

The update is… that nothing much has changed.  The boys have been healthy for the most part, and they’re both growing well. Dax has just taken off developmentally lately and he’s progressing in every single area I can think of. Expressive language remains his biggest hurdle right now, with him having poor word finding, poor articulation, poor oral motor coordination, poor breath coordination… You name it, it sucks. He still loves signing and he’s really good at recalling signs, but again, finding a word he wants to use spontaneously is hard for him. Receptively he knows so much, and he loves, loves, loves showing off all his knowledge. He’s a sponge and a people pleaser, and that makes therapy and school so completely fun and beneficial for him.

Dax turned three in April, thereby ending our time with early intervention and beginning our time under the school system. The change has been both good and not so good, as the IEP process has left me completely and utterly underwhelmed, but the teacher and speech therapist we see with regularity are both so very good with Dax and are flexible to his needs. As for the IEP part… I won’t go into all the details but he’s already had THREE IEP meetings since his first on March 28, and I plan on another in August or September. Dax will be homebound this year but can hopefully start attending school with his peers in the fall of 2012.

We’re also very excited that a local early interventionist and her husband, a Tae Kwon Do instructor, have teamed up and started a special needs Tae Kwon Do class. Dax has been going each week for about a month and he’s done exceptionally well with it despite his motor challenges. He loves going to class and loves practicing the moves, even if he doesn’t do them just quite right. I think it is going to be a great, great thing for him!

As for upcoming appointments, we see the pulmo next week and I don’t foresee any changes. Endocrinology is soon after, and I don’t see them doing anything either. The cardiologist will be seeing him in September and the plan is to stop his Viagra upon that echo pending no changes for the worse, and then do a follow-up cardiac cath a couple of weeks later to see if he can maintain with no pulmonary hypertension. He’s still on O2 at night since he drops his sats into the 80s without it, so that will be our only treatment for the pulmonary hypertension if he “passes” his heart exam. His ASD is still getting smaller with time, so we will continue to keep an eye on it but it is not a major issue at this time.

The question I have for any of you folks with kiddos with paralyzed vocal cords… Have the docs tried the injections with your child? The spacer? Anything else? That is the next issue I want to tackle this year or next, medically, as Dax wants to talk and wants to drink and he needs all the help he can get. Any input? Advice? Our ENT has called Dax a “hornet’s nest” and he “doesn’t like to kick hornet’s nests” when he doesn’t have to. He doesn’t have to live with said hornet’s nest or have to worry about his development like I do. So, thoughts? What’s worked? What hasn’t?

As for my sweet, sweet TyTy, he will be two in July and he is STILL. NOT. TALKING. Nothing, nada, zilch, zip. Every now and then he’ll say something that we think might be a word, but then he never, ever says it again and we start thinking we hallucinated the whole thing. Couple his vow of silence with his love of eating mulch, topsoil, dirt, rocks, and any other earthy material he can find lying around, and I’ve begun to really get worried. I took him back to the ped last week to have some bloodwork done and she wanted to do a developmental exam of sorts… And after all was said and done she thinks Ty is completely normal and healthy and extremely bright and curious and quirky, and he will grow out of this silliness over time. She also noted he is very hard-headed (and we have absolutely no idea where he gets that from.) She is sending him in for a hearing test just to be sure, but really just thinks he’s one of these kids who is just busy, and it doesn’t help that his role model is a three year old who doesn’t talk much. As for the love for all things unedible? He doesn’t have pica with any other items, and doesn’t mouth objects, he just likes to eat dirt and rocks. His levels looked good, so we’ll just keep him on vitamins and try to reinforce not eating non-edibles, and she thinks he’ll grow out of it soon. I hope so! He’s gaining weight so fast and I’m not sure if it’s fat and muscle or just rocks in his tummy.

Ty’s still getting early intervention services and he’s supposed to start speech therapy this month. Hopefully he’ll soon decide that he can talk, and hopefully when he does decide to talk it will be all nice things that I want him repeating, and not the terrible things he hears on a daily basis such as “If you don’t get your hands off of your wiener I’m going to chop it off and feed it to the dogs.” Not that I would ever say anything like that. Ever.


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