Sunday, June 1, 2008

Finally Warmer Weather!

Yesterday we had some warm weather, and we were outside putting up the pool. Daniel wanted to participate also, so he got to make sure the hose worked properly!!!

It was so cool to see Daniel being able to get through the sprinkler by himself. Last year, I made Victoria run through the sprinkler with Daniel and he loved it. (I'll have to dig up the funny picture from last year and post it, we'll get a laugh from it again!) This year, put him in his gait trainer and let him go!! WARNING: THIS PROBABLY ISN'T THE GREATEST FOR THE GAIT TRAINER!!!

But this is Daniel's freedom and I want him to be able to experience these things on his own. He was doing his high pitched excited squealing! Which is really really LOUD! Can't wait til he is able to get in the pool, the neighbors will be wondering what all the noise is about!!

I just love the above picture, he looks so grown up doesn't he? So serious.

Here is my pathetic excuse of making a tent! Remember, I have add 4 girls and Daniel is my first boy......I'm still getting use to doing the boy things....playing with cars & trucks, looking for bugs, making tents, playing in dirt! LOL and you can tell the tent skills are WAY off, and to boot I used a PINK, girly girl sheet!

OOOOH YEAH!! I almost forgot, lets get to the really good stuff. Daniel went to the neurologists last week for his routine check up and his doctor said that we have pretty much done everything he can for Daniel. (I know this probably doesn't read right, but its a good thing!) What he said was that Daniel is doing so well, and he is doing all his therapies and basically has his equipment and is all set. The only thing we need to do is schedule an VEP and an ERG. Then once those are done and his EEG is good that we will start weening Daniel OFF his anti-seizure medication. Everyone do the happy dance with me??!~ I do this with a little hesitation because I'm always afraid to screw with something when things are going good!! But to have him off medicine......that he has been taking for years, is an awesome thought. No side effects, no making it harder for him to pay attention, just a clear clean drug free life!!!

Then in his speech/augmentative therapy, his therapist is training in VitalStim. This is hopefully to improve the muscles in Daniels throat (throat, tongue, cheeks,mouth) and will help with his swallowing. It will also help with speech in the long run. So BONUS!! I had her attack the electrodes to me first before she even touched with Daniel. If its going to hurt him or scare him, I wasn't sure we were going to start it right now. But actually its just a little weird, it starts off really low and it basically feels like a tingle on the skin, then as it is ramping up you kind of feel like there are little ants running on your throat and then all of a sudden you get this sensation and you have to swallow. Hence...swallow therapy. We did this on Daniel and you could see in his eyes when he could start to feel it, but could tell he wasn't uncomfortable. As soon as Daniel put the spoon up to his mouth and put the food into his mouth, she started Daniel's "tickle machine" and you could SEE him swallow, you could hear him "swallow" and after checking his mouth.....everything was gone. Everything was swallowed in ONE swallow. AMAZING!!

Now for the crappy news: We have been trying for the past 9 months to get approval for Daniel to get the Mygo. Well they won't order the Mygo for Daniel until we get prior approval. Our secondary insurance keeps coming back every couple of months saying, well we need this or that and then our Rep sends it in and then you're back in line at the end of the line. You lost your place, and you're at the end of the line. Well this time they came back with what I will have to classify as the stupidest, I mean the utmost stupidest remark that we now have to come back with an answer and wait at the back of the frickin' line again.

Here is the comment: The Mygo feeding system specs that was sent in states that this system is for children ages 4-12, said recipient is only 30 months or so. Please provide information as to why the child would need this. Information must come from doctor that wrote medical need of necessity.

OK, if I were in front of them, I would have a few choice words. It would have started with: are you really that dumb? How about the fact that if you go to the next line, you'll see that the height requirements for this seat are what? there you go......Daniel is tall for his age. He was frickin' FITTED for the seat 9 months ago and we got this seat because the seat that is the next size down does not fit him for his height anymore. And when we started this process he was only an inch away from the Mygo and we knew that by the time you butt munches got around to approving it he would have grown?! Which he did! Hell by the time you get to approving this he will be FOUR frickin' years old!! (he is only 2 1/2 yrs old right now!)

OUTRAGE........I could not believe it. His doctor was equally upset about it and said that he was writing a letter and going to say something along the lines of..."Gee I hope that this child doesn't aspirate (choke) or anything of that nature and that the parents then don't turn around and sue you because of your lack of intelligence in this matter. Daniel has failed a modified swallow and urgently needs this piece of equipment. Currently he sits on his mothers lap to eat because he does not have adequate support which would have been provided had he gotten timely approval for equipment request over 9 months ago!

He was also going to ask that Daniel NOT be put at the end of the line and that immediate review be given. So we shall see where that gets us!


Justinich Family said...

I hate dealing with all that red tape of getting approval for stuff. We just had an OT deny Evan for an adaptive bicycle saying that it is not an appropriate piece of equipment for him at this time. What!! Love the pics of Daniel in the water and gait trainer, Evan loves the water too. We are doing serial casting right now so he is dry land bound but we will be swimming as soon as his cast is off.

Anonymous said...

we use to make tents all the time. we were the tent masters. they would span the whole living room from the windows to the hallway. you just need a little tent help. xoxoxo

C said...


Mebbe the mamas need to pack our stuff up and march on some office, you know, all at once, and we'll all make speeches together.

I repeat -- GO MELANIE!!!!!

And the awesome doc.