Saturday, April 16, 2011

You are not Dr. Gooch?

Like I said in our last post we are trying to get in to our specialists so that Ty can take the ESY ( extended school year) and not regress but that we are starting him off on a better foot to PROGRESS, and not just stay the same.

So after Dr. Larsen the next day we went to PCMC and went to the Rehabilitation clinic. Sometimes they are SUPER chill and sometimes they are pissed that some things haven't been done and other times they are in the mood to just give out info and lots of praise. We had the PISSED and info people there that day.

So the ticked off part: 1) Ty is in DESPERATE need for phenol. He is REALLY bad and needs to be put back in braces that we haven't been able to get fitted for him in YEARS. He is the hardest person to fit. Part of the reason is because his poor feet are deformed from the YEARS of not having them in braces so we now have to go see his orthopedic doc and start over there. Phenol, if not done at Shriner's is COSTLY. We have to pay a hefty chunk as our portion and frankly the medical "portion" tree tapped out. The other thing is they don't want us to go further in debt over his needs because they feel it isn't fair to us. Well we will suffer the problem is, he shouldn't. The well is dried up though. So we are having to go visit someone else AGAIN about medicaid disability which NEVER ends up going in our favor.

2) Tyler is in need of an adaptive stroller. Yes, we have talked about it on the blog a MILLION and one times. Problem is, we still don't have one. We are not able to participate in many more outings until we get one. He doesn't want to have to ride he has no choice. He can walk to the best of his ability but he can't do it all of the time. The same place the "portion" for his chair is coming from is the same portion that we are tapped out of but it is still coming and we will just have to enjoy the debit. At this point it is a NECESSITY. We are out of options. I am no longer allowed to carry Tyler in any way. He MUST have this stroller. So they were ticked that we have been waiting for it since OCTOBER.

3) Tyler needs to see the spastic team. We have an appointment on May 2nd and it is 4 hours long. He will be poked, prodded, moved, stretched, stared at and talked about by a lovely team of people. They will be hoping to do a baclofen trial. The trial is to see if he is a good candidate for a pump or a Rhizotomy. If he could do the Rhizotomy he would need to be inpatient for several MONTHS... Oh did I say MONTHS.. Yes MONTHS. See where the problem is. He will need to be totally rehabilitated on his body. He will not be able to use his legs until we do the intense therapy for it. Oh the stay is NOT the problem it is the STAY and a BABY. Oh and the pump idea. Well you can't always have a pump and a shunt. If you do have a shunt and your pump gets an infection, you have a shunt infection. So wow.. our options rock.

4) Ty needs a bike. While this sounds incredibly fine we can't just go to the store and buy one. While I WISH we could, we can't. But I can't begin to tell you the tears we have when we go out with the kids and they speed off on a bike and he wants to go so bad. The tears are not just his any more. He can't ride a regular bike. So we have to find a way to get a bike for him so he can participate. Not to mention the docs WANT him on a bike. They need him to get a different muscle working in order to help when we do #3. Insurance doesn't cover this bike. ( a few thousands dollars would) but again... the well is tapped.

The lots of information part just follows up with all the we are kinda mad information they gave us. We are hoping that the stroller comes in when it is "scheduled" which is in 2 weeks. ( please do not hold your breathe. You will die) We go into Shriner's for evaluation on Monday where we are HOPING we will get on the bike list for this summer. If not Ty will not have a bike. ( that part breaks my mommy heart more than I can tell you. I want so bad for him to have a bike) The braces will be covered with our deductible at Shriner's ( yes, you now have to pay because of the lack of funding) and we will get to have some therapy there.

Up until the last few weeks when restrictions were put in place on me lifting him, I had been able to easily deal with our issues. If he wouldn't/couldn't walk that far I just picked him up and we kept going. He wants to go outside with the kids but he gets left behind because he can't get across the street safely without me close behind. He then gets left because they are on their bikes and up the road before he can even cross the street. When the tears fall my heart breaks. These are all things that should never be denied a child EVER. No matter the socioeconomic life they have a bike and walking should never be denied. But they are.

I can not buy him everything that I want to. I can no longer carry my child. I have to tell him that I am sorry he is left out. Not just because of money but because he was born to soon. It wasn't his fault. Yet he suffers the consequences every single day. My job was to protect. Now my job is to fight.

I have never been this down when it comes to cerebral palsy. But I can honestly say at this point, I hate it. I want to have something normal for this sweet deserving child.

On the funny side, we have tried super hard to teach Tyler all the docs names, what they work on and if we take medicine what color the medicine is and what it does in our body. When we go to the appointment we talk about what doc it is etc.

This particular appointment was with Beverly the NP. We LOVE her. But Ty was playing and minding his business and when she asked him to come over to her so she could touch his feet he got up SUPER close to her face and he said" Um You are NOT Dr. Gooch? Have you seen Dr. Gooch anywhere?" We busted up laughing. We told him it was going to be Beverly and he said. " Oh ok.. Sorry about that." sat down and put his feet in the air.

We do love him and his sweet spirit. He is a great kid. He is a toughy.

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