We aren't doing it

When we had our last rehab appointment we needed to go to the spastic clinic. We had never actually been to it since we did 90 percent of our stuff at Shriner's hospital, but we got the appointment and I took Tyler ( and Grayson because I was still pregnant, haha) and started a plan to get Ty a little less spastic ( or tight) in his legs and other parts.

Originally the plan presented was to cast him and brace him. We did that and it didn't do anything. In fact it made no difference and just made him upset. The people doing the testing weren't surprised because they don't think it is in his hamstrings but in his ankles. Since they didn't think it was his hamstrings a cord release surgery was not an option.

We moved on to Phenol injections which we have been giving. We got them moved up and sooner so that we could look at a baclofen pump and a trial. So we decided to go forward with the trial and we had to wait till after we had Grayson so that we had the time and the ability to do it.

We got the information on the baclofen trial and Dallas and I felt HORRIBLE about it. We don't know what the deal was but Dallas answered the questions for the check in. We still didn't feel ok about it.

So I called. I called to get some more information and to see if they were able to calm any of my concerns. They weren't. In fact, I was even more upset over it. I was also so mad at myself because one of the reasons to not do it is medical cost.

When I had Tyler I really thought that no matter what the cost we would give him the BEST care and that it wouldn't matter what it cost. But it does matter. If something goes wrong we lose our disability for Tyler. Losing our disability takes away his Medicaid. Losing medicaid means we pay out of pocket for the pump refills. The refills we get right now are on the 4 buck list at walmart so getting a refill is "no big deal." But a pump refill. THOUSANDS of dollars every few weeks. Not to mention that we have to pay for the hospital and the sedation that will be used.

When I mentioned cost, they said without medicaid they usually don't even try it because families shouldn't be bankrupt with medical costs. It would cause more burden that it is worth.

I felt horrible and better at the same time. It looks as though we will try a few things first and we will evaluate the situation in November. Maybe in a few months it will look more appealing than right now.

Ufo's...... Afo's... whatever

A few weeks ago Ty was casted for his next set of braces. We had our new evaluation for PT and had our appointment with the Spastic clinic. The PT thinks braces are a "wonderful" idea while the docs and 4 therapist say they won't work.

The docs and the therapists at PCMC don't think it will work because his ankles are what is tight. They think something helping the falling arch in his feet will work better. They also think that with a baclofen trial and more phenol and casting. The afo's will just hinder what he does have and we need more support to keep his feet from being deformed.

That said we were told that we are welcome to "try" the braces but chances of getting him to fit and to not get sores were pretty much slim to none. We expressed our concern to our braces dude and he agreed that it will probably be a hard fit and we will need a lot of adjustments. As we were fit for them the first part of the appointment we already had one problem. His ankle didn't bend to keep his feet all the way flat in the braces so he decided that we might be in bigger trouble and he would come upstairs to see us in our appointment.

Ty got Spider man braces and he was not thrilled to be put in the braces. He was crying so hard that I had to lie to him and tell him that his spider man shoes were super heroes and his shoes would make him jump higher. I HATE lying to him. ( His shoes will NOT make him jump faster or run faster. Neither will the braces. I feel telling him that will diminish his trust over time. I feel with his medical stuff that being honest if it will hurt, and what the procedure or equipment will do gives us as the parents TRUST for the future procedures.)

I had to give Mickey Mouse new shoes and that seemed to help. But overall I never know who is more traumatized.. me or him!

I knew we would have to wear them for at least 2 hours, which was fine because we went right up to therapy. We were a smidgen early so Ty went and made himself at home and had a small game of basketball. He was still wearing them and didn't complain.

Therapy is HARD with his therapist. Ty generally won't participate and he has an overall distaste it seems. I have a distaste. A big one. I do have to say that Tyler did have a pretty good day and he worked really hard but I always feel like I am always talked down to. ( don't you love his way of "keeping" Tyler safe. Yes .. use his shirt.. instead of proper positioning at the waist... but what do I know. I am JUST the mom)

After our Hour therapy we took off his braces and sure enough, just like I had said, there was a nice round red spot on his ankle bone that didn't go away in enough time to be deemed safe.

His therapist said I needed to get him "use" to them but after sending him to school in them we had many complaints from school and PT's and what not about how he ends up crawling all day and when they take off his braces he has a nice red spot on his ankle bone.

He wore the braces to school a few times. His ankle needed a rest so I am going to have to make a call to the braces guy and get some adjustments made. It is a frustrating start to all the fun stuff.

Bring on the casting, and phenol and if possible the baclofen so we can try and get him going on something new.