Tuesday, October 13, 2009

Happy Birthday... Just kidding - Actually shriners CP clinic


Shriner's clinic was today. I have not ever been through the whole CP clinic meaning we see EVERYONE and their dog. But it was nice to get some good information and see Tyler's team of docs working, whispering, comparing and the ultimately turning to me and saying OK mom... give us your thoughts.

We have had a soft diagnosis for Cerebral Palsy for a few years now. Obviously he has cerebral palsy but we have not really had anyone talk to us about it. There are a million different " kinds" ( OK not really a million but more than one) and sometimes the more you know of the kind you have the better you can control, maintain and rehabilitate. Because we were not born in Arizona we didn't have the follow up program there with a developmental pediatrician and a few other docs that seemed to diagnosis a little earlier than we got. And being that we were born in Utah we were no longer eligible for neonatal follow up.

While I don't think a earlier diagnosis would have mattered getting information NOW and finding more and more things to benefit Tyler is what we need to do. At our appointment I had 3 docs at my disposal to ask as many questions as I could think of right then.

At the Clinic we see a orthopedic doc. We saw a resident first and he came in and nicely tried to get Tyler to coperate. He was looking to see just what muscles in his calfs and hamstrings are misfiring and if there is anything we can do or need to do soon on his orthopedic problem on his feet and toes.

It seems that Ty has more of a problem in his Gastroc muscles in his legs. Once pressure is relieeved his movement is less impaired. Of course taking away that muscle is not possible we need to find ways to lessen the spasticity of it. We have been doing that with Botox and with Therapy and stretching at home.

Orthopedics are looking at just having him wear his SMO's for awhile and not the AFO part of his braces in hopes of keeping him mobile and not impairing his mobility.

As a finally suggestion orthopedics is looking at doing a gait study to see what input we can get from his muscles and movement to better improve his gait. This won't happen for a few more months as they want to see if he can "age" a little more cognitively so he will follow directions a little better along with not getting so upset when they touch him.

Our rehab doc came in with orthopedics and we talked with her a little bit. Dr. Gooch is a little cold at first but she came in and I was able to talk to her a little bit and she provided a great deal of insight into Tyler and cerebral palsy in general ( at lest HIS type)

So Ty is considered having Spastic Diplegia Cerebral palsy. It is most commonly found in babies with PVL or brain damage caused at birth ( right before birth, or from a oxygen deprivation at some point in the birthing process) Ty has PVL and we have known about it since he was in the NICU. Some neonatologist refer to it at "cystic changes" in the brain. They showed up with his brain ultrasounds after his grade 3 and 4 IVH "resolved." It is usually a precursor to Cerebral palsy. Also this type of damage, Tyler is at risk for seizures. If he can make it to age 5 without one we are looking at a relatively LARGE breathe of fresh air.

Dr. Gooch is impressed with his Botox but they are noticing that at the end of his cycle he is pretty tight. Between her and ortho they would like a few sessions of physical therapy, possible round of botox and in December we are looking at being admitted to Shriner's and Phenyl injections in his gastroc muscles. Last year they were looking at doing a phenyl block but decided to do botox instead. This time they want it in his leg muscles ( which makes me much happier) and we are hoping it works better.

They decided to invite in Dr. Samson Fang. While I know lots that love her she kinda rubbed me the wrong way. I kind of felt like I was being talked down to yet I already had all the therapies set up, the docs we see etc. So all the info that she offered was already done. Minus she did offer to give me the name of a social worker for medicaid D.

Dr. Gooch and Dr. Carol got us on the therapy list up at Shriner's, so although it is a trek to get there it does give us PT, OT and Speech. That makes me feel just a little bit better. If we do get medicaid D we can get some of that therapy a little closer to home.

We were able to get an appointment with Orthotics and our evaluations are all set up.

I am so thankful for Shriner's and for those that donate to the wonderful hospitals and care they give. Not many places are free and that the medical care is above and beyond anything we have ever experienced. What great people there.

It was a great consult. I didn't leave upset, angry or frustrated. I felt I was talked to, informed and most of all that they cared about Tyler and his care.

2 comments:

April Stutzman said...

I am so glad that overall you guys had a positive experience at shriners. My husband and I have been talking about taking Ethan there for a second opinion. I think about your little miracle evey day and I pray for you and him often. You are a great mommy and it shows! I hope that one day we can get our little miracles together for a playdate.

Tasha said...

Isn't it wonderful to not leave upset, or having mommy guilt? It happens rarely with us, but when it it does it is a huge breath of fresh air!