Saturday, June 18, 2011

Too Much Information

So today is a two part Blog. I will start with my update of Jasz. Last Thursday he got a full Eval with the Physical therapist, named Kate. I mentioned to Kate my concerns, which currently are not a lot. He is not jumping, which is a 6 month delay...except he walked late so that should maybe be delayed too. She agreed it wasn't alarming that he isn't jumping as he's only been walking since October. On one hand we really shouldn't expect him to jump until October....however half of the involvement with jumping is cognitively processing it. I think it takes longer to get the concept of how to jump. But he is cognitively there. He gets what has to happen...his legs just won't cooperate.

My other concern is how he stands. He stands and walks in first position (Ballet stance) and he rolls his ankles inward, I think as a way to stabilize himself. It is a very uncomfortable way to stand but he makes it work for him. I asked Kate about it because my concern is future mobility issues. I do not want him hurting joints and tendons to the point he has arthritis at thirty.

So, Kate we LOVE!!! she listened to my concerns and really took the time to evaluate. She noticed his whole leg is rolled. Which, comes from being "knocked-kneed." So his leg bone has a bow in it...which is not uncommon at his age, but his is a little more extreme then expected. In checking Jasz out Kate found a catch in Jasz' calf muscle. Which means it does not respond as expected. So she mentioned that to her it means there is something muscularly and nerve wise going on in that part of his leg on both sides...which makes sense given his reflexes are diminished.

Fast forward to this week. On Wednesday I took Jasz to see Dr. Carter. I explained to her what Kate had seen. She observed the same catch as well as retesting his reflexes. She got a large response in the left side (his stronger side) once out of twelve attempts. The other 11 almost no response at all. She got one lessor response out of the right side in as many tries. Same with his arms.

So she tells me he has Peripheral Neuropathy. She told me to feel his calves versus his thighs and sure enough his thighs are way more muscular. She also basically indicated that his leg is more extremely bowed because the muscles aren't pulling it straight. Her big concern is him standing in Ballet stance, because of what I was worried about. She's afraid he will stretch those tendons out permanently. So, we are to put him in High top shoes that hug the ankle...ALL the bare feet anymore. She also doubled his Carnatene.

I came back and this diagnosis got shoved to the back of my brain. Trina and I talked about it and decided that if he's got a nerve issue, we basically retrained his brain to use other signals to get his legs to work (explaining his awkward stance). she theorizes that we need to do something similar for his jumping. He doesn't know the feeling so his body can't make it happen. She suggested getting a small trampoline and letting him have at it (with our guidance). This will show him what jumping feels like and perhaps retrain his body.

So this "diagnosis" sat in the back of my mind the rest of the week. I didn't google it I didn't worry. Last night for some strange reason after a very lovely date I chose to google it. oops!! It seems this is a symptom of something else. It's number 1 cause...Diabetes....well I had him tested but when I think back I don't know if Dr. Carter paid attention to the results as she was more concerned with the genetic testing. So I guess I will be calling next week. The other causes are Trauma...I can't think of anything traumatic that happened in Jasz' early life...except perhaps birth. Other causes are some genetic issue which is most common in children his age...but's he's been tested for all the genetic issues and the only thing that came up was that deletion which they don't know what it means. Thyroid function is another one..which they test for at birth. It also said that many times in children the cause is never found.

That wasn't what kept me up last night (except for wondering about the diabetes testing) it was the other things I found about his issue. Things like, "DO NOT LET children with nerve damage sit cross legged, they already have damage and putting undo pressure on nerve bundles can cause paralysis" or Be sure there are no small items around as they have diminished sensation and may not feel when they step on something or wound it. Always check the bath water because they may not be able to feel if it's too hot. Now one of the symptoms is extreme sensitivity to light touches...well Jasz certainly has even think about touching his back and he's giggling..and often low muscle tone and sensory issues go hand in hand with Peripheral Neuropathy. The thing that scared me the most is that it can affect the organs. We've already seen it affecting his digestive can also affect his heart. If the nerve to his heart becomes damaged...he could just die one day....scary stuff!! Now I have been accused of needing to find something to worry about and part of me wonders if this is why I chose to wait to look it up...I was trying to not get into panic mode as I so easily go there.

Another thing that gave me a flash of remembrance is that it also said this "disease" is often accompanied with pain down the affected limb. We went to the Beach yesterday and Jasz walked to our destination spot with little problem. On the way out however, he did not get very far before he started screaming, "ow ow ow!!!" I wasn't sure if it was his feet or his legs that were hurting. What I read last night made me think it was the later. Well, he's a happy boy and the average person would never know he's lost nerve control in areas of his body...I guess I'll focus on that!!

Part II

This week I also began a cake decorating class at Joannes. So much fun. the first day we practiced stars on cookies, which was fun but not really new for me. I was introduced to an magic item called "Bake-even Cake strips." These insulate the cake pan and prevent the outside of the cake from cooking faster than the inside. It keeps the cake from doming and cracking. We had to bake a cake for our second class, which I did using these strips. I have NEVER baked a flatter cake in my life...I am so happy.

I iced the cake and got no crumbs in the icing.

I also learned a technique with piping gel to transfer a template to your cake to give you the outline of a shape to Frosting onto your cake. The pictures are of my progress on the cake. Super fun and now I feel more confident in my cake making abilities!!

So what is my lesson this week? Sometimes too much information is overwhelming, but sticking your head in the sand isn't a good way of dealing with life...somehow there needs to be a good middle ground.

Also, cake (even when you can't eat it) makes everything better!!

1 comment:

  1. much to think about (and yet more information to get from doctors!). I am praying for you and sweet little Jasz, Rebecca! You are such a wonderful advocate for him, and looking up these things only makes you a more informed one. Try not to focus too much on the "what ifs", but keep them in mind for questions to the professionals later. I'm glad to see you got out and did something just for you!! Your cake looks fantastic! {{{Hugs!}}}