Update about Connor

We went to the pediatric nuero yesterday. I wasnt sure how to feel about this guy at first but soon learned he was very good at what he does. He is a much older Dr than I’d imagined but very good with kids.

As Connor and I waited, he found a shiny penny on the floor…all shiny pennies come from Heaven, from his Nana. He later told me that it must have been for good luck. I wish you could all see his eyes light up when he finds these pennies. I dont know where that penny came from, but, I can tell you-his Nana was there with us.

The Dr did a very thorough exam, first asking alot of questions, and then the physical exam.

Connor [B]HAS[/B] reflexes !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! 😀

There was no indication of neurological issues whatsoever.

I guess the reason Connor is difficult to find reflexes on is b/c he is majorly double jointed…which I never really noticed before. Also b/c of this, his muscles and tendons all work harder to work properly b/c they are so “loose”.
This is probably why he walks on his tip toes and his heel cords have tightened so b/c of it.

He said the reflexes in his arms are much harder to find but I saw the legs jump…I saw with my own eyes. You can imagine the tears that filled my eyes and rolled down my cheeks. The dr probably thought I was nuts. I WAS nuts all this time we’ve had to wait…the relief is incredible.

He told me to take care of me…that I have an incredible burden all on my own..so I got the sense that he knew a bit about CIDP. When he asked why the cane, I told him that I have CIDP and he wrote it down and while doing so, said the words that each letter stands for. Helped me to know he knew that..I’m so used to dr’s saying , “huh?” But, obviously, this dr is a Neuro. He asked how long I’ve had it and who is treating me. He knew my Dr and said I’m in good hands.

I know he could tell that he made my day. He was happy to say Connor is a good, strong, thriving boy.

We are going to continue with the ORTHO dr to see what we can do about his extremely tight heel cords and rest easy that he doesnt have what I do.
We still have to stretch daily and are done with PT. Cant believe it’s been 6 weeks now.

I still dont want him to have AFO’s or surgery -I’d really hate for him to have to do either…but it’ so much better than the life sentence of CIDP….or CMT.

Thank you all so much for your support and prayers for my son….and, me. I can handle CIDP ( ah, yes, we all know how well I do, right ? ha ! )…it would have absolutely crushed me if he’d have had it, too.

I feel like someone has lifted the pillow off of my face and I’m slowly starting to breathe again.

As my Mom always told me, We’ll get thru this…

thank you again.
Have a great weekend everyone,
Stacey