Jace update

I wasn't sure about posting a video with Jacen's walk/run. I taped it in the first place because of wanting proof for the doctors of what we see. In their offices, the space is restricted and Jacen's true walk doesn't show as easily.

It's a huge blessing Jace even can walk and run. So don't get me wrong, I understand that things could be much different, and are for many children and adults.

The neurologist at Shriners wanted me to have a psych test done on Jace, just like was done on Aidan, because of the whole autism and pdd-nos question. And, wanted us to wait and see if his walk improves on it's own. Those two generalizations/assumptions/prejudices really disgusted me. "It runs in families, you know." Grrrr. I felt very strongly she was wasting time going down an endless, meaningless detour. Even before the Psychologist said Aidan definitely isn't Autistic. So I called the primary physician and begged for a referral to one of the pediatric neurologists here. I took Jace yesterday.

Lincoln's description of him is, "creepy." In the doctor's defense, he's got a lot of, lets say, tics. But what stood out the most to me, and makes me grateful for him, is:

He treated Jace with respect, not like just another annoying child to herd through the office.

He handled him with care and compassion, helping him laugh instead of scream while examining him.

He listened fully to me.

He had no preconceived ideas and looked at Jace and the circumstances with open eyes and no colored glasses. "He looks outside the box," as one of Jace's therapists said of him.

And he wasn't psycho like Aidan's neurologist. *That's just me spouting off. But she really is cracked! :)

We are now moving forward again with Jace's care and eventual diagnosis. He goes in for an MRI, this time of his back, on the 26th. This is to see if Jace has a condition that involves his spinal cord that causes CP like symptoms. He is also going in for an EEG on the 29th, checking for seizures. And once we have those accomplished, he will go in for a sleep test, to check for Apnea. I like this guys approach. Though he knows my biggest concern for Jace right now is his walk and run, he is not only addressing it, but the other concerns... because he actually listened & cares!

On the therapy end of things, Jace qualifies for speech, developmental, and occupational therapies. Physical therapy, he is right on the fence, and they have to meet to decide if they will put him in or not. Because Jace is under 3, all therapies are done through the state's H&W dept, so their guidelines for who qualifies is pretty severe. This is why I'm so determined to not just "wait and see." I know the earlier the intervention, the better the prognosis is for children with these disabilities.

It has become clear that ID has the best pediatric disability programs, so I suppose that would be the blessing that comes from being somewhere I really don't want to be.