Wednesday, October 19, 2011

Miracles on the journey

We received exciting news on Friday! Les took Ryder to the first part of his extensive hearing test (1 of 2). They discovered that Ryder does not have a hearing loss after all (after 2 failed tests)!!!! The test on Monday where they were supposed to put him under was canceled. This was the best news in a long time. Les and I have been taking the boys to church for the past several weeks. Les made a comment that I thought was really sweet. He feels that he hasn't been getting much out of the services, but he also said since we have been going to church a lot of good things have been happening to our family and he can't discount that. I couldn't agree more (but I do get a lot from the services:)The boys have been so happy and have been talking about God a lot. That makes it all worthwhile. I believe in miracles and I know Ryder, as well as the rest of us, have a purpose here on earth. We continue to be so blessed. That is a big statement from the beginning of my blog if you have been following. It really has been quite the journey so far, but I feel we are on the right path and where God is leading us to be:)

Wednesday, October 12, 2011

Clear as mud, but something!

I heard from the doctor today about what is possibly going on with Ryder's latest MRI. I've spent the last couple hours contemplating and researching what he told me. It is hard to wrap my brain around it, but all in all, it is still clear as mud to me. We aren't any further in understanding what is going on with Ryder, but I did find some leads that I will discuss with the doctor on the 27th of this month.

So---here it goes (I might ramble, but try to follow along haha)

Ryder's last MRI (his 3rd so far) was conducted by a 3.0 MRI machine that has a very clear resolution and better magnetic field. ( His previous 2 were on a 1.5 MRI.) It is new technology that makes very small details of the brain observable, where they weren't before. As with all new technology, it is wonderful, but no one is an expert yet at understanding these new images that are being seen so that was the reason for the long waiting on my part.

This new MRI showed abnormal (or funny as the Dr. but it) images of Ryder's cerebellum (specifically in the dentate nucleus) and in his thalamus. The doctor wanted to discuss these findings with another specialist before he reported the findings because he didn't agree with them. He thought that the "funny findings" were due to the extreme clarity of the new MRI machine that most radiologists haven't interpreted yet.

The doctor said that Ryder's myleination looks appropriate. He believes that the cerebellum looks appropriate to Ryder's age despite the results from the radiologist. I'm still questioning this because the cerebellum controls motor, balance, eyes/ears...etc. Ryder has nystagmus, motor delay, is unbalanced and we recently learned about hearing loss as well.

The doctor did see the thalamus abnormality. This controls sensations. Ryder does have difficulty eating, swallowing and has some tactile sensitivities as well.

So what we know for sure: Ryder has nystagmus, axatia, he's hypotonic,hearing loss, developmentally delayed, has difficulty swallowing, an awkward gait and is too stinkin cute for words ;)

So overall, nothing new ;/

In the meantime, the doctor will share Ryder's story on the international child neuro network so more doctors can but their brains together to figure this out and what directions we should go in next.

I was anxiously (and impatiently) waiting to hear any news--I am a Mom though and that is just what we do;) I truly appreciate the doctors who are working hard to help us and figure out what is going on with our little guy. They are in uncharted territory the majority of the time and I know that has got to be rough. Ryder's neurologist goes above and beyond any doctor I have ever!!!!

GREAT NEWS though:
Ryder was approved for Az Long Term Care!!!! AND SSI disability!!!!!!! That is a huge financial burden off our shoulders:)