MRI results

Sorry we've been MIA. We were enjoying a great beach vacation last week - I'm currently weeding through the millions of pictures we took and working on that post but wanted to let everyone know about Cohen's MRI results.

We had talked with our pediatrician before we left for the beach and had received an overall good report but with a few things noted that we really felt we needed to talk with the neurologist about to get a full understanding. So I called to get an appointment and they were able to see me today( super fast for a specialist so we were super thankful!)

Like I said, overall, things looked GREAT. Some of the things that we were looking at... all the cervical spine structure, shape, size, etc. , forum magnum size, circulation and "communication" with his lower body( since he doesn't like to bare weight), stenosis issues..... all of that looked perfect!! (most of those things are just "risk" categories for lots of people with dwarfism - not neccisarily with Cohen's type but since his is so rare - we and doctors felt it important to have a baseline and to check).

The three areas of note were:(Warning: I am so not a medical professional so sorry for "laymen" interpretation)

1. enlarged ventricles - which we already knew from the CT scan but the MRI confirmed that they were still with in a very safe and normal range, and that their was no cause for alarm or concern at all. ( this is common in dwarfism and can become a problem or be indicative a problem if their is a lot of fluid build up or pressure ( hydrocephalus)

2. some flattening of the pituitary gland... we don't have a ton of information as to what this might mean but again, something apparently( we didn't know this) common as well with dwarfism, and just good to know if we notice any sudden weight or growth changes( low or high) - obviously a little hard to monitor when he already has a growth issue... this is just something we'll want to talk with our pediatrician and geneticist about a little further.. but again.. no alarm or major concern.

3. There was some brain atrophy noted. This was by far the hardest one for Chris and I to understand and come to terms with. This sounded really bad to us but after a thorough explanation we again feel like there is no major cause for alarm or concern. Basically, Cohen's brain is a little smaller all around than it "should" be for him. They do not feel like it's due to something happening( injury, seizures, etc.) or that it's deteriorating... just that's how is brain is. The term atrophy was what was hard for us to swallow because you think of it, or we did, as "the dying off" of something but they are using it just to describe interior space in his brain, not deterioration of his brain. ( the "space" and the enlarged ventricles sort of go hand in hand a bit) This is also apparently common in dwarfism and does not necessarily really mean anything as far as function or development. Now, for us, this was a little hard to swallow because of all of Cohen's delays. We of course immediately wonder if this is the "cause" of his delays and if it means he will always be behind(versus him just being behind due to breathing and physical delays)... however, all of the white and gray matter of his brain looks great and the amount is as it should be for a child his age so they don't currently have any concern of "damage" or "issues." Basically, while not good news per se, not necessarily bad news at all either. We will most likely repeat the MRI in the future( not super excited about that) just to be sure that the atrophy isn't an "active" thing. We'll meet with the neurologist in October to reconvene. In the meantime, it doesn't really change where we are as far as Cohen's develop.... just continuing to hang out in the "wait and see" mode which we are slowly adjusting to... realizing that this will most likely always be the case with him.
I'm not sure I explained that well at all - if anyone as questions feel free to ask. Please pray that the doctors are correct with their lack of concern and that this issue won't cause an issue for Cohen in the future or with his development.

So in a nutshell, all of the things we were checking for checked out great. Such a big praise.

A few other medical things, while I'm at it....

1. Cohen will have a sleep study done in September to check for sleep apnea. This, again, is mainly precautionary as this can be extremely common with dwarfism and to get a baseline.

2. As far as his possible seizure activity, we are still seeing it some but much less frequently. If it increases again we will call and they will do a prolonged EEG. As this point, he doesn't do it everyday, so we don't feel like it would most likely catch it if we did it now. While this is another area that we don't love the "wait and see" thing, we DO NOT want him on seizure meds if he doesn't need them. We won't treat him unless we can solidify that they are seizures. The only thing that would change that is if we begin to see regression or if it become a more obvious case. Our prayer is that it will all just go away on it's own and won't require further
"investigation"

We are beyond thankful for how we continue to get great reports where bad reports could be expected!! God continues to carry us through this journey with Cohen in unbelievable ways.

Ok - I think that's it!! Stay tuned for two little boys who LOVED the beach! I'd promise them tonight but in all honesty I doubt that's going to happen!!! I might have to do them in installments anyway!!