MRI Results

The MRI results are back. Logan continues to have mild atrophy of the brain. That means his brain continues to shrink. We have been told he has this on previous MRI's. This time they noted that the atrophy has mildly progressed from where it was two years ago. Basically it gives us a reason for Logan to be less interactive, have less movements, and more seizures. 

I am not suprised by these results. I have to let out a little sigh of relief that we didn't hear some major news. This is more like what is expected of Logan's course but I always worry about worse case scenario. Thankfully we were given news that is easier to swallow. 

So we continue on as is. The changes in his seizure medication dose has not made a difference. We are to call next week with an update to his neurologist and may have to change medications at that point. I just want the seizures to be better controlled. It has got to be miserable for Logan. 

I have also tried to connect with the metabolic specialist that saw Logan many many months ago. He was sending off a letter to the NIH to see if they had any ideas about Logan. I called again today looking for an update. Hoping to hear back tomorrow. I am having difficulty getting this doctor to keep me updated. 

...I wrote this blog a couple days ago and hadn't had a chance to send it. Now I feel like saying, "what the hell?" Seriously, I read the post and feel like I am totally sugar coating something that is a big deal. It is a big deal that Logan's brain continues to shrink. That's not normal! I'm trying to play it down so it doesn't bother me so much. It does bother me but this time it doesn't feel as devastating, more frustrating than anything.

I am frustrated because we still do not have a defined diagnosis for Logan. Nothing to say, here is the name and this is what to expect in the future. Instead we are presented a black hole that we are sent down with no end in site. 

I did talk to the metabolic doctor today. He has not heard back from the National Institues of Health. He will try one more time but does not feel optimistic. This time he is going to send all of Logan's records with. During this conversation I finally heard that we may have a diagnosis but can't land on it definitively because there are so few cases. Logan and I (if I remember correctly) have a genetic mutuation that has been found in only a few cases. Because it is so few, the doctor's can't say this is what is causing his symptoms. Those that have this mutation have some similariities to Logan but not as severe and there are some big differences in the cases. 

Well at least the doctor is being open about this and not dancing around it. I finally feel like I am being given some sort of an answer. I have to admit though that it is hard to trust. Logan has been seen by so many people, all with different ideas. My hope would be that the NIH might find his case interesting enough to take a peek at. Maybe there is a doctor in the US that is studying this. I wish I had a magic wand to find out. Ugh!

Other than that, we are in a deep freeze here in Minnesota. Hello WINTER! Logan has been cooped up all week as it is too cold to go out. Poor guy. You should see his hair. It needs a cut desperately. He looks like he fell out of an airplane (as Joel's family would say)! Hopefully warmer weather comes our way and he can get back to school and maybe head to great clips for some boy-scaping!