Luke's MRI was this morning. Everything went well. His ventricles have not enlarged very much since his last MRI so that is great news. The fluid around his brain has also slightly decreased - which is great news.
When we were on our way to the hospital this morning we were resigned to accept whatever happened. I said that my first choice would be that they would say that his ventricles haven't really enlarged, we'll keep an eye on it..no worries. And they essentially did.
I also was worried that they'd find something new or different wrong. I didn't want one more thing to worry about. Dr. Limbrick (super awesome surgeon) took us to show us the MRI scans. As he was showing us, I noticed that it said that he has damage to his perisylvian area. Some types of PMG have that word in it. I've read about kids with damage to that area and thought that we didn't have it. Well, I thought wrong. His is damaged and has been all along. So there's not something 'new' wrong, just a little more damage than we knew about. It is an area that has a lot to do with language development (from what I understand) and we already knew there was a problem in that area.
When we first found out about Luke's diagnosis, I still had a small, secret hope that they'd do his MRI after he was born and come back to us apologizing profusely for messing up because they were wrong. I was on the fence about starting this blog because I was hopeful that I'd have to quickly shut it down with a 'Whoops! Sorry, the doctors were wrong...didn't mean to worry everybody!' Then I'd think that, fine, if he had to have this stupid PMG then maybe the damage wouldn't be as extensive...maybe it was only on a small portion of his brain...not almost the whole thing. But I guess it doesn't matter. It seems like no two kids with a PMG diagnosis - even if it's the same - are doing the same thing or progressing the same way. So another little piece of puzzle isn't really life altering here. I just hope it's the last piece of the puzzle and there are no more unknowns out there. Maybe these are the stages of accepting a PMG diagnosis??
So our good stuff - it's what we like to focus on!!
1. NO MORE SEIZURES!! (Dan WILL be knocking on wood when he reads this. Wouldn't hurt if you did, too, please!)
2. In the last week or so, Luke has REALLY seemed back to his old 'self'. Really back. He's pretty much always happy (except around doctors...he doesn't like anybody in scrubs!). He's eating great. He's making lots of progress!
3. We have AWESOME doctors and care from Children's. I've 'met' some people already through this blog and other support groups. I've learned that we are so, so lucky with the exemplary care Luke has received and will continue to receive.
4. You guys. As usual. You're the good stuff. Thanks for all you do to support us. We have had a relatively easy ride so far - busy, but things could be much worse. It's nice to have you all here for us for whatever life throws at us.
5. And of course...this has nothing to do with Luke...but the Cards in the World Series. Obviously, that's the good stuff! Now if only I could pretend like I was going to stay awake throughout the game tonight....Go Cards!!
I live in Chicago and am not really a baseball fan so less fluid is WAY more exciting to me than the Cardinals winning the World Series. But happy news either way for everyone! Love the new "Loving Others, too" section.
ReplyDeleteWhat awesome news Mel! So happy for you all!
ReplyDeleteI know exactly what you mean about starting the blog and hoping against all hope that all of this was not really happening. And yes, we all go through stages. They are really the stages of grief for our loss of our dreams for a "normal" life for our little ones. Denial, Anger, Bargaining, depression, and acceptance.
There is no start or stop for the stages. You can be in one for a while, then another, then back again. In the beginning I was mostly in denial, now I spend a lot of time volleying between depression and anger, some periods of bargaining, and occasional glimpses of acceptance those it's rare. Grief (I'm an old hospice/cancer nurse) is a long process and there is no time frame for when it 'should' be over. As far as I'm concerned, with Brie I will probably always be struggling with these issues at some level. I'm just hoping for a few more days of acceptance.
All that being said, I don't want to forget my ANGER at the system that makes us all fight for every little thing we need for our little ones or for the doctor's, hospitals, and careproviders who don't seem to care enough to teach us (or even THEMSELVES!) about what to expect and how to handle things, and especially the inhumane experience of being sent home with a vague diagnosis without a CLUE of what that really means and no resources to help you walk through this! No...I won't forget that!
But I too, am so very grateful for the new friends that I have found here online. I cannot even imagine what it must be like to not have the internet to connect to others like us. I am very grateful for this lifeline - and for all of us in this boat together. :)