Wednesday, September 25, 2013

Logan's MRI Results

Well I know a lot of people have been wondering what is going on with Logan. I figured I would do a quick (or maybe not so quick) blog post explaining what he has been dealing with an what the MRI told us. 
Pretty much from the time Logan was about 3 months I was slightly unnerved about his muscle tone. He couldn't/wouldn't bare weight on his legs and I knew from when Addie was little that he should be baring weight.  As time went on I started to notice that he would do really weird things with his muscles when you pick him up and would kind of distend backwards and arch his back and it was kind of hard to pick him up.  He sat late and started rolling really late. At six months old we were referred to the Early Intervention program through the school district and he has been receiving physical therapy in our home each month to help.  Up until about his 15 month well check, nobody was super alarmed because with babies, time frames for reaching milestones are so relative and vary so much that even walking up to 18 months is considered normal. I, however, was very concerned when at 15 months he was totally immobile and still wasn't pulling up to stand or choosing to bare weight (unless I forced him to do it). Luckily his pediatrician was finally alarmed and referred me to a specialist. We had blood work done and everything came back normal and they diagnosed him with having Benign Hypotonia, which is just a fancy way of saying he has low muscle tone and he will hopefully get stronger over time and catch up. I wasn't satisfied. So I find a neuro-developmentalist pediatrician and got him in there. She said that an MRI was a must, to at least be able to rule things out and possibly find a reason for his delay in gross motor skills. She scheduled an MRI up at Primary Children's and we went in on Monday.  Logan did amazingly well and everything went really smoothly. I did have a minor break down during the time that I had to hold him while they administered the medicine to him that would sedate him, and he literally went lifeless right in my arms...that was hard, really hard. But he came out of it just fine and we went home with no complications and he was back to his normal, happy self within a few hours.
 Happily playing before the MRI, despite being on an empty stomach for 6 hours.
 Post MRI. Trying to wake him up from the deepest sleep of his life.

Fast forward to the next day when they called with the results. I think deep down I knew they were going to say that everything came back normal, so I was pretty shocked when they said they did find an abnormality with his brain. I spent the next half hour talking to the doctor and trying to wrap my head around what she was telling me, because I am not exactly literate with the brain. Before anybody gets all panicked, what they did find was pretty low on the totem pole for problems they could have found and for that we are very, very grateful. He has what is called delayed myelination, or he doesn't have as much myelin in his brain as he should. If your like me, you have never heard of myelin before, so it is kind of hard to explain it to people, but I found this description online that I think explains it well. "To put it simply myelin is the insulation which surrounds the nerve fibers in the brain which enables the messages to travel from one part of the brain to another smoothly and easily and if it isn't thick enough the messages don't get to their destination as easily and sometimes the messages may get lost along the way. We continue to grow myelin up to the age of 35 and then when we reach our fifties it starts to diminish again (demyelination)." So the good thing is, that he can still continue to grow more myelin and hopefully in time he will be catch up. If you were to look at his brain right now, you would see myelin equivalent to about a 10 month old, which explains why that is about the level he is functioning at with his gross motor skills. He will have to go back for another MRI in 8 months to confirm that he is growing more myelin and not just maintaining or losing myelin...that is when things can be really scary. So while it wasn't the news we were hoping for, we are grateful to have a better understanding of why Logan is struggling with this. For the record, he only seems to be delayed in his gross-motor skills and his language. Cognitively he is right where he should be, just trapped in a body that limits what he can do. So for now it is just a waiting game and all we can do is pray that he will catch up and put our trust in our Heavenly Father that he has a plan for our sweet, sweet boy and focus on enjoying him just the way he is, he's perfect. I truly think that in time Logan will be able to do all the things that a kid his age should be doing. It may not be easy hauling him around and having him still be so dependent on me for everything, but I will do anything for my sweet little boy and we are so blessed to have him in our family. Thanks to everyone for your prayers and well wishes. It means so much to us.  

4 comments:

MandiN said...

I'm glad to hear you got answers and that you were a advocate for little Logan and you can move forward. Love you guys and that sweet boy!

Kelsey said...

Oh Logan!! He's just the cutest guy! I'm so glad that you guys figured out what's going on. It'll help a ton to have some answers and be justified in your worrying! I'm sure things will turn out great and he'll be fine!

We miss you guys, lets get together soon!

little red hen said...

So glad to hear an update. Glad you now know exactly what is going on! I did a quick search and found that Vit D strengthens myelin growth...something to look into perhaps? Hope to talk soon. Love you
bren

little red hen said...

This is the url, if interested: http://whonunuwho.hubpages.com/hub/Foods-and-Minerals-That-Promote-Growth-of-Neurons-in-MS

Might be helpful.