A Big Week

MRI DAY

 Baby had to get his MRI done: the first since he was born. He'll get a CT scan every year, but this year they wanted to do a full MRI. The not-so-great thing about it was that they had to put him under for it, IV and all, so he wouldn't move during the procedure.

This is us in the prep room, waiting to get Jake's IV.

He was terrified and screaming, crying, and hugging me when they started his IV. It broke my heart and my hands were occupied, thus, no pictures. And to top it off the first IV blew so they had to do it again. I picked him up and started singing to him while they put the medicine in and then he fell asleep in my arms, which was really upsetting. He just went limp. It made me tear up a little just thinking of all the times we will have to undergo the same thing, or the same thing + brain surgery.

But we went out into the hall and waited (my lovely mother-in-law was with me) and it took about an hour. He woke up great and got to drink some apple juice. Next we had a neurosurgery appointment on another floor so we headed there.

The surgeon was able to access the new MRI info right away. We got to see the old MRI vs. the new MRI. Wow, was that amazing! In his old MRI his whole head was mostly fluid with a tiny bit of brain in the front. Friday's MRI showed that the brain is filling in VERY nicely! It also revealed something unexpected, a very large cyst right on the top of his brain. It's probably about the size of a cutie orange. They couldn't see it before because there was so much fluid, but now it's visible. I freaked out for a minute, until the doctor explained that many people have cysts and they don't do anything. Jake's is just very large because the hydrocephalus has filled it with fluid (since hydrocephalus means extra fluid in the brain) but he was confident that it wouldn't cause any problems and we wouldn't have to do anything about it. He said it should shrink as Jake gets older and it shouldn't interfere with brain growth or anything.

We could see the shunt catheter go right through the cyst. The doctor said that the end of the catheter is still surrounded by fluid, so that means the shunt will probably last a little while longer before becoming clogged and failing. However, he said that as his brain grows that spot will fill in.

There were a couple of really exciting things he said to us. He said he thinks Jake is a really good candidate for a surgery called a Third Ventriculostomy. It's where they would go in, put a hole in the brain tissue where the fluid could drain properly, and then he would be able to be shunt free!!! Not everybody is a candidate, and not every surgeon will attempt the surgery. But he said that the older he gets, the better the chances are that the hole will stay open and not heal. We're really aiming for 2 and older. Hopefully his current shunt will last at least another year, then we can try the new surgery! Huge blessing!

He also looked at Jake and talked to me about his skills and said, "Well he's definitely above his skill level for kids his age with hydrocephalus. Especially with the size of head he's got. You're doing a good job with him". YAY!! It helps me to hear that. It makes me feel like I'm not failing. It was a day full of good news.

Here are some pictures from today I thought I'd share.

Here is Jake in his leg braces, standing on his own! His physical therapist has his legs in this picture, but a couple minutes later she only had one hand on his back, and then another minute later, she let go! It's astounding what he's accomplishing at barely 12 months.

Next, he even took a few steps (with a lot of help) but it was the first steps he's ever felt. I don't have pictures because I was trying to distract him and needed both hands to do so.

After a long and much-needed nap, we tried finger painting. I have found a couple sensory blogs that I've been following, and one of them had this great recipe for chocolate finger paint. It was easy since the only ingredients are hot cocoa mix and a little bit of water.

Not so sure what the finger paint is for... but we'll kep trying. I mostly did it for him, but it was still good sensory play.

After that, we tried playdough. I made the salt kind. We've been trying out playdough over the last week and he hasn't been so sure about it. He doesn't really like hand and arm sensory stuff which is another reason I'm committed to doing it more.

But today he actually liked squishing the dough.

Pulling at it. Not too sure...

Have to taste it! Yuk!

And one cheesy pose because he LOVES posing for the camera.

And that was our busy but fun day of trying new things!

P.S. If you haven't checked out my added stuff on the "Jake's First Year" page, check it out. It's a work in progress,but I"m getting there.