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.

BIRTHDAY

How has it been one year already? A year ago I got the best birthday present ever. Happy Birthday Jake, you are so precious.

 Yummy Birthday Cake!



Just one of those days.....

Ugh. Today was just one of those days!! I've been trying to hold off making new posts until Jake's first year synopsis is completed, but I'm giving up because I just need to post about today.

I know most of the time things just seem to be going good and Jake seems to be making progress and all is well. But not every day is like that. I know I'm not the only mom out there who feels that way, and especially not the only hydro-mom either. Every mom has to deal with hard days no matter who you are. It's the lack of sleep/fighting with your kids/trying to keep everything in some kind of order syndrome, and it's normal, but today was just awful.

With therapy there are so many ups and downs. It seems like it's 2 steps forward, 10 steps back. Therapy is pretty much my life. I try to do it every single day and most days out of the week at least one person is coming over to do therapy with Jake. But it's becoming harder and harder to do therapy by myself! Jake is getting so big and so stubborn. Usually his Physical Therapist (PT) or Occupational Therapist (OT) are putting him into position and doing the exercise and I'm in the front of him trying to entertain him with a toy so that he'll cooperate and be interested. When I'm by myself, I don't have anyone on the other end to keep him occupied, and I'm usually by myself because Kenny's so focused on getting through school that he leaves early in the morning and comes back later at night after Jake's gone to bed so he can't really help me.

Today Jake had OT and it seemed like she had mostly negative things to say. She wasn't saying anything in a mean way, just a way that made it sound like Jake has SO FAR to go and it made me feel so discouraged because I know she's right. Here's the list...

1. Jake is not supposed to be putting so many things in his mouth all the time at this age anymore so she said he's not able to focus on things around him when he puts things in his mouth.
2. His arms and hands are very sensitive so he won't let you direct them to help him learn to do certain activities or put pressure on them.
3. His legs and feet are also sensitive so he's not putting weight through them like he should.
4. He's not interested in clapping, waving, or anything of the sort.
5. He hates learning to crawl and he doesn't want to lift up his head for it.
6. He's not interested in many toys kids his age should be interested in, or activities that they usually do. He doesn't care about shape sorters, dry beans in a bowl, etc.
7. His left hand likes to stay closed more than the right which is hindering his hand skills with toys and food.
8. He doesn't know how/ doesn't get how to pull things very well... handkerchiefs out of a can, etc. do not interest him at all.

Those are just the ones I can think of off the top of my head. It just feels like the list gets longer and longer every day. That's seriously about half of everything I have to work on with him every day! And does it always get done? I'll admit, no. So when his OT comes and she's telling me all this stuff that he's not doing or is doing that concerns her, it just makes me feel horrible because I know it's my fault for not being as on top of things as I should. Sometimes I get complacent and I feel like I can just let him lay on the ground for a minute and play, but really I shouldn't. Every second of the day should be structured. I'm considering making myself a daily schedule so that I remember to do everything.

(This is how we try to get him to learn to use his legs to crawl)

It's just so exhausting! Every day is fighting, fighting, fighting until one or both of us is resolved to tears. Today it was both of us. I just had the realization that no matter how much I do for him it will never be enough. There will always be something more I could have done or something more I can do and I just feel extremely alone in it. It's so exhausting being in charge of your baby's development anyway, let alone if they have special needs and I know I'm the only one who is with him enough to know how to help him. There are those of you out there who I think of in times like these because I know you know how I feel: Cathy Layman, Julia Baker, Shannon Daniels, and Stephanie Jones to name a few. Being your child's advocate, voice, and main therapist can get discouraging. I start feeling so guilty because I know I must not be doing enough if he is still so sensitive to weight-bearing, and all the other things.

I know what the human brain can do in children, how it can repair itself, and so it's up to me to help him make those connections and catch up! Jake IS pretty smart. He can catch onto things, but the fact that it's taking him a long time just makes me feel so down sometimes. Almost every day I think of my friends and family who can just set their child down and let them play without having to help them do simple things, who can just watch their child learn to crawl and walk without having to move their arms and legs for them or do work on a yoga ball every day to hopefully get them to move. With the movement comes cognitive development and so the two go hand in hand. It's hard to see my baby behind and not understanding things he should be understanding and just hoping that if I work with him hours every day he'll get it.

So yeah, usually when I write about therapy it will be about the good and exciting things that are happening. But today was just a day when it felt like we went a football field in the wrong direction and I'm so exhausted! Let's just hope next week is better :)