Category: Spina Bifida

Getting Stronger

Posted on by Lauren

I feel like every day Ezra is getting stronger and stronger. Here is a video of him playing around the end of January.
He is doing good but still a little wobbly. You can see it in the beginning, I didn’t cut the video’s down.

and here he is about 6 weeks later. He is doing so much better. He still needs to get stronger but it is nice to see him improving.

One of our next steps is to turn one of those chairs into a wheelchair so he can get around the house and outside this summer. He will be so stinkin cute!

Ezra continues to have doctor appointments to follow up with his progress. Right now these appointments are just to make sure nothing is wrong, which from what we know, nothing is wrong.

 

Right now we do lots of PT. Usually 3 times a week. Thankfully 2 of those times they come to my house. We stretch him a lot, working on rolling and just getting him stronger.

Here is Ezra doing some stretching and playing on the Ipad.

 

We had a follow up with the eye doctor and they said Ezra looks great with his glasses. He still pulls them down a lot but they say once he relaxes his eyes he will start to prefer them. He gets lots of compliments about how adorable he is. Which he is.

Since his eyes are already starting to straighten out, we don’t need to patch one eye to make the other stronger as of now. We will check back in 6 months.

Sorry for the slow blog, it’s just there really is nothing new. Just the normal everyday life of my 2 boys growing up.

 

Glasses

Posted on by Lauren

 

Ok now Ezra just became the cutest kid ever! We went to the eye doctor last week to get Ezra’s lazy eye checked out and apparently he is really farsighted. So Ezra got glasses.

Seriously I go and say glasses and babies is so adorable, and my kid needs glasses. Crazy how things work out that way.

Of course when we were trying on glasses for Ezra, Atreyu had to try a pair on too.

Trying them on with Mommy.

And Grandma helping out.

 

Now if only we could get him to keep them on…any advice?

 

 

Birthday Party and Stats

Posted on by Lauren

We had Ezra’s birthday party. I love celebrating my boys birthdays.
And I finally got a full video of Ezra rolling over.

 

The boys had their annual check-up.

Atreyu is 37 inches tall. (95%) Sarah, I guess he is tall! He weighs 27 pounds. He is becoming my little bean stock.

Ezra is doing well too. He is 27 inches tall (grew 2 inches from 9 months) and weighs 15 lbs 2 ounces.
We still want to put a little more weight on him and keep working on his fine motor skills. But he is still pretty awesome. I mean just hang out with this kid, he is so happy and has such a contagious smile.

I took some pictures of him. He was just starring at the camera, then I told him to smile and he wouldn’t stop.

 

This is how I roll

Posted on by Lauren

Ezra did it. He rolled over. And he has done it five times. I know it is the start of some awesome things. He completely surprised me, as I am learning both kids often. I am looking forward to all the other exciting new things Ezra will continue to show us.

He is getting so strong now since he has the extra weight on him. I feel like I have a whole new kid. Every once and a while I see a little twitch in his hip. Most the time I just stare and watch him, thinking in my head whether or not I am seeing his leg move a little, or maybe it is the way he is breathing. I still have no idea, but I do know as he gets stronger he is able to do so much more.

 

We had 2 doctor appointments in Grand Rapids on Atreyu’s birthday. I was looking forward to seeing the Spinal Surgeon because he has the best idea of what to do with Ezra’s back. Ezra has a Kyphosis on his lower back. Basically his spine curves out like a bump where his opening was. The doctor told us it will be a wait and see thing (like almost everything with Spina Bifida). He said once it starts giving him problems then we will see what we need to do to fix it. Which is great, I thought we would have to have surgery in the next year or two. Glad we get to hold off on it.

Here is Ezra’s back from about 3 months old. You can see the kyphosis.

We met with his developmental pediatrician. We continued to talk about his weight and his development. She was happy with the weight he has gained but would like him to weigh about 16 or 17 lbs. We have a chart for his height to weight ratio, which currently his is about the 15% for that. Our goal is the 50%. Which still doesn’t put him on the charts for his age, but that’s alright. He is becoming so healthy. Once he gains a few more pounds (probably in another month) we will be able to get him off that crap pediasure. 

Sometimes I get nervous when we see new doctors, or follow up with one when things were bad. But these appointments turned out great, even better than expected.
Since all I see is Ezra, somethings seem way worse than they really are. Like his back, imagine having some bone sticking out of your lower back. It sounds painful, but his doctor was so impressed with Ezra’s back. He was surprised at how good it looked (thank you plastic surgery). There are many other things that Ezra has going for him. We thank God for that everyday.

In summery: Ezra is awesome!

Still not Growing

Posted on by Lauren

We had another weight check for Ezra today. And he weighs 12 lbs 5 oz. Which is up from last time but still not enough. His doctor thinks he should be around 14 or 15 pounds by now. We discovered that Ezra has a high palate (the roof of his mouth) which would explain all the little “quirks” he has while nursing. It would also explain why he is working so hard, and burning lots of calories, to nurse. Most kids grow into their high palate when they are older so it isn’t much concern, it is just something that is working against us right now.

The good thing is that now Ezra takes a bottle from me, instead of gagging or throwing up, but his doctor wants to have him just on Pediasure and no more nursing. Which of course makes me a little sad. Pediasure has 30 calories per ounce and breast milk and formula only 20, so he would get way more calories with less bulk. Also, Ezra wouldn’t be working as hard to get the milk.

And of course if this doesn’t work by next week then he will get a tube.

It seems like every other week he does really well, then not so good. I don’t know if that is because I try so hard for a week and then when his weight comes back good, I relax a little. So I hope and pray this will help him. I already see him improving with his gross motor skills with the little bit of weight he has been able to put on. We just need to keep heading in the right direction.

 

Just had to add a picture of Ezra playing with the cat. Ezra loves it, the cat hates it.