A Little Progress

and a Happy Birthday.

yup today Ezra turns 1! I feel like today is a happy New Year more than January 1st.
I am so glad the first year is over. It was hard, but Ezra is doing great. Like with his pregnancy, there were so many unknowns. It is hard trying to figure things out for Ezra. We have a better idea of what to expect but I am sure he will continue to surprise us. Now that I see him progressing and getting stronger, I love seeing all the new things he is learning and figuring out.

He is getting better at rolling over. So good that I put him on his belly and before I can hit the record button and the camera gets going he is already on his back!
Here is the ending of him rolling over. I will get a video of the whole thing.

Also we have been working on him eating more. He is really catching on to it.


His other new trick is a little movement. Like when I put him down for a nap one way he usually wakes up sideways and on the other side of his crib. He is a slow mover but he is getting there. It is such a joy to see him getting stronger. His head control is so much better now also. He still wants to look up, but now he get it back down. That was the hardest part of the first year. So I am glad we are moving past it.

We are looking forward to what this year will bring. Hopefully new equipment like a wheel chair. Then I will have 2 toddlers moving around and getting into everything. Won’t that be fun!

Tonight we have Ezra’s birthday dinner and next week a birthday party. More pictures will come.


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This is how I roll

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!

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Still not Growing

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.



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