Ezra is 9 Months old! He weighs 11 pounds 12 ounces, and is 25 inches tall. Still a little guy, so hopefully we can keep heading in the right direction. Granted with all his puking last week his ped was thinking he is doing alright. We still have lots of weight to put on him though.
Ezra was enjoying his MumMum crackers. Even though he is still tiny he is so stinkin’ cute.
I also wanted to share this, thought it was so true. Credit goes to another amazing Spina Bifida mom, Joanna and her son Jet
October is SPINA BIFIDA AWARENESS month: You should be aware that having a child with SB may cause increased motivation to help others, a new found perspective in times of trial, a desire to enjoy the little things and commitment to change the way the world defines “disability”. Studies show that raising a child with SB will induce strong feelings of gratitude for even the simplest of milestones and produce a willingness to do anything, talk to anyone, try any method necessary to make life better for your child. Side effects include feelings of worry, fear, uncertainty, and anger but are tempered with love, faith, determination and hope. Having a child with SB is not easy…but loving one is.
We Ezra is becoming a pro at eating. As you can see in the video. He loves his prunes.
At his weight check-up he gained 5 ounces. He now weighs 11 pounds 11 ounces. Still down from where he was, but heading in the right direction. I was getting stressed because Ezra has so many doctors and specialist and they all have their opinion about what should be done. I just kept telling them, “let me talk to his ped and we will make a plan and let you know” When we went to his appointment his ped was the most relaxed and said everything we are doing is fine. He is gaining weight and we will continue to watch him. That took tons of the stress off. Keep praying he gets bigger and stronger. He is pretty behind on his milestones, even more than he should be with the Spina Bifida. Putting on some weight will help with that.
Last week we had 3 doctor appointments in Grand Rapids. It was a busy and emotional time. I think because before we left, Monday night, I thought it would be fun staying up until 2am canning peach jam and apple sauce with Janel. Ok it was really fun but I really missed my sleep.
On Tuesday we headed down to Grand Rapids for Nuerosurgery and Ortho appointments. Nuero went well, Ezra’s shunt is working great so we left there happy. After lunch and a quick nap we went to see Ezra’s Orthotist. They took X-ray’s of his back to get a better idea of what things look like. Then they weighed him, and he lost a pound! A whole pound since his 6 month check up! I was shocked and on the verge of tears. Ezra nurses great so I thought he would have at least gained a little weight, not lost it! On a good note his doctor said Ezra looked great from a ortho stand point. His legs are looking good and we wont have to do any surgery on his back for a couple years still.
Friday we had an appointment with Developmental Peds, which is just a more specific pediatrician. Since Ezra is behind in his development his other doctors wanted him to be seen to see if there was anything more we could be doing. It came at a good time since he has been losing so much weight. We spent the appointment talking about his failure to thrive and what else we can be doing to help him gain some weight. Ezra needs to eat a lot more than he is now. They think because he is so tiny and weak that he burns to many calories eating. So I get to nurse him more, and work on solids more. He will get weekly weigh ins to make sure he is heading in the right direction.
We ended the week at the farm. Atreyu enjoyed checking out the cows and drinking the milk. He now say “k-ow MmmmMmm” (cow, moo) whenever he sees a cow, or a horse. Ezra kept warm snuggled with me watching the cows. We are glad the week is over, and we have a nice slow week ahead with only 2 PT appointments.
We finally decided to let Ezra try some real food. I knew it would take a while for him to get used to it, and from previous experience I knew he would puke, which he did. I was able to get a few bites down before he puked a little, and each time Atreyu said “no” because he wanted that bite. So once Ezra was done, I let Atreyu have at it.
Apparently he still loves stage 1 purees.
Ezra nurses fine, so I hope he will catch on to the whole eating real food thing with out to much difficulty. One day at a time, just like everything else.
In other things, Ezra continues to have PT once a week. He still isn’t able to hold up his head. So we work on that a lot. I hope he gets stronger, but he still has such a little body. We do little pacifier workouts to get his neck stronger. I can see improvements, but I can’t wait till he is a pro at it. Since milestones are coming much slower than a “normal” baby it’s interesting to see how much a baby has to work at something. One day at a time, just like everything else.