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.
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.
This week we had a few appointments so it was a little busy. The boys had there 6 month and 18 month check ups.
Atreyu grew a ton, which I figured he would. He has been eating so much. He now weighs 25lbs and is 35 in tall. He is starting to pick up more words. Most our conversations go like this…
Me: yup that’s a rock
A: bird..tweet tweet…bird…tweet tweet tweet…
Me: yup thats a bird.
And on and on. It’s pretty fun.
Ezra is 12 lbs 7 ounce and 24 1/4 in tall. which means he gained one ounce and a quarter inch since his 4 month check up. The doctor doesn’t seem worried right now, so hopefully Ezra will continue to grow. I have seen him getting stronger. His favorite thing is to raise his head up and start talking to me at 2 in the morning. But he couldn’t get his head that stable before so I am pretty excited for him.
When he is upright he still doesn’t control his head. It is a little frustrating but I know he will get there, he is a tiny boy with a big head to hold up.
We also had a plastic surgeon appointment in Grand Rapids. We drove down 2 1/2 hours for our 5 min appointment, but it is good to follow up and make sure everything is still healing right. Which it is.
We had another trip down to Grand Rapids to see his Neurosurgeon. He had an Ultrasound in the afternoon. Me, Atreyu and Ezra left early to meet Emily and Carson in Grand Rapids to hang out at a park. It just makes the trips down the GR much more fun.
During the head ultrasound the boys did great. I thought Atreyu would have a break down because Ezra’s appointments were during nap. But Atreyu did good, and almost fell asleep while Ezra was getting his u/s. After that we headed to see his doctor so he could tell us how awesome Ezra is doing. Which the doctor agreed. His head and shunt look like they are doing great.
Ezra getting his scan.
Atreyu enjoying a book during the appointment.
One of the joys of getting a head Ultrasound is the cool hair-do from the gel.
Hanging out in his Bumbo with his rockstar hair.
It was a long day but we are happy to be home as always.
Now that doctor appointments have slowed down (from once a week to every 3 months now) I have been enjoying life with an infant and toddler. Ezra is so much easier than Ateryu is/was.
Atretu is sleeping on his new bunk bed. He did great at first but just this morning he discovered that he can get out of bed. We have been working on that today. Things are going well but there are moments in the day that are hectic.
I have still been trying to finish all of Ezra’s paper work. Sometimes I feel like updating the blog is just another form to fill out. So it has been lacking.
Over the past month I have been working on getting Ezra started in Physical Therapy (PT). He is still pretty weak from all the things he has gone though, so we are trying to make Ezra stronger so he can somewhat catch up. I didn’t expect how crazy figuring out how to get Pt could be. The State offers a program until he is 3 where he can receive PT (or OT, or Speech Therapy) from the schools system. The awesome part is that they come to the house. I don’t have to go anywhere. It took a while to get an evaluation, and because it is a part of the school system, they all were on Spring Break. Now that we have started PT,school is almost out for the summer, and Ezra’s PT will only be here once a month. So we have started PT at another Therapy place. That also took some time to get figured out. Ezra had to be evaluated and approved by insurance. But of course insurance denied that Ezra needed PT for Spina Bifida, so we had to go back and call it something else. Now he is approved, but our insurance renews in May, which means that our family deductible renews in May. So then we would have to pay for it anyway. Right now Ezra is getting as much PT as he can get in the last weeks of April. Then we will see what happens. I am leaning towards switching over to Munson’s pediatric therapy since it is covered by Medicaid and Ezra has that for a year.
I know you all wanted to know all that information, but if you have read this far I guess you survived. I think I dislike insurance stuff more than the Spina Bifida. Ezra has shown improvement with the PT he is getting. Which is great, as a mom you always worry about the little things. Atreyu is a fan of PT also, he likes the stairs and the giant exercise balls.
Here is Ezra and I enjoy the sunny days we had before this snow!