Category: Spina Bifida
One month home
We have been home for a month. It is pretty amazing.
Thursday and Friday we had the joy of driving down to Grand Rapids for doctor appointments. Thursday we had an ultrasound to check Ezra’s shunt. After we got Ezra’s head all gelled up and looked at, we headed over to the neurosurgeon’s office to see how he was doing. Well Ezra is doing great. His shunt is still working and we don’t have to see him again for 3 months. Yay.
Friday we had an appointment with Orthopedics. It was our first one since Ezra was in the NICU. I was looking forward to the appointment to see how Ezra’s legs are doing. Since he doesn’t move them I wasn’t sure if anything needed to be done.
The ortho thought his legs looked great and we don’t need to do anything. We talked about somethings that will come up down the road. Basically lots of initials, AFO’s, RGO’s etc. but for now he still gets to just be a baby. We also talked about Ezra’s spine. He has a pretty large bump on his back where the opening was in the spine. We talked about surgery options to help him, because it is so prominent it could cause other problems. But again, that is something that doesn’t need to be figured out for a couple years. She also said we don’t need to be seen for 3 months.
That means we don’t have another appointment down in Grand Rapids until May for Urology. I am pretty excited. We just have the normal baby check-ups. We do start Physical Therapy this week, but they come to our house for that.
The boys had a long two days of driving back and forth.
But we are home for at least a little bit.
0310
Ezra does not like getting dressed,
but he has the cutest mad face
I love plastics
Yesterday, Ezra and I went down to Grand Rapids for his Plastic surgery appointment. I knew that Ezra’s back was looking better and I was just hoping that the doctor would say we could leave him in the car seat longer than 30 mins. Well he had even better things to say. Ezra back is closed. And now we don’t need to do a dressing anymore, Ezra can get wet and he can be on his back for an hour. Every few days we will extend the time on his back and see how he tolerates it. Because he has the bony part that sticks out on his back, we have to watch and make sure he doesn’t get pressure sores. Even though it is sealed the skin is still really thin.
These were things I was so excited to hear. Ezra is doing great.
We spent the rest of the afternoon together walking around the mall, then I decided to go see a movie. Ezra slept the whole time and I enjoyed myself watching The Kings Speech. That night the other SB moms in Grand Rapids were having their monthly coffee support group. I love when I have chance to spend time with them. They are so encouraging and it is nice to talk to other moms who have been through these same emotions. And of course I loved showing Ezra off.
Dave stayed home with Atreyu and of course I missed them both.
Atreyu was helping push Ezra in the swing.
