Category: Spina Bifida

The big news is that plastics stopped by today and approved Ezra to be discharged! His back is looking so good. It will still take a while to completely heal, probably more than a year. But at least he is able to heal at home instead of in the NICU.

Tomorrow we will be doing some more test to make sure everything else is alright. These test Ezra needed to be able to be on his back to do. We will check his bladder with a VCUG test. They will basically fill his bladder and then watch how he pees. This will check to make sure his bladder is emptying completely and makeing sure everything is working alright, if it is not we may have to catheterize him about every 4 hours to help empty his bladder fully. Bladder and bowel control is connected through the lower spine, around the sacral level, because this part of the spine is damaged we don’t know exactly how it will work.

We will also have ortho come and look at his legs and hips to see if there is anything needed to be done, or any problems we need to know about.
Once these things and a couple other things are done we get to go home. Probably Thursday or Friday. If anyone is heading to Traverse City from Grand Rapids during that time let us know if you can help us bring some stuff back up. We somehow acquired more things living down here for 6 weeks.

Yesterday Ezra had another ultrasound to check his shunt. Right now it is working but might not be working as well as it should. If it stays this way he might need a revision. Just another thing to add to the prayer list. Thank you everyone for your prayers. We cannot wait to get home.

We’ve been hoping for dramatic improvements but instead Ezra has been making baby steps. They are however steps forward, and closer to going home. Over the weekend he came off the heater and today, he got
permission to lay half on his back. It’s not all the way on his back, but in baby step fashion, half. The physical therapist can do more with him now and we get to hold him in more positions. When things don’t happen on your schedule it you have to trust more.

Today we were able to start helping with his dressing changes, since we will still be doing that once he goes home. Slowly we are meeting requirements to go home and someday, hopefully soon they will tell us, “go home.”

Dave keeps saying I need to do a post but I just give him the pouty face and tell him to do it. I feel like if I keep writing post it would be filled with me complaining all the time. It is like a roller coaster of emotions here. Two days ago I was at a point where I couldn’t take it anymore, but yesterday and today I have felt much better and have actually enjoyed being in the NICU. I know it depends on how I am feeling but a lot has to do with who is working with Ezra and how tired I am. Yesterday and today Ezra has had some of his favorite nurses working so that really helps. They are so good with him and such caring people. The night nurse even surprised us with a casting of Ezra’s handprint. It is those small things that make me go “alright… I guess I can hang out here a little longer”.

Ezra is doing so well. The top part of his scar is blistering, which is what they expected would happen. The doctors are just watching that to make sure it doesn’t open. If it does they will probably just have to add a few sutures to keep it closed.  Basically just more time for healing while we sit around the NICU.
I spend most of the day just holding Ezra and playing on Dave’s old Iphone. It makes the days go faster. I can’t wait to be home so I can cuddle with Ezra while Atreyu is playing around. If I am with one I miss the other. It is really hard. Atreyu is changing so much here. He is already growing out of his 12 month clothes and has started to climb on everything! (and of course now fall off of everything). I know we will be home soon enough and I will be so happy once we are there.