Tuesday, December 8, 2009


So, it had been almost 3 years since our last Spina Bifida-related ER visit. Not bad!! After so many ER visits the first few months of Toby's life I just thought that it would be that way on a regular basis. But here we are almost three years later. Praise God!

Toby had been waking up at night crying randomly and complaining of his head/neck hurting. I didn't think too much of it because it wasn't incredibly consistent. I decided to call our Spina Bifida nurse, and of course it was the usual, "Take him in if he gets any worse." Well, nothing happened Friday, and then Saturday it seemed like all night long. I ended up putting him on some pillows in the living room and sleeping with him out there. I was hoping to keep the rest of the family sleeping.
Well, we went to church and afterward he started telling me he was crying because of his shunt, and that it was hurting during Sunday School. Well, that was enough for me. I nursed Milo, got everyone settled in and Toby and I were off to the ER.

I can not be more thankful to God for how the night went. We had our rough moments, but it could have been so much worse. Toby was truly a champ!! He didn't cry when they put the first IV in. The second one was his undoing.(the first one clotted) Then we went up to CT. About a month ago when we did one he cried his eyes out. This time he said, "Wheeeee." and asked to do it again. The CT guy was nice enough to give him a little ride on the table. Then off to X Rays for a shunt series and again he did awesome. He even told me to stop holding him. He wanted to do it on his own. It was incredible. Then the X ray lady let him play with the dials on the machine. He told her he was going to be a Doctor when he grows up.

After all this (And not eating or drinking because they wouldn't let him), Toby was still a pretty happy camper. Granted he got to cuddle up with Mommy and watch TV most of the afternoon. Then came the results and our neurosurgeon Dr. Tullous. It seems like the pressure that they had adjusted about a month ago was too high for Toby, which was causing the headaches. Once they realized this did not mean surgery for Toby, they brought in dinner. Yeeeeaaah! I am so thankful to whoever came up with the magnetic shunt. They were able to adjust the preasure in about 3 seconds with a simple magnet. INCREDIBLE!

We aren't incredibly sure where we are with all of this. Toby hasn't woken up crying anymore and hasn't complained about his head hurting. However, the doctor warned us that it doesn't mean we are done. We are going in later this week for another CT scan. Hopefully Toby will think it's fun again.

So that's where we stand today medically speaking.

On the flip side. I hate leaving my other two behind for things like this. I am usually exhausted after days like this, but then really just want to spend time with Gracie and Milo. I am so torn between cuddling Toby up because of everything he just went through or throwing Gracie and Milo in my lap and never letting them move again. I really struggle with this aspect of our life. It is a constant battle of balance for me. I am so exhausted that I just want to sleep it off, but I want to make sure my other kids feel loved and important. Monday afternoon, during what was supposed to be nap time, Gracie and I went to Sonic for a quick drink and some talk time. It was nice and much needed. I can't believe how much she is growing up. I wonder how much things like this affect her and how much of this just seems normal to her. I really wonder what to tell her and what to just leave alone. Of course Milo has been able to nurse pretty much whenever he wants and get cuddled. It's hard to balance everything. Really, Really hard. But I'm learning. Slowly....very slowly.

Just another aspect of having a child with special needs. It doesn't just affect the child with the disability. It really is the whole family.

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