Swimming...

It's going to be a FUN summer. Carter loves the pool. We went on a long walk today and when we got back home, we went to stick our feet in the pool. It was kind of cold, so that was all we were planning to do. But he was having so much fun splashing, that we finally just took off his clothes and put him in. We thought the cold water would bother him. Not so much. He was loving life. I think this will be a regular occurrence all summer long.

Another Surgery

Dang I hate writing these updates. With a very heavy heart, I'm sharing the recent news we got from Carter's neurosurgeon. After his latest MRI, it appears Carter has a cyst in his brain. It is a build up of cerebral spinal fluid connected with his hydrocephalus. The concern is that it is right next to his optic nerve and could be stretching/damaging the nerve - which could lead to a visual impairment. So to avoid that, he wants to do an endoscopic fenestration of the cyst. He'll be drilling into Carter's brain and opening the cyst wall to allow the fluid out and keep the cyst from growing and putting pressure on the nerve. It's a quick, low risk procedure - about 8 minutes of actual surgery plus the time for anesthesia. And it will most likely be an overnight hospital stay. Surgery will be Monday, June 4.

This latest development has really hit us hard. We have been feeling really defeated and a little blind-sighted. I can't help but wonder if this is going to be our life. Is every routine check-up going to reveal another issue that needs to be treated or monitored? I try to force myself to look on the bright side - this is a much less serious/complicated procedure, there are no problems with the shunt, his heart has been healing perfectly after that surgery, etc. But optimism isn't really my forte and remaining strong is tiring.

Prayers are appreciated. 

This was an interesting and enlightening week. Carter hasn't been himself. He's been extra grumpy and sleepy. And really, really whiny. This may not sound like much to complain about, but with his shunt, any change in behavior could point to a problem. I had been noticing symptoms since Monday so I called the neurosurgeon on Wednesday afternoon to touch base. After describing the symptoms, the doctor ordered an MRI to check on the fluid levels in his head to see if the shunt is operating properly. While waiting for the MRI, we called our pediatrician just to make sure it wasn't an ear infection or other common, less-worrisome issue. When we listed his symptoms he said, "How quickly can you get here?" That didn't really do much to ease our concern. But after a full check-up, there wasn't anything going on that he could see. He did reassure us that the shunt was probably not malfunctioning or completely blocked. If that were the case, Carter would be completely miserable and vomiting. But it could be a kink or minor block in the tubing. Or the setting on the shunt may need to be adjusted. So for that, we had to wait until we could get the MRI.

In the mean time, Carter seemed to be feeling better. Still whiny and not sleeping great at night, but not nearly as bad as earlier in the week. We were definitely relieved and encouraged by his improving mood.

By Friday, we had insurance approval and an appointment for an MRI next Wednesday (one week from the time we first called). It will be a quick scan of his ventricles. No sedation needed - thank goodness. Since Carter is pretty much back to his normal self, I'm not too stressed out about the fact that it's taking a whole week to get an appointment. And I know that if he gets worse (fever or vomiting), they'll see us immediately. Also, our neurosurgeon is on call this weekend and we have his private cell # if needed.

All this to say, this whole week will probably be a reoccurring scenario whenever Carter gets sick or out of sorts. I'm sure we'll learn quickly what are "shunt symptoms" vs regular sickness. But all the doctors assured us that we can't be too cautious and there's no such thing as crying wolf when it comes to kids with Hydrocephalus.

Birthday party!

We celebrated Carter's birthday with the family on Sunday. Some food, presents and the traditional first birthday cake smash. Unfortunately, Carter did not get into the cake like most one-year-olds. So instead of the pictures of the birthday boy covered in cake, I have pics of him crying and begging to be let out of his high chair. He didn't mind the taste of the cake, he just wasn't a fan of it being all over him - especially when he started rubbing his face and getting it in his hair and eyes. After we wiped him down, he was good to go again. He had a lot of fun with his grandparents, aunts, uncles and cousins. Then he crashed for 2-1/2 hours so dad and mom could clean up and relax. Good day.

with cousins jacob, josh, and caleb

not so sure about this...

can i be done now?

enjoying his new toys