Glass half full

I've been purposely waiting to post something lately....

It can be difficult when you feel like there is nothing positive to say...but I've come to the realization that when you're in a situation like ours it's going to be a roller coaster ride. Lots of high highs and low lows. This blog is meant to be a way to share Jameson's journey and feel the support of everyone who loves him. So I'm going to keep doing that.

We've had a rough couple months with Jameson sleeping. When we first got out of the hospital, he slept fantastic! 10-12 hours at night and quite a few naps during the day. Since the beginning of the year though, it's been a battle. At first we had to rule out the normal things; constipation, hunger, sickness, a phase, etc. After almost 2 months, we realized something wasn't right. It was getting to the point where he might sleep 8 hours total in a 24 hour period...naps and overnight. This just wasn't enough sleep for his brain to develop and to do the 4-5 different therapies and numerous appointments. We got to the point where his pediatrician said we needed to try medication. This was an extremely difficult decision, as the thought of having to put him on meds just to sleep sounded horrible...but the alternative was him not being able to give his body and mind rest and therefore put him further behind than he already is. Since we started, we've tried a few different types of meds and are on one right now that seems to help although his sleep is still a major struggle. This had definitely been the most challenging thing we've dealt with lately. I pray to God every night to help him sleep so he can continue to grow and get stronger.

Another major issue has been his helmet. After he developed a major infection on his scalp we had to leave the helmet off for well over a month. After getting the ok to put it back on it didn't even take a week for the wound to partially open again due to the skin being so thin and damaged in that area. Our orthotics doctor is continually working with us on trying different things but it's a challenge. I think Jameson might be one of the most difficult cases he's had so that slightly amuses me when we get to stump doctors and specialists. :)

Probably the biggest blow we felt this last month was when Jameson failed his 4th hearing test. He hadn't had one since October and we felt his hearing had gotten so much better since then so for him not to be able to pass it again was rough. While the idea of hearing aids or a cochlear implant don't scare me, it's more the thought of him having to get through one more challenge that's hard. Sometimes you just throw your hands up and say, geez doesn't he have enough already? But then you have to remember there are so many things still that we can be thankful for. Glass half full.

While it's definitely been a rough few months we are still happy and blessed every single day. Jameson has been making great progress in therapy he is getting ever closer to that head control he wants so badly. While he still can't completely roll, he's finding his own ways to move around on the floor. It's pretty amazing to watch him get enjoyment out of toys and people, something he didn't have even a couple months ago. We are so grateful still for everyone's love and support and we'll continue to keep you all updated through the highs and lows.