April Updates

Hello again everyone!

I had some time tonight to update the blog with new photos as we're closely approaching the big day. Jameson will be a year old on May 3rd!!! Its hard to believe a little 5 lb munchkin has blossomed into the little man we know and love today but here he is all 15 lbs 6 oz at the doctors office today! Still wearing his size 2 diapers and working hard in therapy almost every day of the week. :)

Just some quick updates for everybody who is following our story. Sleeping has been amazingly improved since our last post. He's been on hydroxyzine since March and it seems to finally be working along with the clearing up of his most recent ear infection. We are soooooo glad for this, not only for the obvious reason of getting more sleep but because the next type of med they wanted to put him on was a heavily addictive sedative and we weren't comfortable with that at all. Its amazing how after 3 months of not sleeping all of a sudden he's back to a semi-normal schedule. AMAZING!

Jameson was also fitted for a new helmet last week which we should be getting from the orthotist soon. We are happy to report that his doctor advises we have much more time to work with the helmet than a typically developing child due to Jameson's slow rate of growth. Anything to avoid surgery is a plus in our book!

We also received word this week from the U of Iowa that little man's genetic bloodwork came back negative for the SMC1a gene mutation. This is the second most common gene mutation for people with CDLS, after the NIPBL mutation. This basically means that Jameson is still a medical anomaly in that they haven't located which specific mutation he has thats caused him to have this disorder. The amazing thing is that he could very well have a mutation that hasn't yet been discovered or maybe just a handful of people in the world might have. Crazy how science and the human body work.

Thank you all again for checking in with us and keep praying for Jameson's continued progress in therapy and with his doctors and specialists.  :)

Thankful

As we come closer to Jameson's one year birthday, it's fun to look back and see the progress he's made. While some days can be hard, we find that every day there is something to be thankful for.

Grandma Gina and I were just talking earlier today about how much little man has changed since last May. When our nurse came to weigh him today, he had finally hit the 15 lb mark! What a celebration for all of us! We reflected back on when we had difficulty getting him to the 6, 7, and 10 lb marks. Sitting in the hospital for two months with a feeding tube down his nose and throwing up every day...he could barely gain an ounce. And to look at him now is just amazing. Such a happy little soldier. No matter what nature seems to throw at him he has an attitude that is to be admired.

One of Jameson's physical therapists said to me this week something that really struck a chord. It's not worth it to look at the future and put yourself into the dark places in your mind. We may not know how far Jameson can go or what our time will necessarily look like...but you can live each day to its fullest and be thankful for everything you have. And what we have is an amazing gift.

Love to you all :)

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.