One tough cookie

 Well, here we are! We've made it past the one year mark and still going strong. If I could imagine what little man is thinking it would be something like..."throw whatever you want at me,  im the toughest little dude you're going to meet and nothing scares me!"  :)

We have gone through A LOT in the last month. Its been an emotional rollercoaster and the ride hasn't finished yet but we're making it through with a good attitude. What else can you do? Obviously, no one wishes anything difficult on their child but you have to make due with the cards that are dealt and stay as positive as you can. So here goes while I try to explain all the information we've gathered recently and where we're headed.

First off, we're in the process of figuring out what is going on with Jameson's spine. This all started when his chiropractor mentioned to us that she noticed one ribcage sticking out slightly more than the other. We then mentioned it to his physical therapist and then to Jameson's pediatrician. After his 12 month check up, we went to get chest xrays and instantly got the results back that our doctor believed Jameson had scoliosis. As you can see from his xray, there is a slight curve in the middle. We were automatically referred to Dr Weinstein at U of Iowa because he was supposed to be the best in the state. On top of the spine issue, you can also see in the xray that Jameson's right diaphragm is elevated into his lungs. This was something we knew about as he was born with it, but now we wondered if it was causing the spine to curve.

So yesterday the 21st, we went and had our meeting with Dr. Weinstein in Iowa City. We were told that he doesn't believe Jameson has scoliosis at this point in time but to check every 6 months-1 year. The news was bittersweet. We are extremely happy that this orthopedic surgeon with many years of experience is saying its not scoliosis but we've also heard a lot of stories from other parents of children with scoli that they were told to "wait and see" what happens only to find a year later that the spinal curve is MUCH worse and more difficult to treat. As of now, we are hopeful that this doctor is right and we have nothing to worry about, but we are still going to consider what his future MRI reads and decide from there whether we need another opinion.

We also saw little man's general surgeon Dr Irish today and are on the way to getting his surgery scheduled. We have a lot of different procedures that need to be done simultaneously so coordinating multiple people is the hardest part. Luckily, we have an awesome team of doctors that are adamant Jameson's gets the best care possible. He gets to have the best pediatric surgeon, anesthesiologist, and otolaryngologist in Des Moines!!!   The main part of his surgery will be to find his testicles (which are somewhere in the abdomen) and attach them where they're supposed to be. On top of that he needs a full brain/body MRI and a sedated hearing test. He will also be getting a new feeding tube installed while under. So lots of things to accomplish but luckily we have a great team looking out for him and helping us along the way.

I know this is tons of information, maybe even more than most people want to read but its our lives. We live, breath, eat and sleep medical research 24/7. It seems to be what comes with the territory of having a child with special needs and we're ok with that. As long as we continue to get the best information and help for little man thats all that matters. Thank for keeping him in your prayers and we'll keep everyone updated as we go along!!

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 :)