Updates

I ended up being able to get little man into the orthopedist on Wednesday. I am so glad I was able to get him in before his 2 year appointment on September 13th! YIKES! 2 years?! Where did the time go? We are having a small party with some friends on his actual birthday, September 10th. He is obsessed with oreos so I am planning on making a cake for him to smash with some oreos. Who doesn't want to eat cake on their birthday! :)

I wasn't really prepared to hear this, but J has mild scoliosis. There are worse things, yes, and we don't really know what is going to happen but I was devastated nonetheless. One more thing to add to our plates. We saw an orthopedist who doesn't specialize in spines so I don't really know what to expect until I meet with the spinal surgeon at the beginning of November. He needs another x-ray at the end of October to see changes and then we will meet to hear our plan. Chances are good that he will have to have x-rays every 3 months to see the rate of change, if any. She did say that she expects him to have a more severe curve as time goes on since the rate of the muscle next to the curve in the lower part of his spine has grown quickly in the last 7 months. If he was older it might not be so significant but since he is so young the potential is there for it to turn into more. Right now we are going to continue what we are doing now, encouraging him to sit up straight, PT, standing, etc. What I now wonder is if my intuition was correct a while ago in thinking that standing and being in crawl position, as well as transitions, are painful for him. It is so difficult when all we have to go on is a cry-not words. I have to trust my gut so I am going to make sure I make it clear to the spinal doctor that he very well could be in pain from this. Luckily he will have his AFO's and sure-steps in the next couple of weeks and I will be able to monitor progress with that support and see what changes I see with his spine.

So we have a vague "diagnosis" for one thing but I have lots of questions. I was kind of hit by surprise and didn't know what to ask-nor did the doctor offer much more then a few names. I know what I get to the specialists I can ask more questions and be better prepared. If things turn worse and interventions are needed there are a few options before surgery is considered-mostly braces but also some wet-suit-type of material to wear around the middle. His therapists are a little cautions of that because they don't want him to rely on that support instead of all the work we have done with his core. Not the best news but also not the end of the world. I have much more perspective today than I did yesterday. I know tons of people have this and do just fine but it is still devastating for us. This little kid knows no different but we do. We just want something anything to be easy for him. Lots of people are very wonderful with their words of encouragement whenever they ask about Jake and we appreciate all of it. A nurse at our school asked me the other day if I think he is ever going to "catch up". It didn't bother me at the time and I simply said I don't know-but now I think about how ignorant people can be. I know they don't mean to be (or I'd like to think the best about people) but wow. I have tried to get some thick skin but it still makes me feel sad about the struggle that I know will be in his future. Bobby said it perfectly last night, "He is and will always be our son and we love him no matter what." He may not be average or normal and he may not have the easy road, ever, but he is so strong in our eyes, he has taught us so much, he has touched so many people, and he is simply perfect and we love him more than anything.

Last night in the bath the kid said, "Uh oh!" as he dropped a full cup of water over the tub and on my leg. WHAT??!!!! I had to double take my hearing and I yelled to Bobby, "Did you just hear THAT?" I thought it was a fluke-even though it was in context and he said it oh-so-clearly. Later he was drinking his sippy cup and pulled out out of his mouth and said, "Uh oh" again! I am still kind of skeptical but today during his OT therapy I was telling his therapist about it and he said it AGAIN! She heard it and Bobby heard it this time! Dare I say we have our first word?! I will see if it keeps happening but that would be amazing! Now Bobby and I don't have to fight about who's name he is going to say as his first word (mamma vs. dadda). Just kidding! It is because he loves both if us so much he didn't want to hurt the other one's feelings. What a wonderful baby!

He is looking more and more like a toddler. He is loosing his cute chub (except in his cheeks of course) and getting so tall. It feels so good to write about his accomplishments and all of the struggles we have gone through and will certainly go through in the future-this is kind of therapy for me. Who doesn't like to gush about their kid! Thanks for reading, caring, and supporting all three of us. You are all such an important part of our lives. We have lots of heartbreak but more healing and celebrations than anything. We are so lucky to be able to truly celebrate every little thing. Life is precious and we all need a reminder every once in a while. Things were so calm for a while--I guess it was time for a shake up.

BTW, if you have any interest, here is what Jake is getting for his legs in a week or so. http://www.surestep.net/indy2stage.php