Thomas had his 2.5 year check up and did great. Everything looks good, he did gain a little weight back from what he was down and had gained some inches. He is finally up to 33 inches from the 31.5 inches he has been at for months and months. His weight is back to 23 lbs which isn't bad but still lower then where he should be for his curve. The pediatrician still thinks it wouldn't hurt to send him to an Endocrinologist just to make sure they don't have any reason for concern. It seems as though short stature is just a trait of having Klippel Feil Syndrome, but we also want to make sure there is no additional development issues that may be overlooked or an issue with growth hormones. We are waiting on that referral now.
At the pediatrician's concern, we made an appointment with the ENT as she could not locate his left tube and didn't want to be responsible for accidentally removing it in the search. We went to the ENT and we was able to clean his ear through the microscope and was able to locate the tube. He said they should make it another six months.
We have continued with our physical therapy and its been a lot of hard work on our little man. His trunk is quite weak and his posture is not well due to the kythosis. We have been going weekly working on his core abdominal muscles and his back. Its a lot of hard work and he definitely fatigues quicker than he was with the other sessions. Today he did great with his sit ups, but his posture is still quite lax when not working. Her suggestion was to try the kinesio tape. She has put a small sample on his back for us to test to see if his skin reacts to it. I am to leave it on until Sunday unless I see a reason before then. Luckily, its on his back and he has already forgotten it is there. We go back on Tuesday and if all goes well she is going to put two to three strips down his back. This tape is quite interesting and unlike anything I have seen before. I saw some people in the Olympics wearing such tape but really didn't understand the reason. She explained the way the tape moves with the body and expands with the skin. It was extremely interesting. In Thomas' case, she is wanting to use it down the length of his back. The idea is when he is resting and his back slumps over the tape will go with him but he will feel it and remind him to pull himself back up with good posture. Its like a retraining of how to stand and sit with good posture for him. His muscles are getting stronger but somehow we need to mentally trigger him to sit and stand taller. Hopefully he will begin to do this and will not fatigue. Our overall goal has always been to protect his spine and do all we can to build his body strong around all of the abnormal bones. We can prevent the shape of the bones, the curvature of the bones or the way they move as they grow. So, the only other option is to strength his body around the bones and do all we can to help support it. We have always paid close attention to his posture, orthopedics for his feet, etc. Hopefully, this tape will work effectively for Thomas and give us another advantage for him.
The PT also helps with the feeding issues we have had. Since he has bad posture when he eats, it makes it more difficult for him to line his throat and stomach correctly to eat and swallow for long periods of time. Long periods of time meaning more than ten minutes in two year old land. I checked again though on us getting feeding therapy and they are still having to look into the diagnostic code that the insurance company will pay for. *sighs* It is still amazing to me how much power the insurance companies hold.
As this year is coming to a close, I can't help but reflect on where we are and how far we have come. I am so proud of my sweet Thomas and how much he has grown and changed since the beginning of this year. I feel so blessed to have the team at Children's Healthcare of Atlanta and their wonderful therapist who have really worked with Thomas this last year and made great strides. I am thankful for his doctors and specialists who continue to monitor him and work hard at being proactive. We really are blessed to have come so far this year. We have also spent thousands in his medical care this year alone and we have not only been able to stay current with our medical bills this year but have a small cushion in his medical account for 2013. I am so humbled to have had so many people reach out to us this year and support us with their prayers, support and donations. The fear of January coming and the insurance starting over again is real, but I trust that as he has in the past that God shall supply our every need.
Becoming a mom the first time changed my life dramatically. Becoming a mother of two challenged me and made me grow as a better person. Becoming the mother to someone like Thomas has taken me to places I never knew existed. I could list all of his diagnosis and all of the doctors we have seen this year, but all I can think of is how darn cute he is and how he steals the hearts of every person who sees him. I think of how my relationship with our heavenly Father has changed over my life and most specially in the last twelve months. My church became even more of a family to me than they had before because I was willing to open myself up and ask for their prayers and help. I truly think that raising three boys, raising Thomas, is much bigger than me, he deserves a village to bring him into this world with true faith in our Lord and an optimistic view and attitude to overcome any physical challenges that may arise in his lifetime. Thomas has changed the person who I was and the way I viewed many things. My life priorities have shifted and many things have become more trivial and less necessary than before. Its a good thing. God is good. God is always in control and his plan is so much better than anything I could have planned myself.
Everything is better when you smile.
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