Shame on me for putting so much work into this blog and then not updating it since January. Here is the good and the bad on that. The good is that there is nothing to tell medially with Thomas and we haven't had any changes in his condition, we are living and enjoying our lives together!! The bad is for all of you who have taken a deep interest in our Thomas you haven't had the pleasure of enjoying this time with us. Its amazing to see all of the transformations that have happened on this journey with Thomas. I realized in our appointment yesterday that the anxiety is much less than it use to be, Thomas is very calm, vocal and is very in charge of his appointment.
So, yesterday we went to see our Neurosurgeon to check up on Thomas' neck to see if there are any changes in the movement between the fused bones. This was a concern that was brought up last year and was his main concern. At the beginning of each appointment you have to go through triage. Now this is a time with Thomas truly shines, which use to NOT be the case. He sat in the chair to be weighed all by himself, which is a first time that the nurse technician didn't get to see how much mommy weighed first to do the math to figure out Thomas's weight. He also stood up tall for them to get his height. WooHoo!! His weight and height haven't changed much, we know he is going to be short in stature. We will know more when we do our follow up with the Endocrinologists. He also informs them that he will not have his blood pressure taken by the machine but manually only. So not only did get it taken manually but he was allowed to pump it himself. He has great blood pressure at 100/68. :)
Thomas also talked non-stop, no surprise there. He was telling them how strong he was and that he can even pick up his bike at home. The nurse tech loved it and kept talking to him about being so strong. When we were put into our room this was written on our door.
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| "Strongest kid ever!" |
Every nurse, tech and doctor who came in to visit us referenced his strength! It was hilarious, I just can't make this stuff up. It was one of the most entertaining visits I have ever had with any of his specialists. He would even pick up the chair in the room to demonstrate his strength.
The worst part of the visit was the x-rays. Thomas prefers to stand during the x-rays, which could work if he were taller. The machine cannot go low enough to get the pictures they need. So, instead he had to sit on top of a box to get the pictures. These are flexion and extension x-rays so they have to get different shots of his neck to show movement of the bones. He is uncomfortable but tolerates it okay. Sitting up straight on normal is work but the easiest. Then she had him hold his head up as high as he could and his shoulders go up and the tears began to flow. It is an uncomfortable and awkward position for him. Then he has to look down and as far as he can and again he tolerated but not comfortable and his shoulders were up again. The tech was concerned about pulling his shoulders down and I quickly corrected her and told her that was natural for him to have the doctor review the x-rays before doing anymore. I am all for doing the x-rays for my son but not more than necessary. I am grateful that I know my son's body enough to be his advocate in such situations.
The doctor reviewed the x-rays and we are still stable. The bones haven't changed since our last visit which is wonderful. There is no reason to be concerned with anything at this time where his neck is concerned. I am so thankful that c3 and c4 are still behaving. Most people cannot tell that Thomas has anything wrong with his neck and that is such a blessing. We don't go back for another 12 months unless he starts to experience pain or any other additional issues with his neck.
Thank you again for all of your prayers, support and always being here for us. It means so much to have you on this journey with us.
Luke 2:40 "And the child grew and became strong; he was filled with wisdom,
and the grace of God was on him."
