Saturday, January 19, 2013

Flying to Boston

This Thursday, Micah and I will be flying to Boston for the weekend. A couple weeks ago, I got a call from the team that is running a research study about the effects of blood sugar post surgery and developmental delays. They know there is a link between Congenital Heart Disease and developmental delays, but they have found that some patients' blood sugar spikes and some plummets after they have had surgery. They are trying to figure out if the extra step of managing the blood sugar helps or hinders the developmental delay. We have known for a while that Micah is some what behind the ball developmentally. He was unable to roll over until he was almost 1 and he worked and fought hard for 9 months to gain the ability to stand and walk. He spent so much of his first year in the hospital on his back with no occasion to learn these "normal" skills. He was also almost completely deaf for the first year of his life. After his palate was repaired and tubes were placed in his ears he was finally able to hear clearly. After so much hard work was put into helping his through the stages of movement, we began working on teaching him to speak. How to move his lips, mouth and tongue to form sounds and eventually words. He is now in a Pre K program for children with special needs. However he is in the program as a "Peer Example". I am so proud of him. I cannot wait to see him show off all of his new skills to the research team and to help in the care of current and future heart babies as they begin and continue their fights. Our heart babies are warriors! They fight for everything they have. Nothing is handed to them. They fight and earn all they have and all they are. Micah has fought and fought hard to be where he is now. He has fought to be here with us and I know he will continue to fight with everything he has. This will be the first time in his life that he has ever flown commercially so I am nervous about the flight. He has always been in full medical care every time he has been in the air. He has flown in 2 jets, a C-17, and 3 helicopters and every time he has been intubated or on oxygen. I am hoping that he will handle the changes in altitude and air pressure well. His doctors aren't overly concerned (but as his Mommy I worry). I am excited to be going home and seeing family and spending some quality time relaxing.

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