Ben had his annual airway scope, ear cleaning, nasal scope and blood work yesterday. All went well and Ben is home doing great. The blood work results that have come back so far have been normal, which is a relief. We are however, feeling defeated after learning Ben's airway is still inflamed and nothing can be done to help. The inflammation has to be down to do the airway reconstruction and that has to happen before the trach can come out. His scope pictures were given to two other ENT's in the group at Cincinnati Children's for additional opinions. We also wanted them to compare these pictures to the pictures taken over the past 7 years to see if any slight improvement has been occurring. We were told that his airway is very typical to the airways of other CHARGE kids needing reconstruction and we just had to give it more time and let him grow before anything can be done. Doing something now could cause severe scarring that would make future surgeries unsuccessful and ruin any chance of getting his trach out in the future. As hard as it is to just wait, it looks like that is our only option. Guess we just have to get use to Ben taking his trach out 10-20 times a day (yes, that is his new hobby).
Speaking of just letting Ben grow, that is another challenge. His weight is back down to 32 lbs. He hasn't gained any weight in 3 years. His is getting taller and is now 44", but needs to have his weight increase to thrive. We are going to try increasing his calories again.
On a good note, Ben's physical accomplishments has been amazing lately. In the past month, he has progressed more than he has in the past year. It is so exciting to watch. He is able to pull to stand from a chair to reach something on a short table, he gets into crawling with his head down and rocks, he can push himself on a ride-on toy and turns himself directions, he is able to scoot up onto the first step in our house and lay on it without help, and he can put his feet on the pedals of a tricycle and peddle in short bursts.
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