Waiting for the bus with Nurse Bobbie
Praying for a good first day
Off he goes!
On the bus
Wednesday, August 22, 2012
Tuesday, August 21, 2012
Where has the time gone?
I can't believe it has been so long since I've posted an update! I sit here, the night before the first day of school and wonder where the summer went. I do have to admit that when things are good with Ben, I don't post as often. And things have been better than good...they have been GREAT!
Ben's behavior problems have been practically non-existent all summer. I don't know if it is because he is out of school, if the medicine he is now on makes everything less stressful for him or if it is related to a new therapy he is getting called Cranial Sacral; but whatever it is, I'll take it! Usually summer drags on and he gets so bored. This year it flew by and he never seemed bored. He enjoyed walks, laying on a blanket in the yard, running errands with us, going to the pool and doing his therapeutic horseback riding.
Tomorrow morning he starts 1st grade at a new school with an entirely new school team. This was something we wanted because last year was so difficult and upsetting for him. Fresh start, fresh people, fresh building. And so far, I have been very impressed with everyone I have met on his new team. They seem excited to have him and willing to try and make it successful and enjoyable for him. I am anxious to see how he does - especially considering he has never been to school for a whole day before (this year he gets picked up at 8:45 am and gets home at 4:08). Talk about a full day!
I promise to post a first day picture tomorrow.
Ben's behavior problems have been practically non-existent all summer. I don't know if it is because he is out of school, if the medicine he is now on makes everything less stressful for him or if it is related to a new therapy he is getting called Cranial Sacral; but whatever it is, I'll take it! Usually summer drags on and he gets so bored. This year it flew by and he never seemed bored. He enjoyed walks, laying on a blanket in the yard, running errands with us, going to the pool and doing his therapeutic horseback riding.
Tomorrow morning he starts 1st grade at a new school with an entirely new school team. This was something we wanted because last year was so difficult and upsetting for him. Fresh start, fresh people, fresh building. And so far, I have been very impressed with everyone I have met on his new team. They seem excited to have him and willing to try and make it successful and enjoyable for him. I am anxious to see how he does - especially considering he has never been to school for a whole day before (this year he gets picked up at 8:45 am and gets home at 4:08). Talk about a full day!
I promise to post a first day picture tomorrow.
Thursday, May 31, 2012
Feeling defeated, but HUGE Progress
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.
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.
Wednesday, May 30, 2012
Thursday, May 10, 2012
Bench
Finding a nice bench on a walk around our neighborhood was the highlight of my day yesterday. Ben enjoyed sitting on it, laying on it and just taking in the nice day with me. Moments like this make me realize how much my little guy is growing up and getting stronger. He would have never been able to sit like this a few years ago.
Easter Egg Hunt
My brother and sister-in-law hosted an Easter Brunch. It was Ben's first official Egg Hunt. He enjoyed finding the first few eggs, then decided hanging out in the grass was more fun :)
Subscribe to:
Posts (Atom)