Communication breakthrough

Communication for Ben is one of his biggest challenges and the root of most of his self injuring behavior. People talk about the terrible two's - a time when their child is limited in speech so they see a lot of meltdowns. Imagine a 7-year old with the inability to get what he wants because of his physical limitations, no speech, no way to make any vocal noises and a very limited sign language base/understanding. No wonder he is so frustrated. We have worked on signing Ben's whole life and he has definitely been improving. But getting spontaneous signs is hard and getting him to combine more than one sign together is even harder. With that being said, Ben just signed at school ALL ON HIS OWN " want more drum"!!!! This is HUGE for him!!! 

Demo wheelchair

Ben has shown an interest in gaining more independence with his mobility outside of the house so a demo wheelchair was brought in to school today from Childrens. It worked so well and Ben did GREAT! Attached is a video of him in it for the first time and we were so impressed b/c it was like he knew what to do when his hands were put on the wheels! We are now starting the process of trying to get him a wheelchair like this. It is going to be a fight with insurance b/c he isn't eligible for a new chair yet, but we think it is worth the fight b/c his needs have changed and this is really the right chair for him now. Wish us luck!! 

Note: He is super excited about being in the chair in the beginning. That is his happy dance he is doing. :)

Family Pics

My sister in law took some family pics for us. So many of them turned out great, but had to share the ongoing theme during the photo shoot - Ben making faces. 

Things have been going well

I am happy to report that everything in Ben's world has been going well!

School has been wonderful for him this year. I am very pleased that we moved him to Western Row Elementary School (our public 2-3 grade school). Even though he is only in first grade, he can go here for 3 years and they have a Resource Room (where he spends most of his day) that is a good fit for him. I am very thankful for his school team this year. They really seem to "get Ben", know when to push him and when to let him take a break. He has a few different aids that work with him through the day, his private nurse, a one on one interpreter and a special education teacher. He also spends time with the typical kids in his homeroom class, goes to art, music, science (where he gets to play with therapy dogs), and recess. Overall, he has adjusted really well to the 9-4 school day. 

Nursing has been going well too. We have the same nurse going to school with Ben every Monday through Friday and she is amazing with him! We have two night nurses and both are also very good with Ben, reliable and really seem to care about Ben. 

We have just started the process of getting our first floor bathroom modified for Ben - we were hoping to have it done by now but had some issues with the first contractor so we started the bidding process all over and finally found someone we feel really comfortable with. We are getting a roll-in shower added to our half bath. I am so excited to see the finished product. It will be so nice to give Ben baths that way instead of getting baths in the kitchen sink.  

Ben is losing his baby teeth... FINALLY! He lost one on the bottom center about a month ago and the one next to it is loose now. The wiggly teeth is making him a little more irritable than normal so I am anxious to see it come out. I was hoping he would lose his two front teeth in time for Christmas so we can swing "All I Want For Christmas Is My Two Front Teeth". 

First day of 1st Grade

 Waiting for the bus with Nurse Bobbie

 Praying for a good first day

 Off he goes!

On the bus

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.

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.