Takes a Village

The saying "It takes a whole village to raise a child." does a good job of describing Ben's first day of Kindergarten. He had 7 adults there to make sure everything went smoothly for him (his usual team will consist of 3 main people with him at all times). I am so thankful because it went as well as it could considering how much trouble Ben has with change. And this year, the changes were everywhere (in addition to all the new people and the new room, he ended up having a last minute interpreter change too and didn't get the same woman we loved from last year).

There is still a lot of accommodations that need to be made and things that need to be figured out logistically, but overall I think he is going to be in good hands this year.

Ben and Nurse Heather getting ready for school.

And off he goes into the building.

School...what is going on?!?!

Ben wen to school today to see his new classroom, meet his teacher, his special ed teacher and his one-on-one aid. We thought it was a good idea for him to see everyone and his new room before it became filled with 23 other Kindergartners.

He seemed excited when I showed him his picture card for "school". We got there and we pushed him into his new classroom and he instantly started signing "all done". He eventually warmed up to the place and his new teachers enough to allow me to take him out of his chair and put him into his pony walker. He cruised around the room once then took off down the hall. His nurse followed him while I continued to meet with the teachers. After about 5 minutes, we decided to go find Ben and see where he went. I was heartbroken to see that he found his way back to the Preschool wing and when I spotted him, he was turning towards the door of his old room. The door was shut and the lights were off and he just stood in front of the door reaching for it to be opened. He kept on looking in the window next to the door and was just thoroughly confused. After a few minutes, I turned him around and pushed him in the walker back to his new room. He drug he feet the whole time and cried.

I now he needs to move on, but I wish he didn't have to. This is going to be even harder than I expected it to be. Tomorrow he goes back again for a 30 minute orientation with half the class.

MUST get a bigger trach ASAP!

I am trying to see if Ben can get in today to get a bigger trach put in. If a bigger trach will make it harder to pull out, I can't go another day without trying one. He has now had 7 emergency trach changes since Saturday and I can't imagine him going to school with this issue. And the ENT team isn't sure what size he can move up to since his trachea is so short but hoping we can move up some. A scope through his trach during the office appointment will determine if the trach is ok.

Back To School Supplies: Bigger Trach

We have added a bigger trach to Ben's list of back to school supplies. We will go in on Monday and get it put in during an office visit. They will do a quick flexible scope at that time too to make sure it isn't rubbing against anything. This will hopefully make it a little harder for him to get it out when angry.

School and Behavior Plan

Ben starts Kindergarten on August 23. He will be going from 9am until noon Monday through Friday. He will have a new teacher, a new special ed teacher, a new one-on-one aid, new therapists and a new classroom. Lots of changes for him and he doesn't usually do well with change. To say I am nervous is an understatement. I'm very thankful to have him start the year with the same two home care nurses and the same interpreter though (his one nurse is expecting and will only be working until December).

We have also been meeting with a Child Psychologist at Children's Hospital to develop a behavior plan to break the Self Injuring Behavior "SIB" Ben has been doing (head hitting on the floor, head hitting with his fist, biting and trach pulling). We have a plan in place that we started about a week ago. This is part of the reason I am so nervous about school. We have been warned that the behavior may get worse before getting better and we have had five trach emergencies in three days - four of which were Ben pulling it out, the other was a bad mucus plug. Hoping this is the worst of it and it will settle down from here.

Ben's Home

Ben is home. All went well. Airway is still in bad shape - no surprise there. We weren't expecting any change with it. His eye has no long term damage, which is great. We will get cat scan results and blood work later after they have been read. Have had 20 plus OR experiences with Ben and this one was by far the smoothest and the best group of people we've had working with him. Very thankful for that.

Visit to the Operating Room

Tomorrow morning Ben has his OR visit. The main reason for the visit is to do a thorough eye exam to make sure Ben didn't suffer any permanent damage from the injury. They will also check his vision at the same time. Because putting Ben under general anesthesia is such a risk for him (and all kids with CHARGE Syndrome), we coordinated everything else he is due for to be done at the same time. We are so fortunate to be at a hospital that is willing to let us do everything at once if it is in the best interest of the patient. Those additional things will be:
MLB - scope of his airway
Cleaning of his ears
Checking of his nasal passages to make sure they are still open
Blood work for nutritional labs and thyroid function
Head cat scan to make sure the enlarged ventricles in his brain haven't gotten any worse
Going to be a busy day, but no incisions or recovery so that is the good news. Praying all goes well and the results are good.