Like us

Ben is going through the phase where he wants to do everything we are doing. Now when we go out to eat, he wants to be eating too. Ben still can't eat or drink anything by mouth, but he copies us when we drink and is trying to take bites of food like us. It is so sweet to see, but also breaks my heart. If only he had the muscles and coordination to do something with the food. Maybe now is a good time to start tastes of baby food again. Here is a picture of Ben copying us drinking from a straw. All he did was put the straw in his mouth, but he really mastered the art of looking like he was drinking.

Looking up

Seems everything is starting to look up.

We asked another doctor to manage Ben's behavior medicine. She has more experience with CHARGE and knows what seems to work for those kids. She started him on something new and so far, so good. We are keeping our fingers crossed that he doesn't start back into his usual cycle (great at first on the new med, then a downward spiral). The medicine he is on now is called Naltrexone. Anyone have any experience with that? So far, the only bad side effect we are seeing on it is trouble sleeping and restlessness. With time, they say that should improve.

School is going so much better. His days aren't as bad and some are even good. He still prefers to be home, but a definite improvement.

The new day nurse who we really loved agreed to take on our case permanently. Couldn't be more thrilled about that. She has a big heart, is wonderful with Ben, advocates for him while he is at school, and has been picking up sign language really fast. We are very fortunate to have her.

No new updates on the Home Care Waiver front.

Not any better

Wish I could say things on the home front were better, but I can't.

Changes have been made at school but it still isn't better for Ben. I am questioning what benefit he has even going since it is such a bad experience for him. I think he would be happier and in an overall better mood not going. And, nothing is accomplished there anyway because he is upset and self-injuring the whole time. The Special Ed Supervisor is planning on observing him tomorrow and seeing if she can make any improvements to his day.

We have decided to wean him off the medicine he was taking for his self-injuring behavior. We weren't seeing a lot of benefits to it and seemed to be causing a lot of bad side effects. Since we have gotten him off his day dose and on a lower night dose, he does seem to be doing better when he is at home with us. He hasn't been sleeping as well though. He has been waking up throughout the night for a few hours and still getting up at 4ish for the day. And he still seems to struggle with anyone else and I think it is because we know him so well and know what makes him mad and what makes him happy. He is just so difficult to understand his communication if you aren't with him daily. Within the week we will have him off the night dose too and then will decide if we want to try something different. Starting a new med is so difficult because Ben can't tell us if they make him feel miserable. We have to watch and guess.

We are currently in a holding pattern regarding losing our home care waiver. It will be reevaluated in 90 days.

Our nurse who is on maternity leave decided not to come back. We have someone filling in for her and we really, really like her, but we aren't sure if she is going to want to take our case permanently.

We went in to get Ben fitted for a helmet for his self-injuring behavior. We found out that because Ben doesn't fit a standard helmet, he would need a custom one made. To do that, we would have to go to another group specializing in helmets and get a casting done of his head. Ben would never tolerate that, so the helmet isn't in the works any longer.

On a good note, Ben has been healthy and is now tolerating his afternoon feeds by four bolus feeds - one given every hour (given through a syringe by letting gravity push it in over a few minutes) instead of being hooked up to a pump for 4 hours straight.