Home from Texas

I have been a little busy over the last several days and missed getting to post information from Peyton's last appointments while we were in Texas. The MRI fell through last Friday. After starving Peyton from midnight until 12 noon the next day we found out they could not do the MRI without him being formally admitted into the children's hospital, put under general anesthesia, and staying overnight for monitoring. They said children with Peyton's condition are at high risk for an adverse reaction to anesthesia called Malignant Hypothermia. They want to be very careful and watch over him afterwards. The normal sedative they give to babies for MRI's is not safe for Peyton. So we will have to have the MRI done during the next trip to Houston. We were not happy about having starved poor Peyton all morning long while they dragged their feet to get this information. They said Shriners did not give them any information on Peyton or his condition - which I find that hard to believe. The hospital admissions dept. had not even called to verify insurance by the time we got there that morning and we had to sit for over an hour just for that. They had been given the information the day before. Sounds to me like the hospital was just flat out unprepared and dropped the ball.
Peyton got his new AFOs and his derotation strap for his leg on Friday too. He tolerates the AFOs really well but not the strap. And he can only handle the wrist splints for so long. We made his knee splint and it works really well too - it stretches the right knee to bend where it's stuck stiff straight.
So anyway - our next trip to Houston will be Sat. Aug. 25 through Thurs. Aug. 30. Continental Airlines is providing us with 2 free tickets for this trip - we have to leave on Sat. because there isn't a flight available for Sun. This is a program they operate for families with medically needy children having to travel out of state for treatment. You can only get 2 tickets each year so we thought we would go ahead and exhaust that before letting Shriners pick up the cost on future trips. If anyone has any questions about this program feel free to email me - it is very easy to qualify and get the tickets. I spent only two days trying to get things lined up - and our tickets are already booked.
We have decided to discontinue Peyton's therapy here at home. The therapists here are learning from us, so why not just do the therapy ourselves? We will have Shriners following along with us for support and we'll be going there frequently for follow up so I think we'll be ok. And I won't have to worry about the insurance issues anymore for the time being. They are great therapists, but they just have a huge lack of knowledge and there's no point in flushing his therapy visits down the toilet like that. We won't find anyone around here with any experience - that's just the way it is. When he gets older we might need to send him back but for now we can handle it. The therapy dept. at Shriners in Houston is fully supportive of this decision. They said there was no point in going either. I am waiting to hear back from them about how often we will need to come there now since we're discontinuing therapy here. The only crimp in the situation that will make us have to travel more often is that his splints need to be adjusted periodically - and/or new ones made. The therapists here at home wouldn't touch his splints for fear of messing them up I think. They just didn't know much about them.
Morgan started school Monday at her new school - she loves it so far. She says her teacher is very nice and she's made friends with another little girl in her class who is also new this year.
We will update again soon - this weekend I am taking the kids to my sister's in Richmond for their cousin's birthday. Chad is staying behind to work on the house - also he has to work Saturday.