Paul's Update - 10/17/06

Dear Friends:

I was not feeling well on Monday so I apologize for not updating you yesterday. Not much has changed. Paul is now taking the new medicine Keppra to help the anti-seizure drug (Trileptol) work better. It is making him a bit dizzy and unstable which makes it hard for him to get his balance and walk without problems. He still wants to get up and do things but Dad has to assist him a bit more than he was doing. His right side still seems to be the only thing that was affected by the seizures last week. He can use his right side ... just not as good as before. The new medicine also causes him to fall asleep at night pretty early ... within about 15 minutes of taking it which is around 9:30pm. He is sleeping soundly all night. Tabby said it also makes him snore quite a bit ... sigh! The doctor called today and reported that the Trileptol (anti-seizure) level is still not high enough. He is increasing the Trileptol again and now he is going to remove one pill a day of the Trazadone (which is for depression). We expect this will make him more drowsy. After seven days he will go back to the doctor's office and have blood drawn again. If the Trileptol level is high enough at that time ... we can start the reduction of the Dilantin again. I don't know about you ... but this is hard to keep up with!! Anyway ... if it works ... it will be worth the work! Tabby also talked to the periodontist today about the gum surgery. He said he has been trying to get an anesthesiologist to work on Paul for the surgery. Everyone he has talked to is concerned about working on Paul in the dentist office. We may have to consider taking him to Children's Hospital to get someone willing to work on him. Monday a representative from the company that built Paul's wheelchair came out to the house. Tabby had asked them to come and review Paul's needs again since the chair that we have is really not useful for Paul. It is too big and is really designed for someone who is an invalid. It doesn't fit well through doorways and it doesn't fold up to make it easy to take with us when we go out. It appears that Tabby will have to work with the insurance company and Paul's doctor to see if a new chair could be ordered. What a shame ... all the money put into that chair and it doesn't meet our needs!! Hopefully something can be worked out. Tabby had to do battle with the health insurance company again today. When she went to fill Paul's prescriptions yesterday they told her that he had been cancelled. She has figured out that you go directly to a manager at the insurance agency to get anything fixed. She talked to that person today and it should be getting fixed. It is not a wonder that people get so frustrated with the system!! Overall Paul is doing OK. He is being stubborn about working with Tabby to do some things that we know he can do ... he is still a strong willed child!! LOL Thanks for continuing to pray!

Love & Hugs, Lynne & Carl