One Year Anniversary

It is hard to believe that this next week is the one year anniversary of Taylor’s illness. It is really hard to put into words how hard of a year it has been. As a parent, there is nothing harder to live through, as to see your child suffer. I really don’t know how Taylor does it 24/7. He has done so well and Ken and I are so proud of him.

Two weeks ago Taylor went back to see Dr. Kelly (the pain doctor). Dr. Kelly doubled up on a few of Taylor’s medications. Dr. Kelly also, did a blood test to make sure Taylor’s liver is handling all the medication that he is on (we don’t have test results yet). Dr. Kelly scheduled Taylor next appointment Dec. 8, to start the Botox injections in the muscles of Taylor’s stomach.

The last few week have been particularly hard, Taylor’s pain level has came down a little. His pain fluxgates from a 6, 7 to an 8, mostly it has stayed around a 7. Although his pain decreases is good, Taylor has had times where his pain has shot up to a 9, 10 for unknown reasons. Last Friday, Taylor had a pain episode so bad during the day that I told him I was just going to take him in to the hospital. Taylor hates the hospital and said he would not go, so I said, I was calling Dr. Kelly. Dr. Kelly called Taylor in some Diazepam (Valium) to help calm his stomach muscles down. Diazepam (Valium) is a medication that Taylor has been on before that did not seem to work. But thank God this time with a higher dosage it has seems to help a little in the last few days. There has even been a short time that Taylor’s pain went down to a 5. He has not had a pain level at a 5 since he was in the hospital in March, where he was on IV pain medications. Taylor was so funny and said after he experienced some relief from the 7/8 pain level and I quote “Valium is my best friend”.

To everyone that reads this update, would you please make special effort to pray for Taylor on December 8. Dr. Kelly has high hopes that the Botox will help, we know that the real healing will come from God.

Thank you for your thoughts and prays.
Rita Bryan