Rosie and EJ are flying to Portland July 1st to finish up her testing. If all goes well the next available OR date is July 31st. We hope everything turns out OK. We will forever be indebted to Rosie for this incredible gift of life she is giving Kacie.
Kacie has been holding up pretty good physically but her spirits are down. We will be so glad to have this chapter of our lives over. She scared us pretty bad one night last week. In the middle of the night she somehow ended up in her closet disoriented and screaming. During all this she managed to pull off one of her bags from the dialysis machine and just about yanked her tube out from her abdomen. We had to put her on antibiotics to prevent any infection. They have warned us that an infection in her belly from contamination is VERY painful. Luckily so far she has been OK.
We are working on getting Brandon into see Dr. Pines a Psychiatrist out of St. Als. He may admit him to the St. Als Psyciatrict unit to observe and try some new meds or we might try doing it at home. Most doctors have agreed that Brandon is a complicated and unique case. No one seems to know why he has digressed so much. Whether by his choice or not this maybe his course in life. If the new meds don't work, Scott and I might have the difficult decision of whether or not Brandon would be happier in a home with 24 hour supervision. The doctors have told us that many times kids like this are happier with more structure and the same routine everyday. We already feel like we have been mourning for the loss of our son.
Kacie
6 comments:
We are still praying for you and Rosie and her family as well. Know that we love you. I hope Kacie doesn't have any more scary sleep-walking episodes, either! Thanks for keeping us posted on a regular basis...you know we'll do anything for you.
oh Talbots, know we are thinking of you. hope all goes well for the OR. Tell brandon hi for us and that we love him. you are having to make some very hard choices, pray for the lord's comfort.
I think about your family everyday and wish I could do more to help. We love you guys so much. We miss Brandon, his sweet smile. He was so much fun to be around. I am still hoping they find something to help.
We love you and want you to know that each of you are continually in our thoughts and prayers. We are so very thankful that so far Rosie is a match for Kacie. We love Brandon and like Kendalee said, we hope that they find something to help him.
Wow Tammy you really have alot on your plate. So many big decisions on so many different issues. We are praying for all of you!! Rosie is an amazing person, not many like her out there. WE love and pray that all will go well for her and Kacie! Give Brandon a hug, and when all is said and done, the Lord will guide your path in which way you should go. We love you and think of you often.
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