Thursday, October 9, 2008

Busy days!!!

Sorry I haven't posted in a while....life has been CRAZY!!!!! Makenzie is doing great! She has done wonderful in therapy and her feeding has been going well! Orally she is still about the same but we are now .5 oz away from being half way fed in her stomach instead of her intestine! That is really great! To me it means her body is healing and we are on our way to more brain healing! On Sat. we will be moving to 4 oz, 3 times a day in 15 mins!!!! I have decided that it would be a great Christmas present to meet our goal at the begining of Dec! It has been really hard for me to take this slow and not up the feed earlier! I want her to succeed and I think that her GI doctor is right in taking it this slow! She has never done this well!!! Thank you Jesus!!!! I can't wait to be done with the night feeds!!! Getting up to switch her formula to water at 2 am every night is getting old..... fast!!!!

I spoke with a nurse at the Hospital yesterday and I think I am going to set up an appointment to try a dose of Baclophen (muscle relaxant) into her spine. Makenzie is tight. Not half as tight as she was but I want to be able to know if this will help. I will not give this med orally because it makes her dopey!!! Given into the spine it has a ton less side effects. It would require a surgery and pump into her stomach area. If we did this there would be no more HBOT. I am just thinking about this and without the test dose I don't know if this treatment wis even on the table! The test will let us now if it is even something to think about. I spoke with a parent whose son had a baclophen pump placed 4 years ago and it has been amazing for him. He went from no movement to reaching out for a toy within 45 min of the test dose being given! I at least want to know! Please pray for this decision! If she has good results that will bring on a whole new monster!!! Please pray for Gods leading!!!! Thank You!!!!

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