December 4th

Has been a litte bit since I updated, but things are moving at a slower pace now...which is GOOD. :)

We met with Kayli's teachers, school administrators, and the Homebound school coordinator on Wednesday. We got very good information but it looks as though Kayli will have to work pretty hard to get caught up, but we kind of knew that. The homebound teacher will come to the house 2 days a week for 5 hours (total) and a Spanish II teacher will come 1 day a week for 2. She will have to work over the holiday break to get caught up and stay caught up. We originally thought she would return to school after the holiday break, but the school thought it best that she returns when the 2nd semester starts on January 19th. This way she will not return to be pushed into final exams, but she will be administered her final exams by the homebound teacher. 
 The liver doctor put in standing orders so that we can get Kayli's labs drawn at Memorial Hermann outpatient services here in The Woodlands. This way we can get labs drawn a couple of days BEFORE her appointments in the med center so when we go for her appointment they already have some lab results to go over with us. We did that this week and it worked out GREAT. 
 Today's visit was good. Kayli's lab results, bloodwork numbers, are looking better overall. She is still no where near normal, but looking better. Her platelets are still extremely low, but her clotting factors are better. All other blood cell counts looking much better. Her liver function numbers are the same, stabilized which is good, though her liver enzymes are down slightly which is great! Her bilirubin has gone up though, which is not good- and her ammonia levels are still fluctuating alot, but they added in an additional medication to help with both of these things. This will also help her sleep better at night as she has been pretty restless lately. One of the transplant doctors came and visited with us today. We had a transplant question and Dr Rhoades paged him and had him come right over from the hospital and talk to us, it was really nice and he clarified several things for us that we still had questions about. We had not met him before, but he knew exactly who we were and knew alot about Kayli's case. He said they are still estimating a 3-6 month wait for a liver. I think I will put on my Christmas wish list I would like a liver for Kayli the beginning of June...HA HA- school will be out and she can spend the summer recovering and be ready to start her Sophomore year on time!

She will not have a doctors appointment this week or labs drawn which she is very excited about, and for the time being as long as she continues to progress we will continue with biweekly appointments instead of weekly. As for Kayli, she is feeling great, and she feels pretty normal though she still tires easily sometimes.  She is very excited about and has started counting down the days til her 15th birthday- afterall we have MUCH to celebrate when December 20th rolls around and I know she is looking forward to it.

***Blood donations- I will soon have information regarding a blood drive in Kayli's name! If you have been donating and would like to rest up your arms and veins and blood cells...it is to be held January 2nd. I will give more information as it comes available to me. As you know, during both of Kayli's hospital stays she had many, many blood transfusions. At a time when she needed platelets and whole blood so that a life-saving procedure could be performed, we heard the dreaded words; "the hospital blood bank is out, and the local banks are all running too low to spare any- the procedure cannot be performed until we can give her more and have extra on hand." Though Kayli is not in need of transfusions at this time, she will at time of transplant...and she is at a high risk of bleeding and hearing that the blood bank does not have what she needs is something we do not ever want to go through again. MORE IMPORTANTLY, we as a family do not want ANYONE else's loved ones to ever have to hear those words, ever. Nobody should ever have to go through that. If we can do our part to ensure the local blood banks are adequately supplied, then we feel that God has truly Blessed our journey and struggles and saw a way for us to triumph against them, and this mission was given specifically to Kayli and our family because we have the army needed to fight the battle. This thanks we owe to all of you, our beloved and devoted Army.