What's next for Kayli? (& us)

As you may have read earlier Kayli came home today. She was so glad to be home, one of the first things she did was take a shower. She hung around the house this afternoon and then had her first visitors here at home. Tonight she is in her own bed, and hopefully will get some good rest.

The next few weeks will be a tough adjustment for Kayli (and us). She is on a pretty strict medicine regime, has a busy doctor appointment schedule, and has alot of social limitations she has to adhere to. The only physical limitations for now is she cannot lift or pickup anything over 15 lbs for the next few weeks and no running. Everything else is at her comfort level. Of course no sports or intense dancing for awhile. But as far as exercising, going up and down stairs, all other activities are as she can tolerate. She may be able to go back to softball as early as next year, but this will totally be up to her. Marching band will be a go by the time next marching season comes around. Her liver coordinator, Mikita did say it might be a few weeks before she can play her saxophone again, will just take her time to get used to blowing strong, solid air through the horn again, not really a physical limitation.

Social limitations will be the hardest for Kayli. She does need to be careful for the next few weeks, (with it being flu season), because of her suppressed immune system, she is more likely to catch illnesses. So for the next few weeks she will need to wear a mask when in crowded areas or around sick people, at the mall, wal-mart, etc. She also cannot clean up after animals (I know that breaks her heart), but she can also not love on her sweet boy kitty Lancelot for awhile. Eventually she will be able to, but for the time being he can't sleep with her, which is one of the main reasons she was ready to come home. (She cannot lift him anyways as he is over the 15lb weight limit LOL) I laugh but it's kind of sad for her as she loves her kitty alot. Kayli will be able to participate in CYT, since a large portion of the kids involved are home schooled, but she will not be able to go back to school for awhile. The doctors have written orders for Kayli to stay on the Homebound program through school, and we will meet with the school and homebound coordinator again on Thursday to go over things.  She may be allowed to go back to school as early as March 1st or possibly April 1st depending on her progress. She said her goal is March 1st, and the social aspect of not going to school is hurting her worse than anything at this point. She hasn't been in school since the end of October, and that more than anything I think as been the hardest for her. It could really play a big part in her recovery. We talked to her today about the possibility of repeating the 9th grade if the Homebound teachers cannot get her caught up, and she almost burst into tears. I only pray that doesn't happen.

Her medications and doctors visits are pretty crazy right now. We will be traveling to the medical center twice a week for several months, every Tuesday and Thursday at 8am, and Kayli will have labs drawn each time. After 6 months that may decrease. The doctor said eventually, over the next few months/years, they will wean her down to 2 probably 3 medications. But for right now there is about 8 different meds she is taking. The two main medications she HAS to take, the anti-rejection drugs, are not fully covered by our insurance, therefore our co-pay is $250 for a month supply...each. The rest of the meds are going to run about $100 per month total...so while $7200 per year is not quite as bad as the originally quoted $10K, it still puts quite a damper on the budget, a big one. Alot of changes will need to be made. I will be going back to work tomorrow, which is kind of hard as a mother- I want to be able to remain home and care for my child...but I do not have benefits with my job at this time and have already missed alot of work. Mark does however, so he will be filing for FMLA, and he will remain home with Kayli as long as he can...until he exhausts his vacation and sick time which he has a total of about 6 days worth of sick time and 22 days of vacation, and will get us through the first month. After that, we may only have a couple of weeks gap until she goes back to school, as long as she is allowed to go back to school March 1st as suggested. However, if an illness occurs, we're kind of stuck and the also an adult has to be here when the Homebound teachers are here.

All I can say is, at this point...we are just grateful for the precious gift Kayli has been given, and somehow, someway the rest will work itself out. We have faith that the Lord will continue to Bless us, protect us, and guide us through this. Please just continue to pray for successful healing for Kayli, and strength for our family.

I think she is ready to go home... :)

FYI- she did accomplish both of these goals today!

While she had many wonderful nurses while at Children's Memorial Hermann, Heidi was by far her favorite. (Heidi was also the nurse that played hangman with her last week)

In tha car...GOING HOME! YAY!

Her first visitors at home, Kayli's friends Erin & Paige and their parents brought an awesome meal of PIZZA & hot wings!! YUM!!! We ate, watched American Idol, and looked pictures from my Senior year of High School so I could show the girls what a Sadie Hawkins dance was. :)

Kayli's "pharmacy". There are pills in every box except tonights bedtime, and there are at least 12 pills in both the yellow and purple boxes...the 3 bottles to the right are additional meds that are "as needed".