Update from Kristin: March 31st, 2008

Taylor has now been home for five nights. It has been a bit of a roller coaster for all of us. The first night home she was in a great mood and ecstatic to be here. The next day she became very sad. It seemed like she had just been so excited to get home and have everything be normal again, but it isn't normal and it isn't going to be for a long time. She spent a great deal of the weekend with her head buried in her pillow. It was hard to tell if she just wasn't feeling well or was really depressed.

She is still battling pain in her head and throws up about once or twice a day. The mucous situation has still been pretty severe. We had the foresight to have a mechanical suction machine brought in and if I give her $5, she will use it. It's that easy! We aren't certain why she has been throwing up. It isn't all bad because it brings out a lot of the mucous which plagues her breathing and speech, but I am starting to suspect that it is the food. She needs to consume six cans of the formula a day to reach her calorie requirement. We aren't quite there yet, especially when you consider that some of it doesn't stay down. We go back and forth between thinking we should slow down on the food or just pump it all in with the hopes that some of it sticks! I think that she has a fragile stomach and that much formula is just a little rough of her tummy.

Keith was brave enough to take her to Target for a few hours yesterday to pick up a few things. The muscles in her legs and her stamina are gone since she has been in a hospital bed for about two months. The outing was good for her and she seemed to enjoy it even though it was tiring. And yesterday afternoon she was in great spirits. She was out of bed for most of the afternoon, even though she was on the couch for the majority of the time. For the first time in two months, she went to bed at bedtime without her movie machine running and it almost seemed like normal. Unfortunately, we didn't have the same luck with Charlie who got out of bed about five times after we put him to bed.

We are all so happy to have Taylor home even with its ups and downs.The nights are long for mom and dad (mom, really) as Taylor requires pain medication at least once a night - not because she is awake and asking, but because we don't want her to wake in the morning with withdrawals. We also have to bring the food pump in and out in our effort to reach our six can goal. She sleeps through most of that, so it bothers us more than her, at least!

We return to the clinic at the hospital tomorrow for a half hour appointment so they can check her and determine if she is ready for chemo at the end of the week :( Then the entire cycle starts again! Hopefully the next week will be a happy comfortable one filled with healing. Her mouth does seem to be improving a bit and it isn't as bloody as before, so the news is not all bad!


Anonymous said...

Hope the positives continue to outweigh the negatives! We think about you every day and I know some of our prayers and best wishes reach you. As you already know, if there is anything we can do to help in ant way we are here for you!! Loads of love, Weta and Allen