Hello all - quick post as I am home for the night and going to try to relax before I go back tomorrow. Taylor ended up sleeping all night (except for being woken up every 4 hours for vitals!). She seemed to feel a little better this morning and said she was hungry. She at 2 bites of pancakes and refused any more. I finally got a Gogurt in her but that was all. She ate another Gogurt at lunch but would not eat anything else.
I talked with one of her doctors this morning and asked for a slight change in her Zofran (nausea medication). During the past 2 rounds it was given every 4 hours around the clock. For some reason this round, it is only give as one large dose, one time/day. I was thinking that maybe it isn't working as well this way because she is so nauseated. So....the Zofran is being changed back to the way it was. I hope this might make a difference and she might possibly eat a little better.
She enjoyed a visit from her good friend Maggie Siegel. Maggie is another leukemia patient that has come into our live....they are an amazing family and have helped us so much. Maggie is done with treatment and doing well. Maggie's mom, Leslie, has been great to me and helps me get through this horrible ordeal!!! I will post a picture of Taylor and Maggie riding in the wagon.
Grandma and Savannah came down and Grandma is staying with Taylor tonight. I enjoyed a couple of hours with Savannah and came home to a huge dose of reality. I signed Taylor up for the Make a Wish program and I received a letter today saying that Taylor has been accepted and will become a Wish Child. While this is great and Taylor will get an amazing wish granted, this is very bittersweet to me. This only reminds me that Taylor has a life threatening illness.....WOW!!! I don't mean this to sound ungrateful, I just never thought I would be participating in Make A Wish for my child. I am pretty sure that Taylor will "wish" for a trip to Disneyland and I am so excited that this might happen. I just "wish" that we were going to Disneyland for "other" reasons. This is just so hard.....
Going to try to catch up on mindless TV....will post again tomorrow night when I get back to PCH.
Quick side note....Toby - I read your post, please stop by the next time you are down visiting Leo....would love to meet you.
Thanks,
Kristen
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Kristen, Sean, Taylor and Savannah,
ReplyDeleteWe continue to have Taylor on a HUGE prayer list at our church, so there are a lot of prayers being sent up from Colorado! The picture of Taylor and her buddy making rounds in the wagon is SO cute! We will continue positive thoughts and many prayers for her and the whole family!
Take good care of each other!
Liz- Takeda, CO
Hi my friend,
ReplyDeleteI'm so glad Tay will get a special wish but it is so bitter sweet, just another reminder that Tay is sick and really needs to get better...and she will!!!
I hope you were able to get some rest and hang w/ Savannah. I also hope the Zofran helps her feel better and gets some much needed food/rest.
All my love,
Jess
Hi Kristen and Taylor,
ReplyDeleteWe have been following how you are doing and we are thinking of you both and your in our prayers daily!! Hang in there Kristen, you are an amazing mommy.... All our love and positive thoughts are being sent your way!
Love,
The Lancasters