Thursday, January 5, 2012

Day 8

Another day down. We had a visit with Dr. Haight, who was the oncologist whom we first met on this transplant journey. She has been in the clinic the last few weeks but popped in to say hello, which I enjoyed.. She has a calm and realistically optimistic manner that I can appreciate and she was very happy to see how well Piper is doing. Many of the concerns they have for a child beginning transplant are not apparent in Piper..not that we are by any means on the way to recovery yet but as she said, each day we can get by with Piper doing well is a day closer to engraftment and that lovely road to healing.

And today was a good day. Sleep continues to be a struggle for less than 4 times last night I was up with her which is not uncommon but for some reason Piper is insistent that we stand and hold her....and that is exhausting. I worked today on other options to help her continue to feel secure and to allow Chad and I to still sleep a little. So far she is enjoying the whole " sleeping on mommy's chest like an infant" position, which is better than the alternative. We also elected to have Benadryl given to her prior to bedtime in an effort to get a good, restful night sleep for her. We shall see tomorrow.

After a slow and sleepy morning Piper perked up considerably and even chose to get out of bed. This is the first time in 5 days that her feet have touched the ground. And she did a little walking around and a lot of playing with her play kitchen and dolls while standing. While she still refuses anything by mouth to eat or drink she willingly takes her oral meds. No fevers. No counts. It was apparent that Piper needed a blood transfusion when she had not one, but three black out episodes before 2:00 pm. For some reason whenever Pipers hemoglobin gets below 9.5 or do, she struggles to catch her breathe when crying, resulting in fainting. This is frightening of course, but easily remedied by her transfusion. Score one for me being " an attentive parent" according to Dr. Chang, although it was actually a nurse at Scottish Rite who found the connection between low hemoglobin and fainting spells. ...many thanks to her indeed!

Both my mom and dad came to visit today and I am ever so glad to have them walking right along with my family as support. I cannot fathom doing this without their selfless help and prayers. And not only them, but each of you who read, pray, mail us notes, visit, hug, send meals and love on the four of us. It means the world to me even though I am sinfully bad at thank you notes...that and less coca-cola are my two New Years resolutions so perhaps that will improve. So a million thanks even when I forget to say it.


  1. I don't know why I sometimes can't get it to leave my comment on your blog - but I am trying again today. We are checking the blog everyday, sometimes multiple times a day to keep up with sweet Piper and all of you. You continue to be in our thoughts and prayers. We are so excited that she wanted to get up and play yesterday! We will especially pray for sleep for all of you, and of course, we'll continue praying for perfect engrafting and healing!! We love you!

  2. Love you too, Sus ;). Many many prayers today and everyday!

  3. So glad to hear Piper is getting up and playing. Hopefully she (and you) will get a better nights sleep with the benedryl. Thinking and praying for ya'll always!

  4. you are such a lovely mother, wife and friend. I love you dearest. You will make it through this! Behold what manner of love the Father has given unto us... That we may be called the children of God.

    xoxoxo, and 100x that many