Happy Labor Day
Sorry for the delay in an update. John has been under the weather so that leaves me a frantic mess! Kimbell had an amazing birthday. She was able to get a pass from the hospital to attend her tea party at the hotel for a few hours. I will never be able to thank the staff at the Sheraton enough for everything they have done for Kimbell and this was no exception. It still seems so surreal it was so amazing. More than we could have ever dreamt of. Many friends also came to the rescue with Tsum Tsums, thank you soooo much. Those things have brought her so much joy and she stacks them, restacks them and stacks them again. Meanwhile the three of us have thoroughly enjoyed playing Disney Infinity. I’m sure if any gamers saw us playing they would be laughing hysterically at us but we are having fun!
Kimbell was discharged from the hospital and continued oral antibiotics at the hotel. The good news is that she was discharged, the bad news is that the infection was so bad it will take another week to two weeks for her systems to all go back to post BMT status, which isn’t even normal status 🙁 Needless to say we feel like we live at clinic, she is still throwing up multiple times a day and there is no telling how long that will go on, she is still getting IV fluids daily, and taking a zillion pills so really not much has changed. The only new news is her feet really hurt her. Unfortunately they do not know why so now Kimbell is using a wheelchair more often than not. On Friday Kimbell had her 60 day post BMT visit with Dr. Tolar. I can’t believe it has been 60 days already. It was quite an uneventful visit, other than Kimbell grilling him on when she can do things. Lots and lots of labs were taken to see how her new bone marrow is performing. Some of these tests will be back this week while some will take up to two weeks to get back 🙁
I hope everyone is having an amazing Labor Day weekend. Ours has consisted of well nothing, literally zip. Kimbell still can’t be around people so it severely limits what she can and can’t do. If we want to take her out it has to be during the week. Speaking of grandma and epa took K to the fair. She had the time of her life with many guardian angels watching over her. It’s funny, she didn’t eat the whole day thus minimizing the chances of her throwing up – smart kid. Then she suckered grandma and epa into all the things John and I would have been petrified to let her do and last but not least she played games where her angels consistently came through to the point that we will need a uhaul to get us home due to the large size of her new stuffed animals!! We are so blessed.
Hug your family tight. In this journey we are constantly reminded of how fragile life truly is. One minute you are making progress and the next you are stepping back a month, literally. Kimbell showed us that with this last infection. Then yesterday I read on a friend’s blog about this little girl I had seen around the hospital. She had survived on a Berlin heart longer than anyone else in the US while waiting for her new heart. Unfortunately for her, her family and all those that knew her the Berlin heart failed and her own heart was too weak to pick up the slack from the equipment failure. She earned her angel wings way too early.
Happy September and hopefully only 6 more weeks until we come home!
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Continuing to pray!
always on my mind, hugs