Journal entry by Claire Bear Howard —
It’s been a long time since our last update, but mostly because things have been going very well! Claire is now eating 100% by mouth and drinking about 50% of fluids. So, we hope this continues until she’s eating and drinking 100% by mouth and we can take the gtube out! She is asking for food and always wants what her toddler friends are eating. Haha! She has gained about a pound since last month and her hair is really coming in. She hasn’t had a relapse of her Cdiff since stopping her antibiotics in beginning of March. Fingers crossed.
Claire has been doing really well with the numbers from her blood work, meaning her immune system is doing great from the BMT. Her doctors even said it was time to get her port out. After the July appointment (1 year anniversary), she will do blood work every 3 months instead of monthly.
Around the same time, her doctors said it’s time for the pediatric surgeon to fix some skin tags/anatomy on her private area. It really is uncomfortable for her and difficult to clean after going to the bathroom, so hopefully this surgery will help with both of those. Lucky for us, she can have the port removal and the “anoplasty” at the same time, so we do t have to go under anesthesia twice! Claire just had her surgeries this morning and all went very well! She doesn’t seem to be in any discomfort yet, but time will tell. We are driving back home now, and she’s acting silly and drunk and emotional. Lightweight 😂.
Claire is super excited to be able to have play dates, go to soccer, go to music class, and will be starting preschool in the fall! She will get to go to the beach this summer, for the first time. She won’t stop talking about it.
We’ll update in a few more weeks after some surgery healing and when we are closer to her year anniversary!