Olivia's visit at clinic went very well today. Olivia was so well behaved the entire time and I could tell how much she was enjoying being out of the apartment. I've started to notice this week that Olivia seems to be getting tired of all the one-on-one mommy time. Since we're stuck here in the apartment all day I try and think of fun things for us to do. We bake a lot together. We do a lot of arts and crafts projects. We do a lot of puzzles and read a lot of books. Yesterday I think Olivia got sick of me though, she took her stack of books and walked into her room and then into the closet and shut the door. I asked if she wanted to read books and she said "no mamma, no book to you." She was definitely telling me to back off and give her some space.
Now onto the clinic visit. Olivia's counts look great, she's continuing to make blood and platelets all on her own and we haven't had a blood or platelet infusion in almost 6 weeks. Her skin looks good, there's no sign of Graft vs Host rash. Her appetite is good and she's maintaining her weight. She's talking more and more and her activity level is continuing to improve. She does still have a cough and a runny nose. This has been going on for almost 4 weeks now and they still can't figure out what it is. She's on an antibiotic, today her white blood count was slightly elevated so they are going to do some cultures from a blood sample to see if it's an infection. They also started her on zyrtec to see if it's just allergies. On Friday Olivia will be having a CT scan of her sinuses and chest. The would be doing a CT scan as part of her 100 day tests before we are allowed to go to Ft. Bragg. They are moving this test up a bit because of Olivia's cough and runny nose. She will be going to see an ENT next week and they wanted the ENT to be able to review the CT results prior to seeing Olivia. Everyone continues to be very impressed with Olivia's progress. I still feel like I'm waiting for the other shoe to drop, things have been so bad for so long I'm having a hard time adjusting to things going so well.
There is one aspect of Olivia's outpatient experience that is not going very well....her school. To be honest her school arrangements were not going well while we were still inpatient. I was never able to pin down the teacher to get a set time to work with Olivia. I kept talking to the Child Life specialist and the Social Worker about it but they kept saying that school was just starting and that things were just getting worked out. Now that we've been outpatient Olivia has only seen her teacher a handful of times. I think that there's only one teacher to work with a large number of kids. It is obvious to me that she's not able to balance all of them. We still haven't been able to identify a time that she's going to work with Olivia. According to Olivia's IEP that we just revised she should be meeting with Olivia 3 times a week for direct instruction. These direct instruction periods must be at least 30 minutes long. I'm not comfortable bringing Olivia to the community "schoolroom". I have seen that room and I have concerns about who is responsible for cleaning it between patients and how thoroughly it is cleaned. I really hope to hear something from Olivia's teacher about when she can begin working with Olivia soon! I'm tired of hearing about her other scheduling conflicts. It's her schedule, I don't understand why she can't just finalize a time. We don't have anything else going on. From our perspective we have doctors appointments at 9 am on Monday, Wednesday, and Friday. Anytime other than that, we're free. I know that I should be more understanding but this has been going on for weeks now! Figure it out!
To end on a high note Olivia doesn't have to go back to clinic until next Wednesday! She'll be at the hospital on Friday for her CT scan but we won't have to go to clinic. After next Wednesday we'll be going down to just 2 times a week--Wednesdays and Fridays! I'm hoping that this extra free time will help Olivia's teacher finalize her schedule!
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