9.25.18 The Way Forward

Dear friends, I apologize for my lack of communication over this past few months. It has been difficult to process what the way forward is for Aimee now. She has had a busy summer of clinic visits and exams. 

She had a sedated hearing exam, which has resulted in a set of new hearing aids being ordered. I am excited about these, as they will be blue tooth enabled. 

She has had numerous blood tests, some to show that her carbon dioxide levels have increased much too high. We are attempting some changes in the amount of breaths that her bipap makes her take per minute during sleep, an increase from 18 to 22 breathes. The fact is that all day long she breathes too shallow and does not expel enough carbon dioxide, but we hope to have enough of an improvement during sleep to improve her blood levels to a safe amount. If this is successful, we hope that we can leave the pressure settings alone. 

She has continued to have low iron levels. She has been receiving supplementation for a couple months in the hopes that her energy levels would increase. No improvement noted. 

She has started a medication to allow her stomach to relax and expand with the goal of being able to clamp the farrell bag (stomach drain). So far she is tolerating it being clamped some days for an hour, which is progress. 

She has had multiple rod expansions for her spine, which have gone very well. 

She has started school again, but we are strongly considering pulling her out. She just does not have the energy to stay awake or alert in class. She no longer seems to enjoy being there, so it is not worth the risk of illness and the great amount of paperwork, meetings, ect that it takes to keep her in school. At this point, I’m not sure if I will just include her in our own homeschool activities or if I will pursue home based public school. 

We met yesterday with her neurologist. There is concern that her lack of alertness is due to underlying seizure activity. We had attempted a dose increase earlier in the summer, but it did not affect energy, though we noticed less events. We agreed to have a short EEG performed in a couple weeks to see if we are missing seizures.

Overall, Aimee does have alert, engaged times, but she has them much less often. Generally she is either sleeping or disinterestedly staring. I have so many questions and am so concerned about her lack of participation in life now. Please pray that Ed and I would be given wisdom. I feel that Aimee is hiding away, but wether it is due to pain, seizures, energy levels, fear, coping... Jesus, help us to love Aimee well. 

-We got to see our favorite NP while inpatient earlier this month-

-Aimee’s first day of 4th grade-