While we are here, Aimee is working on her biggest bubbles.
Today is 6 months since discharge. Wow. I never would have thought we could keep her this long straight at home. I don’t think anyone would have bet on the odds. I would say that overall Aimee is improved compared to 6 months ago. She is comfortable at home generally. We are mostly able to keep her out of pain. She has had multiple really happy, laughing days. We even got a video last week of her laughing while I bagged her. Her ambu bag makes a squeely sound when compressed and it tickled her funny bone.
She hasn’t become any less intense and complex, actually increased really. She is more variable with more difficulty regulating temperature and fluids, but we have very much improved our routine and could do a lot of it half asleep… okay, we do a lot of it half asleep.
Speaking of being weary, thank you all for sharing your contacts in nursing and caregiving. At this point we have not been able to actually connect with more help, but we do have one potential nurse and one family member going through the hiring process to be a caregiver for 6 months this Fall/Winter. Neither would be night help, but they are potentials for more day help coming over the next couple months. The restorative summer that we had hoped for did not happen though.
In wonderful news, the younger kids have been able to have some summer fun. A couple of family members have been helping us take them out of the house for adventures. A neighbor gave us a wonderful playset. I can see them out there playing while also being with Aimee! Last Friday, a friend helped me take them on a hike while Ed was home. Next week we look forward to our much anticipated annual family camp. I’m grateful that they have had positive memories and fun this summer. They deserve the best, sweetest childhood.
On the homestead, we brought new piggies home and are gearing up for the birth of a new calf. We are looking forward to the great enjoyment of having a cow in milk again soon. No garden this year and many things are in disrepair. We require frequent reminders that letting go of organization, normalcy, and order for this difficult season, does not mean that we will never be able to have them again. Isn’t it difficult to have grace for yourself? Doing our best right now does not mean what it did 2 years ago. And it will change again.
