7 months to go, but who is counting (that reads like an announcement we definitely don't have)

I don't know if you ever get used to the weight on your shoulders. Am I the only one who feels it? It's like even when your days are sailing there is this thing nudging you that something is wrong. And you can't put your finger on it until one day it hits you: it is everything. Mya is sleeping again, only this time there was nothing that changed that we can blame. And she is not breathing very well, like when she is sitting up straight she is obstructing even at her healthiest. And there is something that alarms at 4am every morning that requires intervention and what happens that day I forget to turn the alarm on? And we have to decide whether we will put her through a very painful hip surgery in a few months. Every part of me is screaming no but every doctor is screaming yes and how do we make that call?  And people keep telling us to start thinking about when we will say enough, like quality of life isn't this fluid thing that means we may see laughs again next month. They don't realize that even at her sleepiest she still settles into my shoulder when I hold her every night. I feel the weight, but then also the settling into my shoulder. We have passed her our cold and so we busted out oxygen and suction this weekend and that darn nebulizer that I had the gall to put away last week. But then when I went to adjust her nasal prongs last night that little stinker smiled at me. We went to gymnastics class today on 3 liters of oxygen and maxed out our home settings by mid-day but she doesn't have me nervous yet. She just has me adjusting the weight. Let's ride this one out at home. Please.

We have had so much going on over the last month that I feel like I should write it down. Mya received her new wheelchair. She got a custom back that they carved out (like literally with a turkey carver) to fit her boney spine. This allows her to sit back into the cushion a bit instead of curling over all the time. For the most part I have been happy with the fit. They are ordering a new headrest for her to try to see if we can get her head in a position to help prevent her obstruction. The chair is also extremely heavy and awkward so we will need to find a solution for our van. I am getting a few quotes for lift arms that would assist with loading it in the back and hopefully will be able to secure funding. The wheelbase is also really short and so the porch steps into our house are a bit more difficult to handle. We are starting to discuss adding a ramp into one of our front entrances, most likely in the garage. We also ordered her a bedroom door (she lives in what most would call the office), so hopefully soon she will have a bit more privacy and we will be able to have a bit more quiet in the living room while her vest treatments and oxygen are running. Switching children, Ella was just diagnosed with some food allergies and so we are working wheat, eggs and milk out of her diet. And those are really convenient things to work out of the diet of a 4-year-old (they aren't). And last but not least I have 3 children registered to start Kindergarten in the Fall and so in precisely 7 months I will have some extra free-time to fill. Woot