A for effort

We made it to church for approximately 27 minutes yesterday. And that was a win, actually. A few weeks back we got two people buckled into car seats before we called it quits. We just really like to get dressed and act like we are leaving the house. We were running a little late yesterday morning. What family with 3 young kids hasn't been there, what with overdue baths and too many shoe choices and children who don't wake up for breathing treatments? So we left the suction in the car, bypassed Sunday School and slid into our pew as they were finishing the first songs. We are in the stage of parenting where they shouldn't need snacks or purse toys to make it through such an event but I have yet to convince them of such and so when we bypass Sunday School I am admittedly unprepared to give in to snacks and purse toys. And so it was going a little like that when Mya woke up enough to finally try and clear the mucus plug and so shortly after the offering (at least they got our money) we 'quietly' filed back out of the pew while I ran through the snow to the car for the foreshadowed suction machine to try and avoid respiratory crisis. And then Bernie 'got it'...the mucus...but Mya looked miserable and we threw in the towel. Next week the maniacs are going to Sunday School and we really will bring suction. And snacks. And probably some purse toys.

I am starting to remember my biggest issue with winter, or Fall I guess. It's not the layers of coats and gloves, though that is already getting old and it is only November. It is the daily decision of whether I will put this child on the bus or take her out of the house and constantly revising the plan for the day. We have missed a day of school each of the last 3 weeks due to congestion that she has a hard time clearing in the morning, or like this morning, random irritability that could be anything. And because we are in another sleeping phase, I usually put her on the bus asleep and basically hold my phone in my hand the rest of the morning waiting for the call. She sounds clear when she is out cold and so sometimes it is hard to tell how she is really doing. Thankfully we have avoided anything serious enough to require an ER visit, though last week we had a little scare that could have landed us downtown. The palliative care team wants us to add pulmonology to our list of specialists to have someone to call when we are on the fence about a possible admission to troubleshoot and treat from home. We will probably end up setting something up in the near future, if we can get her back to baseline.

We are blaming the sleeping on her seizure meds but until she is healthy we don't like to make changes there. And it takes so long for her to get healthy that we feel a little bit trapped in this cycle. I hate that she is missing so much school and never fully alert. I hate that she spends so much of the colder months just not feeling that great. It is just so hard to know what combination of changes could give her the most relief. But we are trying, and she is an amazing trooper.