I got another one of those hot baths! This self-care thing just might work! Good job, self-therapist.
We planned to take today off. By that, I mean take the day off from running around to eight thousand children appointments, and just stay home working together on the house.
I can unpack faster, you know, if it were just me.
And I don’t just mean because there is more stuff here with eight people.
I mean because I could push through and get it done, without stopping to eat or drink water or go to the bathroom, very nearly, and even sleep would be optional.
Here, though, the mornings are focused on study before the children wake, getting the children ready and safely delivered to school, and then we have a bit of time to work on the house before it’s time to bring them home again. Baths have to start as soon as we walk in the door, while everyone else takes their turn playing outside once chores are completed while I cook supper.
Everyone also has violin, piano, homework, “babysit” Kyrie time, and one-on-one art or music projects with Papa. They also take turns helping me cook dinner. They love to cook, all of them!
Everyone is in pajamas by the time we sit down to supper, and we do scriptures right after that. So then everyone brushes their teeth while we take turns with bedtime prayers and bathroom trips. We almost have our new routine down! Whew!
We also are getting more and more settled. We are not finished unpacking yet, and of course Nathan and I have left our room for last so it is a disaster. But we do have some special corners settled, like where my cello and Nathan’s violin goes:
We also finally uncovered our pew with the quilt Jenn Perkins gave me for winning the ovarian cancer prize, so that I can practice when I am able and the children know we still have our family prayer bench ready. I’m also using it for laying out the next morning’s school clothes, so that once they get their turn in the bathroom, they can grab their clothes and find a place to change clothes privately instead of everyone waiting to change in their room or the bathroom.
We needed air today. That baby got called home from school for being the wrong color and trying to catch her breath, and she was very glad to see me when I picked her up. But she was so mad to get stickers back on her face! She settled as soon as I left them alone, though, and got her air going. Then she slept until late afternoon and now is asleep again.
I think she is growing again, for one thing, and she has always required oxygen to grow.
We are also watching her closely to see if she develops any sickness or presents any new symptoms since she is being exposed to other children for the first time at school.
There is always the possibility that we are back in the cycle of her outgrowing her airway, but we hope it is not that.
This summer she has had several good weeks and then a hard three or four days, and then several good weeks. It seems to be a pattern, I think. So I am expecting her to be better by tomorrow night if it isn’t a new illness coming out, so hopefully she will feel better soon. Regardless, we have a Pulmonologist appointment tomorrow, though I am anxious to see how that goes since last time was pretty scary in the hospital. We haven’t seen them since the last time they said she was admitted to be trached and then wasn’t, so we will see what happens. I hate that it feels “ugly” between us because they are really some of the nicest doctors we have ever encountered. They aren’t bad. It’s just hard when they think we are crazy and we feel unheard, but we share a mutual love for Kyrie and wanting to do well for her. We will be excited to go in and tell them how well she has been doing – until this weekend.
But also, winter is coming, and it scares me. She has thrived in the sun and fresh air. The cold and wet air that will come, with all the illnesses from the other children, can be so dangerous for her. We will get her back on RSV shots and we may have to pull the kids out again, but hopefully she can hang in there. That’s another reason we wanted her exposed to other children now, to get some germs while she is strong and able to recover, to fortify her against the winter a little.
I was talking with an advocate friend who was mentioning seizures associated with apnea that intersect with obstructive apnea. She said these are really hard to catch on the EEG, and that it may be part of what happens with Kyrie in some of these episodes where she just stops breathing and doesn’t respond, even though we have tried several times to catch seizures on the EEG and none have shown up. Regardless, we need more understanding of PRS babies and the (especially long-term) effects of ongoing hypoxia and anoxic brain injury – which counts as TBI. I didn’t even know that! I need to talk with my friend Dr. Evanson about this more, but have spent the evening reading journals and making calls to neuro and looking back at Kyrie’s MRIs and other records. Goodness.
Also, the breathing part of her brain is where her stroke happened, so that also intersects in the same place and can’t be helpful.
In the meantime, life is more simple that mindblowing. Singing hymns with the children. Reading scriptures with Nathan. Kissing babies goodnight. And kissing them again. And kissing them again. And yes, one more hug. And then just one more. And then just one more. And then finally, my hot bath, and a little writing so that my own voice can breathe again, and a little processing of what we can do to help Kyrie who so badly wants to grow so very fast but is still so tiny.
Anber and Barrett, though, are already quite grown up since going to Pre-K, with no more baby fits at all, and not even one screaming incidence in two weeks. WHAT? That is equally mindblowing as all the research on Kyrie. They amaze me, those two.
Kirk, Alex, and Mary loved their first day of second grade, were thrilled to see each other on the playground, and couldn’t wait to chatter (nonstop) about all the excitement when we picked them up from school. I am so happy that they love school, and so proud of them for the hard work of adjusting to a new school. They are brave and good, those kids.