This morning was a hard morning to wake up, those long days that build into a long week. The end of the week is always hardest, it seems. I work every night this weekend, too, mostly so that I can meet my brother in Kansas City next weekend. But I have the days off, and I am excited to spend some time with the children.
We had an interesting experience today, where Home Health showed up unexpectedly to pick up all of Kyrie’s oxygen equipment – based on orders from the pulm. She has never had a pulmonologist problem, as her lungs are fine, but Medicaid made us go for him to regulate the oxygen. We are glad to have an ENT now and the palliative care team, so we will manage the oxygen with our own equipment when we need to do so. That means we don’t have to go to the pulmonologist anymore, which is very exciting. It is so good to see her tube free more and more, ever so slowly, and we are so grateful!
I really, really hope we can figure out the swallowing and she can keep working at that, and maybe we can get rid of the feeding tube as well, instead of having to get the gtube. She is working on it very hard at school, and we will see what the ENT says about her latest swallow study. She can do it on chocolate milk pretty consistently, and thicker liquids, but I know she can’t live on chocolate milk! Not yet!
Mary, on the other hand, could just live on chocolate if I let her. That girl is ALL GIRL. She is prissy, and starting to like boys already, and preparing for puberty faster than I can let her grow up! She is so sweet, working on being less bossy (as am I), and doing well in school. I am really proud of her!
Kirk is my other easy one, and for the first time the age gap between him and the older two is really showing. He is still my little boy, while Alex is turning quickly into a grown-up kid. Who knew there was such a big different between 7 and 9? It’s a world of difference! Kirk will be 8 in a few days, and baptized next weekend (not tomorrow). He is super excited.
Alex is doing well, except more and more autism moments are showing up. The gap between others and him guessing at what others want or need is growing, and that’s hard for him. He tries so hard, but guess wrong, and then guesses instead of listening, and so it all escalates when he just needs to follow directions. Except the directions have to be very literal and very specific and very concrete, or he misses it and goes back into guessing.
Anber is rocking it. She’s a little punk at school sometimes, being loud and bossy and thinking she can be the Mary of her class, but she is so clever to figure all of that out. Her tantrum days that were so awful are long behind her, and most of her crying fits now are the normal kind that any girl has from time to time. I love seeing her smile and skip around and hearing her sing. We fought hard to get to that space, and I am thrilled that she is happy!
Barrett is about two years behind emotionally, and about a year ahead cognitively. That makes interacting with him tricky, because his head understands more than his little spirit can yet process. He has come a long way from all he has come through, and he is working very hard on some specific behaviors related to expressing and regulating his emotions. His biological mother told me he gets his temper from her, and now I see it in his face when he gets upset.
Late last night Nathan and I held council and discussed our next book, officially. We knew what we had been prompted to write about next, and knew we wanted to use a similar structure as we did in Keeping Kyrie, even though it won’t be the same kind of book at all. Then we identified the narrative arc of what story we will be telling (marriage), and then developed the outline of what we wanted included in that story and how it would fit into the (temple) pattern we wanted to use. I am super excited, and today I was able to get the outline set up into the app that I use for writing the books. Now we are ready to begin! I am so excited!
Mostly, and more than anything, I am grateful for children who are healthy and happy, despite whatever challenges any of us still have or must always endure.
I am also grateful for little things that get us through those challenges and hard days, even like these shiny shoes given to me to help my feet feel better working at the hospitals!