I need to list out all the stuff that I’m managing right now. Two reasons: for myself and to tell my parents, who care.
Trying for a family photo when the family came over for my Dad’s 60th birthday last week.
Anna: For privacy sake, I won’t share her mild things here. But on a parenting front, she is social and fashionable and working through the many moral and social and physical developments of an almost 11 year old. She is 10 going on 20 and is navigating the mood swings and “blahs” of a preteen with as much grace as possible.
Jordan: Jordan has been struggling more than ever. We started treating something called PANDAS or PANS, which I don’t understand well yet. I need to continue reading and researching. It’s more challenging and also more important than college. I’m trading emails with the psychiatrist coordinating his care, making trips to the pharmacy, getting blood draws done, administering meds…. but mostly sitting with a frequently distraught child who is self harming and in crisis. It’s exhausting. He’s taking an anti-viral called Amantadine, which is supposedly acting as an anti-inflammatory for his brain. He’s just started on a 30-day course of Amoxicillin, which will hopefully, but not for sure, cause the PANDAS flare to go down so he can feel better. Some of the potential treatment involves extended IV treatment that is often not covered by insurance. That concerns me…. one, because Jordan is likely to yank an IV out, two, because the bill is often around $15K. Surely it is cheaper in a non-USA country. Our medical system’s flaws are centered around $$.
Margaret: Maggie has always had a sensitive stomach, had severe food pickiness, and been small for her age. I took her into the pediatrician again yesterday to try and do a little more digging into how to help her be able to eat more of what she wants when she wants. I brought a list of potential root or umbrella diagnoses in to discuss and between a smart pediatrician and Maggie’s descriptions of what she experiences, we have a few things to try. For probable reflux/heartburn, we’re going to try antacids to see if that helps. If it does, we’ll discuss root causes and long term treatment. For possible H. Pylori overgrowth, we’re doing stool testing. For possible IBS (Irritable Bowel Syndrome), we’re going to get some probiotics. If we don’t find relief with any of these, we’ll go to a GI doctor and scope/biopsy her upper GI areas to look for EOE, ulcers, or…. something else. I’ll have to find my notes. On a personal/parenting note, Maggie expressed frustration with her interpersonal relationships outside of the family and struggled with fears and depression, so we have been seeing a counselor together for a couple months and that has been a really positive input to her and us. She is so incredibly bright and articulate and with a great counselor, we’ve identified and corrected some thought patterns. She’s doing really well in that department now, but I still want to schedule some more appointments to keep the momentum going.
Carolyn: Carolyn is doing really well right now. She’s 5 and learning about normal things kids learn at that age – like effective sneaking and hiding cookies under her blankets. (laughs) She is in danger of being a “glass child” – a child that is not seen, because everything is going well for them. However, with her ability to talk over just about anyone or anything, I am pretty confident that she will remain in view. She loves, LOVES to snuggle and she and Maggie play in extended and elaborate make-believe worlds.
Daniel: Daniel is very stable right now. His health is good, his weight is up, and he is learning language at an incredible pace. He is a bit slower to catch onto those more challenging things, like patience and waiting, melting down rapidly when he thinks his needs will not be met. But that is all as expected. His therapy evaluation appointments (PT, OT, SLP) to pursue state supplementary insurance are behind us, thankfully, but I don’t have all the documentation yet, so I cannot submit it yet. His PT appointments for determining the wheelchair we want to order are still ongoing, but hopefully we’ll have that order placed soon…. and hopefully it will make it through the gamut of insurance rejections and resubmissions before 6 months is up. We will see. At that point, we’ll pay our 15% coinsurance to the tune of over $1K. We are also wanting to get him a stander and then a gait trainer. But this has proved more complex, as his legs are untreated and his feet crooked. So…. how do we want him standing on those feet? Coordination of care emails are being sent by me to his orthopedist in Philidelphia, where we are on the wait list to be treated in the next 12ish months. This equipment will also have a big bill attached, so we need to do it right… also, insurance will only cover one anyway.
Brian and me: This Friday is the anniversary of Brian’s mom dying unexpectedly last year. It’s also the day that we are going to attempt our first date together since before Daniel got home in October. It’s been a grueling last five months. I have a broken toe and am wearing a boot and unable to exercise much. I bought a membership to the YMCA in town (30 minutes away) and Brian and I have been taking turns going there to exercise… the one thing I was given permission to do is swim, so I’ve gone swimming 3-4 times and it felt great. Brian’s blood pressure is up a bit… hopefully that’s just due to life and not because his kidney condition is approaching critical phase.
I had somebody tell me recently that they have a friend who adopted too many times and took on too much and that it had been unwise and their marriage was struggling.
That hurt. And I don’t even quite have the words to express why.
We are doing our best to follow God’s will for our lives. We knew it was going to be hard. And we knew that these decisions were “on us.” But we had hoped that we wouldn’t feel so alone. Those friends who have continued to reach out, those neighbors who have extended practical support…. they are like jewels to us. My parents don’t live nearby but they’ve made continued efforts to reach out a couple times a month to us. I don’t even know what I’m typing any more. I slept next to Jordan last night (mattress on the floor) listening to the same children’s CD over and over and over, because that’s the one that pulls him from his screaming most likely. He cried off and on (even in his sleep) ALL NIGHT last night. I’m tired.
No homeschool today.