Due to Sarah’s notably decreased appetite, we stopped the Prilosec (for acid reflux) and Allegra (for seasonal allergies) for Sarah (with the blessing of the pediatrician even though she didn’t think that was the issue). We reduced the Oxcarbazepine (for seizures; under the guidance of her neurologist to slowly wean off of it). We stopped the Miralax (for constipation) because it seemed to exacerbate some of the issues of the present moment. Sarah’s appetite maybe increased a slight bit, but it was hard to tell at the beginning of the week. The bigger change was to what foods I offered and when, as I will explain soon.
On Sunday we learned a lesson that we probably could have learned in the past but I refused to really take it in because I so wanted Sarah to be able to enjoy going to a show downtown. Nope. We went to Frozen and as soon as we arrived Sarah was protesting and saying it was scary. This was before the show even started. So part way through the first act, Carl took her out and they had a better time exploring the venue aside from the performance space. After intermission Sarah was still unhappy being there in general so Carl headed out to take her home. Instead they found a large art installation that she enjoyed playing in and they had quiet time in the sun until Amy and I were done seeing the whole performance, which was wonderful! Amy was thrilled with the whole experience. And now we know that for future shows we should just have one parent take Amy and the other can stay home with Sarah.
Monday morning, Sarah had a case of the Monday Morning Blehs. She protested vehemently about going to school, naming all of her physical ailments in a list that was a little too complete and detailed. Still, I questioned what we should do. Carl believed that she actually was well and just didn’t want to go to school. It took both of us being creative with snuggles, tiger roars, Carl suggesting they get dressed together for their days, and me driving Sarah to school… but she got to school and had a good day. I then heard from the pediatrician that they were able to get a GI visit scheduled for this coming Tuesday. After noting how Sarah was not eating well in recent weeks and the struggle of the morning, I felt like that appointment could not arrive soon enough. Tuesday morning was easier and she got ready for school easily. I made donuts for breakfast and she thus ate a bigger breakfast than she had in at least a week or two. She ate almost all of a donut! The homemade ones are smaller than typical donuts, but still. This was way more than one cracker.
I had time to run some errands on Tuesday and reached back in time for my previously honed skills of finding higher calorie preferred foods to get Sarah to eat. I never thought I would be in that mode again. But, I think it worked to remind her body what it was to eat enough calories. I got some of her favorite Silk yogurt and some Naked Green Juice. I stocked up on some chocolate pudding and ice cream sandwiches made with non-dairy ice cream. Every day when she came home from school, instead of asking if she wanted a snack and accepting her “no,” I didn’t ask. I just brought up an ice cream sandwich, a pudding, and a bottle of green juice. Since she likes pretending to be a tiger who roars and eats bamboo (and loves saying “Tigers love to eat bamboo!”) I said it was a bamboo snack and bamboo juice. She usually ate one or both snacks and drank the whole green juice!! That was great for hydration and calories. Her energy level was notably better all week. She got ready easily every day for school that wasn’t Monday. She even collected what clothes she would need and brought them into my room so we could get dressed and roar together. I made donuts every morning or offered left-over donuts. She still napped after school most days, but didn’t talk about being tired all the time. She didn’t talk about phlegm or acid reflux. She was happy. This was one of the best weeks we have had in a long time.
I finally reached out to the assistant teacher about getting the homework that Amy needed and got a response right away. Meanwhile, we still haven’t gotten a response from the main teacher. But, Amy has finally been able to do the assignment that she has needed to do for weeks. Phew!
Amy and I attended an orientation about a new swim program we hope will work for her. I’m actually a tiny bit on the fence about hoping it works. The actual program sounds amazing. She gets to practice with a swim team but doesn’t have to meet the minimum practice requirement and won’t participate in meets except maybe occasionally. The only issue is that it is a 30 minute drive during rush hour and she needs to be out by the pool and ready five minutes before practice starts. So to make sure we have time and aren’t rushed, we are going to leave home an hour before practice starts. Then it is an hour long. And then it takes about 20 minutes to get home. We won’t get home until 7:30, so that is later than our usual dinner time. This means making adjustments about Carl’s schedule so that Sarah isn’t on her own for too long. I don’t want to drag her along for the whole thing. If Amy likes this new program then it also means she will stop attending the British Swim School and I feel sad about that end of an era. I feel sad that it won’t be both girls going to swim lessons at the same time. All that said, I do hope Amy likes the SwimFit as two of her friends from past school years may be there too, depending on which days they attend practice.
Carl ordered something that came in a large box. Rather than recycling the box, we put it in the family room and Sarah has loved sitting in it, pretending it is a boat. She also loved tossing leaves in the air yesterday as it was a gorgeous fall day. I went for a walk that was absolutely stunningly beautiful. And then after several failed attempts to get Sarah to join us for a drive, Carl, Amy, and I went on a drive by ourselves. In the jeep. With no roof or windows. That was a weird experience. Carl and I both felt frustrated by Sarah’s complete refusal to even consider going. It felt akin to the times we have wanted to go on a family hike and she absolutely will not go. As I have noted many times in my life, I have a hard time dealing gracefully with things that just don’t make sense to me. I may be occasionally getting better where Sarah is concerned, but only about gleefully saying, “tigers love to eat bamboo” because that has no consequence so it doesn’t matter if it makes sense.
When Sarah got off the bus Friday afternoon she asked me why her hands felt tingly. Ack. I don’t know. Such things do not help my adrenal glands remain calm. Neither does her saying she feels weak, woozy, and her acid reflux this morning. However, last night we did do an experiment of ordering pizza with gluten and dairy. Prior to that, most of her food for the week didn’t have either (although the ice cream sandwiches do have gluten but they are small). So I don’t know if Sarah’s symptoms this morning are a delayed response to last night’s dinner or not. I’m still glad to have the GI appointment. I wish this all was a little more clear. But I’m still grateful that we a good week.
Anyway, I hope you are enjoying the fall foliage and are as well as can be.
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