On Monday Carl was working from home since Amy was home sick and I had clients. When it was time to fix lunch he went to leave his laundry room home office only to discover that the doorknob no longer impacted the latch in any way. So even though that door doesn’t have a lock, he was locked in! He had Amy slide a screw driver under the door, only to realize that the screws for the knob plate were all on Amy’s side of things and that was not the moment for a lesson in tool use. Luckily his dad was available to come over to solve the problem and set him free.
Amy is doing well and is finally better from whatever bug she had. She still has plenty of homework to attend to and for some of it has questions for her teachers. We have felt a bit frustrated at the lack of email responsiveness given that her teachers expect that she checks her email daily but they don’t seem to check theirs. I was able to solve one problem by posting a question to the Facebook group for parents at her school and that was a good reminder that when we don’t know something we can expand our queries beyond Amy’s closest friends.
Sarah was home sick on Thursday, with her sudden onset combination of symptoms occurring as she finished her miniscule breakfast. In addition to that we realized (after a follow-up doctor’s appointment) that her appetite was severely curtailed and had been decreasing over the past week (at least). I felt silly that I hadn’t noted enough of a problem until the day after the doctor’s appointment so then I had to call and now we go back again this coming Tuesday. She has lost at least 2 or 3 pounds in the last month and now barely eats at her meals. For breakfast she has her meds and not much else. For lunch she has chips and hummus or part of a bagel with cream cheese, but is never eating her fruit/veggie sides or her treat, which is unusual. And her dinners have been quite small and then she says she is full and doesn’t even ask for a treat. While the doctor doesn’t think it could be the Prilosec or Allegra, Carl and I opted to take her off of both for a bit and see what happens. If we realize she needs an allergy med we will go back to Claritin or Zyrtec. Yesterday we maybe noticed a slight increase in her appetite. It is all so weird to be concerned about her in this way again. When she was very young she was diagnosed as Failure to Thrive and we stressed a ton over getting enough calories in her. That memory has happily been far in the rear view mirror for years. I know the current situation is different, but it is still stressful. The pediatrician is going to call to get us a GI appointment this week and thinks an endoscopy will be in order. It is hard to remain relaxed about this and not panic that there is something terribly wrong (eg cancer, an ulcer, low motility) and that she will die or it will impact her for her entire life. Just having her eat a tiny bit better yesterday did ease my fears and dire predictions a bit.
We have also started weaning Sarah off one of her anti-seizure meds, realizing it doesn’t make sense to wait to do so until we figure out the GI stuff because that could take a long time. While I’m excited to be reducing how many meds she has daily, I do feel a bit more nervous every night that she will have a seizure.
Sarah has shifted slightly away from her love of crocodiles and back to her love of pandas. She likes to say “panda panda bear, in your hair” and to call me Mama Panda. Last night half way through the night she came into my bedroom and asked to snuggle with me, so Carl went to her bed and she took his place. She snuggled up close and reached for my hand and said we were holding panda paws. She has also been wearing a spider ring and likes to put it on people while we sing, “ there’s a spider on my ___ on my ___.” Recently the spider was on my nose!
Appointments galore these days! We went to Sarah’s orthodontist and in about 5 weeks she will start wearing retainers on her top and bottom teeth all the time in lieu of braces. Technology has changed tremendously even since Amy had her first round of braces. Sarah didn’t have to have the clay-like mold made of her mouth. Instead they took a detailed video of her teeth and made a model on the computer that the orthodontist can use to create a model of how he wants things to be and to make the retainers to gradually shift towards the goal. Amy has her orthodontist appointment tomorrow and we will see if it is time for her to go through the same process or if we wait longer.
Speaking of appointments, I also saw my new headache doctor and liked her and the practice a lot. Mainly I like the flexibility that if I’m in a bad way then anyone can see me and give me injections. It was also helpful to learn that I’m not alone in my pattern of how I deal with the clusters when they happen. Apparently many cluster patients follow the same pattern of “it’s fine, I can handle this, I’m figuring out ways to handle it, I’m fine, oh wait, I’m totally not ok and really need major help yesterday.”
Yesterday we went to Simmon’s Farm to get pumpkins and play. I had an Alexander class to attend so only got to be at the pumpkin farm for lunch but I’m still glad I went. Carl and the girls stayed for a few more hours playing and enjoying the day. Sarah didn’t feel sick and didn’t need a nap! That was huge.
Any prayers and good visions regarding Sarah and her health are most welcome and appreciated.
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