Five. That is the number of medications Sarah now takes every morning. Then three every evening. A week ago it was three in the morning and two in the evening. Plus one in the afternoon. So it’s not really that much of a jump but it feels like a lot, especially when camping as we are this weekend. To back up…
Tuesday night Carl was away on a business trip so Sarah opted to sleep next to me. At 4 am she woke and said, “mama, my throat.” I said, “what? … is it sore? Scratchy?” She said it was scratchy. I said she could stay home because I want err on the side of caution re sickness. Then about a minute later it was clear that whatever Sarah was feeling related to her usual phlegm “pukus” (as she calls it). If I had known it was the usual then I would also have known she would feel fine in about an hour, as she did. But since I had already said she could stay home there was no going back. I only had to cancel my session with my trainer and I decided to make use of the day by taking Sarah to the doctor. I spoke to the nurse extensively before making the appointment so she arranged for a double-long time with the pediatrician so we could really talk. After much discussion we all decided to try putting Sarah on Prilosec for a month to see if it will help Sarah’s symptoms if they have been due to acid reflux. We also decided to try Allegra instead of Claritin for Sarah’s seasonal (all the time??) allergies. Sarah doesn’t yet swallow pills so the Allegra is a liquid version to be taken every 12 hours. The Prilosec is also a powder that gets dissolved in water and Sarah has to take it in the morning 30 minutes before eating. This is a tight squeeze on school mornings. And she says it tastes disgusting but she still takes it. So far (knock on wood) the Prilosec seems to be helping. Sarah went from talking about and or experiencing phlegm discomfort multiple times a day to not mentioning it at all. We will see how things go when she comes off of Prilosec in a month. If her symptoms return then we may need to do an endoscopy and see a GI doctor.
I have still had many moments that felt struggly and fraught. I know they are only mere minutes out of each day, but they overshadow my feel of the day immensely. I found a couple of therapists that sound like possible good fits and specialize in helping with parenting issues. I’m attempting to get an appointment but almost everyone is super booked. I don’t want parenting advice because I want to go to Son-Rise people for that, but I do want support for my half of the feelings. I have felt some success moving through the feelings by more often allowing my tears instead of tightening into anger. Or sometimes I do both. But I am always clearer and more open after some short hard tear sheds.
Amy’s bus situation continues as usual except even a little worse. On Tuesday at 4:30 I got a text from her school saying she had an unexcused absence for the day. What?!?! As she wasn’t home yet, I freaked out a bit wondering where my child was if she hadn’t been in school. Luckily her best friend has a phone so I asked the friend’s parents and found that all was fine and they were on the bus home. But they had been so late in the morning that they missed home base, thus being marked absent. After I emailed about it, things were corrected. But still. If she is absent and it isn’t excused then I would like to know early in the day, not when she should already be home if the afternoon bus could ever be on time. Which it apparently can’t.
Wednesday at bedtime when Amy went to use the bathroom after Sarah had already finished, Sarah went into full blown screaming and upset, trying to shut Amy out of the bathroom. In retrospect I can only assume that the day with seeing the doctor (and getting an X-ray of her abdomen to check for impaction – it was ok but we do need to increase the miralax) was more taxing for Sarah than she let on until that moment. After Sarah had regained her equilibrium and gone to bed, Carl and I were with Amy as she had her feelings about how hard it can be to have a sibling. I said, “I’m sure Sonia felt the same way sometimes.” Then we all cracked up laughing because Carl had expected me to say something on his behalf instead of pointing the finger at his having been a frustrating older brother. (Sonia is Carl’s younger sister.)
Sarah also clearly still has feelings from her first day of school when the bus was late in the afternoon. I suggested she could write a book about it so she did. She called it “Toad’s Bad Awful Day” but wrote it as “Toad Bad Aufl Day.” She drew herself yelling and her classmate telling her not to. She drew the bus and herself as Daniel Tiger wanting to roar. Then the final picture was of a sad Sarah next to a smiling Anna listening to her.
Sarah has helped me make fresh carrot, celery, apple, chard, and cilantro juice. She wears Her sunglasses to do so in style. I had recently started making this juice again as a vehicle for Sarah’s miralax instead of hot chocolate or Gatorade. Except. Now that Sarah takes the Allegra in the morning, I can’t do the juice at that time because you aren’t supposed to have fruit or fruit juice within an hour before or after the Allegra. It has been a challenging week trying to figure out how to manage all of the medications and their limits or requirements. This coming Wednesday we meet Sarah’s neurologist so maybe we can try weaning off one of the anti seizure meds, as has been the long term plan. Especially because that particular medication can cause irritation to the mucus lining of the upper respiratory tract! As I just learned when doing some reading. She has been on it for years and the phlegm issue is more recent, but still. Maybe the medication is part of the issue.
One day I was talking with my mom when Sarah got off the bus so I didn’t greet Sarah as I so often do by asking her about her day. She stopped me and said, “mom, can you say ‘how your day was’”…..Yes!!!! I didn’t know she liked it when I asked. This touched my heart and I will most certainly ask every day from now on.
We are camping now and have had a generally good time so far, although the weather is much wetter than forecast. Yesterday the kids played in the lake while it rained. Luckily the rain stopped in time for us to have a fire and cook hot dogs and s’mores.
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