October 30: Tricksters and Pumpkins

I know I haven’t been able to find all lost things, but the number of times I have found Sarah’s lost rings and the manner in which I have found them astounds me. Yesterday she lost a favorite ring while playing in a large pile of leaves at our house. I found the ring after sifting through many handfuls of leaves. 

Yesterday was a glorious day in terms of weather and leaf color. We ate lunch outside and were even too warm in sweaters. Later we met a friend who does our annual family photo shoot. The kids were more amenable to this than usual, including playing in more leaves and throwing leaves at each other so that both have little pieces of leaves mixed in their hair. After the photo shoot we went to Millie’s Ice Cream Parlor for the first time in ages. Millie’s has delicious ice cream, including many dairy-free options, which is how I’m trying to skew things for Sarah lately. When we got home we carved pumpkins, and Amy even cleaned most of the seeds out of hers despite her dislike of such a task. Amy carved a witch hat and stars, Sarah drew many things on her pumpkin in Sharpie but only cut out a small rectangular-ish shape. She says hers is a musical note. Carl did a truck face, perhaps for a robot truck, and I did a happy face.

Sarah was an absolute trickster on Tuesday. Her regular teacher was not at school but got a call from the assistant teachers and thus called me. Apparently Sarah wasn’t feeling well and another kid had also gone home sick so they wondered if something was going around. I quickly canceled my upcoming appointment and went to get Sarah, feeling concerned if she was sick because we have been having such a good run of her being well (knock on wood). Well… as it turned out… Sarah was totally fine! I do know she has strong mirror neurons so when she saw another kid legitimately being sick, she probably emulated all of the symptoms well. We know she also knows all of the things to say when sick or trying to get out of something by being sick. I could see a glimmer in her eye even as we walked to the car. She proceeded to be happy and bubbly for the ride home and then joyously ran down the block after I parked, toting her new library book for which she had been eagerly waiting. Once at home she continued to play happily, easily ate her lunch, and then had a nap. I have never been happier to have been tricked. I was so relieved that she was actually well and she was in such fine form that I delighted in her presence in the house. I almost wanted to shake her hand for her achievement. Instead I chose not to point out anything about her actually being well. 

Sarah's newest favorite book as of Friday is Does A Kangaroo Have A Mother Too? By Eric Carle. This means she likes to ask us repeatedly if a bear has a mother too, to which we reply quoting the book, “Yes, a bear has a mother, just like me and you.” She proceeds to ask about other animals or creations such as “Does Baby All Done have a mother too?"

Having checked with Sarah’s doctors, it seems that her thyroid level is only a little low and the best course of action is just to check it again in 6 weeks. We met with an allergist who ordered bloodwork but I will wait 6 weeks so we can get everything done at once. 

I am still searching for a new swimming lesson and venue, but now for both kids. I had thought we had a new solution figured out for Amy where she would practice with a swim team but without the commitment of a certain number of practices. Thursday was her first official practice that wasn’t just the coach getting to know everyone a little and sorting kids into groups. Amy did not like the practice at all. She loves swimming and loves the water, but wants to go more at her own pace and not be driven to go fast, fast, fast, with hardly any time to rest in between laps. So. Good to know before we needed to sign any paperwork. I’m so glad she knows herself so well. As she said, if she is going to pursue her passions then she wants it to be fun. Yes to that! It has been many days since I sent out two inquiries regarding possible lesson venues for Sarah and no one has gotten back to my emails or calls. Why do places have web forms if they don’t work? And why voicemail if it doesn’t work? I will call again. My dream scenario would be a pool with private lessons for Sarah and lap lanes available so Amy and I could swim while Sarah has her lesson. 

Fingers crossed for good weather tomorrow, specifically from 5pm-7pm. 

October 23: Digging in of Heels and Deja Vu

From the recent concerns about Sarah’s lack of appetite and weight loss to the current issue of her being “pausenated” (constipated) we are having a serious case of deja poo. Sigh. I never thought we would be dealing with these issues again and here we are. The good news is Sarah’s appetite is definitely better even if not quite back to what it used to be. We also saw a GI doctor and got lots of bloodwork for that doctor and for Sarah’s neurologist. I haven’t heard from either doctor about their interpretation of the results but I can tell from looking at the results myself that her TSH is low. That means her thyroid needs some assistance. Being hypothyroid can contribute to fatigue, which Sarah definitely seems to have been dealing with for many months. Thyroid issues have run in my family for many generations so this is perhaps not a huge surprise. 

Otherwise, Sarah did have another good week overall in terms of her health and happiness and school attendance. Amy had a good week too. She went to her first swim practice for her new swim program. It was loud and a bit overwhelming (for me) and was mainly just assessing the kids for what level they should be in, but it was still a good experience. And we learned that practice starts 15 minutes later than we originally thought and is a shorter drive than we thought, so that makes the whole thing easier for us and in terms of Carl getting home to be with Sarah. What was not great was learning that for sure I need to find a new swim situation for Sarah because her place will not allow her to continue past the end of the year. They stop their kid program at age 13 and just didn’t realize that Sarah had aged past that. Despite making an exception for nearly 3 years, they say that they absolutely cannot continue making an exception. The private lessons they offer are too far away. And they say that she wouldn’t really fit with the adult class because there is less supervision. You mean that a 15 year old with special needs wouldn’t fit with the grown-up class?! Astonishing! GRRR. Anyway, I’m trying to let go of my grumbles and to just move forward to finding her a new situation. I have emailed two places but haven’t heard back yet. I also continue to wait to get an email back from one of Amy’s teachers and am ever more frustrated that this seems to be an impossibility. Why make it possible to email a teacher if they won’t write back? 

Amy’s school had a fall festival - the first since before the pandemic - and she loved it. Our timing only made it possible to stay for half an hour and Amy was very upset to not be able to stay longer. Now I know for next year to prioritize attending for the whole time. In terms of other events from the week, thrice I planned for Sarah to go somewhere and thrice she dug in her heels and refused to go. I had arranged for the kids to get their bangs trimmed and Sarah absolutely would not go. I don’t know why, since normally that is something she enjoys. When Amy and I returned, Sarah was downstairs saying she wanted to go. But, nope. That ship had sailed. So now her bangs are still almost in her eyes. But the only way for me not to be too mad about the situation was to decide I won’t make a separate appointment for Sarah. She will have to wait until Amy needs her bangs trimmed again or Sarah can let me trim her bangs myself. Then, at the fall festival, Sarah didn’t want to get out of the car. So she and Carl stayed in the car while Amy and I went to the festival. Yesterday, we wanted to go for a walk to a beautiful outlook point in the woods and Sarah did NOT want to go. That wasn’t a surprise because she basically never wants to go for such walks. Still, I wish we could do short hikes as a family more easily. Last Sunday Carl and Amy went on a hike to a waterfall and the whole experience looked magical, with fallen logs creating bridges to traverse. Yesterday there were no fallen logs but Carl and Amy had fun with a water bottle duel.

After the bang-trim that wasn’t, we did have a nice dinner with Grandma and Grandpa at our house. Now, this weekend we have Mom-Mom and Pop-Pop visiting and that is lovely. It has been many months since we saw them in person. Carl and Mom-Mom played duets of the baritone horn and flute, as they often do during visits. Sarah decided to accompany them on the piano and actually did a notable (ahem) job of keeping time. Amy dressed as Tinkerbell and danced and cartwheeled all around the room while the music played. Sarah also enjoyed trying to play the baritone horn, making the sounds with her voice instead of the force of her breath. 

Lots of love to all of you.

October 16: Roaring Tigers and "Bamboo" Juice

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. 

October 9: Appointments and Appetite (or Lack-Thereof)

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. 

October 2: Screaming, Swimming, and Sunglasses

First, I want to follow up on the whole bathroom screaming situation - when Sarah screams and pounds on the door if Amy is in the bathroom. When I last wrote about it it had seemingly miraculously stopped after Carl, Amy, and I decided we would ignore it completely if it happened. Well. I knew the cessation might just have been a coincidence as that happens sometimes anyway. Sure enough, Sarah certainly has more screams and door pounding in her and has let it out in spades over this past week. It does still help me stay calm to know that there is nothing I need to do about it. 

Sarah has also had some screamy moments at school. When her teacher called to tell me about Friday’s screaming episode she explained how she asked what grade Sarah was in, while telling Sarah she would just ignore Sarah while she screamed. I asserted that I didn’t think referencing a grade or age helps Sarah and might add shame to her already struggling self. After all, I’m 45 and if someone were to remind me of that after I lost it emotionally then I would just feel even worse about myself than I already felt. Her teacher understood and we brainstormed other ideas for helping Sarah when she gets overloaded. Because I do think it is Sarah reaching overload rather than seeking attention. As Sarah has been reviving some of her old sign language lately, I looked up the sign for “overwhelm” and taught Sarah and sent a video to her teacher. That way, hopefully, if Sarah is overloaded she can do the sign if she can’t find the words. Or if she has the words, I told Sarah she can ask to just sit quietly at her desk. I ordered some of her favorite books so she can have copies at school to help her carve out a quiet niche and maybe regroup.

Sarah has continued wanting to eat on her own, usually now opting to be in her room with the door shut, “for privacy” as she tells me. The only tricky thing with this arrangement is that she easily gets distracted during meals regardless of where she is, and stops eating to play or read a book. I need to be able to know where she is in her meal progress and give nudges to make sure she has her prescription meds. On school mornings I need to make sure she finishes in time to get dressed in time for the bus. This week she did in fact attend school five full days in a row! A first for the year. The morning bus started coming five minutes earlier than even it’s usual 6:58am time, and every day but Friday Sarah was still upstairs getting ready when the bus honked to signal its arrival. Friday was a dress-down day for a walkathon so Sarah was more excited to get dressed and was downstairs with her shoes on when the bus arrived. She had also woken up half an hour earlier than usual on Friday morning so I’m sure that helped too.

While I’m used to Amy going into her room to hang out on her own, having Sarah want to do that much more often than usual instead of wanting to snuggle with me threw me for a loop. I wondered why I ever didn’t want to do “chirp chirp” with her. Now I missed her and was slightly worried about how solitary she seemed to want to be. I realized that a lot of my interaction over some weeks mainly involved judgement and frustration from me towards her. So is it really any surprise she wouldn’t want to be around that? Now I’m more in a mode of appreciating any time she wants to hang out with me, no matter what we are talking about. I remind myself that it’s ok if things she says don’t make sense. Most days after school she naps if she can and I started napping with her so at least we had that time together. I feel like that has helped us get back into an amicable connection. She even ate dinner with Amy and me a couple of times during the week. It helped that I bought Halloween candles so one night even though she planned to eat in her room, I set the table with her plate and asked her to help light the candles. She then sat down and started to eat. When she asked about going to her room I asked if she could stay but Amy and I could talk only with each other and pretend she wasn’t there. That was acceptable to her and we ended up talking with her anyway. 

I feel like in one week I went from often feeling like I wanted more time to do my own things to suddenly feeling a bit of an empty nest syndrome and wanting to hang out with my kids if they will let me. 

Thursday night Amy realized she needed to catch up on a lot of school work and had many panicked tears. I assured her that even if she didn’t catch up on any of the work, people would all still know what a thoughtful, bright, kind, creative, loving person she is. And that it wouldn’t change how much Carl and I love her from her ear tips to her toenails. She was able to laugh a little and breathe a little and we looked through each item she had to do. She finished most of them and felt much better about it all as she went to school the next day.

Sarah had her first swim lesson as a Turtle 2. It went well and it was so different seeing her in goggles. I got a call from her swim school saying that they only just realized she is 15 and that technically their programs for kids stop when kids are 13. I pushed back because she is so clearly still a kid and fits well with the kid classes. I don’t understand why they can’t just look at her specific situation instead of going by a general policy. I’m waiting to hear if they will make an exception for her, but at least they are allowing her to continue while they make up their mind. If they don’t allow her to continue as a kid then I can sign her up with them for adult lessons but then there aren’t the fun caps and animal designations. 

Sarah has been having fun pretending to be Mrs. Potato head from Toy Story 3 in which she temporarily loses an eye. One day I came back from a short errand to find Sarah wearing a top hat and sunglasses and claiming to be Mrs. Potato Head. Yesterday she often wore a striped baseball hat and sunglasses, telling me she was going to the pool with Granddad. I love how I never know what to expect about how my kids will be dressed or who they are pretending to be.

Amy and I dyed her hair on Monday with purple in the strips of hair just next to her head. I don’t understand what it is about her hair but it does not hold the dye the way we expect. It washes out after one wash instead of lasting for a month. So Thursday night in addition to the extra homework we did the dye one more time since her picture day was on Friday. She did have lovely purple framing her face for Friday morning. My purple is nearly gone, also not really lasting the month I expected, but that is ok.

Sarah and I came up with a song for bedtime, to the tune of “Summertime” from Porgy and Bess. When she and Amy were little I used to sing, “Diaper time, and the livin is easy” but I always had my lyrics say it was ok to cry, where the original song says not to cry. Our new song, which Sarah belts out loudly and clearly, is

Bedtime and the livin’ is easy

Fish are snoozing

And the moon is high

The lights are low 

And the clock is ticking

So come on baby

Close your eyes

Amy isn’t feeling the best today. Last night she was supposed to have a sleepover but ended up needing to come home because of feeling sick. So any good vibes are welcome. She is still sleeping now.

I hope you are all well.