November 20: Snow, Swimming, and Habits

After Amy’s second class of cheerleading, which she hated just as much as the first, she was able to switch to an improv class that her best friend is in. She LOVES it!! Absolutely loves it.

Sarah’s first private swim lesson went well. She refused to get in the water until her teacher arrived, which affirmed my decision to hire someone rather than trying to take on that responsibility myself. Amy and I had a wonderful time swimming laps. Amy created many new strokes combining the leg movements from one standard stroke with the arm movements of another. Quite a challenge to my neural pathways. She also taught me the butterfly and had me do backstroke for the first time in almost forever. 

Sarah had dress-down days all week because I donated sufficient funds during her walk-a-thon fundraiser, as I always do. She insisted on wearing her corduroy pants for the first three days, but evidently her intense interest in her pants was problematic for her paying attention to other things at school. When I suggested that she wear her sweatpants for the remaining two days because that might help her have a better experience at school, she was willing and did in fact have better days. 

One night after Sarah took her bath, I was brushing her hair and she said, “whoa!” I asked why she said that. She said she felt dizzy and needed a bowl. I ran down to get one and returned to find her lying down on her bed. I was inwardly panicking that her mystery symptoms had returned after seeming to have abated. It may have been from having an empty stomach but with extra saliva in it due to her new aligners that she just got that day. Aligners are like retainers, but instead of just maintaining what braces have achieved, they take the place of braces and actually shift the teeth. Sarah just got hers and is already adept at brushing them and wearing them. But at first they felt weird and stimulated extra salivation. Anyway, after a few minutes her feeling yucky passed. She then had a lot of screaming to do because Amy was in the bathroom taking her shower, but I figured Sarah must have been feeling reasonably well to put such force behind her screams of protest. The remaining bit of concern was that her arm was shaking. She has had hand tremors for a while, but the arm seemed new. I asked her neurologist about it and apparently it could have been a side effect from weaning off of one of her anti-seizure meds rather recently. That also seemed to resolve by the next day. 

Yesterday morning Carl and Amy went to a movie theater to see the original Star Wars movie while eating cereal. The theater provided a cereal bar with many types of cereal and then showed cat videos before the movie, so Amy was in heaven. They will return Monday and Tuesday to see the next two movies. 

Sarah and I had a rough time yesterday. It was the one day that seems to occur every month where it would really be best if I was removed from contact with all other humans. Most days I have easy space to say all of the things she asks me to say, but not yesterday. Yesterday I resented the patterns and questions and repetition. I resented all of the whining about various things, but instead of letting it slide off me like I normally do, I yelled back or spoke harshly. So not a great day. I think my internal weather has shifted today, as it always does. 

When I notice my emotional habits, especially the ones that make me less kind to my nearest and dearest, I can feel so frustrated. Knowing that change is in fact possible, I get mad at myself and judge myself for not having made the changes yesterday. Thank goodness for being able to translate everything into the language of the Alexander Technique. With that I can so easily understand that we come by habits earnestly and honestly, that while we can change them in one moment, they may come back in another, and that it is all a process that lasts our whole life. With my physical habits I just notice them and let them go, unsurprised that they return repeatedly. So I’m aiming to have that level of understanding regarding my mental and emotional habits, to gently assess where I am and kindly nudge myself towards where I want to go.  

Lastly, it snowed! Nothing much stuck, but on Tuesday the flakes were huge and beautiful. 

November 13: Changes, Rainbows, and Boundaries

Thank you to all who reached out in support regarding my aunt. She died peacefully Tuesday evening. I’m so grateful that I got to see her first and say goodbye, and I’m also sad that she is gone. Sometimes you just know a person loves you even if you may not see each other often. I always knew she loved me and that meant a great deal. I think she knew that I loved her, but I didn’t ever specifically ask that question. I don’t think I ask that question of many people - except maybe my kids. I do ask them sometimes, “Do you know how much I love you?” They know the answer is to the moon and back or something similarly vast. On my drive home from seeing my aunt it rained off and on, but for one moment I saw a rainbow. I took that as a good sign.

We had our last swim lesson with the British Swim School on Monday. We had a wonderful 5 years with them and I highly recommend them to anyone (if your kid is younger than 13 or you want a class for adults). Tomorrow we have our first appointment with a private swim instructor for Sarah through Sunsational Swim School. Fingers crossed that there will be easy space for that to occur, since it is using the free swim time at a community pool, and for Amy and me to swim too.

On Wednesday my morning canceled so between talking to my (new to me) therapist and going to see my trainer at the gym, I went to Phipps Conservatory. I hadn’t been in years, though we are members. Since they have timed tickets for entry, that I didn’t know about, I had to wait for a bit. I went to the cafe and got a sandwich, which unfortunately turned out to be terrible. Usually I like their food, but this was just awful. I made myself eat it though because I knew I would need the energy later. Then I sat outside in the sun and worked on my book (rounding the bend towards finishing the 3rd and hopefully final draft!). Then I had twenty minutes to walk around in Phipps. It was a glorious twenty minutes and I intend to go back often. The air always feels healthy in there and smells so fresh. One bush had beautiful red flowers that looked like little lampshades. It is called The Biltmore Ballgown. 

Speaking of ballgowns… Amy had her first dance! It was just for 6th grade and, in her words, “It was EPIC!” They had pizza, snacks, games, costume accessories, and a photographer so you could get pictures of you and your friends. There was no dress code or requirement, just whatever people wanted to wear. Amy wore a sparkly sequined black dress over pastel mermaid-scale leggings and had a hair clip with pastel hair that seemed mermaid-ish.

Sarah has had a mild cold all week, but tested negative for covid and seemed to be her usual self all week so still attended school (masked). We also successfully made it to the hair salon for bang trims, though it seemed just as tenuous as the last time I tried (and failed) to get her to go. I explained that I was leaving to get Amy and go straight to get bang trims and so Sarah needed to come at that moment if she was to get a bang trim. She protested vehemently that she wanted to watch her show or nap first. Eventually she said she wanted to go, but she insisted on changing her clothes first, which took more time than I had allowed so I got impatient and anxious. 

I am getting better in many moments at seeing the difference between setting boundaries to take care of myself in a given interaction with Sarah versus trying to control her. Tuesday night I was having a lot of feelings after getting the news about my aunt, combined with several other things feeling weighty, so I was talking to Carl on the phone since he was away for work. He was listening to my tears and then Sarah, who had been in bed, started screaming for me. Since Carl was away she wanted me to come to bed to be next to her, as she sleeps in his spot if it is vacant. Instead of telling her not to scream (or perhaps after that didn’t work) I explained that I was going to finish my phone call and that she could scream or not, but I wasn’t going to come upstairs earlier because of her screaming. I felt calm and centered saying this and it also let Amy off the hook from trying to calm Sarah, which she was trying to do to be helpful. The challenge going forward is to continue to translate situations into seeing my own options instead of trying to force Sarah to be any certain way. When it works I feel good, clear, and empowered. The bang trim moment somehow straddled working and not working. I had the boundary that I was going to leave with or without her, but once I got her consent to accompany me then I didn’t have a way to enforce any boundary about timing, since I really wanted her to come. So this is a work in progress. 

Lots of love to all of you.

November 5: Halloween, Cheerleading, and a Dedication

This update is dedicated to my aunt J. who was recently placed in hospice care. In addition to reading my updates and cheering for our journey all along, she and my uncle financially supported the Sarah-Rise Program and made it feel easily possible to do whatever we thought could be most helpful for Sarah. My aunt always said it was the gift of freedom. That was so true and is still deeply appreciated. Tomorrow morning I’ll be on my way to see my aunt and uncle, hopefully in time, so that is why I’m sending this update out tonight. 

I am currently visiting my Dad and stepmother (Grammy and Granddad). I got to see my brother for an early birthday celebration for him, and my uncle (different side of the family from the one mentioned above) came for the celebration too. Today was a lovely day, even if it was unseasonably warm. Carl and the kids are having a Dad’s Weekend, during which the kids helped him change the bumper on his Jeep, lying down on the wheelie thing to see the underside of the car.

Halloween was wonderful. The weather was mild. This was the first year that we nearly ran out of candy to distribute, aside from the pile I set aside to trade for any items Sarah might need to swap because of her peanut allergy. It turned out that she is so aware of her allergy and what candy she can’t have that I didn’t need to change a single item of her bountiful haul. Both girls had to come back home part way through trick-or-treating to drop off their full plastic pumpkin baskets and get new bags or pumpkin baskets. Sarah was dressed as a musical note crocodile, with a large cardboard crocodile head, a soft tail, and a cardboard metronome that she wore around her neck. She wore musical note pajamas and musical note boots. Amy was Tinkerbell, Carl was Peter Pan, I was Wendy, Anna was Captain Hook and their partner was Smee. What was interesting was that many people had no idea who Carl and I were if we were solo, but if we were together then people instantly knew who we were. The crocodile trick or treated with Captain Hook and Smee while Tinkerbell went around with her friends, and Peter and Wendy stayed home to hand out candy.

I have solved the swimming situation! Hopefully our new arrangement will start in about a week. I found a place that sends teachers to you at your pool of choice and I learned that the place where the kids used to go for swim lessons actually is still open even though their swim lessons haven’t been happening there due to variable pool temperatures. So I will sign us up as members and Sarah will get a private lesson during the open swim time, and Amy and I will swim laps (assuming there is space for us). I am tentatively thrilled about this solution. Our Mondays will still be tight and have piano, picking up Amy from school, and going straight to swimming, but the location for swimming is better. 

Sarah insisted on wearing her 8th grade sweatshirt all week to school, even though technically it is only to be worn on Spirit Days or dress down days. I decided there are only so many battles I can fight and if the teachers want to make her take it off then she has a backup sweatshirt she could change into. But she has come home in the 8th grade sweatshirt every day so either she changes back into it before her bus ride or they haven’t been enforcing the rule. 

Sarah’s appetite is better than it was when it was really diminished, but I still don’t feel that we are back to normal. She mostly stays well (knock on wood) but today had some phlegmy time and said her belly wasn’t feeling the best. 

Amy was supposed to have her first 6th grade dance on Friday but it was postponed, much to her disappointment. She also had her first cheerleading class for Block Zero. Block Zero is a daily class time with fun options to choose from for each quarter. Students have a different Block Zero subject each day, but have those subjects for the quarter. Cheerleading was something she had been really really really looking forward to. And then it was not what she expected. They didn’t spend time doing handstands and cartwheels at all. There was running and jumping and clapping and it all felt a bit fast and maybe overwhelming. She felt like she didn’t fit in, in part because she was the only white student and in part because she didn’t know anyone aside from the teacher. That night she had may tears and feelings about not fitting in, but we also had a good conversation about that and how other people might also have such feelings sometimes. 

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.