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Maggie’s First Week at “School”

Maggie’s first week at ABA Therapy came the same week as Spirit Week at “school.” For day one, Maggie sported her “Mommy’s Night Owl” pajamas, adorned with an adorable momma and baby owl on her chest. I packed her keto lunch and snack in her bag, an extra change of clothes (just in case), a decent supply of pull ups, wipes, and a personal potty seat for potty training. Protocol for drop offs is pulling into the parking lot and waiting until her teacher picks her up from the car. This minimizes additional people in the building as a COVID precaution and frankly, makes drop off easy for me since Hazel is safely and comfortably strapped to her own carseat. I kissed Maggie goodbye and her teacher carried her into the building. I think Maggie remembered the toys and gross motor room from her evaluation so she was eager to go. I don’t think she looked back at me at all as I watched her enter the building.

During the day on Monday, Hazel and I ran errands and had the luxury of using a single seater shopping cart. We cleaned the house, I wrote and worked out during her nap, and we took Khaleesi on a walk without the wagon. We kept busy as I kept my phone at my side, ready for any phone calls should something come up. It felt weird with Maggie not home. I worried about seizures. I worried about her in general.

Maggie’s schedule is Monday through Friday 8:30 a.m. to 3:30 p.m., essentially normal school hours. At 3:30 p.m., Hazel and I were waiting in the parking lot for Mommy’s Night Owl. She came out, and smiled at me with sleepy eyes. Her teacher told me that she had a great day. She actually played with other kids in her pod, which surprised me because Maggie typically ignores and avoids other children, including her sister. Day one focused on getting to know her and relationship building. I received her seizure log: four seizures at school and one at home before school, so five total for Monday.

An update about seizures: Maggie is in the process of weaning off of a medication called Keppra. We’re dropping 1 ml per week (on Tuesdays) until she’s completely weaned. We were warned that we may see a temporary uptick of seizures as her body adjusts to the lower dose (and ultimately, completely withdraw from that medication). For perspective, Maggie averaged ten or more seizures with the four medications on a typical day prior to initiating the ketogenic diet.

Tuesday was Super Hero Day. Maggie wore her batgirl t-shirt which gets more wear from Hazel these days because it’s a 3T. Maggie wears 5T now, but super heroes tend to wear tight clothes so she pulled it off. I kissed her goodbye in the parking lot and told Hazel we were going to have an adventure. Hazel and I explored an almost empty Barnes and Nobles and looked at books, at least until her explosive tantrum when she wanted to “help” by piling books into the stroller. At this point, I hauled her over my shoulder, put the books away, and rolled her kicking and screaming in the stroller back to the car. I guess Barnes and Nobles was too much excitement for Hazel.

Tuesday was also a dose drop day. Maggie went from 2 ml to 1 ml of Keppra. Tuesdays tend to have more seizures than other days for this reason and that was the case, but it was still lower than her pre-keto days at eight total by end of day. Besides the seizures, she had another great day at school. Her teacher also asked me for pictures of the family so Maggie can begin learning P.E.C.S., which stands for Picture Exchange Communication System. The idea is the child gives you a picture of whatever it is she wants or is trying to say. In order to make this work, Maggie needs to learn how to point to specific things in pictures as a means of communication. There are apps for this, but Maggie is still far too destructive to be trusted with an iPad, a talker, or any other electronic device, so low tech works for us for now.

Wednesday was animal day. Her teacher met us at the car dressed as a full-fledged lion. Maggie just wore a long sleeved shirt with an owl on the chest. Hazel wore a bunny ear headband in the car, which doesn’t exactly work with a helmet. Maggie was getting adjusted to her routine at school while Hazel and I adjusted to our routine at home. By the end of the day, she had five total seizures. Her teacher told me at pick up that she can correctly point to our mommy and daddy pictures, but wouldn’t point to Hazel’s or Khaleesi’s pictures consistently. Two seizures total for Wednesday.

Thursday was an unusual day because Maggie had her evaluation with the audiology department in Baltimore. Hazel stayed home with Daddy while I drove Maggie to Baltimore. After check in and some waiting, Maggie and I were escorted into a room with three audiologists who interviewed me about Maggie’s medical history, especially related to hearing issues. Maggie is on her third set of ear tubes after very frequent ear infections during infancy. Our first test was the sound booth. My job was to hold Maggie while seated in a chair in the center of the sound booth while one of the audiologist tried to get Maggie’s attention using a picture book. The other two audiologists were on the other side of the glass and would speak through microphones, ring bells, start a television, buzz other random noises coming from above, below, left and right corners of the room, all while observing Maggie’s reactions. Next, we went into another room while Maggie sat in a big girl chair (sized for children) while I gently held her knee and shoulder just in case she tried to gun it. Maggie is a runner and she definitely does not like anyone poking or prodding her ears. They put in a special ear plug connected to a machine that measured something I didn’t entirely understand. The results of that test showed the ear tubes were in place and working well. The final test was similar in that ear plugs connected a different machine were placed in her ears. One audiologist entertained her with a toy, another worked the machine, and the other sat opposite to me, making sure Maggie didn’t rip the ear plugs out of her ears. The results of all of these tests showed that Maggie indeed can hear. She didn’t respond to low frequency non-human sounds, but if she is developmentally an 18 month old, a typical kid that age wouldn’t respond to those sounds either. In six months, we scheduled a follow up to see her progression.

When Maggie and I drove up to “school,” Maggie started bouncing in her seat. Thursday was Throwback Day and she was wearing her Pink Floyd t-shirt. She was so excited to go to “school.” I dropped her off, came home, and after lunch, rocked Hazel to nap. At 3:30 p.m., Maggie’s teacher gave me an award. Maggie won the Throwback Day contest for her Pink Floyd outfit! We drove home and set up for our Telehealth meeting with her behavioral therapist. To make it easier, we started at the dinner table with both kids in high chairs. We had our hour session, relocating after eating to the living room, the playroom, and even the bedroom. Hazel kept trying to cut in and photobomb the video while I tried to focus on the therapist and Maggie for her session.

By the end of Thursday, Maggie had six seizures in total.

Friday was Sports Day and Maggie wore her pink Dallas Cowboys jersey. It is the only outfit she has that actually goes with her helmet. I kissed her goodbye, and Hazel and I went home. I had a virtual meeting with the local school. It was kind of like a pre-ARD meeting with a huge team of elementary interventionists. We’re getting the school process started now because Maggie’s history is so complicated and because I know from my experience in schools that enrollment with services can take awhile.

The meeting was an epic fail on my end. The reason was because Hazel decided she wanted my phone and tablet. Her use of my phone is limited to FaceTime or Messenger video calls with grandparents, so when she sees electronic devices, she wants them. She began a screaming, kicking tantrum that was so disruptive, I put her in the playroom and closed the door. It was important that I be focused on this meeting because of the amount of information I needed to relay and receive. Even in the playroom, I could hear her screaming through the door which was distracting. Finally, it was over and I have a series of emails to review, action items to complete, additional documents to forward, and a couple virtual signature pages. When I went back upstairs, Hazel was asleep next to the door and I gently carried her to her bed for nap. Needless to say, I felt frazzled.

At 3:30 p.m., I picked up Maggie with Hazel and we spent the afternoon snuggling on the couch. Everyone was tired, but it felt like progress. Ultimately, Maggie’s first week of ABA has been a success. She is happy at “school” and Hazel and I get to enjoy alone time together during the day. She had five seizures total for Friday. Based on this week, I think Maggie will definitely continue to show improvements and I’ll find a new groove during the day with Hazel, hopefully with fewer tantrums.


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