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Updates on Maggie and A Christmas Wish


Yesterday afternoon, I picked Maggie up early from “school” to attend her virtual appointment with her developmental specialist, Dr. L. We first met with her back in August and she’s the person who oversees the multitude of services and facilitates the process for any additional needs. When it comes to treatment, Dr. L provides a “big picture” perspective.


We first met Dr. L back in August. It had been a couple of weeks since we were discharged from the hospital after initiating the ketogenic diet. We had been living in Maryland for about a month and I was completely overwhelmed. I knew my daughter needed so much, definitely speech amongst other therapies, but I didn’t know where to start or how to get them. Our appointment with Dr. L was virtual and she asked me so many questions about Maggie, from seizures to early development, and even questions about my pregnancy with her. She observed her playing and her snuggling on me. In the end, Dr. L gave me an extensive to-do list and scheduled our December appointment to follow up on our progress.

Action Items:

  • Initiate ABA Therapy

  • Audiology evaluation

  • Speech evaluation

  • Occupational therapy evaluation

  • Behavior evaluation

  • Physical therapy evaluation

  • Initiate enrollment and IEP process to enroll for special needs preschool

The process of fulfilling all of these action items created many additional tasks, and slowly but surely, between juggling appointments, finagling with insurance, completing so much paperwork, I was happy to report all was completed.

  • Initiate ABA Therapy

Maggie’s been attending ABA Therapy since September. She loves going to “school.” She gets upset during the weekends because she wants to go. Right now, she attends 35 hours a week, from 8:30-3:30.

  • Audiology evaluation

Completed. It was determined that Maggie hears fine and her long-term tubes are still in place. Hearing issues needed to be ruled out before speech.

  • Speech evaluation

Completed. She needs speech therapy. At the time, she was producing barely any sounds. Now, she’s saying vowels and grunts, but no consonants. The speech therapist asked for her to be evaluated by an ENT to ensure that there wasn’t any structural cause for speech delays, which we did and her voice box is structurally sound. We had been on the waiting list since her evaluation and I’m happy to report that she will begin speech therapy (virtually) on December 28th. Services will be weekly.

  • Occupational therapy evaluation

Maggie’s evaluation showed a definite need for occupational therapy. OT focuses on fine motor skills. A lot of early childhood toys are designed to help develop fine motor skills, like stacking rings and blocks, chunky puzzles, holding crayons, and other writing utensils. Something as simple and pouring water between two cups is a skill that adults take for granted. These skills are necessary for future education and for the many things we do in our daily lives. We’ve been on the waiting list since her evaluation. Dr. L said she’d see if she could speed up the process so I’m hoping that I’ll be getting a call.

  • Behavior evaluation

Our biggest behavior concerns were mouthing (because of pica, a compulsion to put non-food items in Maggie’s mouth), climbing, and aggressive behaviors towards her sister. We started behavior therapy shortly after her behavior evaluation. Since then, there has been a tremendous decrease in her inappropriate mouthing behaviors. She still climbs, but responds better to redirection, like feet on the floor. Maggie doesn’t act aggressively towards Hazel anymore. She might get annoyed if Hazel is wailing for no reason, but now their interactions are more in line with normal sibling relations. Her progress in behavior has been tremendous overall since August.

  • Physical therapy evaluation

Maggie’s PT evaluation showed she would benefit from future PT, but it was recommended that PT not be initiated until Maggie is better able to follow directions. The recommendation was specialized braces on her feet to address toe-walking. We are on the waiting list for fittings. I am hoping that this will be finalized shortly after the holiday.

  • Initiate enrollment and IEP process to enroll for special needs preschool

This was the biggest challenge of them all. The process for building an IEP from scratch, especially virtually, is already cumbersome, but to do so with someone whose condition is as complex as Maggie’s is a bear. So many meetings. So much paperwork. More meetings. Additional evaluations. Spin-off evaluations, most virtual. The team at our local school district has been so incredibly supportive. As a parent, it is difficult to see report after report where your child is ranked the lowest in nearly every category. It is hard to see labels like global developmental delays and intellectual disability associated with your child. It is overwhelming to see all of the therapeutic needs condensed into one excruciatingly detailed 33-page document. But it’s done. The team of elementary special education therapists was so committed to not only providing Maggie with every resource she could need, they took time to check in with me, them recognizing that parents of special needs children need support too, because oftentimes you’re throwing so much of yourself into your children.

Her IEP is done, finalized, and I can breathe a big sigh of relief. Thank goodness!

Our school plan is as follows: Our local schools are virtual right now because of COVID. No one knows how long that’s going to be. I said that virtual therapies unless Andy is home to watch Hazel, will not be productive because Hazel will be disruptive (she’s two. She’s going to act like a two-year-old wanting the screen, which will make Maggie not want to do whatever it is she’s supposed to do for therapy). They understood so the plan is to have Maggie continue going to ABA so she’s continuing in-person services. I’ll receive the services when Maggie is at ABA and Hazel is napping, and then I’ll perform the services with Maggie when she’s home. Once school is back to in-person, then Maggie will attend preschool from 9-11:30, and we’ll adjust her ABA schedule so she’ll attend from noon to TBD, probably depending on the day and depending on other services that we’re waiting to receive. Maggie’s schedule will be full, but if this is what she needs, this is what she’ll get. Besides, she doesn’t like idle time and weekends. Maggie’s the kind of kid that wants a go-go-go schedule.


From our meeting, we have a few new challenges to tackle in the new year. A huge concern is sleep. Maggie simply does not sleep enough, and it’s been worse since the October time change. Maggie goes to sleep around 8, wakes up between 12 to 2 to crawl into our bed, then wakes up like a Jack-in-the-Box before 4, every day. She doesn’t nap. If she has a seizure, she might take a 15-minute catnap to recharge, but she won’t nap. We’ve tried to have her catch up on sleep during the weekends with naps. Nope. She will not do it, except maybe on an extra car ride. The bottom line is the amount of time she sleeps is not healthy for a child and is especially concerning given sleep’s impact on seizure-activity. I’m to expect a call to schedule a sleep study for Maggie where we’ll receive an updated MRI along with sleep EEGs and hopefully we can determine what is keeping her awake. It is most likely neurological. In the meanwhile, I’ll give Maggie cooled chamomile tea before bedtime and her neurologist said that it is fine to try (sugar-free) melatonin. These homeopathic solutions are the strongest we could do given her age.

Another concern to be addressed is Maggie seems to be developing a lazy eye. We noticed over the last few weeks that when Maggie is looking at you, she’s doing so with one eye. The other eye drifts. Honestly, it’s a little weird. Dr. L said it’s common with kids with developmental delays. Oftentimes, delays can be linked to muscular weakness. I don’t understand it at all, but she wasn’t concerned. She recommended an ophthalmologist evaluation for further recommendations.

Maggie was evaluated by an ophthalmologist a year ago. Her neurologist in Dallas recommended it because she recognized that vision and eye issues can come up with LGS kids and it was more proactive. Maggie came out with perfect vision, but her eyes were straight then. Now, they seem to drift.

Even though there are still several challenges ahead, what was most valuable about our appointment yesterday with Dr. L was her reminding me how much Maggie has grown and how much has been done since August. Maggie is improving, slowly and in a roundabout manner, but over a long trajectory, she is still growing, backslides and all. Dr. L felt very confident that Maggie will continue to grow in all of these areas, at her pace and in her way.


My Christmas wish for Maggie in 2020 is very much my daily prayer. I wish for healing for my daughter. I wish for growth. I pray that she will continue to learn, play, vocalize, and grow. I pray for sleep. I pray for her brain to heal, for the seizures to stop, and for her to be happy. I also pray for strength. Please give us both the strength to endure the hard days and the diligence to keep on when progress is slow. I pray for a Christmas miracle.

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