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Maggie’s Speech Evaluation (and other updates)

Yesterday afternoon, Maggie had her evaluation with Speech Language Pathology (SLP). Instead of driving to Baltimore, it was a telehealth appointment. I set up my iPad in our playroom and crossed my fingers that Hazel would remain napping throughout the entire session.

Spoiler alert: Hazel napped the whole time! Yay!

I picked up Maggie from ABA school at noon. She already ate lunch (as did Hazel and I). The appointment wasn’t until 1, but I wanted time for a little napping insurance. We drove, exploring neighborhoods while listening to Little Fires Everywhere. I waited till it was clear that Hazel fell asleep, then I drove some more. I wasn’t looking for shallow sleep, the kind that will bolt her up if awoken when stopped. I wanted her out-out. We pulled in and I carried her shoes and all into her bed. She remained out. The negative of this strategy was now Maggie was sleepy, but I figured a sleepy Maggie was better than a crying Hazel.

The evaluation consisted of a parent interview for background information, along with us trying to get Maggie to do different things. Our strategy was to jump back to parent questions whenever Maggie needed a break.

A precursor to language development, I learned, was imitation behaviors. I didn’t realize that imitating behaviors related to language at all, but developmentally, babies will begin to imitate actions before imitating through baby babble. Maggie took the drum (not at our instruction, but we were trying to work with her choices and movements). I banged it. “Hit the drum, Maggie,” I said. She did not. I took her hand and hit it, then hit it again myself. She gave me a look that said, “Mommy, I don’t perform on command.” She pushed the drum away and ran off to another toy.

“Does she ever imitate anyone’s actions?”

“Honestly, no. Maggie’s attitude generally is I’ll do my thing, you do yours.”

We tried other things. For instance, I put her pacifier in a Snapware container. The purpose of this activity was to see if she would get frustrated trying to reach it and ask for help. Instead, even though she never popped open a Snapware lid before, she popped it open after some struggle.

Problem solving is Maggie’s greatest cognitive strength. Her ability to create solutions to problems amaze me. I wondered how to help her further develop this skill, but I think that’ll come after she stops mouthing objects and continues to grow in other areas.

Maggie was tired and I don’t know if it was from the drive, the time of day, or fighting off a seizure (which didn’t come), but she began to cry. The SLP got to hear what I meant when I said Maggie doesn’t cry like a normal child. She never has. Maggie’s cry has a guttural, gurgling, h-sound to it. Her tears will flow, but her voice will not. I rocked her in my arms, answering questions and in moments, Maggie fell asleep. I gently placed her in the playroom daybed while continuing with the parent interview.

When Maggie woke up, I gave her a pat of butter. The Speech Language Pathologist wanted to see how Maggie’s mouth chews when eating something. She watched her chew, as did I, and didn’t quite understand what we were looking for. She asked me if Maggie typically leaves her mouth open a little, if she drools, if she presses her tongue forward when relaxed. I said yes to all of the above. She asked about Maggie’s tonsils and adenoids. I said her tonsils are huge and her adenoids were removed, twice. Apparently, they grow back sometimes. Her recommendation was a visit to an Ears Nose Throat doctor to see if there’s anything structural that could be affecting her speech. In addition, if Maggie’s mouth is a little open with her tongue pressed forward, that could indicate oversized tonsils. Kid mouths don’t have a lot of room for big tonsils. Either way, if we’re leaving no stone unturned, then an ENT evaluation would be beneficial. Maggie used to see an ENT in Texas, but it was all about her ears.

She told me that speech is currently waitlisted and there probably won’t be an opening for another four months or so. She told me about a colleague friend who worked with other Lennox-Gastaut Syndrome kids and said she’d email her on Maggie’s behalf. I asked if the LGS kids ever talked.

“Every kid is different. The LGS kids she had never talked and they were around ten years old, but they learned strategies to communicate their needs and wants. In Maggie’s case, she could talk or she might not. It’s hard to know what will happen.”

I wondered about learning. If Maggie never talks, will she ever read? Would she be able to comprehend speech, stories, and complex ideas? Will she be able to go beyond picture cards that represent drink and potty? Would she be capable of complex thought without the language to communicate it? No one knows. Most kids with her diagnosis don’t ever talk.

In the meanwhile, Maggie will continue to go ABA Therapy. Next week, she has her in-person evaluation with the local school system. She has weekly behavioral therapy through Telehealth. She’s waitlisted for Occupational Therapy and Speech Therapy. She’ll be evaluated for Physical Therapy sometime in the next few weeks. With respect to seizures and her ketogenic diet, Maggie successfully weaned off of Keppra so now her keto ratio has been updated to 4.2:1, which gives her a marginal increase in carbs and protein. She’ll stay put for now and in December, provided her seizures remain under control (currently 2-5 seizure per day), we can wean another medication and if that goes well, drop her ratio to 4:1. We’ll see. Right now, Maggie is adjusting to therapies, the keto diet, the removal of a medication, and life in general. All I can do right now is pray and hope for the best. I pray that these interventions will continue to help her grow. I pray that she will one day be seizure-free. I pray that she finds her voice. In the meanwhile, we’ll keep on trucking.

After Hazel woke up and Maggie got a little midday rest, I drove the girls to a park. They loved it, running around and having fun on the swings and the slide. They had fun, as they always do. They both needed a little outdoor play time.


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