I noticed that we’ve started a trend. All of Hattie’s BIG appointments tend to fall in October. I think it’s because she was born in May… We received her diagnosis in July… and then there’s usually about a 2-3 month waiting period to get in as a new patient which = OCTOBER. Then we have annual visits with a lot of doctors and all of the big appointments tend to fall around October.

Anyways…

Lots of big things happening over at the Heasley household.

Seizures

We had been noticing a lot more seizure activity with Hattie over the past few months. We changed her meds up a bit, but we noticed the seizures just seemed to get worse. Her neurologist decided to schedule a 24-hour EEG so they could monitor her little brain for an entire day. Those that are not familiar—an EEG (electroencephalogram) is where they put tiny probes on Hattie’s head to detect her brain activity. If Hattie has any kind of seizure, it is detected on the EEG. In the past, most of Hattie’s EEG’s have been fairly normal, but this time many seizures were detected.

As I was sitting with her in the hospital room for 24 hours, I had a button that I was told to push every time I saw any kind of seizure activity. There was also an overhead camera filming her, so the doctor old me to talk out loud with anything I was seeing…

“Small jerk, myoclonic seizure. Lasted 1 second.”

“She seems to be zoning out…I think this is an absence seizure… not responding to me… lasting around 5 seconds.”

Then a big one… “She is turning dusky blue…She is not responding…her lips are smacking…eyes glazed over…lasting 3 minutes.”

As I type this out loud I’m realizing just how numb we’ve become to Hattie’s seizures. I didn’t even freak out when she was having these seizures. I just knew that the doctors needed the information and I needed to tell them what I was seeing.

A couple of weeks later…

We got a message from our neurologist saying that we needed an immediate visit with her.

As we suspected, Hattie is having hundreds of seizures a day.

Her neurologist suggested that we wean off of one of her seizure meds, and move forward with a Ketogentic Diet. I am still learning about the Keto Diet and how it helps with seizures…but her doctor said that she is a perfect candidate with the type of seizures that she’s having.

I’m trying not to think about the future and the “what if’s”. I KNOW that God has GOT Hattie. He has the most perfect plan for her. We have trusted in Him so far, and I know that whatever happens will be the best, for her.

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School

Hattie’s school has been nothing but amazing. Every day I’m blown away by the attention they give her, and by how much they truly know her. Her teachers and therapists are actual angels, and I’m so very thankful that we ended up where we did.

Orthotics

No huge news here, but Hattie got new AFOs (Ankle Foot Orthotics)! These will help her little feet stay in line while she’s in her stander or doing any kind of weight baring activities. We also surprised David with some Dallas Cowboys printed AFOs!

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Thank y’all for following along with our journey with Hattie. We love you!!!

-The Heasley fam