Where do I even begin? It has been a CRAZY 6 months… I’ll try to cover the big things, but a lot of life has happened and I definitely might miss some details! Just know that every week we say “gosh we need to update the blog…” and then life just gets crazy- I know y’all get it!

Seizures & Keto Diet

In the fall of 2020, we felt like we had exhausted all efforts with Hattie’s seizures. She was averaging about 100+ myoclonic seizures a day. And then having 1-2 BAD focal seizures (turn blue…unresponsive…limp etc..) a week, sporadic absence seizures, and every once in a while, cluster seizures (combo of focal and myoclonic).

We were sad. Our little Hattie was struggling, and it was just hard on everyone.

One road we hadn’t explored yet was the Keto diet. This is an “old” seizure remedy that has been around for years. We were told by our Neurologist… it’s a 50/50 chance that it would help. But before starting another serious med, we figured we would give Keto a try.

It was super intimidating at first. ALL sugars had to be eliminated. Which meant most of her liquid medications needed to be converted into solid pills which included crushing, and all these new kinds of tricks to administer meds. We had to measure formula, give extra water, and do night feeds… it just all seemed so intense to us, but we had to try it.

It was a rough start.

We had to jump back and forth between ratios of keto and regular formula… lots of appointments with her Keto doctors and dietitians and lots of barf. I’m talking LOTS of barf (Keto can be really hard on kiddos’ tummies at the beginning).

You wouldn’t believe how much stuff has sugars in it. Our lotions, bath soaps, medicine, sunscreen, creams… the list goes on. We had to perform some major alterations to our everyday routines.

After we got it down...and perfected the ratio… it was honestly pretty easy. It just became our new normal.

After being on Keto, Hattie’s myoclonic seizures have decreased from 100+ per day to 10+ per day… her BAD focal seizures have decreased from 1-2 per week to maybe 1 per month, usually when she’s tired, has a cold, or is way over-stimulated.

We are thankful.

March 11, 2020:

Just when we thought Keto was eliminating all of her seizures, we got a call from Hattie’s school. “Hattie had a seizure for almost 6 minutes… she’s okay… we did have to administer emergency meds, and we are having a hard time keeping her oxygen levels above 70’s & 80’s. We’ve called an ambulance, can you be here soon?”

Luckily David was around to take Shiloh- so thankful for his job and for his extremely flexible hours-… I drove 100+ mph in my minivan down 470. A normal 25 minute drive took me 15 minutes. I pulled up to Hattie’s school and saw firetrucks, ambulances, and police cars… Seeing the blue and red lights brought back some bad memories. That was my baby in there. All of those people where there because of my baby. I pulled in, halfway through a handicap spot, and the lines…. Hattie’s nurse and teacher’s assistant greeted me at the front of the school. They took my hand and ran with me inside.

There was a line of staff greeting me. For one of the scariest moments… Hattie’s school made me feel so safe and comforted. I stepped inside Hattie’s school for the first time- because of COVID. I walked into the nurses room to see Hattie, limp as could be, pale faced and blue lips… and her sweet teacher cradling her as I would myself. I immediately started crying, and grabbed Hattie. If I’m honest, she didn’t feel alive. Those emergency meds knocked her out. But as I held her I could feel her little chest rise and fall in my arms, and it gave me a little bit of comfort. As I looked up… I saw about 15 people staring at us. Paramedics, school nurses, Hattie’s therapists, teachers, and other school staff. They asked me so many questions… I don’t remember a lot… but I do remember Hattie’s teachers and everyone else at school SEEING me struggle, and stepping up in that moment. Hattie’s nurse talked to the paramedics, and walked me to the ambulance. She said she was praying for me (she goes to our church) and was just so comforting. I will forever be grateful for Hattie’s school. We are NEVER leaving 

Once I was in the ambulance with Hattie… I felt safe. They were originally going to drive me to the closest hospital and I said “nope… drive us to children’s please”… and they said “but that’s 30+ minutes away..” “Yes I know.. it’s okay. They know us there.”

It’s amazing how much you STILL have to advocate for your kids even in these cray circumstances.

Anyways.. Hattie ended up being okay. We spent the night in the hospital, and Sho Sho & Daddy came to wave to us from the window.

I started taking more diligent notes on my phone of when Hattie had her seizures, what they looked like, what was she doing that day etc. Most of the time she has a focal seizure if she is getting sick but lately we’ve noticed that it has a lot to do with the barometric pressure and the weather. Hattie tends to have the most seizures in the spring, when the weather is wonky.

Screen Shot 2021-10-02 at 3.41.53 PM.png

Screen Shot 2021-10-02 at 3.42.05 PM.png

Screen Shot 2021-10-02 at 3.39.18 PM.png

Screen Shot 2021-10-02 at 3.41.15 PM.png

Screen Shot 2021-10-02 at 3.41.05 PM.png

Screen Shot 2021-10-02 at 3.40.03 PM.png

Screen Shot 2021-10-02 at 3.41.43 PM.png

Screen Shot 2021-10-02 at 3.40.54 PM.png

HIPPOTHERAPY:

Hattie has been doing hippotherapy for almost a year now!

Hippotherapy: Hippotherapy is a form of physical, occupational and speech therapy in which a therapist uses the characteristic movements of a horse to provide carefully graded motor and sensory input.

Since starting Hippotherapy we have seen a huge improvement on Hattie’s core control, communication, and fine motor skills. Hattie tells her horse, Pickles, to “go” by looking at a card that says go.

Screen Shot 2021-10-02 at 3.40.32 PM.png

Screen Shot 2021-10-02 at 3.44.52 PM.png

Screen Shot 2021-10-02 at 3.40.23 PM.png

SCHOOL:

We still adore Hattie’s school. Her teachers said that she is overall happier and more attentive this year. I credit that a lot to her seizure control with the Keto diet! I also think she’s just growing up, and her stamina at school has just been a lot better.

SPEECH:

Right now we are working on getting a communication device for Hattie. She is using something called “eye gaze” technology where she looks at an iPad at different choices, and is able to tell us what she wants just by looking at it. She is BLOWING US AWAY with this. She is starting to get really good at the words “go”, “stop” ,”more”, “all done”, “iPad”, “book” and of course “Little Baby Bum” (Her favorite show).

HIPS:

Now for some rough news - We found out a few months ago that Hattie’s little hips are dislocated. This is common for kids that do not walk, but we were really bummed to find out this news. We met with an orthopedic surgeon and he basically said that if she doesn’t have bilateral hip surgery, she will never be able to walk. She could also develop pain when she’s older and it can get really difficult to manage. By getting the hip surgery, we are giving Hattie the chance to walk. Will she walk? We don’t know. But at least she can have the opportunity to try, and we really do believe that someday she will. Surgery is set for October 22nd at Children’s. We have been told that this is probably the biggest surgery that Hattie will ever have. It’s about a six-week recovery time, and it is not easy. Please joining us in praying that everything involving the procedure will go smoothly, for pain to be managed afterwards, and that God can ease our nerves leading up to surgery day.

Screen Shot 2021-10-02 at 3.44.41 PM.png

Screen Shot 2021-10-02 at 3.44.29 PM.png

Screen Shot 2021-10-02 at 3.40.40 PM.png

All our love,

Abby & David