Well, my friends, it has been quite a week here. The kind of week that makes your head spin and your bones ache… Where you’re weary down to your soul. I am weary.
Harper started regular occupational therapy in addition to her physical therapy this week. She was a bear for her PT session on Tuesday, frustrated and grumpy and uncooperative. She showed off her massive fit-throwing skills, a trend that has continued multiple times a day every day this week.
OT was a little better on Wednesday. She was more willing to do what she was told, and I got all the paperwork on her evaluation. It was a lot of information, but she seems to have a sensory processing disorder- she showed weaknesses in multiple sensory areas, as well as decreased core strength. While the results weren’t really a surprise, it still took me a moment to process it all. It never really gets easier to officially hear that something is “wrong” with your child. But that’s what we’re there for- to get the help we need to help her overcome these obstacles. We started implementing the first part of her “sensory diet” with a special brushing technique about six times a day (known as the Wilbarger Protocol).
Toward the end of the week I noticed that Harper seemed to be more agitated than usual- we had more fits, more aggression, more screaming. She became obstinately defiant, full of energy and getting into trouble left and right. Now, she’s normally pretty headstrong and can be feisty, but she was taking it to whole new levels. We cried together on more than one occasion! She also had no appetite and was not sleeping- no naps, major battles at bedtime, and restless nights when she was asleep.
Then around 3:00 this morning, I woke up suddenly- Harper was telling me something in my dream and it jolted me awake. She was right in the bed next to me, so I rolled over to check on her- and realized she was seizing. It was very quiet- her eyes were shifted right and she was clicking her tongue. I started timing her, and by the time we hit the 5-minute mark she was starting to twitch down the right side of her body. However, when I went to administer her Diastat, she grabbed my hand, so I waited another minute or so to see if she was starting to respond to me, but instead she began fully seizing.
The seizing did not stop with the Diastat this time, so I had to dial 911 and call on our family to come sit with the big girls. We took an ambulance ride to the ER, and on the way Harper was given a dose of Versed, which did the job. By the time we arrived at the hospital she was sound asleep and the seizing was finally over (about 30 minutes long). She was monitored for a few hours, and started vomiting as she woke up, so she was given a dose of Zofran, and then we came back home to sleep it off.
We had an incredible experience this go round… The paramedic that arrived was one who has been here before, and he was so attentive to Harper’s condition. He recognized that she was seizing even when it didn’t look like a typical seizure- his response kept Harper from having to do IVs and even heavier meds later on. The ER staff was also great- they were quick to get her set up and actually listened to me. The doctor even asked if I was comfortable taking her home, and said he recognized that I know more about her condition than they do- a huge difference from our last experience there three months ago.
We are now back home, taking it easy and planning to spend the day being lazy in our house. I’m running on about two hours of sleep, but seeing the energy Harper has after all her body went through this morning pushes me to keep moving.
We will touch base with the pediatrician Monday and then make our big Duke trip at the end of the week. Prayers are appreciated for that- Harper will have an updated MRI, and we of course are expecting everything to be stable. I also have lots of questions and concerns- we’re seeing another increase in seizures in spite of all the medication she’s on, and after being all caught up developmentally, we’re seeing some mild weaknesses and delays again. We will meet with her neurosurgeon, and we’ll also be meeting a new neurologist. Please pray with us that her scans will be good, that I will be able to articulate our concerns, and that they will listen and give us the help we need to keep moving Harper forward.
This worn-out mama is signing off now… Thank you prayer warriors for always being willing to go to the Lord on behalf of our girl! ❤️