A bit of history

Many of you coming to the blog already may be familiar with Hollis's history, and why we had to go through this radical surgery, but for the folks just swinging through, I thought I'd give a little backstory to my brave girl.

Hollis was born with her seizures, due to a stroke she suffered while I was pregnant with her. We did not know she had the stroke at the time, but found out after she stopped hitting her milestones at about 4 months. The pediatrician we had at that time told us to wait and see what happened until 6 months. She became progressively more limited on her right side, and her arm tightened into a bicep curl and fist: we knew something wasn't right.


At seven months, she had her first MRI, and was diagnosed with a stroke, which started from a clot from her middle cerebral artery. The stroke more or less destroyed left side of her brain, leaving it scarred, and much smaller than the right side. This brain damage is what caused her seizures, left her very limited on her right side, with global developmental delays.



Hollis's seizures started off as "drop attacks", or atonic seizures, where the body quickly loses all tone, much like what would happen if a robot was switched off. If standing, she would fall, and crash into anything in her way. These drop attacks are very short, but extremely forceful. She has had more than her share of black eyes and bumps on the head in her 8 years. The seizures then progressed to tonic (stiffening), lasting about 30 seconds, and then tonic-clonic (the grand mal seizure most folks are familiar with) lasting up to 90 seconds. What started off with bumps on the head progressed into ambulance rides and multiple emergency room visits for clusters of seizures drugs couldn't break up.

We have gone through many different treatments including 7 anti-epileptic drugs, the ketogenic diet, and the vagus nerve stimulator. These made a dent in the number of seizures, which were at about 40-50 a day, but she was still having 6 - 12 a day. We eventually got to the point where surgery was the final option, and of course, we had been trying to avoid it because it is terrifying to think of putting a child through such an operation. At our consults for whether she'd be a candidate for epilepsy surgery, her neurologists and neurosurgeon said despite the radicality of the surgery, we'd be asking ourselves afterward why we didn't consider it sooner. I don't know that we would have changed our timeline, but we are definitely happy with the results we've seen so far!

Included are some of our favorite pictures of our girl, at 18 months, four years and seven years. The last photo summarizes Hollis's personality to a "T": "sassy"!

Here are two great links to find out more about epilepsy and types of seizures and syndromes. Below that is a link about childhood stroke.

www.epilepsyfoundation.org

www.epilepsy.com

www.chasa.org

Out and about

On Monday, Hollis went to Bradley Palmer State Park's wading pool. We weren't sure she would be ready for a splash in the pool, but she just lit up as soon as she saw it. She spent about 15 minutes walking around the pool, and giggling at the other kids until she was exhausted. That took about 3 hours to sleep off.

On Tuesday, we went to visit her school, the Northshore Education Consortium, in it's new location in Beverly. When we got her out of the car, she was very happy, and squealed and laughed. We got into the building and met up with her teacher, Sandra. Hollis gave her a little bit of the "hairy eyeball", and I think she might have been wondering if we were bringing her back to school for real. We went into her classroom and met up with friends, old and new, and by the time we were there 10 minutes, Hollis had enough: she was motioning for us to get going. As she was leaving, she said "Bye", and Mom and her speech therapist, Lauren, started welling up with tears, because so far, Hollis has retained everything she went into the surgery with, and has only left the seizures behind.

It was a very big day for the little lady, and she had to come home to take a nap from that one too. As quickly as she is recovering from such an enormous surgery, we always have to take a step back and realize how much her little body is still going through: she is still taking 2 hour naps twice a day, and is also sleeping about 12 hours at night. She is still having headaches, but seems to have come out of the nausea phase of the recovery. Everyday is an improvement on the last.

It takes a village...

You've probably heard of the expression of "It takes a village to raise a child", and in Hollis's case, we REALLY need a village! Both sets of grandparents have been up to help with the recovery, both in the hospital and back at home. Her, PCA (personal care attendant), Katie, and her boyfriend Brendan, and their friend, Alan came to the hospital to visit, and have been helping us at home too. We couldn't do it without all of them, and we love them all so much! I've included some pictures of our "village".

Hollis being Hollis

Hollis is really starting to act more like herself today. She's singing, throwing things, giggling, smiling, imitating sneezes and giving kisses. She has also stayed awake for three consecutive hours, as long as she has been able to since the surgery. Hollis was very pleased to knock Mom on the head with her ball, so I thought I'd share the joy of that in this video.

Chuckles

Hollis is now laughing! She was chuckling at Daddy and throwing stuff at him (very typical Hollis behavior). Everyday, a little more progress!

Grins!

Hollis smiled for the first time today since the surgery! She smiled in the car, and a couple more times when Daddy started tickling her. We managed to catch it on the camera phone. She also ate a bit more muffin, and stayed awake a bit longer: a total of about 4-5 hours, but not consecutive. Healing is hard work! She also gave a little shake of her leg while laying on the floor to "dance" to Peter and the Wolf. Lots of hard work today, and lifted spirits!

How Dunkin Donuts saved our family

Today, despite being the homecoming, was a "down" day for Mom and Dad. Hollis was not eating, under any circumstances, and wasn't interested in drinking either. She slept through most of the day, and when awake, was very angry with everyone. We got to about 6:30, and decided to take her for a stroller ride, which again, was not particularly well-received, but she caught sight of the car, and pointed, indicating that she wanted a ride (a pre-surgery favorite activity).

We took a short ride, and stopped at Dunkin Donuts to get Mom a coffee (another pre-surgery favorite), and we also got Hollis a blueberry muffin, in hopes it might entice her. She grabbed the bag from Daddy, and started digging in, and then pointed to the coffee (yes, my 8 year old loves coffee, and I'm not ashamed to admit it). It was such a huge thing to get her to eat, and a relief for us!

She was exhausted by the time we got home, so we put her to bed. At 8:00 she was due for more meds, so I gave them to her and said how happy I was to have her home, and asked if she was happy to be home: she responded with "Yay", and I just broke down into tears. It is such a relief to see even the small parts of Hollis's presurgery personality emerging bit by bit. The stress of seeing her so weak and unlike herself has been excruciating. Her recovery is coming along slowly, but it is definitely moving in the right direction.

Here is a video of Hollis with the music therapist as referenced in previous posts. The pictures are one of the windows that Grandma decorated for the 2 rooms that Hollis stayed in. I think Children's hospital wanted to hire her! The other picture is Mom and Hollis dancing to "Holly Holy" by Neil Diamond at the jukebox last night.