Back at the pool

We took advantage of the nice weather today and went to the wading pool again. I believe that the entire population of the North Shore also had the same idea, if they weren't going to the beach instead! It was a bit crowded, but Hollis loved it anyway, especially dodging all the little kids who were swimming around her feet like fish. This girl is a total water baby, much like her Mom, and would probably spend every day in a pool or at the beach (even in the winter)! She is still easy to tire, and we only spent about 20 minutes before she was worn out and told us she needed to go.

Dancing with Daddy

Hollis is starting to get some of her copious energy back. She only took one two hour nap today, and her headaches seem to be further apart. We were able to switch from Tylenol with Codeine to plain Tylenol, and that probably helped with the sleepiness too. This switch also made her less itchy, one of the common side effects of many of the opiate meds like Codeine. She was goofing around with Daddy a lot today, with lots of giggling, and at the end of the day, we restarted our nighttime tradition of dancing before bedtime.

Eating like a horse!

Hollis is making up for lost time in her eating, which is a very good thing, because she is too skinny to start with. She inhaled 2 donuts this morning, followed by pepperoni, and then for lunch, she ate half of Dad's cheesesteak sub. The best, though, was the garlic and olive oil spaghetti, which she fed herself. Here's a video of her chowing down.

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".