The Past Week

Has been a rough one. Late last week, we found out that Liya's baseline (20 minute) EEG was normal. Why is that a bad thing? Well, it's not...it's just that she is still having seizure activity. Normal EEG or not, she still has at least one small one a day. Yesterday she had two. They are quick, and don't seem to bother her at all. But they bother me. I recently found out that half of epileptic patients have a normal EEG. Well, that stinks! You'd think they'd have come up with a new way to diagnose these darn things! 

Liya at her cousin's birthday party. She swiped his new hat:)

We will see Liya's neurologist in a few weeks, and I'm sure he will order what they call an ambulatory EEG. She will wear the electrodes and a small cassette player-looking-thing for at least 24 hours. Maybe they'll catch one of the little buggers on that thing! In the meantime, we are just monitoring her seizures and making sure she is safe.

On Saturday night, I found my doggie of almost 13 years had passed away outside in the yard. He always comes inside at night and when it's hot/raining/etc. When I went out to bring him in, he was gone:(  Rocket was an Australian Shepherd, and the best darn dog a family could ever ask for. He excelled in his obedience classes as a pup. He was gentle and got along with other animals of every kind...even our guinea pigs (well, he sniffed them and walked away, but that's kind of getting along with them). At the end of his life, Rocket had lost all of his hearing, and some of his eyesight. I know almost 13 is pretty old for Aussies, but we still weren't ready to let him go. So we grieved, and we still grieve for our fur-baby. Grieving worst of all is our 6 year old pointer-mix, Tilly. She is taking it so hard. Rocket was her world. Now we may need to find a new buddy for her. When we are ready.

But not everything went wrong this week. Some good things happened too. We are making plans to totally make-over our backyard. We'll be putting in a pond, flower beds, a fire pit and seating area. Oh, and a zipline for the kids. Can't forget that zipline! The kids are so excited to be a part of the make-over. More excited than we are. Maybe we should let them do the whole thing themselves! That'd be a sight!

RJ helping with the leaves:)

We also did some cool fossil digging at a nearby phosphate museum. We found nearly a dozen sharks teeth, some stingray mouth plates, and stingray vertebrae. Liya even found a tooth on her own! When she found it she yelled "Look, I found Shamu!!". Evidently, all shark teeth come from Shamu....who isn't a shark. I was just impressed that she made the connection from shark to Shamu. Gotta love that girl!

Liya modeled a cute, albeit a bit short (thank you very much, growth spurt!) dress for a Facebook Boutique today. Even though it's short, she will get plenty of wear out of it...with shorts/leggings/etc. Came with a matching hat. Adorable.

Maybe tomorrow will be the start of a week that is totally awesome. We are going to one of the Disney Parks tomorrow after school, so that is a great way to kick it off. 

Tune in for pics:)

Amy

About Liya's Seizures

Ever since I posted a status update about Liya's seizure activity on Facebook, I have had a ton of emails and phone calls from startled friends and family.

So I figured I should tell the story from the beginning to put things in perspective.

When we were matched with Liya back in the summer of 2009, we knew only that she had lost all of her toes to frostbite...and that she had some right-sided weakness. The doctor who reviewed her file mentioned that she might have had a stroke that caused the weakness. So we were prepared for that issue as well. We researched hemiparesis and hemiplegic cerebral palsy, and learned that a large percentage of CP kids also develop seizures due to damage to certain areas of the brain. We hoped that Liya wouldn't be one of them.

Shortly after meeting Liya, and while still in China, we noticed she would do this "shiver" thing. She would immediately realize she did it, and we soon nicknamed these episodes "Jerks". We didn't want to have her say they were seizures until we knew in fact they were. 

So for months once home, Liya would let us know whenever she "Jerked". It happened occasionally, maybe once a week or so. I took her to the neurologist, and he didn't seem very concerned. I pushed the issue, and he finally wrote a prescription for an EEG.

Of course, Murphy's Law had to happen, and we found ourselves without medical insurance for several months. During that time, Liya started having different episodes. She would freeze wherever she was, put her hands over her mouth and then run for whoever was closest to her, screaming as if she had seen a ghost! We weren't sure if it was seizure activity or maybe she thought she was going to throw up. These episodes soon took over as the more common ones, happening weekly.

About a month ago, Liya had several episodes in just a few hours at school. It so happened that she had JUST been accepted into Children's Medical Services, a government funded insurance...like Medicaid, but for kids with chronic medical conditions. 

So I got that EEG scheduled, and that is where we are now. A few weeks ago Liya started a new type of episode, where she tenses up her right arm, is unresponsive, and her eyes cross. She does not know that those ones occur and always just picks up what she was doing before it happened.

Tonight, she had an episode where both of her hands shook uncontrollably for about 15 seconds. This is the first one we've noticed where BOTH sides of her body were involved.

Liya's Neurologist has been out of town until today, and he will be looking at her EEG tomorrow. I am pretty sure that the results will be abnormal, and that I will be getting a call tomorrow. If this EEG is normal, I will be getting a second opinion.

I will update here as soon as I know something!!