Quiet House...

With the seizure-free status count restarted, we are now at a week and half. Kamryn is doing well and growing like a weed. (good and bad...) She's spent sometime at daycare and hasn't given them any trouble.

Kenedy is spending sometime at her Janma's house in San Marcos this week and we are keeping Kamryn home with us. It's been pretty quiet around here, which is kind of relaxing, but sad too. No big "Mommy! Mommy! Mommy!" and hug as I walk in the door after work or school. That's okay though, she is having a lot of fun with Janma. Probably so much fun that I will end up spending several weeks deprogramming her when she gets back!

Here are a couple of pics of Kamryn this week.

1st Day at Daycare

Today was my first, full, "official" day back to work. This was Kamryn's first time to go to daycare with Kenedy. I had to be at my training early, so Scott dropped them off. All went well, no calls to or from the sitter. Kenedy said that she showed Kamryn to all of her friends and helped Leslie with her. Hopefully the novelty doesn't wear off too soon! She won't be going everyday, just kind of sporadically throughout the summer as I handle trainings, curriculum, and other work. In August, she'll start going everyday and Kenedy will start going to "school."

I took a couple of pictures tonight because I didn't have any good ones of them together. Here's a look!

Update - Wednesday, June 18

Well, I think we are back on track...

Kamryn hasn't had a seizure since Sunday morning. She's been sleeping a little more than she did a week ago, but that is to be expected with increased meds. I'm sure she'll adjust to them soon and will back to herself in no time. Hopefully, we'll get a good month or so out of this level of medicines before we have to go through this whole bit again.

Its been scorching hot her for the last few weeks, so we finally got Kenedy's water toys out. Here are some pics and videos of her and daddy playing with them on Sunday.

Enjoy!

Playing with the sprinkler ball that she got last year for her birthday.

Dad trying to coax her onto the Slip N Slide.

Swimming the pool. These 100+ days are brutal!

Scott demos the SlipNSlide for Kenedy.

(Watch at your own risk!)

Kenedy tries to SlipNSlide

A Day at Dell...

Early this morning, Kamryn started with the seizure bit again. She had one at 3:30 am, and another at 7:30 am. At this point, the neurologist didn't feel comfortable continuing to up her meds without knowing what her phenobarb levels were. (Me neither!) So, we called Scott's cousin Kyla and asked her to come watch Kenedy while we took Kamryn to Dell Children's Hospital. (The 3rd stop on her tour of Austin hospitals.) We were admitted into the ER around 9:30 am.

After having her weighed and giving her seizure history to no less that 4 different people, she had another seizure. Of course, no doctor or nurse was in the room at the time. But one did come in toward the end of it. The drew her blood to check her phenobarb levels (it only took two stabs this time!) and we found that her level was at a 24, which is low for her. Our neurologist wants it to be in the mid-30s. After phone consultation with the neurologist, they gave her a loading dose of phenobarb through her IV and have us increasing her daily dose to 4 mL as well.

We finally got home around 3 or 4 in the afternoon. She's been sleeping it off most of the day, but when she is awake, she is alert and is gobbling down her bottles. (She didn't get to each at the ER.)

We're hoping this loading dose will be enough to get us back on track. Mostly likely this is just due to her going through a growth spurt and metabolizing her medicine more quickly than she was before. She weighs 11 lb 8 oz now. She's gained over a 1 1/2 pounds in the last two weeks.
We're looking forward to a quiet night, morning, and hopefully several weeks before we have to start this business again.

Another Rough Day...

I thought we had things back in check today, after all of yesterday's mess. That was until we had a seizure at 3 this afternoon. We upped her Keppra dose from 1 to 1.5 mL after that, but it didn't appear to have the effect that the dr wanted. She had another at 7pm, followed by yet another call to the dr and a loading dose of phenobarb.
Hopefully this will get things back in line. I'll keep you updated...

Update - Thursday afternoon, June 12

After what appeared to be a normal morning and start to the afternoon (after the 4am seizure), Kamryn and I went out to get some Father's Day cards. While we were in the car, in the Walgreen's parking lot, she had another seizure. It was pretty much her standard MO, as far as the seizures go: cry, arch, stiffen, jerk, beet red, blue/ashy, gasps...

Called the neurologist and gave her a loading dose of her other medicine (keppra). We'll see how that holds her. Waiting to get more info from him. Hopefully we won't see another, but who knows anymore.

Update - Thursday, June 12 : (

The three week mark came and went fairly unremarkably, until 4am this morning when Kamryn had a seizure. It was like most of them, though we didn't see the entire thing. We woke to a cry and some noises that sounded like those during her previous seizures. By the time Scott got into the room, she was stiffened up, head turned and arm outstretched. She wasn't blue or beet red like we've seen in the past, but she was gasping for air like she had stopped breathing for a few moments.

We gave her a loading dose of pheonobarb, as we'd discussed with the neurologist at our appointment a few weeks ago, but are waiting to hear back from him as far as new amounts for the maintanence doses.

No one knows for sure, of course, but we are assuming that she is just outgrowing her medication. The dose we had her on is just not adequate anymore for her weight.

We were hoping to be done with these, but if we're not, hopefully you won't hear about another for at least another three weeks or more. It is definitely better than the weekly Tuesdays ones.

Here are some new pictures...

June 8 - Kamryn's Progress and Another Birth

We're going on 2 1/2 weeks since Kamryn's last seizure. Hooray!
She's taking 4-5 ounces every 3-4 hours and let's you know if you are a minute late in getting it to her. We're taking her to church with us for the first time today. Hopefully we won't have any outbursts. Better have the bottle ready and on stand-by ... I'll post some pictures later of her in the pretty dress Anna got her.
Yesterday, Kenedy's BFF Sarah came over while her mommy (Sally) went to go have her baby. Jacob David Kirk was born at 12:25 pm, weighing in at 9 lb 5 oz and measuring 21 inches.

Here are some pics of the girls and baby Jake.

2 Weeks and Counting

Today had 3 points of significance. The first was that it was Scott's 36th birthday. The second was that today was Kamryn's 2 week mark without a seizure. Woohoo! The third was that it was Scott's first full day of work at his new job. Double WooHoo!
Other than that, nothing else is really going on here.
I'm finally posting some photos of Memorial Day weekend, since I forgot to do that earlier.
Enjoy!