Hi everyone,

So this week started off a bit NUTS. At 10PM last Monday night, Kelly went in to check on Abby and our baby girl was having her second seizure. She was sitting up, her left side was twitching simultaneously again, and she was very out of sorts. Oh, and she was dripping with sweat, which means that she was probable seizing for quite some time.

Remember that the last time Abby had one of these, we were put in the hospital for a week. The only way we were allowed to leave without putting Abby on any anti seizure medication long term, was if we promised the doctor that if she did have another seizure, we wouldn't freak out. He said we would need to remain calm and be able to give Abby this emergency medication (it is actually valum) to stop the seizures....rectally. And immediately after giving her the meds we would have to call 911 to make sure that it stopped the seizure and that she didn't have a reaction to the medication itself.

And of course, Kelly did all of this. She gave Abby the medication and she called 911. That call got Kelly and Abby a ride to the hospital in an ambulance. Check it out...

The medication knocked Abby out which was good because she needed to rest. Once we arrived at the hospital, her blood was drawn to check for any infections and they placed a catherder to get a urine sample to test for a Urinary Tract Infection. It was no fun.

The blood draw was no picnic...let me tell you. The nurse didn't use numbing creme or anything AND she had to poke both hands to get enough blood. It was horrible because she also tried to put an IV in Abby after she barely got enough blood. Abby was no longer in her nice slumber at this point... she was SCREAMING! It was killing me.

Thankfully, all the tests came back negative and we were able to go home that night. And by night I mean at 3am. Abby was pretty awake by then too but still under the affects of the drugs. She didn't want to go to sleep when we got home. I think she was so overly tired and still out of sorts. Kelly tried numerous times to get her to sleep but to no avail so I ended up grabbing a pillow and a blanket and I slept on the floor by her crib to get her to fall asleep. It worked and Kelly woke me up shortly after Abby fell asleep and we finally got to bed ourselves at about 4:30 0r so.

The docs sent us home with a prescription for Keppra, which is an anti seizure medication. We were hoping to keep Abby off anything like this, but it seems that she needs something now. She is on a very low dose of it, which is good because the side effects of the medication are awful. It makes you dizzy and drowsy and very irritable. We're told that some patients get used to the medication and the side effects can wear off. We are praying that Abby is one of them. She is just not herself on it. It makes us really sad.

Alright then, on to some good news. Man, this is turning into another marathon post, huh? Anyway, Abby gained 1 and a half pounds since her fundo surgery! She is now at 21 and a half lbs. It's working team. Abby is keeping her food down, she's not throwing up to the point of dehydration when she gets sick and we have actually been increasing the amount of formula we give her at night, and she's been tolerating that as well. Woohoo....Abby the chunky monkey. I can't wait!

And finally, we did the Halloween thing of course. It was a great night in our neighborhood and we certainly enjoyed our little munchkins. Take a look at my slide show below.

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Make a Smilebox slideshow And that is it....I promise. We love you all and hope you had a fun and safe Halloween. -The Management

Germs Everywhere...

What's going on out there?!

We have been sick sick sick over here. First Eddie got it, then Abby and then mommy. It's a terrible one too and while the worst is over for everyone, the runny noses and the coughing is lingering for the kids. This was Abby's first real cold after the fundo surgery. So here's the good news.... now that she has the fundo she cannot throw up. But wait...let's back up a bit. Here's how Abby's colds used to go. She gets sick, her nose gets runny and when she sleeps a bunch of snot and saliva collects in the back of her throat. And since our Abbers does not know how to handle all of that junk (ie "hock a loogie"), she would eventualy gag which in turn would turn into a full on throw up session. And after a few too many throw up sessions, we found ourselves in the ER because she was so dehydrated.
Okay...so back to the here and now. She's sick and everything is still the same as far as the snot and saliva accumulating and her having to gag it up. But now, the gagging doesn't turn into vomiting. Ironically though, the gagging now is much more fierce and sounds terrible. And here's the kicker...when Abby finally gets all that mucus and gunk out of her throat, she doesn't think to open her mouth and spit it out! So she swallows it and we're back to square one. This was how every night went all week this week and Kelly is exhausted. Not to mention she had to deal with her sick little kiddo's when SHE was super sick. And we all know how needy sick kids can be.
But then, it's no secret that Abby gets her "Rockstar" will and fight from her momma, so, in true Killer Girl fashion, Kelly powered through.

As far as Abby's eating goes....I'd say it's going slow and steady. The fundo is still pretty tight so it's hard for Abby to get food down into her tummy. I'm thinking this will take about 4 to 6 months or so before she can really start eating. As for now though, the exact same thing happens with her food that happens when she's sick. She gags on whatever she has swallowed and it comes back up. The good thing with the food though is that she does remember to open her mouth and let it out. And another good thing is Abby still likes the taste of food and she likes to try new things. By "try" I mean that she'll suck and chew on whatever we give her and then, of course, chipmunk it in her left cheek. We usually have to fish it out after a while. That's alright though. I'm just happy she likes to try new foods. A lot of times kiddos like Abby shut down on the eating all together because it causes more pain than anything. Personally, I think Abby watches her brother and does not want to be out done by him! Don't tell Abby, but I think that maybe, just maybe, Eddie has a slight lead in the eating department. See below...

"Ah yes...This is my favorite seat in the house."

So anyway, things are pretty much "normal" here at Casa De Gaya. There's always something going on! Oh wait, I'm not done. Kelly and I took Abby up to CHOC in LA for her foot / ankle brace consulation. We all know that Abby has difficulty with the left side of her body. I haven't mentioned this before, but the technical name for that is called hemiplegia. This brace will help Abby gain more balance and force her to foot make the correct kind of step. Right now, when Abby takes a step, she puts her left toes down first instead of her heal. She also tends to bend her foot so more pressure is on the outside. We need her foot to land heal first and for Abby to distribute her weight evenly instead of favoring one side. The brace is supposed to help all of this. It will be here in 3 weeks and yes...Kelly ordered it in PINK! Love it.

And now...some more pics of the lil Gaya's...

Here's Abby snacking on her favorite treat...chips! More specifically...Nacho Cheese Dorritos

Look at the doo! Bed head to the extreme! Hair everywhere!

Here are Abby and Mommy at the Laguna Hills High School football game

At 15 months, Eddie still doesn't have much hair and I didn't want him to feel alone.

Eddie found his calling

He was having a blast inside the kickers practice net

Abby was walking all over the place. This is her giggling at me as we were playing Chase Abby.

A lady that was taking pictures of the game with her super snazzy camera took a few of Eddie and me and then some of Abby when she was over by the cheerleaders...they are awesome!

Abby was loving the pom poms

Look at that smile!

Abby's New Blog Look!

Hi Everyone,

I hope you all like the new blog look. It's become quite addicting so I will be messing around with a bit more. If you see something out of whack, that's only because I'm trying something new and have clearly not done it correctly! This is a definitely a "trial and error" situation.

It's been fun though and I hope you like it. I have some more projects to tackle this week so keep checking in.

By the way, Eddie and mommy are sick, but Abby and Daddy are holding strong. Abby went to a friends birthday party yesterday that had a bounce house. She LOVED it! She was falling all over the place and giggling and having a blast. It was fun to watch her, but then....it's ALWAYS fun to watch her.

Have a great Sunday Abby Addicts.

Abby and her new Fundo

Hi guys,

Abby has been doing okay with the new fundo. She is still getting used to it and she gags and coughs and chokes a lot but it seems to be working. And by working, I mean she hasn't had any reflux or thrown up. But she does chipmunk her food still and since she gags so much on her food now, it seems like she is taking an extra long time to swallow the food that she chipmunks. Before the fundo, she would still chimpunk her food but she eventually swallowed it. Now, it takes FOREVER for her to swallow it. And what's worse, I am starting to find little spit ups of food on the floor. It's like when a kid (let's call this kid Eddie just for kicks) has to poop so he finds a section of the room where he can brace himself with something and then make a very intense face. Well, Abby finds a place, looks around with these huge eyes that say "I'm gagging" and then opens her mouth and lets the food fall out. The good news is that she knows to put her head down and open her mouth. Believe it or not, she didn't always do this when she gagged. She would actually put her head back, keep her mouth closed and....yep...you guessed it...swallow it again. Then she'd look at us and her face would say, "Oooooh... Nasty! Why did I just do that?!"

So anyway, it's going to take some time for Abby to get comfortable with the fundo and for all this gagging and everything to pass, but I am confident she'll get through it. She always does. In other news, she started therapy again today. Thank Goodness too because she has definitely taken a step back with her left side. She's falling all over the place still and her left hand, while better then a week ago, is still behind from where it used to be.

Now that the fundo is in, and Abby is back in therapy, I feel like we can actually think about the possibility that she will be able to have her G Tube removed some day. As Abby gets better with eating, we'll be able to slow down how much we feed her with the G Tube and then talk about taking it out. Woohoo! That will be soooooo cool.

So...let's pray that Abby learns how to eat without gagging so much and starts swallowing her food better.
You guys rock. Thanks for being there for us during her seizure scare and the fundo surgery. I will keep you posted on her progress with her eating.
Have a smashing week.

The Abby Daddy