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

Abby came home early!

I have no idea how she did it team, but Kelly managed to convince the doc to let Abby come home....even though she was only at 35 cc's an hour. Remember, the goal was 50 cc's an hour! Even the nurse came in and said, "I have NO idea how you just pulled that off!" I love it. Leave it up to Kelly to get something like that done. Apparently Kelly listed all the reasons why they should go home, and she also listed why they should stay. But after each reason she brought up for staying, she quickly gave an answer as to how she would handle that at home. Hilarious. My wifeee, the Pediatric Doctor Negotiator.

Anywho, I'm beat so I'll keep this one short. Abby was at 35 cc's when we left today. She ate a good amount by mouth this afternoon and we put her to bed at 30 cc's. We figured, why push it? Good thing too, because even at 30 cc's she woke up and was very uncomfortable so we vented her (opened up her G Tube so any excess air would come out of her tummy and ease that bloated feeling). Even though we're home, we're still a bit nervous over here. The next couple of months will really be interesting. If all goes well, we will be able to start giving her a "normal" amount of formula. I just can't imagine setting Abby's G Tube pump to a "normal" rate each night. In fact, I have no idea how much volume would be considered normal because I've never had to deal with that. But it's possible and I'm very much looking forward to that and of course to watching our little Abbers get chunky.

Good night friends.

Pops

Slow and Steady

So what do you get when you take a little girl who hasn't had a thing to eat or drink for 5 days and then give her an entire sugar filled juice box? You get a party girl! That's right, Abby kept mommy up until 5AM this morning! She may have dozed off for an hour between 11PM and 5AM but that's it. Kelly was nice enough to let me sleep and toughed it out with Abby alone. And since we have a roommate there at CHOC, Kelly didn't want to just let Abby cry it out, so she entertained Abby the entire night.

As far as Abby goes and her progress, she seems to be moving forward slow and steady. We kept her on 10 cc's of formula today and then bumped her to 15 cc's. We are going to increase her feeding by 5 cc's every 6 hours until we get to 50. She also took a little bit of yogurt today and couple sips of a milk shake too. Basically, we're looking to go home no earlier than Saturday.

Abby's spirits are better however she is still very needy. It's extremely difficult to keep her entertained ALL DAY in that little crib / bed thing she is in. Abby is not one to just sit around. Her feeding therapist Karin stopped in today and she and Kelly took Abby on a walk around the 5th floor. This was a nice break for Abby, but it's a difficult thing to do since Karin and Kelly had to walk Abby with an IV pole and tubes all over the place.

Say some prayers for momma as well as Abby. I love my girls so much and they both continue to amaze me. This hospital stay is dragging on and it's time to get the family back home. Kelly's stamina for this stuff is off the charts. Eddie and I miss our girls very much tonight and are looking forward to seeing them tomorrow.

Man I hope Abby does okay with those feeding increases tonight!

Here is a shot of Abby right after she woke up. Love the hair. The net on her left hand is to protect the IV. The tube attached to skinny cup thing in front of her is actually her G Tube and that cup is what we were using to catch any fluid that was coming out of her stomach a couple of days ago.

Here's momma and Abby on the Super comfy fold out bed that we get to sleep on.

Abby is not one for snuggling too much, unless she is really tired or sick. In this picture, she's both.

Momma tried to go to sleep but since Abby wasn't tired she would poke momma's nose, or her eyes or her cheek. Needless to say, momma isn't sleeping much these days.

Here are a couple as Abby started to feel better. She loves to put my hat on like this and see the world through mesh.

I have no idea what she's grabbing for here. Probably my camera...no dice sister.

This is the face she makes when I say, "Abby, show me your teeth!" Again...love the hair.

Hi Everyone,


So...as I thought, Abby reminded us that she was on her own schedule. Yesterday, we started her giving her 10 cc's of pedialyte through her G Tube for 2 hours and then we bumped her up to 20 cc's. It was at 20 cc's that she started gagging, refluxing and feeling nauseated. Eventually we stopped feeding her all together. It was very discouraging, but we held out for what today would bring.

Thankfully, Abby had a better day today. The docs decided to start feeding 10 cc's of formula per hour through her G Tube. As I mentioned above, yesterday we started out with pedialyte but this time they went with the formula which has more nutrients and calories, so that's good. But it's still on 10 cc's an hour. That's nothing. Just to give you an idea of how little that is, 30 cc's equals 1 ounce. You know those super small juice boxes? Not the regular size ones, the really really small ones? Well, those are 125 cc's. That means that it would take Abby 12 and a half hours to finish that tiny juice box at the rate shes going. But! She also drank an ENTIRE juice box today! In fact, after that juice box, we opened another one an hour or so later and she drank half of that one. It was awesome. She has NEVER done that before.

As I type this she is asleep and hooked up to her pump. We're still only at 10 cc's of formula, but that's alright. Last night she wasn't on a pump at all, so this is an improvement. Tomorrow we hope we can increase her pump volume to 20 cc's an hour (and maybe more?). Remember, we need to be at 50 cc's before we can come home.

We love you guys. Let's pray for 50 cc's!!!

Having a Good Morning

Alright Abby Addicts,

Things are definitely looking better. Last night, some friends of mine from church came over to say a prayer and give Abby a blessing. It was a fantastic blessing and it certainly worked. Abby slept through the night with the exception of a 3 AM gagging and retching episode. That lasted about an hour and then she fell asleep until around 7AM or so.
Right now she is not on any Morphine or Toradol AND she's napping! However, we have a lot to tackle in the next week. To go home, Abby needs to tolerate 50 cc's of formula an hour, and this is the plan to get her there:
Right now she is getting 10 cc's of pedialyte an hour through her G Tube. If she does well with that, we'll bump her up to 20 cc's of pedialyte for the following 2 hours. Assuming that's no problem, we will then give her 20 cc's of the Pepatmen Junior Formula. It's what we've been giving her at home and this ain't no "over the counter" kind of stuff people. It's the Mercedes Benz of formulas. By that I mean that it's hard to make and is especially for kiddos that have very sensitive stomachs and have bad reflux issues like Abby.
Anyway, as long as she does okay on the Peptamen for 24 hours, we'll slowly increase her dose from there. And by slowly, we're talking like 10 to 20 cc's a day. Not per hour...per day, which means we'll be at Camp CHOC til Friday or Saturday. And this is if everything goes as planned.

Thank you all for checking in. I know that all of the prayers and incredible support from you guys have been working. Abby has always taken her sweet time to get better, and yet, the difference between today and yesterday is unbelievable. I got crazy love over here for all the Abby Fans out there. If there was ever a story to testify to the power of faith and prayer, it's hers.She's is our little Miracle!

Speaking of miracles, for those of you that don't take the 55 South too much between Mcfadden and MacArthur, there's a billboard where CHOC has an add that reads, "Chances are, there's CHOC miracle in the car next to you." I love that sign. As I drove by it the other day, and tears welled up as I thought about Abby and the road she's been on(Okay fine. They didn't well up. They poured). I get this way everytime I reflect on those days, weeks, and months and especially when I think about the support we and Abby have had. I have absolutely no idea how we could be going through this journey without you guys.
And so continue the prayer requests. Pray that Abby's little tummy accepts the fluids today and especially the formula. Abby has never been a fan of following the rules, but let's hope this time she does.

-Abby's Daddy

hello all....it's momma this time (daddy is pooped),

Well today was a really rough day. Abby has continued to throw up her saliva and has started to retch and gag a lot more. (retching is like dry heaving) Today she was only throwing up every hour or so which is an improvement from yesterday. She is still in a lot of pain, which is SO HARD to see. (She's still on morhpine along with another painkiller and anti inflammatory that they have added called Toradol.) That's our baby and we are completely helpless. It's awful.

She is just absolutely exhausted since she hasn't gotten more than an hour and a half stint of sleep at one time since she had surgery Friday morning. Nor has she had anything to eat or drink. We did not start fluids today like we had hoped. The docs said that as long as she continues to vomit, they can not start any fluids. And if we don't get some food in her soon, they will have to do another surgery to put in a central line. Kind of like an IV, but for intravenous feeding. We hope and pray it doesn't come to that.

We are also concerned about all of the retching and gagging. If that continues it could tear and rip apart all of the stitches from the surgery, making all of this for nothing. Then another surgery would have to be done and the percentage of a successful second surgery is much less and continues to get less and less with each revision.

And on top of all of that, her IV went bad already, so tonight they had to take it out and place a whole new one. Never fun.

I wish that I had better news to report. We are praying hard that tomorrow shows more promise. Our Abbygirl has gone through SOOOO much already. We are ready for her to catch that break that she is SOOO due for.

Thanks for all of the love, support and prayers. You have no idea what it means to us. It is what helps us be able to endure it all. We love you

Some progress but still have a long way....

Good Morning Abby Fans,

After my post yesterday, things didn't seem to get much better. It was obvious that Abby's saliva wasn't getting into her stomach because of the inflamation from the surgery, because she was still throwing it all up every 30 minutes. And with the throw up came the use of her stomach muscles which caused A LOT of pain and so came the cry's for help. Man was that rough. Abby has a pretty high tolerance for pain, and doesn't cry very often when she falls or anything. So when those big brown eyes stare into you with that look of sincere pain and distress and the tears falling down, you know that our Abstar is in some serious pain. Thankfully, the morphine gave her some relief and allowed her to sleep a bit. We could get her to sleep about 45 minutes to an hour before the saliva would build up and she would have to throw it up again.

Abby still has her G Tube in and that is actually helping the situation. A lot of pain is associated with bloating and air getting trapped in the stomach during the recovery of a fundo surgery, and since Abby has her G Tube, we can literally open up her tummy and let the air out. In fact, right now the G Tube is constantly open and attached to a little clear cup. This allows us to see if any of that saliva is actually getting down to her tummy. Unfortunately, that cup was dry all day. No saliva was passing through....until around 5PM or so. And then some more came, and then some more! Woohoo! The inflamation was going down. Abby's path from her throat to her tummy was opening up. Nice! Can we go home now? Um....lemme think about that one for a sec....NO. Seriously, did you really think an Abby story would be that easy? Of course there's more to come. Before we go home, we need Abby to start taking fluids by mouth first and then be able to tolerate food a day or two after that. Hopefully we'll start the fluids today. We also need to make sure she's not in too much pain. And most importantly, we need to make sure Abby's pain is under control. Lately she has been dry heaving which is even MORE painful than before. The docs told us to plan on being her around 4 to 5 days. The 5 day mark is Tuesday. I don't remember the last time Abby has gone home within the time frame that the docs say during the pre-op consultation. If she does that...it will be a first.

Say a prayer that Abby will be able to take some fluids by mouth today.

Have a great Sunday everyone.

Abby is still not doing well....

It's 6:30 right now on Saturday Morning. Kelly and I have had a rough night. Abby has continued to throw up her saliva. She's done it well over 20 times. She hates to do it too and tries so hard not to, but eventually it all builds up in her little mouth and she's forced to spit it out. It's not really even a spit, but at this point, her mouth is so full that she just opens it, gags and it just pours out. Spitting it out would actually be an option I suppose, but don't forget that Abby doesn't know how to spit because she hasn't learned how to fully use the muscles in her mouth. So when all of this saliva accumulates, she has no idea how to handle it, other than to gag and retch.

What gives? We got this fundo so that nothing would come back up, but now our problem is that nothing is getting into her stomach at all. Huh? Of course we asked our nurse this question who in turn paged the on call doc. We were told that the passage way from her esophagus to her stomach may very well be blocked right now because of the swelling from the surgery. Well isn't that just swell. So I'm thinking, when we got the whole "what to expect in recovery" low down from the docs, this would have been a good tip to let us in on....don't ya think? I mean....throw us a stinkin' bone here. That was a good answer actually and much better than what was running through our heads. Since nobody threw us the forementioned bone, Kelly and I were sitting here thinking the worst....which was that the stitches from the fundo surgery were torn or something.

(For the record, my sarcasm is to be taken lightly. We have nothing but love and respect for the docs and nurses and the care we've gotten here)

Anyway, the swelling should go down after a day or two. In the meantime, she is getting Morphine every three hours to help her rest, but she is still very very uncomfortable and in pain.

So keep the prayers going friends. We're praying for the swelling to go down and a quick recovery. We hate, absolutely hate seeing her in pain and we just want her back home as soon as possible.

-Abby's Management

As of 5:30PM on Friday....

Well, we're up in the recovery room here at CHOC and Abby is in a lot of pain and she is very nauseous. She is always nauseated from the anaesthesia after her surgeries and usually collects a lot of saliva and phlem in her tummy and then throws it up. Since she got this fundo, we were thinking she wouldn't throw up anymore, but Abby has already thrown up a mouthful of phlem and saliva 8 times. We're told that this is normal, even though the fundo is supposed to keep things down, but it is still a worry. Our concern is all the stories we've heard about kiddos retching so much that they tear the stitches inside that are keeping the Fundo together. I don't think this is going to happen, but what do I know about Fundo's? And since I'm not Mr. Fundo Expert, everything is going to worry us. She is on a lot of Morphine right now which is keeping her pretty much zonked out, and she's also getting some Zofran too for her nausea.

This recovery is going to be No Bueno.

The surgery went well!

Woohoo!

The docs didn't have to move Abby's G Tube! The Fundo is now in place and as I type this we're waiting for the nurse to come get us so we can see Abby. We should only be in the hospital about 5 days or so...as opposed to being here for 2 weeks!
We did learn that Abby did have a Hiatal Hernia....whatever that is. To quote her surgeon, "it was a big mess in there, but I cleaned it all up." There was a lot of scare tissue and adhesions that he took care of. For the record, I have no clue what I just said. I'm just repeating what the surgeon said. Who cares though. The good news is that Abby is still batting a thousand and continues to be our little Rockstar.

With all that said though, let's keep the prayers going during her recovery. A fundo is no joke and it takes a while to recover. How long Abby is here depends on how well she handles food in her tummy.

Ooohhhh! The nurse is here!

More later

Well, today is the day everyone.

You know, Abby has been doing great with her communication lately. She now says "yeah" and she can tell what kitty says, a cow says and some others. She also knows to point to her boo boo's and if something is hurting her. And ever since she has learned this, we find her constantly pointing to her throat. The reflux she goes through every day as a result of not having that sphyncter must be annoying and painful. In the picture below, Abby was in her high chair pointing to her throat to tell me it was hurting....

I've been very much "on the fence" about this surgery as far as if she really needs it, but watching her grab at her neck a lot and point to it as much as she does has sealed the deal. Now we just need to pray that the docs won't need to move her G Tube today while performing the fundo surgery. As I have mentioned, if that happens, our hospital recovery time (and the discomfort and pain for Abby) will pretty much double.

Other than this crazy surgery today, Abby has been doing absolutely fantastic. That actually makes it harder to bring her in today. It's one thing if she's already sick and feeling crummy but to bring her in when she's happy and cute is rough. She has no idea that she's about to go through a very difficult surgery today and it breaks my heart. But this is Abby we're talking about here, and I know she can deal.

Check out these fun of Eddie below....That little guy is  getting into EVERYTHING THESE DAYS!

I love you all and keep Abby in those prayers today.

An Abby Fan Needs Abby Power!

Hi All,

One of Abby's BIGGEST fans, Carmen, has ran into a bit of trouble and needs your prayers. At only 34 years old our sweet Carmecita found out she had a rare blood disease, Takausu, which, among other things constricts the arteries to the heart. So...Carmen needed a double bypass heart surgery. Unfortunately, after the surgery, Carmen had a stroke and is now in the ICU at Kaiser. Her husband Albert (Bert) and Carmen's family are all hanging in there, but I thought it would be cool for some fellow Abby Fans to log onto Carmen's blog to leave some kind words for her and for Bert. Bert is holding on to these comments with both hands, just like we did during those first days, weeks and months with the Abbers. It was always cool to see comments from people we didn't know as well so even if you don't know Carmen, post away. I know Bert will love it.

www.carmenpluma.blogspot.com


PS - The surgery for Abby is still on for this Friday and I'll keep you all posted on that. Pray like mad that all the docs have to do is the Fundo and that they don't have to mess with her G Tube.

I love you guys.

Abby's Fundo surgery is back on

Hey gang,

I just wanted to let you all know that Abby's Fundo surgery has been re scheduled for, Friday, the 19th of this month.

I have some great pics of Abby trying on mommy's hat while she was in the hospital which I will post later today or tomorrow.

Take care,

Ryan

Abby is home!

Happy Labor Day everyone. I am extremely happy to say that we are FINALLY home with Abby. We got home Sunday afternoon to make our stay a total of 5 days! It was a good thing we were there on Sunday though because we got to speak with a neurologist that that we heard was great. Nobody can pronounce his last name, so everyone just calls him Dr. E. We had a lot of questions for Dr. E about Abby, especially regarding her seizure medication. Did we absolutely have to keep her on the anti seizure medication she had been getting during the past few days? Our goal was to keep Abby off any medication if possible. I don't think I've spoken too much about medication and Abby, but given her history with her brain bleeds, her shunt, her feeding tube and all of that, it's INCREDIBLE that she is not on any medication thus far. Kelly and I know in our hearts that her little fighting spirit is the driving force behind this, which is why we were reluctant to just put her on this anti seizure medication full time. The stuff was making her dizzy, and sleepy and just not herself. There is no question that it would be difficult for her fighting spirit to shine through and do what it needs to do if she were to continue this medication.

So what's the big deal you ask? Why not just take her off the seizure meds and go home? After all, it is just the first seizure, right? Unfortunately it ain't that easy friends. It's like this: Abby had a seizure at the same time she spiked a huge fever. We found out that the fever came from a Urinary Tract Infection (UTI). Fevers can cause seizures, but because of Abby's neurological history, she is prone to having seizures so the docs were not ready to say that the seizure only happened because of the fever and call it a day. Okay, fine. I'm on board with that, but why now? She's 2 years and 4 months old. Why didn't she have a seizure before? Apparently, kiddos with neuro issues like Abby can start having seizures at any time. Some will go seizure free for years and then start having them for any number of reasons. Whatever triggers the seizures is different for each kiddo. It's very likely that Abbys fever did trigger the seizure, but there's no guarantee that something else won't trigger another seizure in the future. This is why one neurologist (we saw two) said it would be a good idea to put Abby on the meds now. But Kelly and I were adamant about giving Abby every opportunity to be medication free. Look, we're not ignorant to the fact that she is prone to seizures and that she may in fact need meds down the road. But we would be kicking ourselves if we didn't at least give Abby a chance.

Thankfully, Dr. E agreed with us! He sat with us for an entire hour, answered all of our questions and was on board to let us take her off the meds. Woohoo! No meds for Abby! The only catch was that he did want to send us home with emergency anti seizure medication that is a suppository. He made it very clear that as parents, we must have good nerves, keep our cool and be able to give this medication to Abby while she is seizing. Well, this just happens to be Kelly's specialty so we're good there.

Oh, by the way...we got the results back from the EEG and were told that there was some abnormal activity but it wasn't seizure activity. Huh? Abnormal activity but it wasn't seizure activity? What does that mean? I don't think I really got an answer on that. What we did learn though was that it's better to get one or two more EEG's done on Abby in order to really use this information. For example, if we got an EEG done in a couple of months during a time when there was no seizure stuff going on, but we still found the same "abnormal activity" we would then know that this is just Abby's normal activity. If we don't find the same "abnormal activity" then we'll know that what we saw this past weekend was in fact seizure related activity. Gggggrrreeeaaaaat.... You all saw the pics of Abby hooked up to those wires. Did she look like she was having fun to you? And we get to do that again? Nice. All I know is that Abby's been dancing to her own tune since she got here, so as far as I'm concerned, Abnormal is just short for Abby Normal.

So let's see, what else? Oh yeah. The medication she was on to fight the UTI actually gave her diarrhea, which is bad news for the Abby Girl. You guys remember what happened the last time she got bad diarrhea? That's right, since she doesn't drink very much and can't tolerate very much fluid at one time through her GJ Tube, she got super dehydrated and we spent some time in the hospital because of it. Thankfully we were still able to get her home and we seem to be getting that situation under control.

Well. I think that's it. This concludes yet another incredible fight with Abby in the red corner and The Odds in the blue corner. After a respectable effort by her opponent, Abby has once again beaten The Odds. Nice work Little Miss Magic. Now get some sleep. You got another big fight coming up and you need your rest.

Man I love her.

More on Abby...

Okay,
So I realized I made an error in my previous entry. I said that Abby's docs thought that maybe Abby was having a "feveral seizure" when in fact it's called a "febrile seizure." Ooops. What can I say? I was super tired. All of you that are in the medical field must have gotten a good laugh from that one. Anyway, we got more info from the docs on febrile seizures and it doesn't look like that is what Abby had. A febrile seizure can only last up to 15 minutes and Abby's lasted for 2 and a half hours. Also, it seems that febrile seizures only happens to children without any neuro issues. For more info on febrile seizures, click here. We learned instead that Abby had a Simple Partial Seizure. Take a look at that link as it perfectly describes what happened to Abby.

In an effort to figure out why Abby had a seizure and how prone she is to having one again, she got an EEG. An EEG records brain wave activity. This will give the docs information that will help them figure out more about Abby and how much seizures will be a part of her life. It is very important that the patient stay still during the EEG (which took about 20 minutes) and luckily, Abby was exhausted so after the electrodes were placed on Abby's head, she fell asleep. But the moments leading up to that were no fun. Take a look at the pics below.





Abby is NOT happy about the paste they were putting on her head to keep the electrodes on...



She was even more unhappy about the wrap they put on her to keep the electrodes in place....



She wasn't THAT upset though. A few moments later, our little Abbers was conked out and had a great nap.

As far as the fundo surgery is concerned, it's definitely on hold for now. Once Abby starts feeling better and we get some answers from the EEG and the seizure question, we hope to get Abby home.

I am home with Eddie right now, but I just spoke with Kelly and Abby is feeling a lot better. She had another nap which was about 3 hours and even went for a little walk around the halls. It was a bit much she said though, and now Abby is a little cranky and needs to go to sleep again.

Eddie by the way also spiked a fever last night around 2AM. The poor little guy had about a 101 degree temp. He's doing much better tonight thankfully but still not 100%. I think he got what Abby got. Tonight he ran into Abby's room a couple of times and looked around as if to see if Abby and mommy were in there. He misses them and I do too, so let's all pray and hope that Abby can come home tomorrow or Saturday.

I will let you all know the results of that EEG and what we can expect with regards to seizures as soon as I know something.

Love you all.

- Abby's Management

Curve Ball!

Abby woke up at 9AM today and the entire left side of her body was flexed and twitching and even her head was turned to the left. She couldn't focus her eyes on Kelly and she was even grabbing her left arm with her right hand in an effort to stop it from shaking. Abby was having a seizure. What? A Seizure? But aren't seizures quick? Abby's twitching was continuous and wouldn't stop. Kelly called me in tears to let me know what was going on, grabbed Eddie, still in his pj's, and headed to Abby's pediatrician. Yep - Abby was indeed having a seizure and Kelly was asked to bring Abby straight to the ER. They gave her Ativan which really helped. The left side of her body finally relaxed, and the twitching stopped. Needless to say, Abby was exhausted from the 2 and half hour long seizure. We were admitted to CHOC and were asked to stay the night.
So....WHY IS ABBY HAVING SEIZURES???? We know that it is common for Cerebral Palsy kids to have seizures, and we were happy that Abby was fortunate enough to escape these. So why now? Well, there are a couple of possibilities. The first thought that Kelly and I had was of course the worst possible scenario, which is that her shunt could be clogged and/or her CSF, Cerebral Spinal Fluid could be infected. Thankfully, after reviewing the CAT Scan that was done on Abby in the ER, the docs concluded that the shunt was not infected. In fact, Abby's neurologist said it the best CAT Scan he's seen on Abby yet. And when he took a sample of the CSF, it wasn't cloudy (which indicates infection) but instead it was nice and clear. We'll know for sure if the CSF is infected tomorrow (Thursday), but Abby's doc is saying there is a 99% chance that it is NOT infected.

This is all good news but we still don't know why Abby was seizing. Her neurologist said that it's possible that Abby was having a feveral seizure, which is a seizure caused because Abby is getting really sick. He's not sure on that though and will have more answers (hopefully) for us as time goes on. Sure enough though, Abby spiked a fever after we got to the ER and has been vomiting and dry heaving all day long. So tonight the goal is to pump Abby full of broad scope antibiotics in case the CSF is infected and we also need to curb all of her nausea and vomiting.

And of course, the million dollar question is...what does this mean for the surgery on Friday? It is most likely going to be postponed. Abby just cannot be sick during the surgery and since she's so sick right now, it's not likely she will get healthy enough for a surgery in two days.

So that's the curve ball. But with all the prayers and faith that Team Abby generates, I'm sure she'll get through it. She's our little Rockstar and she always pulls through. Abby's momma is also a rockstar. I showed up to the ER and didn't get a chance to see Abby twitching and seizing but that's got to be a scary sight for any parent to go through. And thank Goodness for Kelly's parents. Cindy and Cliff, you guys rock too. They have been by Kelly's side to help with Abby and Eddie since the appointment with the pediatrician this morning. Thanks guys! We love you!

Alright then my friends, this is your cue. You guys know what to do next.


Ryan

This Friday is Surgery Day

Hey Team,

The last couple of weeks have been great. Abby is doing fantastic, Eddie is growing like a weed, and we have been going to the beach and the pool as much as possible. Abby is doing really well with her eating. She is quite the snacker these days and is often asking to try bites of whatever it is we're eating. Eddie...well... he is not so much a snacker as he is a vacume. The kid will try anything, but make no mistake. He'll spit it right out if he's not into it. Abby is very much into music. I'm not sure if I've mentioned this before but it's been going on for a while. When she hears a song she likes, she throws her right hand up and shakes it around in the air. The most recent addition to her dance moves is this bounce she does where she bends her knees and everything! And going back to what we all know the docs said we could expect from our little Abby, we all know that this is just one more little miracle! Need less to say I was in tears and so was Kelly...and my sister...and pretty much everyone else who saw her do this.

This Friday is the surgery for the fundo. For those of you who have forgotten what a fundo is, why Abby needs it and all the issues that go along with this surgery, scroll down to my previous blog entry and read on. (Man, I really got after it last time huh?) The surgery will be at approximately 10AM on Friday. I will do an update from my blackberry as soon as it's over to let you all know how it went.

Thanks....yet again....Abby Fans, for all of your continued love and support for our little girl. Thanks to those people gathering around a computer at work to check in on her and enjoy the latest pics, and to our old friends whom we haven't spoken to in years but still take the time to keep on on Abbers, and then of course to the people who have just come across this blog somehow and got bit by the Abby Bug like the rest of us and have stayed on ever since. However you came upon this story, thanks for staying with it. It means the world to us and we love you for it.


And now...take a look at Eddie giving Abby not one, not two, but multiple kisses!