Jordyn's Fundraiser Was A SUCCESS!!

Hello, all! Jordyn's Fundraiser was a great event last Saturday! Tiff's Treats had a line full of people that wrapped around the building and it was consistently super-long all day! People waited in line in the heat to buy cookies and make donations for 3 hours or more!

I was there for a couple of hours to do a radio interview with Majic 95.5 at their Live Remote tent and took some pictures for Austin Monthly who is publishing the story for their October issue. I had also done an interview for MIX 94.7 during the prior week, which I will try to attach a clip to this blog. It was great being able to tell Jordyn's story and educate listeners on her rare syndrome. I got to introduce myself to those in line and thank them for their help with the Fundraiser. Even though the cookies themselves are well worth the long wait, the fact that their purchase went to my daughter's Wish made it well worth it for some.

I wish Jordyn was able to go to her own Benefit, but she is still healing and has a couple of more weeks to go in her cast. The doctors say her femur is mending up well. :) Her rash is also healing and we hope to see her big beautiful smile again soon as she's feeling better!

The folks at Tiff's Treats were so wonderful and we are so very grateful that they personally chose Jordyn to sponsor her wish to go to Disney World next year! A personal Thank You to Tiffany and Leon for their graciousness! The Make-A-Wish Foundation worked very hard to help put this whole thing together and not only did the Fundraiser make enough money to send us to Disney, but they made enough to help another Wish Kid with their wish!

Make-A-Wish is funding our trip next March as far as travel, lodging, and admission, but there is still room for personal donations. John and I have opened a savings account in Jordyn's name for donations to go towards expenditures in this trip Not covered (a week away from work, luggage for 6 people, special cases for Jordyn's foods, ect). Quite a few of you have already asked me if there was another way to donate, so I made it a bit easier by using

PayPal's Donation Center.

You can make a donation in any amount, and every little bit helps. You can print out the receipt for tax purposes afterwards. We've never gone on a week-long trip with a pre-teen, 2 toddlers and an infant before, so I don't know what to expect financially! LOL All I know is Jordyn and the kids will LOVE going to Disney and staying at the Disney Lodge that was specifically made for Wish Kids. They cater to these kids so well during their visits, so I'm just so excited for Jordyn!!




Thank you to all who made an appearance, waited in line, and/or made donations to the Make-A-Wish Foundation! I will update everyone on the trip details as they come, as well as Jordyn's health and any other Gomez Newz! :)


We hope everyone stays safe during these storms and hurricanes. God Bless!



Kristen, John, Jordyn, Joslyn, Jacob, and Baby J (due in early December)

Bad News and Great News!!

We have some bad news and some great news, so I’ll go ahead and get the bad out first. A couple of weeks ago, I took Jordyn in to her pediatrician to get a skin rash treated. While we were there the nurse wanted to take Jordyn’s height and weight even though it hadn’t been that long ago that we already done it. But, I lifted Jordyn onto the table to take her height measurements on this wood and Plexiglas contraption used for babies. While I was positioning her head on one end, the nurse proceeded to use excessive force on her right leg to straighten it out as much as she could and then bent her foot into a 90 degree angle. Jordyn doesn’t walk, so not only are her tendons super tight but her bones are not as strong as other 3 year olds. I told the nurse twice that her foot doesn’t bend that way and that we need to stop- Jordyn at this point was crying and shrieking in pain. She usually gets mad, though, when we do her physical therapy because she hates to stretch out her joints so I didn’t think too much about it- the nurse “knew what she was doing”. We went on with the appointment.

Later that night, Jordyn woke up crying again and for those who personally know her knows she Never cries. High Tolerance to Pain is one trait of Aicardi Syndrome, so she is rarely ever fussy. She’d scream if you touched her leg. At first, we thought that it was a mixture of her Achilles’ Tendon being sore and her rash making her mad, so first thing the next morning I called her same pediatrician and told him we needed to get her on some pain pills because of what the nurse had done to her.

Over the weekend she got worse. I took her in to the ER and to my surprise the nurse had used so much excessive force, she had managed to cause a Buckle Fracture in Jordyn’s femur bone. This seemed odd to the doctors there since kids only get those kinds of fractures from hard falls and sporting accidents. The Orthopedic doctor confirmed to them that children with similar disabilities like Jordyn’s have weaker bone mass due to not walking and that it happens. After 14 hours in the ER, the ambulance took us back home cast and Codeine intact.

That wasn’t the end, though- she’d still shriek when you’d even move her an inch. Jordyn’s usual day consists of us repositioning her a bunch of times, from her chair to the floor to the couch, etc. But now she was confined to one position on her back on the couch. Since the poor angel can’t talk we have to constantly figure things out, but we couldn’t figure out why the Tylenol with Codeine wasn’t working one bit. So another long visit to the ER, more X-Rays, and a change to Vicodin, we were sent home again only to have her screaming again. She is allergic to Citric Acid which is in EVERYTHING, so I was on the phone with pharmacists, doctors, and Pharmaceutical companies trying to get to the bottom of her constant discomfort. We couldn’t find anything in the ingredients that would upset her.

Then John, bless his heart, figured out that the pain meds were probably doing more bad to her tummy than good to her leg, so we quit the Vicodin and just had her on Tylenol and Motrin. It was night and day! Jordyn to this day is doing great and seems to be in a lot less pain. We’re keeping her as comfortable as possible and trying to get her to keep her casted leg still. Her injured leg echoes, or mimics, her stronger left one so she’s trying to move it around inside the cast involuntarily and I’m sure that won’t help the healing process any faster but we are keeping an eye on it. She still has the rash. :(

Now for the great news! About a year ago I had contacted Make-A-Wish Foundation to enter Jordyn in for a trip to Disney World. Not only were we accepted to go in Spring of ’09, but a cookie delivery company called Tiff’s Treats has teamed up with Make-A-Wish to have Jordyn their Honored Guest at their store’s Grand Opening in North Austin! All proceeds from this fundraiser go to Jordyn’s Wish and we couldn’t be more thankful! Here are the details from Tiff’s Treats Website:


Grand Opening Charity Event!

When: Saturday Sept. 6th 9:00am-5:00pm

Benefiting: Make-A-Wish Foundation® of Central & South Texas

Where: New North Austin Store at 11011 Research Blvd

What: In honor of our 2nd Austin location, we will be selling cookies for $2/dozen! All proceeds go to Make-A-Wish®. Tiff's Treats will match all cookie sales from this event as a donation to Make-A-Wish® (up to $5000).

Fun Stuff: We will insert prizes into random boxes of cookies, so every purchase you make gives you a great chance to win an awesome gift card or prize!

Cookie sales on this day are CASH ONLY. No need to call ahead, just stop by and we will have warm boxes of 1 dozen cookies for immediate purchase. Flavor choices will be limited.
*Normally, we require 30 minutes notice for a pick up order to be baked
* We are raising funds to send Jordyn, a 3 year old girl from Austin with Aicardi Syndrome, and her whole family to Disney World .

Event is only happening at the North Austin location and will replace normal ordering procedures and options. Our Central Austin location will be open for regular business.
*********************************************

Jordyn won’t be able to make it since she’s in her cast, but I will be there and would love for anyone in the area to stop by and buy some cookies to help fund the trip!


http://www.centralandsouthtexas.wish.org/
http://www.cookiedelivery.com/austin/grandopening.asp
http://www.jordynsjourney.blogspot.com/

Kristen and John

Update on the last 4 months!

Hello, all! The past 4 months have been pretty low-key concerning Jordyn. She has been doing so well! We got her a great Indoor Seating Unit from Germany that supports her back and head. She is so tall now, it's hard to find anything in the states that is not only supportive, but space-saving. She loves her chair and likes how it raises up high, away from Joslyn's Vulcan grip.

We are in the hectic process of moving into a bigger place, which will mean more room for not only Jordyn's medical equipment, but also another little Gomez! Yes, for those of you who don't know yet, we are expecting another kiddo due in December! Jordyn will have 2 little rugrats pulling at her pants and gnawing on her toes! :) We are very excited and very tired at the thought of having ONE more. :)

Jordyn was to start preschool this summer, but we decided to wait another year. We heard two unrelated cases of neglect with two girls with Aicardi Syndrome and it turned us completely off about the idea of Jordyn being in the care of someone not close to us. One little girl fell in the pool while her sitter was asleep on the couch (she is doing better, but has brain damage and constant infections) and the other young lady fell off the high changing table at her school and hit her head and body on her wheelchair on the way down and received bad bruises and fractures. Jordyn doesn't need preschool right now, but she will get therapy and schooling lessons right here at home with me, where she's safe.

Jordyn is finally caught up with the rest of her age group concerning height and weight. She's always been a bit short and skinny. She's eating well and is as tall as most almost-3 year olds. The only issue we've been having is her teeth. Her dentist has passed the reigns to another group of dentists who have access to Dell Children's Hospital where Jordyn needs her teeth fixed. She needs a lot of work with her teeth and there are only a handful of dentists who will take on a case like hers, with her under anesthesia. Once she's about 3 and a half, she'll be able to get her cavities filled and her teeth thoroughly cleaned. Between the Syndrome and her meds, her teeth have gone through a lot of stress.

I will post up/email more pictures shortly, along with updates on the newest Gomez (a boy this time maybe?) John's son Jacob would LOVE that! :)

Have a great Cinco de Mayo (our 4 year anniversary!) and Mother's Day!
God Bless,
Kristen, John, Jordyn, and Joslyn

Great Start for the New Year!

Happy 2008, Everyone! The year has started off great here at the Gomez House!

Jordyn is not only seizure-free, but she is free from the constant discomfort she has had to endure the past couple of months. First, she had really bad acid reflux so I did some Google-ing and diagnosed her with GERD and Asophogitis. A trip to the GI doctor confirmed this, so we started her on Pepcid. After that, she started doing her squirming-moaning-something's-wrong movements and after a few phonecalls to the pharmacy and drug reps, I found out that the main inactive ingredient in her Pepcid is Citric Acid. Jordyn has a major intolerance to Citric Acid, even a mililiter of it. So after switching to the pill form of Pepcid, she is feeling better.
We also started her on a low dose of Miralax to ease her constipation. Most Aicardi girls have bad constipation, so this will put her at ease. That's all I want- for Jordyn to be comfortable.
Now that she is happy, she is smiling more! She is in my lap smiling up at me right now even. :)
Joslyn has really brought Jordyn out of her shell. Jordyn is more vocal, she focuses on people more, and she even started crying the other day. She hasn't cried for over a year (except for the dentist visit when she bit down on her lip). At first I was terrified that something was really hurting her, but I sat next to her and she fell asleep as if that's all she wanted was that extra bit of attention. Joslyn must have taught her that. :) She hasn't done it but that one day, so I don't know if it will continue but I hope it does so I will finally get a clue from her that she wants or needs something. It's tough sometimes to try to figure it out on my own without any help, so I don't mind at all if she becomes a cryer! :)

We all had a great holiday break. Now that everyone's back to work I hope that I will hear an update on that new indoor seat I ordered for Jordyn. She really needs that extra back and neck support as she gets older and Taller.
John bought me a huge Ford Expedition so it's much easier to transport the wheelchair and double stroller and all of the girl's "luggage". Us gals have a lot to lug when we leave the house!

I will be looking into special pre-school programs for Jordyn soon, so wish me luck! She "starts school" in June. I've got a lot of work in front of me, trying to find the right one for her and figuring out how we're going to be able to "let go". EEK.

Happy New Year! God Bless!
Kristen, John, Jordyn, and Joslyn









Here's Jos doing what she does best- bugging her sister!