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!

Belated Jordyn Update!

You can all imagine why this update is a month late! The newest addition (My mom calls her "Trouble", lol) is keeping us on our toes, for sure. She is a little goofball, like her mom and dad.
Everything around here has been pretty calm and even-keeled, considering how busy we always are here. Jordyn is still seizure-free! In November, it will be a whole year since we started her on the Depakene-Phenobarb-Zonegran cocktail, so I'm thinking about throwing a little party in her honor during that month. I'll keep you posted.

This will be a busy month for her (and me!) I'm trying to order her a new indoor-chair. Those of you who have been over, you know she has been sitting in a high-chair that raises and lowers, and you also know how much she has grown out of it. I got in touch with Adorna Mobility to have them come by and take measurements for the new chair that is actually made for special-needs kiddos. That way, Joslyn can use the high-chair soon and Jordyn will be nice and comfortably supported in the new one.
I'm also wanting to order a stroller made for special-needs as well. Her wheelchair we have is nice, but it is still a little too clunky and difficult to lug around to each and every place. A special-needs stroller will be more convenient. We have a regular umbrella stroller for her, but she just slides right out of it since she has no support for her low-tone.
I'll know more about what we'll be ordering by the end of this month. She also has a few check-ups and therapy visits all month. Whew!!

Jordyn got her front tooth fixed. She had chipped it from a really bad seizure a year ago, and no dentist wanted to take her on as a patient. I found a really good dentist who has had a lot of experience with disabled kiddo's, and he patched her right up. Her smile is even more beautiful now! :D She still grinds her teeth, but not as much. We think it was from her molars coming in. Now, she just moans and whines a lot, especially when she first wakes up. We're still trying to de-code it. I hate not knowing her cues. It could be teeth pain, tummy pain, gas, who knows. But we're working on it. At least she's not having seizures. We can get through random whining and moaning.


We recently made a trip down to Corpus Christi to see John's son Jacob and Granny Annie. It was Joslyn's first long car ride, but she did pretty well. I'm attaching some sibling pics below.


Hope everyone had a great couple of months!
New readers of Jordyn's Journey, please read the first few posts to get an idea of how far little Jordyn has come!

We love you all!
Kristen, John, Jordyn, and Trouble :)

Update for July!

Hello, hello! As most of you already know, Jordyn has a new younger sister! Joslyn Dae was born June 29- 2 weeks after Jordyn's 2nd birthday. She was born at 12:03pm, at 7lbs., 6oz., with a clean bill of health. She has John's eyes and his spiky hair, too. :)

We have noticed a few changes in Jordyn since we brought Joslyn home. She LOVES the sounds of a baby around her. Even when Jos cries (which is pretty constant these days), Jordyn has a smile on her face and gets real still, as if she's studying the new sound. The other changes aren't as cute- she has developed Bruxism (TEETH GRINDING). It has been so frustrating! The sound of her little teeth grinding together is deafening- and worse than Joslyn's crying. Apparantly, teeth grinding is common in Aicardi girls and there's no cure for it- they just grow out of it when they are about 5. OK-3 years to go, I guess...
Jordyn also whimpers now. We don't know really why she does this, but it really makes me feel guilty because I'm already trying to juggle the two of them and trying to spend equal amounts of time with each of them, and when Jordyn whimpers while I'm nursing Joslyn, it breaks my heart because I can't pick her up and play at the same time. She has also been arching her back a lot, like she wants to just get up and run around, but she can't. We move her from her chair to the couch to laying flat on the floor, but she still acts like she is uncomfortable. She is 2 years old, and is simply growing up and growing out of the current positions, toys, and day-to-day activities and we need to figure out new things for her. It's just bad timing for mommy, lol.

Her physical therapist has mentioned starting Jordyn on a program with an Infant Massage Therapist and I am all for it! She needs those muscles and bones worked out more. Hopefully, that will start in August.

With all these new issues springing up on us, we are still greatly thankful that she is still SEIZURE-FREE!! I can deal with the teeth grinding and the whimpers, knowing things could (and have been) be a lot worse!

Thank you again to everyone who came to the ever-so-active Baby Shower- Birthday Party in June. It turned out to be a great time for us, and we appreciate all the wonderful gifts. It's safe to say that every June will involve a Dual Birthday Party for these 2 munchkins.
Take care, and God Bless!
Kristen, John, Jordyn, and Joslyn!!

Almost 2 Years Old! And Seizure-Free!

Jordyn turns two on June 16th! Time has certainly flown by the last 8 months, since we started her on Depakene seizure medication, along with her usual Phenobarb and Zonegran cocktail. The only seizure bouts she has are the easily-explained ones, like when she's sick. She had a few days of minor spasms a few weeks ago, but it was because she finally outgrew her dose. I just increased it a bit, and faxed a notice to her Neurologist of the change I made to her dosages. He really trusts us and our opinions on what Jordyn takes. SO, she's back to new and smiling all the time and is ready to party-hardy at her birthday party on the 10th! It is a Birthday party for her/Baby shower for me and Joslyn, all in one.

In other family news, I have about 5 more weeks to go until Joslyn is here! She is super healthy and everything looks great with everything. I have had enough ultrasounds and tests done to live out the rest of this stretch in peace. She has the hiccups a few times a day, which at first alarmed me because I thought they were too closely resembled to seizure activity. But, after a weekend of assessing what was going on, and after non-stress tests at the hospital showed no abnormal activity, I realized they were, in fact, hiccups and they were, in fact, completely normal.

John's son Jacob will be visiting us for the entire summer until after Joslyn is born, so we will have a busy house! He's a great kid and will love playing with Jordyn again and being around when his littlest sister is born.

That's about all, I'm glad to say! We are still working on getting a Wheelchair-Accessible van, but for now other things are first on our list of things to think about. I'll tackle that venture again soon.

We love you all- Hope your Memorial Day weekend was fun!

Kristen, John, Jordyn, and Joslyn (due July 6th)

March/April Update!

Still NO SEIZURES!! Jordyn has been doing so wonderful the past few months. John and I have been enjoying her personality shining through, and just being able to see her smile. She has the sweetest, most genuine smile- it's such a blessing to see such an angelic vision when she smiles. She'll just spontaneously grin, without being tickled or provoked. She wakes up with a huge toothy grin and she'll keep smiling when you smile and laugh back at her. We love being able to capture these moments and share them with everyone. :) Other news with the family- I am officially in my 3rd trimester, with about 12 more weeks to go! We have decided to name the baby Joslyn Dae Gomez. My mom is throwing my baby shower along with Jordyn's Birthday party on June 10 in Kyle. I'll start sending out the invitations by email soon, hopefully by the end of this month. John and I still plan on walking that plank and getting married, but it may have to wait a little longer than expected, because we are saving up to purchase a Wheelchair-Accessible Van to accomodate Jordyn's wheelchair. As she gets bigger and taller, it gets even harder to lift her in and out of the chair, and hoist the chair into the SUV. I am looking into organizations who could help wth funding, but they are pretty swamped with requests. Insurance covers the actual conversion ramp, once you buy in full the van, but there's a 7 year waiting list, I'm told. I'll still look into it, but we may just have to buy a low van and make do with what we've got. It would just be a huge convenience for us to have the ramp and such, especially with little Joslyn coming soon. I'm glad I was able to send out this happy update this month, and I hope to send out many more, many months to come! Kristen, John, and Jordyn!

Another Late Update, But a Great Month Again!

It has been a pretty uneventful month in terms of Jordyn's health issues, which believe me, I'm not complaining! She has been virtually seizure-free now for 3 1/2 months! She's had a few spasms here and there, but they were from sicknesses, or missed doses when she'd fall asleep before drinking her bottle with her last dose of Depakene only a couple of times. This last month, she has had one day of light spasms, and they went away completely once we gave her a few more Phenobarb pills. For once, it feels like we have complete control over her seizures and she is so happy and has been smiling so much! She wakes up smiling, and it completely makes our day!
She is still swallowing her medicine down like a big girl, and has been getting more powerful physical therapy to try to help her sit up and hold up her head more consistently. A huge percentage of Aicardi girls start doing those two milestones at 1 and a half years old, so Jordyn is a wee bit behind and we're still hoping to have her sitting up by her 2nd birthday in June.

Another bit of good news... Jordyn will have a little SISTER! I am pregnant with a healthy little girl. My doctors did a lot of ultrasounds and tests and concluded that the baby has a fully developed head/brain, and a healthy heart, and everything looks great so far! :)

I will let you know of any further updates, but let's hope and pray everything stays at this steady pace and we can have another uneventful month!
Take care, everyone- Love you all!
Kristen, John, and Jordyn (and the baby girl peanut!)

Belated Update

Hello, all! Happy 2007! Usually, I update this blog the first week or so of each month, but I have been so busy this month! A lot has been going on, but I'll give you the shortest version I can.
Jordyn has been doing well except for a 3 week period late last month where she was staying up real late being fussy and squirming around like she was extremely uncomfortable. Her muscle tone is very floppy, but she is Strong! She'd squirm right off your lap if you're not careful. After doing the usual Processes of Elimination, John and I finally came to a theory that proved to be right: Too much acid was rolling around in her belly. We've known for a long time now that she can't have too much citric acid, so we've stayed away from large amounts of that. What we didn't realize was her Depekene had another name: Valproic Acid. Since she's been on Depekene, she has been a tad more fussy until recently when she started flipping out after drinking juice or eating her Gerber stage 3 fruity foods. So now we give her Mylanta throughout the day and she's fine to have all the fruits and juice she wants. So, we don't have to take her off the wonderful, good-tasting, syrupy Depakene. :)

One more great piece of news- Jordyn has learned to swallow her other 2 seizure meds whole! We don't have to crush them up anymore and *pray* she won't puke them up! Now, I hide the whole (small) pill in a spoonful of her food and she swallows it like nothing. there's a total of 8 pills a day, so you can imagine our relief.

So, she's acid-free, puke-free, and more importantly, SEIZURE-FREE!

A great start to 2007!
So great, that we are postponing her brain surgery evaluation appointment until the end of the year.

Take care, everyone!
Kristen, John, and Jordyn (19 months old)
(oh, and the Peanut- 4 months in utero)

The Best Month in '06!

I'd like to start out this blog by saying Jordyn has been seizure-free for one whole month! AMAZING! We started her on a new medicine called Depakene. It has a few bad "possible" side-effects to a couple of organs, but we are taking the added precautions to make sure her levels are good and that she's fine. The only discomfort she's been experiencing is teething. Her molars are reeking havoc on her gums and Oragel makes her vomit, so she's not been a happy camper OR a night-sleeper for the last week or so. Her seizure medicines as of today are the new Depakene, the life-long pal Phenobarbitol, and the nasty-tasting puke-inducing Zonegran.

On another note, for those who don't already know, John and I are expecting another kiddo in July! I am a couple of months pregnant now and VERY excited! Of course, we are also very nervous. My OBGYN doc is great and takes my worries seriously. I will be doing a series of tests just to make sure the baby is healthy and fine. Of course, if we had done the same tests with Jordyn, Aicardi Syndrome wouldn't have shown up in a million years due to it's crazy rarity (word?) but this time, we just want to be more prepared. The odds are on my side with this one and I just pray to God every day to bless Jordyn with a happy, healthy little brother or sister to play with and help her flourish.

Although Jordyn is doing well with her seizure-control, I still went ahead and scheduled her for an evaluation in January to see if she'd be a candidate for surgery. It's January 22-24 in Dallas, and the only test they'll be running that I know of is just a 48-hour EEG. She's had tons of these EEG's, but this one will be super-long and the neurologist there will determine if the seizures start and stay in that left-hand side of her brain. If they meander to the right side, than surgery's a No-Go. We'll see.

So, Jordyn's doing great and I'm pregnant! Big news!
I hope this finds everyone well also, and we wish everyone a very safe and happy Holiday season!
Kristen, John, and Jordyn

Next Step, Brain Surgery...

Ever since my last post, things around here have been so hectic. After our decision to take Jordyn off of the Ketogenic Diet, we also had to make a hard decision to take her off of the "Canadian Medicine" Vigabatrin, also. Vigabatrin had been doing "OK" with her seizure control as long as it was paired up with Phenobarb and Zonegran, too. But, we were going to have to increase it which meant we were going to have to buy a whole lot more of it, more frequently. It's a very expensive drug that's not FDA approved and we wanted to substitute it with an insurance-covered, FDA-approved medicine that we wouldn't have to worry about so much. The HUGE problem, though, ended up being that we weaned her off of the Vigabatrin too quickly and she had a horrible reaction to it. Our funds were tapped from the Diet, and from missing work due to the last hospital visit, and FedEx is breathing down my neck, so we just couldn't swing another shipment of Vigabatrin.
We would have not paid a few other bills and called Canada for one more box had we known the extent of Jordyn's withdrawal seizures from the rapid wean we did:
On Monday, October 16th, John called me at work and told me to get home because Jordyn was having very strange, continuous seizures where her mouth and hands were twitching and she had excessive drooling. I raced home and called an ambulance. No seizure has ever been this scary. Usually, we'd give her a rectal medicine that stopped seizures quick, but it hadn't worked. The team came and we flew to the Children's Hospital where they tried 3 times to get this seizure spell stopped. After an hour, Jordyn finally fell asleep and her little hands stopped twitching. They kept her in the ICU for a night to monitor her close since she's never had a seizure this long. She was doing better, so the next couple of nights we were in a regular room. Both the doctor and John said it wasn't our fault that she was doing so badly, and that she could've had these bad seizures for any reason, but I still feel horrible.

We started her on a drug called Lamictal to be paired up with the Phenobarb and Zonegran so hopefully it will kick in and help. Lamictal cannot be given to her in large amounts yet, or she'll have a bad skin rash reaction, so we'll have to slowly increase it week by week until it's at it's full potential.

We hate these stupid drugs!! She's been having some subtle spasms where her right arm will raise up and her neck will tighten. I gave her some meds that the hospital uses, but they just won't go away until I give her a large enough amount to make her so drowsy that she'll fall asleep.

I have been trying to get things in order for her Brain Surgery Evaluation in Dallas. They will keep her for a few nights and run all sorts of tests to see if she's eligible for the surgery.(Called a Temporal Lobectomy) If their tests show that the seizures are started only on the left side of her brain, then she'll be a good candidate. If not, then back to the drawing board.
Aside from having to deal with different Dallas Hospital people on the phone, trying to schedule this evaluation, (The doctor is doing the evaluation even though they don't take Jordyn's insurance, and every one I've talked to keeps trying to blow me off because they don't know about her case) we are also trying to figure out how we are going to be able to afford this trip with our part-time schedules. Missing work, gas to and from, food... that's about $400 that is not in our beloved little budget.
I'm trying not to worry about it so much, but I may have to host a very chilly "Aicardi Car Wash" (any helpers? lol) or something soon and try to raise the funds.
I just hope that Jordyn is a good candidate so we can stop the meds and start working full force on her development and just Jordyn herself. She is such a happy kid when she's not "drugged" up. We may start the Ketogenic Diet again, but I want to make sure that we get the right info on what to do the second time around.

So, right now we are trying to organize this Dallas trip while also seeing how this new Lamictal drug is going to work with her other two meds. I'm sorry I didn't make this long story short, but I've been just so full of emotion. It feels so good to "get it all out" and share this with you, my family and friends. Thank you everyone for reading her updates and being such wonderful people! We love you all.

Kristen,
John, and Jordyn

So Far, So BAD!!

There will always be speedbumps in your plans that will slow you down. It's the pot holes that mess up everything. The Ketogenic Diet should be a pretty smooth transition: You give the child certain measured foods, certain approved medicines, you check their ketone levels in the urine, and you give them vitamin supplements that the food lacks. No biggie. Ever since Day 1, Jordyn has had issues with almost every aspect of the diet. First, she vomited in the hospital because she is allergic to both Soy and Milk. After we got home, she was vomiting up a certain approved drink because it's first ingredient is Citric Acid and she's apparantly intolerant to that. Then, she started spitting up and vomiting because the vitamin supplement was way too "heavy" on her tummy. It's been a little under a month and the poor child has been sick for more than half of it.

Not only that, but with all the vomiting she hasn't been getting the full effect of her seizure medicines. It's the medicines that have been controlling her seizures this whole time, not the diet. She hasn't even had ANY ketones since the 3rd day into the diet. And THAT was only because she wasn't eating well because of all the vomiting. {grrr}

Pot holes in the plan. But that doesn't mean it's botched. It just means we'll start over with more knowledge on what to expect. For now, though, John and I have decided to take a break and let Jordyn have her regular formula and Gerber foods and get well. The only foods that were "coating" her tummy were Micro-Lipids and tiny amounts of beef and applejuice, so this break is necessary for her to regain her strength and give her belly a break. When I told her Neurologist about our decision to take her off the diet for a while, he replied "You have been right about everything so far, so I trust your decision". I loved hearing that, of course! :)
There's a chance that even though she wasn't in ketosis, the modified diet could have still had an affect on her seizures. She hasn't had any since we put her back on Phenobarb, but there's always a "Honeymoon Period" where the great no-seizure time wears off. If she starts having seizures again, we'll start the diet again. If they don't stop still, then the Honeymoon Period was in full effect, and the diet doesn't work for Jordyn.
At least then, we'll be able to have a smoother start with the diet now that we know where all those pot holes are. :) I have high hopes for it still.

We started her back on Nutramigen formula and baby foods on the 9th, so we'll see what happens next. Hopefully, the medicine concoction (Phenobarb, Zonegran, and Vigabatrin) prevails... I'm still working out the kinks in Plan B, which is surgery Just in Case.

Thanks for reading!

Happy 30th Wedding Anniversary to Debbie and Terry Kuns
and
Happy Birthday to Annie Gomez!
Both special days were on October 8th.

Kristen, John, and Jordyn (16 months old)

So far, so good! :: Ketogenic Diet

Hello, everyone!
We got back from the hospital late Friday afternoon. It was an extremely long and tiring week! The process of starting Jordyn on the Ketogenic Diet on Monday should have been a fairly easy transition, but the first 2 days were horrible. It turns out that she is allergic to not only Soy products, but Milk products, too. For a whole month prior to the diet, I tested her allergies to milk, and she didn't show any signs of sickness, so this was a tiny surprise to me. The main menu item on her diet was a formula that is soy-based and cream. After the first evening of gulping down the two ingredients, she was not happy to say the least. She had terrible tummy problems ( I don't want to elaborate on them too much- just know they were BAD) and her seizures came back full force. She wouldn't take down her medicine, and her blood sugar levels were extremely low. John and I were very scared and we didn't know what to do with ourselves. It was very hard to see her so miserable and not be able to do anything about it.

By the end of the 3rd day, she had the color back in her face and she was eating well. What we did was take the soy and milk completely out of the equation. It wasn't necesary to have the formula anyway- it was just going to be a little bit easier to have it around for trips and late-night feedings.

We were discharged on Friday with a clean bill of health. Jordyn is loving her diet which consists of meals like Gerber Beef & Gravy, Gerber Pears, and Micro-Lipids (a fat solution that takes the place of cream) and other fun foods like diet Kool-Aid and avacados. Everything has to be weighed to the tenth of a gram and served at specific times of the day, but I've got the hang of it. It's not a hard diet, but it is tedious.

Jordyn has not had any seizures or spasms, and has actually seemed to be in a better mood. She'll track objects a little longer and she'll even look straight into your eyes for more than a few seconds. The doctor says we can start weaning her off of her seizure medicines within the next few weeks! I know her sweet, smiling face will emerge shortly after that begins!

We still have to check her blood sugar levels here at the house with a One-Touch Ultra, and we check her Ketone (the body's natural enzyme that will let us know she's still ketonic) levels to make sure they are good and high.

All in all, after the first couple of days, this diet is going really well! I will post another update in a few weeks and I will let you know.

Kristen, John, and Jordyn

Ketogenic Diet - next treatment!

Jordyn has been on quite a few medicines (not to mention one that involves a shot in her thigh daily) and none have really stopped or decreased the seizures/spasms to our liking. Some people don't mind their child having one or two seizures a day as long as the child is happy and flourishing, and believe me, that'd be GREAT for us. But in Jordyn's case, she is having about 3-5 spasms a day WITH heavy lethargy and a scewed sleep schedule because of the current medicines. She has been on a new medicine from Canada, but it has only helped a tiny bit, even though it is also paired up with another medicine, Zonegran, which has worked in the past but not anymore.
When children have hard-to-manage seizures, the next mainstream step to take after medicines have failed is Brain Surgery. We were going to go that route until John and I saw something so interesting on TV late one night.
We saw a little boy having a Grand Mal seizure on a movie while flipping channels. Those are the kind that throw your body into harsh jerks (also called Drop Seizures). The boy tried every medicine available at that time to no prevail. Then the mom (played by Meryl Streep) went to the library (pre-internet era LOL) and schooled herself on this special diet that had been around for decades, made specifically for seizures. (The movie is called First, Do No Harm)... The doc's didn't want them to try this treatment because "Gee, no money to the hospital OR medicine companies" But she took her son to Johns-Hopkins Hospital where they first did the diet and lo and behold, the seizures shortly STOPPED and the medicines were STOPPED.
The Ketogenic Diet involves foods and liquids that are high in FAT, low in proteins and carbs. Jodyn will ingest about 4x as many fat grams as protein and carbs combined. She won't gain weight because her body will use that fat and not store it. Her body will produce little enzymes called Ketones that we'll check everyday that let us know her levels of glucose and such are normal. One tiny mistake on this diet could throw everything off and EVERYTHING has to be measured on a gram scale to the tenth decimal place, and EVERYTING has to be strict as far as what kind of food, at what gram, and what time of day. WHEW! (we've been through more tedious things... )
Here's the incredible part, though- She will only be on the diet for 2 years, then if the diet has shown great improvement, she will be able to eat regular foods and be medicine and seizure free for the rest of her LIFE. Sounds too good to be true, but it is not unheard of or atypical. The success rate of this diet is incredible. Even if it just decreases her seizures by 50%, we can take her off the medicines so her quality of life is higher.
Also, she is young enough that she won't sneak off to the pantry and eat a cookie or take candy from a friend. We will be in complete control. There's also a special made formula for the diet called Keto-Cal. Since Jordyn has not fully mastered the art of chewing-and-swallowing, we will keep her on this formula for a good year or so.

Jordyn is scheduled to start the diet at Brackenridge Children's Hospital on September 11th. She will stay a few days so they can moniter her levels and make sure she doesn't get dehydrated. They used to have to starve the kids first, to get their Ketones up and running, but they do NOT do that anymore at this hospital. Jordyn will ease into the high fatty stuff for an easier, less invasive transition.
It will take about a month after we start the diet to fine-tune everything to make sure her intake of the foods is comparible to her level of activity and weight. We hope that by mid October, we will be pretty comfortable with the change, and that her seizures will be decreased (or stopped!)

We are so optimistic about this new venture, but as always, we are "Preparing for the worst, but hoping for the best"

Visit the link above to read a little more about this diet. I have a few more links below:

Matthew's Friends:
http://www.matthewsfriends.org/intro.asp

our-kids:
http://www.our-kids.org/Archives/Ketogenic_diet_FAQ.html

Jammin' For Jordyn

John, himself, put together a Benefit Show for Jordyn that the Corpus Christi Caller Times newspaper dubbed "Jammin' for Jordyn". It was such a fun show! John is good friends with some talented performers who were gracious enough to come and perform in honor of Jordyn. We raised enough money to start her on her new treatments. We are very greatful to have such great family and friends to share the moment with us, and/or donate. We appreciate everyone's help, prayers, and thoughts.

The performers included Steve Trevino (featured on Comedy Central's Mind of Mencia), Eddie Ojeda (Twisted Sister's lead guitarist), comedian/rapper Chingo Bling, and of course, John's band Sonido Azul (comprised of Grammy award-winners from The Chris Perez Band). The event was MC'd by C101's Rex Gabriel.

John will try to put together an Austin benefit show when everyone isn't on national tours. I'll keep you posted!






Info table, with "Jordyn's Dreams" donation box, made by Kristen's dad


Kristen and Steve Trevino


John drumming


Eddie Ojeda and band, rocking out


John and Steve Trevino

  





Corpus Christi Caller Times newspaper full length article about the Benefit
http://www.caller.com/ccct/entertainment/article/
0,1641,CCCT_874_4725900,00.html

The Beginning to Now :: Written by MOM

My pregnancy was completely normal. Great, even. The birth wasn’t too bad, either although it seemed bad at the time, LOL. Jordyn Terra Gomez was born June 16th, 2005 at 5 lbs., 15 oz. and 19.5 inches long. She was even a whole week early, the sweetheart! The first features we noticed were her huge brown eyes and her funny little birthmark on her chest.
It wasn’t until we brought her home when we noticed the strange, small arm-jerking movements she’d have every once in a while. I called the hospital nurses and expressed my concern, but they told me it was “just hiccups” and to not worry so much. I even brought the weird movements up to her (now Ex-) pediatrician who also wrote it off as “nothing”. He said he’d schedule her an EEG test (aka Brain-Wave-a-gram) for my piece of mind, but he dropped the ball and never scheduled it with the hospital for that week like he said he would.
When Jordyn was 12 days old, we visited my sister Dena’s house. By this time, her “hiccups” had increased from one a day to six. After Dena saw her have an episode, she told us we should go to the Children’s Hospital ER, so we did. We were not prepared at all for what was about to unfold.
Once at the Hospital, the doctors immediately rushed her to a room and took her stats and blood levels. We were quickly admitted and over the next 24 hours, they ran a whirl-wind of tests, including the long-awaited EEG, MRI, Lumbar Puncture, X-Rays, everything they could. Jordyn’s room was top-priority for the nurses for the next week and a half.
Our newly appointed Neurologist, Dr. Kane, gave us the horrible, complicated news about our 2 week old daughter:
“Jordyn may have a rare neurological disorder called Aicardi Syndrome. She has Agenesis of the Corpus Callosum (“ACC”; the absence of the bridge that connects the left and right hemispheres of the brain), Cysts in the left temporal lobe, and Infantile Spasms (seizures). We are having an Ophthalmologist come in to confirm it, because you have to have retinal lesions to be fully diagnosed with it.”
You can imagine our disbelief and worry. As if that’s bad enough news, we also learned there’s only 500 cases WORLDWIDE and the disorder only occurs in females. There’s also a poor life expectancy.
The eye doctor didn’t find any lesions in her eyes (just bad vision), but there are a few other cases of Aicardi patients that involve no lesions. Jordyn is the rarest of the rare.
Fast forward to now:
As far as life expectancy, her case is more promising than the typical one. Most Aicardi girls need feeding tubes and are extremely non-responsive to anything. Jordyn was a great eater, whether it was breast, bottle, or spoon. Her development is severely delayed, but we think it’s mainly because of all the harsh medicines she’s had to have over the past year. She has 6 doctors, 4 therapists (OT, PT, ST, and vision teacher), and 2 very devoted parents who’ll do anything to help our Shabootie-Toots. In fact, John recently produced and directed a Benefit Show in her honor to raise money for her new medicine. (Read the blog about it!) The show really helped us start out the new treatment. It is not FDA approved, so it's pretty costly to order it from Canada. It’s worth her not having seizures! So far, so good! I’ll keep you updated.
Thank you so much for your thought and prayers!