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)