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.
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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
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