Jordyn's Journey: 2009-07-05

...and things are still good with Jordyn! Her seizures are still under complete control and she has started eating pureed foods again! We had to quit giving her foods last year due to her gagging reflexes getting more and more sensitive. She was given vanilla-flavored Elecare formula every feeding this past year and I thought it was finally time for her to start enjoying different tastes and textures. I gave her some mashed bananas/sweet potatoes (citric acid free) and she devoured it, poor thing! She didn't gag and she even took her medicine pills along with each bite. So now, she has been eating that combo along with Malt-o-Meal, Agave syrup, and carrot juice. It is extremely difficult to find citric acid free foods since it is a natural preservative. Her intolerance to it also includes stearic acid, malic acid, ascorbic acid, and small amounts of folic acid. Folic acid is in her Malt-o-Meal, so we have to limit it. She still gags at times, but we lift her up in time to let the food go down easier.

She received her special SleepSafe bed with hydraulics and memory foam mattress last month and has been LOVING it! It'll be her bed forever. :) She also got a Bath Chair System that rolls up to the shower and slides into the tub. She is getting so tall and heavy, so I really needed this for her. Last week, she received a beautiful Stroller. Her wheelchair is great, but it takes time and strength to put it together/take apart in the parking lot. The stroller easily folds up and has tons of body support for Jordyn.

Disney World Update: Since we first enrolled in Make-a-Wish in May '08, Jordyn has developed weaker bone structure and muscles. As she gets taller, it becomes more difficult for her to sit up for long periods of time. Whether in her new stroller or in her wheelchair, sitting up at any angle makes her muscles strain since her body is used to being in a horizontal position. We sit her up a lot during the day, but we all fear that the trip may do more harm than good with the length of time she would be sitting up. The extra strain on her body could open the threshold for seizures. One of her therapists mentioned that we should switch her wish to something that could benefit her senses here at home where she feels safe. Her new bed is great, but the footboard limits her vision to her videos. So, we have switched her wish to a huge flat screen TV positioned high so she can see it from any angle in her bed! Right now, she can hear the regular TV but cant see diddly except for a bare boring ceiling. NO visual stimulation. I told MAW that the new TV would have to be big enough to where she can view it easily from her bed. What I like best is that her sisters will always want to be in Jordyn's room with her because of the cool flat screen! She loves watching her baby sisters. :) We hope to get it in the next couple of months. The personal donations we have received have been greatly appreciated and will be used to purchase more adaptive toys and even an indoor swing for her! I am constantly trying to expand her limitations and let her "play" like her sisters do, but in her own unique way. I am also looking into Aquatic Therapy, since she is unable to go to a community pool. If anyone has any info on the subject, please email me!

The family is all doing well, too. Joslyn is 2 now and is talking up a storm in complete sentences. My dad came by and did one of her puzzles for her and she claps and said "YAY! Good Job!!" to him, haha! We hope to enroll her in a dance class after she is fully potty trained. She sees Jaylee in diapers and has reverted back into baby-mode.
Jaylee is 7 months old and is a whopping 25.5 lbs. She is the size of an average 18 month old, but at a normal height for her age. Her doc says she isn't "overweight", but to limit her formula intake. That makes Jaylee an angry roly-poly! She'll thin out like her sisters did once she starts crawling and walking.
Jacob is here for the summer and is enjoying playing with his crazy sisters. He has developed a deep love for Yo Gabba Gabba, only to point out plot defects, set mistakes, and character flaws. He is convinced there is a secret relationship between Foofa and Muno. Just now, he pointed out to me how one of the cartoon's on the show had a man with a lime for a head. I never noticed it before! The show has gone from an innocent kids show to a complete soap opera and we find ourselves singing the catchy songs all day. He is so much fun and so smart! Joslyn just loves the show for obvious reasons.
John has started managing the Dallas Cowboy's heavy metal band Free Reign. They have received TONS of press and were featured in Sports Illustrated, ESPN, and CNN. Just Google them and thousands of stories will pop up! John got them a world-wide record deal with RIOT! Entertainment within weeks of discovering them and is working 18 hour days to keep the ball rolling. Football season starts this month, so he has the next few seasons to line up some major shows and appearances for early next year. He started his own management company called Silver Tongue Management. Hopefully things will all go well and John can finally be compensated for all the hard work he has done over the years! It's time.

Although No News is Good News, I will try to do more consistent Jordyn updates, now that Jaylee is getting more independent and I have a bit more free-time.

We hope everyone had a great, safe 4th of July and that everyone is doing well.
Thanks for reading!
Kristen and family

www.myspace.com/freereign
www.myspace.com/shorelinesend
www.myspace.com/silvertonguemanagement

Little Miss 4 year old!!