Hello, all! Lots going on for this post! First off and most importantly, Jordyn is still seizure-free!
Jordyn's doctors and I have agreed that it is time for her to get a G-button ("feeding tube"). We have dodged this procedure a few times, but it now is the time to give-in and have it done. Not only will it allow her to get all of her food, water, and medicine in, it will limit her gag reflexes and make it 100% easier for people to watch her. Currently, someone has to be in the same room as her at all times in case she vomits. She will have the Nissen fundoplication, which creates a wrap of stomach tissue around the lower esophageal sphincter to prevent the refluxing of stomach contents into esophagus. In other words, NO MORE vomiting!! It's a very common procedure with little risk and the prognosis is almost always good! It will be a relief for Jordyn as well as everyone else here. I am very excited! She shouldn't have to endure the feeding problems she has been having. The procedure will be done on September 14th at Dell Children's Hospital and she'll be there for about 3-5 days for recovery.
October 24th is Jordyn's new Make-A-Wish date. It was pushed back when her surgery was scheduled for September. Her wish is a large flat-screen TV with all the bells and whistles. We're hanging it on the wall (fireplace, actually) so she can watch TV from her special bed. They are doing the Reveal event at our home, then there's a party to follow at GattiTown in Southpark Meadows, from 2-4pm. Anyone is welcome to come, but they are only covering a few people so you will have to pay regular buffet prices. I'd love for people to come celebrate with us!
Jordyn is also doing Water Therapy every week to help strengthen her neck muscles. She is holding up her head a lot better now! She loves to swim, and the water's resistance really makes it a more challenging workout. The facility is an hour away from us, so we're thinking about moving to Round Rock to be closer so we can make it 2x a week.
I'll try to keep everyone updated, especially during her surgery. The rest of our brood is doing great- Jaylee is 9 months old and pleasantly plump, lol. Joslyn is 26 months and blows us away with her long, complete sentences and her ability to count to 20, sing the alphabet, and sing to Black Eyed Peas and Katy Perry, haha! She loves music, go figure. John is doing great with his bands! A lot of things are happening and we'll share the great news once everything is settled!
I'm sure there's more to include with this update, but I got the 2 major pieces of news down. As always, I hope this blog update finds everyone well! Have a great Labor Day weekend and be safe!!
Kristen, John, Jordyn, Joslyn, and Jaylee
Monday, August 31, 2009
Wednesday, July 08, 2009
Seven Months Since My Last Update...
...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
Jacob is a great big bro!
John with the Dallas Cowboys band Free Reign and John from RIOT! Entertainment (right)
The kids at our neighborhood 4th of July parade
Jolly Jaylee 
Jordyn's new bed!
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!!
Jacob is a great big bro!
John with the Dallas Cowboys band Free Reign and John from RIOT! Entertainment (right)
The kids at our neighborhood 4th of July parade
Jolly Jaylee
Jordyn's new bed!
Joslyn's video for John's band Shorelines End
Friday, January 02, 2009
Off to a GREAT Start- 2009!
Wow! Where to start? First, Happy New Year to Jordyn's wonderful friends and family who are reading this! I hope you all had a great holiday break! Jordyn's health and well-being has been at it's utmost greatness lately and we couldn't be more happy or grateful.
She had weathered so much in 2008 with her fractured femur, teeth grinding, skin rash, gastritis issues, diet change (due to her gag reflexes), and ongoing food allergies; but has come out on top like a champ! She has healed up nicely, had a new "grill" put in, and we have been taking care of her newly diagnosed Eczema. Her diet change has helped her gain 3 pounds in the last 4 months and she was put on a better GERD medicine.
She's Itch-free, Grind-free, Fracture-free, Acid-free, and FAT! :) And most importantly, SEIZURE-FREE!!! It's the most unusual (and awesome) thing- even if she misses half a dose of her medicine lately (due to falling asleep early, etc), she still doesn't have any signs of spasms or seizures. It's not too unusual for kiddos to grow-out of epilepsy, but we can't make that assumption towards her unique case until we do another EEG. I'm making arrangements with her Neurologist to see about her recent brain activity to see if there are improvements in that area. Just out of sheer curiosity.
She's also smiling a lot more, tracking well, and her head-control has gotten stronger. She is enjoying having her new baby sister around and still, of course, loves Joslyn playing with her and loves receiving her kisses.
We are still planning on a fun-filled trip to Disney World this year, compliments of Make-A-Wish Foundation. We may wait until October to go once Jaylee is a bit older for travel. I'll keep everyone updated on those plans as they unfold!
Other Family News:
*Jaylee Rain was born December 1st, happy and healthy! She is now a month old and is filling out quite nicely. She has begun holding up her head and Joslyn calls her "Kiss-Kiss". :)
*John's mom, Annie, will be living with us soon, and we are so thankful! She is a huge help with the girls, especially Joslyn. They are complete BFF's! Joslyn follows her around everywhere and even calls her "Ma-ma". Bad news for me being her real Ma-ma, lol, but the two of them are so cute to watch together. They almost have their own secret language! :) Annie is a blessing to have around the house full-time.
*Jacob is doing great in school and has a lot of fun with his little sisters. He is such a smart and witty kid! He is a huge help with the babies and loves making his famous Smoothies every time he visits. I swear, he's 10 and a half going on 20!
*Joslyn has been having some issues with her bowels, but we think we have figured it out. I held off her sphincterotomy (surgery) plans set for next week because I may have figured out what has been wrong with her "Making #2" problems... she may have an intolerance to the milk enzyme Casein. Jordyn went through the same thing- couldn't even have Lactose-Free or Soy. Whatever she ingested had to be completely free of Casein (often listed as sodium caseinate, calcium caseinate or milk protein). We're knee-deep in troubleshooting Joslyn's issue so that she doesn't have to go through any unnecessary surgeries or painful procedures.
*John and I are doing great! We're enjoying each other's company while work is slow and love playing with our funny children. We are planning a special trip (Belated Honeymoon, if you will) to Vegas this year. We deserve it! :)
Thanks for reading! Love you all! Click the title above to see more pictures via my Myspace page!
Kristen
Subscribe to:
Posts (Atom)