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Caden has Neurofibromatosis type 1 (NF-1). He was born on 11/21/02. As a result of his NF, Caden has a bone deformity called isolated congenital pseudarthrosis of the fibula. He had an iliac crest bone graph and internal rod placed in his fibula on Sept. 19, 2006 to try and repair the damage. Caden had a second graph from his rib to his fibula and had the internal rod replaced on March 8,2007 ,after the first attempt to repair his leg didn't work. Caden also has sensory integration disorder and some gross and fine motor skill delays. Caden loves to talk, but is not typically understood because of articulation problems. January of 2007 Caden was diagnosed with Attention-Deficit/Hyperactivity Disorder (ADHD). He has had two sets of ear tubes, surgery to remove tubes & a cyst growing on them, an adenoidectomy, five MRIs, two closed head traumas, nine casts,& way more x-rays than anyone could ever count. Caden has had multiple laryngoscopies that have all shown very mature vocal nodules as well as severe damage from reflux. These are all things that have been associated with NF-1. He is a happy, energetic, funny, cute little boy who loves to play. Caden has had a lot of medical problems in his young life, but has pushed through them and keeps getting stronger for it. Thank you for visiting us and keeping up with us. We appreciate the prayers and support!


Caden's favorite things:

- anything green
- penguins
- his "shrocs" (crocs)
- His Basset Hound, Hank Verde Yoshi
- Cassaday, his favorite lifeguard/babysitter
- Mumble, Lightning McQueen, Transformers Bumblebee, Dash, Buzz Lightyear, Nemo, Batman, Superman, Spiderman, Diego, Scooby Doo, Curious George, Spongebob and of course Stitch
- Mrs. Amy's class at Binion
- Life Church
- Joyfull the clown
- anything that has anything to do with any kind of racing
- skateboard anything
- swimming
- Taggies, bunny, and teddy bear
- ALL his build a bear animals
- Texas Scottish Rite Hospital for Children
- bubbles
- fruit snacks, cereal, juice boxes, popsicles, crackers, and donuts
- reading books
- going on walks


Caden's momma's myspace web page! www.myspace.com/karabelle


Journal

Wednesday, September 5, 2012 1:30 PM CDT

We are quickly approaching the 6 year "anniversary" of Caden's first bone graft surgery. And Shayne is just a bit younger than Caden was at that time. I can't imagine sending Shayne into that surgery and dealing with all that but I guess at the time I knew it was the only option for saving Caden's leg. It still makes me beyond happy to see Caden run and ride his bike and jump and just play on his own two legs. The deformity on the left leg at the ankle is getting more pronounced and more people are starting to notice it but it doesn't hold Caden back. I am very grateful he also doesn't mind answering questions about his giant scar and will tell people he had surgeries when he was little and that's where they cut him open. ;-p He's not as quick to show the hip and the rib scars for some reason. But I'll take what we get. :-)

The overall opinion of his brainstem tumor seems to be that it really is a very low grade tumor and while it is in a very unfortunate location, deep within the right side of the stem, it is not going to cause us any problems for the time being. We have moved MRIs out to every 6 months. Hooray!

Caden started 4th grade last week and has been very good so far and very helpful with letting his teachers know his likes and dislikes. He is growing into quite the self-advocate. His teachers are very easy to work with and very receptive to suggestions. I am overjoyed. His annual ARD meeting was a breeze and we are well on the way to getting every accommodation we feel he needs.

Fall doctors appointments are coming in like a storm but he is doing great in most areas other than the continued growth problems and behavior/anxiety stuff. He is getting to the age where he's really wanting to know which doctor we are seeing, why he sees them, and what procedures they will do while he's there. He is now old enough that I let him ask the "procedures" question when we get there so he can discuss and advocate for himself. He's done very well with it so far and only argued with a doctor once. LOL

We had a busy and yet relaxed summer with lots of fun stuff but plenty of hang out and do nothing time as well. The best was our family trip to Sea World! After some emails and phone calls Sea World found out about Caden's obsession and passion for penguins and took some time to learn about NF1 and all the things Caden has gone through and continues to battle with. They not only offered us a meet and greet with their penguins but gave us a private tour and added in some super special goodies for Caden, including a picture painted by one of their Magellanic penguins named Maggie. :-) It is definitely Caden's most prized possession. He pet different kind of penguins, got to enter their habitat, and got to meet the penguin keepers and learn about their job. It was a special day and we felt so honored, we will never forget the smiles and excitement Caden had and are so thankful for Sea World's generosity.

I can't wait to come back and update in about a month with how Caden's YEARLY x-rays look! I still can't believe the kid whose leg had no hope of ever healing is not only healed but only has to be checked on every year. 6 years can't erase memories of that many surgeries, x-rays, casts, doctors visits, therapy, wheelchairs, walkers, etc. We are so blessed and God is so good.




<3 ~ Kara

- and James, Caden, Shayne, Hank the hound, & Raph the turtle too ;-)

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E-mail Author: cadsmom19@aol.com

 
 

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