Kate’s CaringBridge Introduction Post

Saturday, December 8, 2007 9:05 PM, PST

Here I am, writing my very first EVER blog post. I can’t believe I’m doing this, but heck, everyone and their dog has a blog nowadays and I don’t want to be behind the times, so I figured it was time to bite the bullet and just do it. Lol I suppose I should write a little “Introduction to My Kids” post for anyone who might come across this blog and decide to take the time toread it.

Megan is my oldest. She’s 16 and NT (neurotypical). Okay, if you want to get technical, she does have Tourette’s, but around our house, having *just* minor tics means you’re fine. Really. I know that some people view Tourette’s as a disability, but Megan and her father and I see the condition as a nuisance and nothing more. Megs is beautiful, intelligent, mature way beyond her years and a huge help around the house. She is a lovely young woman with a spiritually-sensitive heart and I sometimes step back and wonder, “HOW has she become this person? I wish I were more like her!” So many people gripe about their teenagers and I, thankfully, can not relate to their angst. Megan isn’t perfect (who is?), but she’s a pretty awesome 16 year old. She enjoys reading, horses, reading, dogs, reading, dragons, reading, reading and reading.

Adam is 15. He has multiple diagnoses, but the most-challenging ones are Asperger’s & Auditory Processing Disorder. Adam is very smart, VERY mechanically-savvy and he has a knack for making me laugh uproariously with his preference for physical comedy. He has a special bond with his baby brother, Joshua, and goes out of his way to help me with Joshua’s care every day. We recently had a doctor inquire whether Adam might have Marfan’s Syndrome, so Adam is getting evaluated for it, but I don’t think he actually has it. I think Adam is just a super-tall 15 year old (he’s a bit over 6’6″) with really big feet (size 18). Considering that my brothers are both over 6’7″, it isn’t a surprise that Adam is taller than average, too. Adam’s interests revolve around medieval things, computers and Legos.

Emily is 8. She has Asperger’s, Arnold Chiari Malformation type 1 (ACM) and Tethered Cord Syndrome (TCS). Chiari is a condition where the lower portion of the brain (the cerebellar tonsils, which is the bottom part of the cerebellum) doesn’t have enough room and gets pushed out of the skull into the spinal canal, thus compressing the brainstem and blocking the flow of cerebrospinal fluid (CSF). This causes multiple neurological symptoms and can lead to such complications as syringomyelia (CSF being forced into the spinal cord), hydrocephalus, brain damage and unrelenting pain. Tethered Cord is a condition where the spinal cord is either adhered to bone/muscle/scar tissue OR where the lowest part of the spinal cord is stiff rather than being flexible like a rubber band, so it’s unable to stretch and move freely as it should. When the cord is tethered (stuck), then normal movement causes unnatural stretching of the spinal cord, which can lead to permanent nerve damage (as well as pain, mobility difficulties, numbness and other neurological symptoms). Both Chiari and Tethered Cord are treated with surgery. A Chiari decompression involves making an incision in the back of the head, along the base of the skull & neck, to allow a neurosurgeon to remove some occipital bone and the backsides of 1 or 2 cervical vertebra, then open the dura (the casing that holds the spinal cord/brain/CSF) and add a patch to enlarge the area where the cerebellar tonsils are at so that CSF can flow freely again and the pressure can be taken off the brainstem. A Tethered Cord release involves making an incision on the lower back and releasing the cord from whatever it is stuck to. This procedure is pretty straightforward and easy for a simple tight filum (what Emily has), but it is much more difficult and involved for a person with Spina Bifida since the amount of scar tissue that typically tethers the cord is enormous. Emily hasn’t had any surgery yet because her Chiari is asymptomatic and she isn’t having enough Tethered Cord symptoms to make surgery worth the risk. However, we know that a TC release is in her future at some point because eventually she will grow enough to stretch her cord to the point where her symptoms require treatment. Emily is blonde, with big green eyes and a beautiful smile. She loves to read and do math, but her very favorite activity is anything involving crafts. I am so NOT a crafty person, but my Emmy is. She loves to create masterpieces from any material she can find and her room always has broken crayons and uncapped pens lying around (sigh).

David is 6. He was my first diagnosed special-needs child. October 25, 2002 introduced me to the world of autism and the phrase “special needs”. In addition to Autism, David also has Chiari and Tethered Cord. He had his Chiari decompressed on February 21, 2005 and his cord was surgically released on August 12, 2005. As long as he remains asymptomatic, he won’t require any more surgeries. David loves to play Gameboy games and watch movies. He likes “mutated lizards” (ie: Godzilla), Spiderman and SpongeBob.

Sarah is also 6. She has Chiari and Tethered Cord. She had her Chiari decompressed twice, on July 7, 2004 and again on February 21, 2005. Her cord was surgically released on February 21, 2005. Explaining Sarah’s experiences with Chiari would take a separate post, which I probably will write in the near future. Suffice to say that she’s currently asymptomatic but has some permanent side-effects from her condition that affect her learning abilities, but not her overall intelligence. Sarah is a talented artist, a mathematical whiz and one of the most-loving children I have ever known. She’s the kiddo who is always running over to give me hugs and kisses throughout the day.

Isaac is 4. He received a PDD-NOS diagnosis at 15.5 months of age, but I vacillate back and forth whether I think he’s actually on the spectrum or not. It can go either way. He *is* very rigid and he still has a severe articulation disorder, but he’s also very imaginative and social in ways that David and Emily and Adam just aren’t. Isaac likes guns (no, we don’t own any, but that hasn’t stopped him from being obsessed with ’em) and playing computer games and riding his scooter.

Joshua is 21 months old. He has a form of Spina Bifida called Lipomyelomeningocele (LMC), which is basically myelomeningocele (the Spina Bifida that most people are familiar with ~ where the baby is born with the spinal cord outside of the body) that is covered by skin and also has a benign tumor made of fat, muscle & nerves growing in and around the spinal cord. Joshua also has Chiari type 1 and is fed primarily through a gastrostomy tube (gtube). He has severe nausea that causes multiple bouts of vomiting each day as a ‘side effect’ of his second Chiari surgery. We give him Zofran around the clock to combat the nausea and he receives just 5 ounces of Nutren, Jr. formula per tube feed since larger amounts triggers more vomiting. Since he has to take in 30 ounces per day of formula, it can be a struggle to get him fed often enough to ensure good growth, especially on days when he is throwing up more than normal. He has a neurogenic bowel and bladder, which is a fancy way of saying that he needs help to pee and poop because there is nerve damage to those body parts ~ he gets cathed 4 times a day and takes Miralax to stay regular. Oh, and he’s allergic to latex, too, so  have to stayalert to what he’s around and/or touching when we’re not at home (the house is pretty much latex-free). In his first year of life, Joshua had just 1 surgery ~ his initial repair done at birth where the neurosurgeon removed as much of the tumor as she could, put his spinal cord back into the spinal canal where it belonged, closed the dura (with an artificial graft) and the skin. However, this past year has been one hospitalization after another. Joshua had 2 Chiari decompressions (April 20th & October 1st), 1 tethered cord release (April 20th), a gtube placed (August 13th), an emergency laparoscopy to retrieve a piece of the gtube that got lost in his abdominal cavity during a “routine” procedure to change the PEG tube for a Mickey button (both on September 25th) and then another GI procedure to change over the button once more (it was done in the OR just in case the same complication occurred again ~ on December 4th). He’s also had multiple MRIs, pH probes, endoscopies, CT scans, xrays, ultrasounds of various body parts, VCUG/urodynamics, and more doctor appointments than I can keep count of (over 100, easily). Joshua did have good speech for his age until he was 10 months old, at which time his Chiari became symptomatic and he lost what words he had. Unfortunately, he hasn’t regained much speech and relies mostly on pointing, grunting/squealing and a few words or approximations of words to communicate. Joshua generally is a good natured little boy (as long as the world is going his way) and despite his challenges, he brings our family a great deal of happiness and laughter. So… that’s the rundown of my kids and their respective “disabilities”. Truth be told, the only kids I think of as having true special needs are David and Joshua. Asperger’s and PDD-NOS are definitely a challenge and life can be really difficult with Adam, Emily & Isaac at times, but overall, they are all so high-functioning that anyone who casually meets them probably wouldn’t notice anything odd at all. Or maybe it’s more accurate to say that because they have siblings with problems greater than their own, high-functioning autism spectrum disorders don’t rank as high on the “disability” scale around here.

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One thought on “Kate’s CaringBridge Introduction Post

  1. Seems a bit odd that one EVERY kid has a medical illness/disability to some scale and she focuses on that so much yet I had no idea until now any other kid had any alleged illnesses. Maybe finally having 2 kids get so sick and claim their terminal gave enough attention talking about the issues of any of the others it didn’t feel necessary. Does anyone know how that hearing went? Or how the kids mainly Joshua are doing? It seemed like for so long she had so many people including doctors wrapped around her finger, I wonder what incident finally caused things to change and not just Joshua but the other kids to have custody removed.

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