Rett Syndome, a Few Years Later

Campbell - my angel.

This is a follow up to a post I wrote a few months after Campbell's initial diagnosis.

Rett Syndrome hasn't taken the joy out of Campbell's life. She's a beautiful 5 year old who can get almost anybody to do what she wants with a smile.

Preschool

I dreaded this day. Her first day of school. I was scared of how the other children would treat her. I was scared of how the teachers would treat her. It's bad enough that a lot of doctors didn't know much, if anything, about Rett Syndrome, and I knew the teachers didn't know what to expect.

Campbell on her first day of school. She seemed to be telling me she'd be fine. 

She seemed eager to get inter a new situation. I realized how much I'd been wanting to shield her from the rest of the world, but she needed to be a kid. I had to laugh a little, she looked at me and reassured me that she'd be ok.

She was right. She's got suck a wonderful smile, the other kids would wind up giving her all of the toys there, one at a time, over the day, just to see who got the biggest smile. This continued. Apparently, children have to be taught to treat other kids differently; none of them thought of her as any less than themselves.

She keeps engaged, and can enjoy the activities the other children enjoy - she just needs help with the motor skills.


For quite a while, I was happy that Campbell didn't show any signs of seizures, which is a huge concert with Rett Syndrome. She started having seizures, though, and seemed to have them in spurts. It's absolutely maddening to have to watch your child go through that.

She's been in the hospital a few times, as they have gotten too frequent on several occasions. She is completely exhausted, and sometimes couldn't rest more than 30 seconds between seizures. They would give her medicine, which was quite sedating(though I couldn't imagine her not needed the rest), and eventually stabilized her.

One of her hospital visits.

At home, she's on anti seizure medicines, which have helped a lot, but have also made her very much more tired. She is a bit more quiet more often, but she still manages to be one of the happiest girls I know. She naps more frequently, but "recharges her batteries" quickly.

As of yet, she's still non-ambulatory, but makes strides in therapy. Doctors have said there's no reason for her not to walk eventually, and it's the best for her prognosis, and fending of scoliosis, another common complication with Rett girls.

Medical news is very positive. Despite the relative rarity of Rett, more and more potential treatments are being developed. I can't stress this enough:

Treatment of Rett Syndrome can lead to effective treatment of Epilepsy, Parkinson's, Autism, Alzheimer's and many more. It is considered the "Rosetta Stone of neurological conditions".

For all the fear I've had, and still have, that Rett will keep Campbell from enjoying life, she's amazingly positive. She's still almost always outwardly happy right up until the point she needs something, and needs it quite a bit.

She's also still a fan of daddy making faces, and tickle-time.

The Actually Quite Nice Single Guy's Valentine's Day Blog Post

I've been single nearly 3 years now. I have my reasons, and yes, some days it would be nice to share certain things with. Blah blah blah...

Valentine's Day is almost here. Valentine's woes aren't all specific to Valentine's Day for some. It's the last day set aside for quite a while that reminds you that you don't have a significant other. The whole winter, for us in the Northern Hemisphere(the BEST hemisphere!) can feel a little lonely with the cold and lack of sunlight. Dwelling on that shit gets one nowhere, though.

I love the idea of romance. I don't mean being with someone in a codependent fashion just so one doesn't have to be single, I mean the real thing. There's the general idea one gets from movies, TV and books, but I think the specifics are different for each person.

Enough about that. I just want to write a little about my favorite couple, even though they aren't real people.

Kermit and Miss Piggy

I identified more with Kermit than with G.I. Joe growing up. I like the idea of being the quiet romantic that just wants to make people smile. Some think he's a pushover, or even "whipped", but it's hardly the case.

He's a leader. He doesn't order people around, he certainly doesn't tell his girlfriend what to do, yet everyone looks up to him. He's a genuine fella.

He's in charge, and doesn't just allow himself to dream: he doesn't even question why someone wouldn't. Life without dreams isn't nearly as good as with, no matter how lofty they may seem.

His goals aren't money and fame, just bringing a little happiness to as many people as he can.

Miss Piggy has loads of self confidence. In fact, the only other person's opinion she really values is Kermit. Even then, it doesn't affect her view of herself.

She's passionate. Wow. She seems high strung and temperamental often, sometimes to the point of a (usually deserved) karate chop to the stomach. 


The two make sense. For all of his being a dreamer, she's the one head-over-heels for him. He provides a calm strength that goes well with her passion for...well, everything she does. They both have their own separate happiness, but the two are so much better together.

Thanks for reading this far. Be it alone, or with a special someone that makes you happy to make happy:

Happy Valentine's Day