Part of being Abby

There are many occasions as a parent of an RS kid where we are "forced" to explain things. Why does she fall so much? Why does she turn her head back and forth? Why is she so small? For the longest time this would send me into a dissertation about RS and what it is. But then Abby got old enough to understand.

At some point it dawned on me that maybe she doesn't want to be a soapbox. Maybe she doesn't want to listen to her mother give the same lecture on her oddly formed brain. I wouldn't. 

So we tried some other things. Shorter explanations. Just saying she has RS and letting people wonder. Saying she has some vague developmental issues and stopping the conversations. And even getting annoyed when people were rude enough to ask. 

But then I realized it was time to take my own advice. Why does she fall? Because its part if being Abby. Why does she roll her head? Because its part of being Abby. 

Funny thing is... It works.

Posted by Kristen Fescoe

RS Oddities

One of the things I have found most peculiar about RS are the tiny little oddities. Not the balance problems or brain malformations but the smaller things people might not even notice. Things like the fact that her baby toes are oddly shaped. Her hair and nails are very thin. Her tooth enamel is weak. Her sternum is shaped oddly. She has bald patches (alopecia) on both sides of her head. She cannot regulate her body temperature well. Her resting body temp is very high (99.2 on average). She metabolizes food faster than anyone I have ever met. She experiences pain in the strangest ways.

It fascinates me. Some of her doctors are equally fascinated while others are driven crazy when I ask for the hundredth time whether some of those things are RS related or Abby related. I guess it's all part of her mystery.

This week she came to me in tears complaining of severe burning pain in her face. She was BESIDE herself and scaring me half to death. I went for ice and Brian gave her Tylenol. When she chomped down on the tylenol she told Brian it hurt. Turns out the burning pain was from a molar coming in. And just like that... no more pain. It was almost as if as soon as her body could process the pain the experience of the pain was gone.

She is a riddle that one. :D

Posted by Kristen Fescoe

Never walk, huh?

I can still go back there in my mind. That moment when I realize my baby would NOT BE NORMAL. First it was that horrible, wordless ultrasound. Then it was the meeting with Dr. "Gloom and Doom" when he outline for us all the things our daughter would likely never do.  

"She will most likely never walk or talk" he said.  

"It isn't likely that she will be able to think normally. " He continued. 

And I swear that it was in that moment that my girl decided to stick up her middle finger at the medical establishment. From that moment on she has been nothing but a medical miracle. 

My girl is running track. And every time she rounds the corner at full tilt I want to cry. That tiny baby who would never walk IS RUNNING. FAST. 

She is kicking ass at the long jump. My tiny little peanut (she's all of 3 foot and some change) jumped 5'2" at the last meet. 

She is kicking ass and taking names and I couldn't be prouder. So the little girl that needed a walker and a helmet (she still needs it on the playground at school) and surgery and therapy and a team of doctors is part of a team. She's one of the most popular kids on her team. She amazes me. I mean, seriously, literally, truly amazes me. She might fall on her face every other practice but she jumps up, laughs it off and KEEPS. ON. RUNNING.

We all need to keep on running.

Posted by Kristen Fescoe

A typical day...

Contributed by Heidi:

(This is a requested blog post from a previous comment)

A typical day with an RS child doesn't start any different that any other child, at least in our family. I work away from our home three days a week. However, I'll describe a day I'm fortunate enough to be home with my boys.

Ethan sleeps in his own room most nights. Lately has been bent on sleeping on the floor of our bedroom. I will admit that I have caved on several occasions …sigh.

Anyway if I have already woken up and I am downstairs he will stand at the top of the stairwell and throw his stuffed bear down the stairs since he is not allowed to carry anything down the stairs. He must concentrate on getting down them safely!

Ethan doesn't have the same food allergies as Abby or any of the other eating issues that seem to plague a majority of the other RS children. So Ethan loves a big breakfast! Only it takes him forever to get through it. Lots of utensils and cups dropped when the weakness and coordination come into play. I would say on average we have 15 to 20 drops a meal.

We have a structured and not structured type of a day. He loves cartoon network and I am not a mom that says no tv. I tend to relax on some of those issues as we are so structured and disciplined with so much therapy and those are the battles I choose to fight. He gets two sets of a therapeutic listening at 30 minutes each session, each four hours apart. He does something constructive during these like worksheets for OT or board games. Sometimes we even use eating as this can be OT for him. We fit in PT throughout the day with knee exercise (which we do during Wii), clamshells for strength with a band, eye exercises which comes in many forms including some on an iPad or computer.

But with all the "therapy" we fit in it results in "play" for him. There have been so many instances where I have watched him play and I find myself thinking, "oh what great therapy that is”. With an RS child everything they do is learned. Not much comes instinctively for them. Even a simple task at almost 6 years old of getting in and out of a car is not a coordinated task. So as we go in and out of stores and cars there is a constant watch and aide that we provided. As much as it would be wonderful to still put him in a seat of a shopping cart to be able to get thru a store without him walking zig zags, tripping or bumping into something. At 6 he doesn't fit in the seats anymore so we get a few looks when he bumps into people or he walks into their path or falls and even does a complete somersault from tripping over his own feet.

A typical family dinner, with lots of dropped utensils again! Off for bath or showers, which we have to say constantly sit down as slippery doesn't even describe it, bed time stories and then to bed. Lately he has been pushing the typical 5/6 year old why does everyone else get to stay up later and gets out of bed with questions to delay.

He makes us laugh on a daily basis with his witty sense of humor and his quick thinking.
So, a “normal day” for us isn't too different from that of most families… or its just become routine for us. Of course I didn't describe a day when we have multiple specialty appointments and our weekly therapies...but... Maybe another post!

My little chipmunk

I know that there have been a lot of negative posts lately so I finally have something funny to share. Today after school Abby and Grace were playing with the kids next door. They love playing with the little girl who just turned 6. All of the kids were riding bikes and running around our court. It was one of those rare peaceful moments when their mom and I could just stand and chat without anyone crying, whining, falling, hitting, etc. It was nice.

Anyway, the 6 year old girls (who usually plays more with Grace) rides her bike up to me and says "excuse me, I think it's cool that Abby's voice sounds like Alvin... you know the chipmunk". :D LOL... I wanted to burst out laughing on that one. Part of Abby's manifestation of RS is having very small stature and a very high pitch voice. To me it's just her voice but apparently to the general public she is chipmunk like. :D

So funny...