Tuesday, June 2, 2015


When I was reading over an e-mail I was composing to update how Abby has been doing to our friends at the University of Washington I had to take a minute, sit back, and think about how far this child has come. This what I had written:

I apologize for the delay in my response. Abby is going amazingly well. Her health has been excellent over the past year. She still has asthma, very serious food allergies and is small in stature but this has been her healthiest year yet! She is academically well above average. She is finished the 2nd grade school year reading above the 5th grade level and on par with 4th grade math. She still participates in OT and PT but will scale back her OT in the coming school year. Her balance steadily improves over time but she periodically experiences balance “setbacks”. We haven’t established whether it’s inner ear fluid, growth or just her RES that causes it. She is participating in track (yes, TRACK!) and doing so much better than we even expected. We thought she would be the slowest on her team and that is not true. She falls occasionally but can run very FAST! She just qualified for our local track and field championship in both a relay event and the long jump. She can long jump over 7 feet, despite her only 45” frame. She is attempting to qualify for the junior olympics in the long jump event. 

Is this the same kid I used to write about? Is this the same girl who we truly thought might never walk or climb or sit on her own? Can this really be the kid that required 5 day a week therapy to ensure she could learn to roll over? 

How can this be??? 

It is amazing. I will never, ever, ever forget how long and hard we all had to work to get her here. The therapy, surgery, doctors visits, exercises, appointments, hours of conversations and planning and on and on and on. It was SO DAMN HARD for all of us. But this, this makes it all worth it. 


Friday, March 27, 2015

A Unique Guest Post

I Am hoping to incorporate a new "series" on this blog which will include blog posts from individuals living with RS. If you or someone you know would like to contribute please let me know via the contact information in the right column. The first blog post in the "Life With Rhombencephalosynapsis" Series comes from my girl, Abby.

Written By Abigail Fescoe:

Heres the thing I have RS. People think I'm different that way. But I'm not. Here's a symptom of RS, I roll my head a whole lot. People like classmates, friends in and out of school, ask why do you roll your head? I've told some people why and from all that I learned, if I do people just stop asking and I can be myself. Another symptom is that balance is hard. I can't do activities that need really good balance, like the balance beam. Thats why I have to take PT. But I have taken PT since preschool all the way till now [which I'm in 2nd grade] and probably for a while longer. I also look at other people and what they're doing, and I get better and better. Here's a little story of my bad balance; me a few years ago me and my twin sister Grace were all riled up and it was dinnertime. At dinner we were laughing and jiggling around , and accidentally I slipped off the bench. Grace tried to grab me. But she did not. I fell on my tooth. It hurt VERY badly. Daddy [brian fescoe] picked me up. Grace was really sad and sorry when daddy figured out I broke my tooth. Later my mom [kristen fescoe] took me to surgerey. it was not fun in surgery.

This all written by a seven year old girl. It is a remind of both the struggles kids with RS face as well as their incredible power to overcome obstacles. Abby enjoyed writing this so much I think more will come from her. I do hope that her words help some of the newer families to the RS circle. These kids can overcome so much. They're miraculous!

Posted by Kristen Fescoe, March 2015

Tuesday, March 24, 2015

I think he likes her

I haven't updated at all lately, which means I really haven't updated on how things are going with Wisdom the Dog. Since he arrived, almost a year ago already, he has incorporated himself into the family very nicely. He knows he is here to serve but he is certainly more of a "normal dog" than the day we brought him home.

Abby and Wisdom have bonded nicely. Initially it looked like he was going to bond to Grace more but that has changed. He definitely has more of an affinity towards Abby. She isn't as warm and fuzzy as we had hoped she would be. We had hoped having a companion dog would help with some of her aversions but that hasn't occurred yet. I'm still hopeful. But he is a constant companion for her when she wants him.

Posted by Kristen Fescoe

Sunday, December 21, 2014

Trip to the ER, Non RS Related. Who Knew?

Heidi Wrote:

Living in our RS injury bubble, I forgot what a trip for injuries to the ER was like that wasn't from RS issues or RS accident. 

Rushing through the rain to our van resulted in my unfortunate timing of opening the door into Ethan' s head. Wham!
As he grabbed his forehead and tried to convince me he was ok, I knew it was going to require a trip to the ER.
He of course kept all the medical staff on their toes with his wit and humor. Asking for them to be quiet so he could try to fall asleep before the stitching started. Asking for them to evaluate this growth on his face as he was only eight and shouldn't have hair. And of course at the top of his lungs, repeating over and over" MOM DID IT!"
Ethan wanted them to know it was my fault and not his.
I'll take the blame...if only I could take the hurt with it.

Tuesday, November 4, 2014

Second Grade

So far our experience with second grade has been a remarkable difference from first grade. Last year brought behavioral outbursts, trips to the principals office (more than once), fighting with classmates and a downright awful experience for all of us.

Second grade... not one outburst. New friends. Listening to her teacher. Excelling in her academics. Where was this Abby last year??? We could not be more pleased! Today was the girls conference and I got hear how smart and well behaved and sweet she was. Was a difference a year makes!

She is reading at a fifth grade level and her math skills are in the top five percent of the class! We are just praying this continues!

And one more awesome detail. For the first time in her life she was able to WALK THE ENTIRE TIME when we went trick-or-treating as a family. Progress!!!

Posted by Kristen Fescoe

Friday, October 3, 2014

Itty Bitty

When Abby was born she weighed a mere four pounds and fourteen ounces. She was so small.

I had never held a baby quite as small as she was. As she got older we quickly realized that she would remain  small. She was never on any of the traditional growth charts.

Thankfully our pediatrician was satisfied with watching her grow along her own curve. She was sent to endocrine twice "just to be sure" but everything was seemingly normal.

Over the past seven plus years she has continued to grow at her own rate. Because she is a twin it was always somewhat evident how little she really was. At 7 she weighs just under 40 pounds. Her sister has a good 12 pound advantage and is about 3 inches taller.

Today as I folding laundry something dawned on me. Many of her skirts, shorts, capris and pants are 2-3T. Her waist is so small that we struggle to find pants that will stay up, even stretchy pants. Anyway, as I was folding laundry it occurred to me that my seven year old daughter and two year old son wear the SAME SIZE PANTS! Guess that outlines just how tiny she is.

Posted by Kristen Fescoe

Friday, May 16, 2014

Blueberries, check!

Food challenge number two was a whopping success. On Wednesday morning we had to be at CHOP by 7:30. Thankfully Abby is so cooperative about the restrictions (only clear fluids after midnight). We were early so we got checked in second. This also meant that we got a bed next to the window!

The test was started around 8:30 and she loved the blueberries immediately. The nurse and I thought things were going south when her stomach started to ache but it turned out she was just hungry. Her last challenge (pecans) yielded some itching of her tongue and face. This challenge came with NO SYMPTOMS!

So, now she can add blueberries to her safe list. The next challenge will be in July and that one will be walnuts.
I am so thankful and fortunate that despite all of these years of tests, appointments, surgery, etc. she remains the worlds best patient!

Posted by Kristen Fescoe

Monday, May 5, 2014

She got her dog!

After a very lousy first experience we have finally been matched with a dog for Abby. 

He is a two year old Golden Lab and his name is Wisdom. 

He is a very sweet dog and a great listener. Abby has been somewhat apprehensive about him but it will take time to bond. 

He adores the kids so he's a keeper. 

Posted by Kristen Fescoe

Wednesday, April 30, 2014

As we head up the hill

Life with Rhombencephalosynapsis is a lot like riding a roller coaster. You have your ups and your downs but you also have a of those moments where you are neither up or down... just coasting. For the past few months we have been coasting. We had the chiari / pappilodema scare earlier this year. When that passed we had a nice quiet lull.

There was some bloodwork and tests mixed in, but nothing major.

Now it seems we are climbing the hill. A recent dental visit showed that Abby Girl has an abscess above a dead tooth. Years ago Abs fell off of our wooden kitchen bench and landed on her tooth. That killed the nerve in the tooth. Since then the tooth has been black but otherwise fine. Now it seems she has developed an abcess above that tooth. She also has developed several large cavities due to her lack of enamel (she has weak enamel, thin hair and thin nails). They need to pull the tooth, drain the abscess and put pediatric crowns on the three teeth. With that much work she needs to be anesthetized. So on to surgery.

PLUS, her allergist wants to do food challenges for a couple of her allergies. Each one must be tested independently so that means two separate trips to the day medical center at CHOP for a full day of testing.

Thankfully she is the worlds toughest kid. She hears surgery and days at the hospital and she responds with "I can handle it" or "Mom, we can spend the day together." Part of me loves that attitude and part of me hates that her life has involved so much "doctoring" that these things are normal to her.

I guess we have not choice but to take the good with the bad.

FYI - Surgery is June 26th, First food challenge is May 14th and Second food challenge is waiting to be scheduled. Hopefully we can put off until July.

Posted by Kristen Fescoe

Tuesday, April 15, 2014

Endocrine, Track, Dental Surgery, oh my!

Sorry for the lag in posts of late. I got a new writing job (working from home still) so life has been crazier than normal. Despite the insanity of work there are plenty of fun things going on in our household. Abby has decided that reading at a 1st grade level is for the birds. She went through the 2nd  and 3rd grade levels and her work is matching a 4th grade level. He teachers don't even know what to do with her in reading. She is now analyzing articles. (That's my girl!)

I finally got her in for the panel of tests the endocrinologist ordered for her "small stature". It was a pain in the neck because we had to get an appointment for 8 o'clock on the nose.

Sister was amazing, laughing through the whole thing. We got the results and everything was NORMAL!

The girls have both started a new track season. Grace is off to an amazing start but my Abby girl is struggling a little more.

I think her small size and balance issues are starting to catch up a little. She has gotten all 4ths, 5ths and 6ths (often out of 4, 5 or 6) but its been tough. She is still pushing herself and keeping a smile on her beautiful face.

We saw a new pediatric dentist for her cavities (by the way, thank you RS for the weak nails, hair and tooth enamel) and dead tooth.

She fell about two years ago and hit a wooden bench with her front tooth. It's been dead even since and they found an abssess above it at her last dental visit. The pediatric dentist was not too happy about any of it. So now sister has to have surgery to remove the tooth, fill the cavities and put pediatric crowns (not the same as grown up crowns, I assure you... hours of research... but I digress) on her tiny teeth filled with mega cavities. I didn't anticipate needing surgery for this one but welcome to our life. Thank God she remains a rock start about the whole damn thing. The dentist says surgery and she smiles and says "It's okay, I'm used to it".

And lastly... we are getting a dog. More to come on that!

I also wanted to share again how grateful I am for this blog. I have met two new RS families in just the past few weeks. The fact that a simple blog can give information to families who need it reminds me that we RS families are not alone!

Posted by Kristen Fescoe