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

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.

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

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

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

The dog that wasn't meant to be.

As many of you know years ago we got Abby on the waiting list to be placed with a very special dog.


After two and a half years of the idea of adopting a companion dog for Abby we FINALLY got the call. When I heard the words "we have a dog for you" I was shocked at just how excited I was. I am not a huge dog person (don't burn me for this one), I really never have been. But the thought of having a (well-trained) dog that would help make my girls life easier made it all sound worthwhile.

After several impatient hours I got ahold of our contact and she told me about our match. He was a black lab mix who was two and a half. We "flunked out" of the full service dog program for being too lazy. A dog that was too lazy sounded like a dog that would fit in well around here. After two more days of waiting we got the paperwork in the mail including the "shopping list" of items we needed before the dog could come home. THAT NIGHT we got everything off the list. The next day we called and had a date to pick him up.

 *The girls tried out every dog bed in the store

The excitement in our house was palpable. We had waited so long and spent so much time planning and talking about it that when it finally was happening it seemed surreal. The girls were ecstatic. I can still see their little faces when we told them they were getting a dog.

The day finally came and last week we went to meet Fulton, our dog. It was a long drive but we got there on time and met our new furry friend.



 I haven't seen the girls that happy since we went to Disney World. He was a ginormous 71 lb beast of a dog. The girls were instantly in love. He seemed like a total sweetie.

We got to take him for a walk by ourselves to get to know him better. The weather was miserable and rainy but we went anyway. I had hoped to let the girls walk him but he was a little more skittish on the leash than expected. Brian did most of the walking.



The next hour was spent going over paperwork, his commands, vet records and details. The girls did their best to sit still but they were itching for more doggie time. We finally got to go into the training center and learn the hands on commands. He did well for Brian and I but not quite as well as I had hoped. He also didn't listen to the girls at all. We were told (over and over) that it would be a 3-4 week adjustment period and we would have to be patient.

After a few hours of prep we were on the road with our new family member.

This got longer than expected so let's call it a cliff hanger. The rest of the story tomorrow...

A Kindergarten Retrospective

She is almost done. T-Minus five school days and counting. Rewind back to September and you will see a nervous, anxious mess of a Mom wondering what this year would hold. Yes, she had two years of preschool and yes she did awesome but a full day? How would she handle it???

The answer: with style and grace!

She was lucky enough to get teacher who "get" her. She is surrounded by OT's and PT's and aides that have known her since she was 3. Her teacher was a rock star and her classroom aides were amazing. I could never have predicted how well she would do. She made friends. She learned so much I can't even begin to say. She explored and experimented and went outside her comfort zone.

Her therapists did amazing work with her too this year. She is sturdier and stronger than we ever thought she could be. When we go on outings we rarely have to take her buggy!

I'm am sitting here in complete awe of my girls and the people who made her an amazing almost six year old. 

Flashing back (to the flashback ;D) to September... I remember thinking to myself "I am so sad that for half of her waking hours she will be with SOMEONE OTHER THAN ME. Who will hug her when she falls? Who will rub her legs when they ache? Who will tell her it's okay when she hits her head"?

But she had people for that. Amazing, caring, loving people who took care of her like I would. They understood her and loved her in a way I couldn't have imagined. I am incredibly grateful!

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

Rhombencephalosynapsis goes to Disney World

As most of you know we just got home from a week long vacation in Disney World. The short version of the story is that we were supposed to go last Christmas but ten days before we left my Dad was diagnosed with Stage IV lymphoma and almost did not make it. Thankfully he is kicking cancers sorry butt and so we went. It was a perfect "victory lap" for our family.

We thought a lot in advance about what this experience would be like for Abby. Disney is obviously exhausting for any five year old but what about a five year old who tired from a walk around the block? How much would we have to slow down to accommodate her?

To try to deal with it in advance we rented a double jogging stroller from a local rental place (not the uncomfortable Disney ones). This would give her a way to ride from attraction to attraction while getting some rest. We made sure to pack plenty of snacks and drinks to keep her filled up with energy. We even resigned ourselves to letting her have some good old sugar when necessary. ;D This worked for about the first three hours.

We got into what would be our first long line and quickly realized this was not going to work well. Even though it wasn't that hot (about 75) we was drained after standing for half an hour. I started to panic at the thought of either holding all 32 pounds of her her through line after line (and killing my back) or having to sit out of rides with her. Neither one seemed like a good option.

I then remembered on the Disney site that they outlines the measures they go to in order to accommodate people with disabilities. Although we don't tend to think of her as "disabled" these are the times that her "differences" are glaring. I found a young woman working there and asked her about how we might be able to work around this problem. They were SO helpful.

She outlined what they like to do and she sent us to guest services immediately to get started. We informed them that we have someone in our group with a "disability" and we were given a "red card". This gives you access to the rides through the Fast Pass lines so you generally wait about ten minutes for a ride instead of an hour or more. They usually only write them for a group of 6 but we got one for our whole group. So at each line we flashed our card and walked right on.

For one short moment I felt a pang of guilt (not sure if that is the right word) about getting a "reward" for her disability but then I thought how much she deserved it. Should she have to miss out or be too exhausted to enjoy herself? NO!

There were still small matters like her food allergies and her balance winding through lines and the park itself. But since we took care of the larger issue of the standing we were in good shape.

Posted by Kristen Fescoe

Looking back

Not sure why I decided to post this walk down memory lane but here it is. :D

My sweet, perfect little girls!

 We hated that dang tube! 

 Got her glasses around 9 months

 Grace started to move and groove but Abby was still stuck in the Boppy. 

Eye surgery was around 10 months.  

 The walker came at around 16 months. 

 By 18 months she could almost keep up with her sister!

 Being bribed with lollipops didn't hurt. :D

 At about 20 months she started to cruise

 And by 2 she was off to the races!

ER Visit ( for a splinter! )

Written by Heidi:


So out of all the falls and bumps into walls we contend with on a daily basis I find myself taking Ethan to the ER for a very large and very deep splinter this past week. This on the same day I hear that Abby fell down the stairs...

So, here's the story: as I was preparing dinner Ethan went out onto the deck to have a popsicle. Moments later he comes rushing back in stating he needed a Band Aid. This is very common for him; to come in and place a Band Aid on all bumps and bruises. We keep them down low so he can self doctor himself up. I quickly looked down and see no blood so I figure we are good! Just a stubbed toe! He puts two Band Aids on and moves off to play Wii before we have to leave for PT. I finishing prepping dinner and rush in to get him moving. Then out of the clear blue and says to me "mom you really have to do something about my toe! " Ooookkkkay.... Peel the bandage off and whoa...largest splinter I've ever seen.

I have enough enough time to run, get tweezers and pull this thing out...Nope! Not nudging after 15 minutes while he screamed! This from a kid that normally has a high threshold to pain.

So now it’s decision time. Drive thru rush hour traffic to his normal children's hospital which has all his medical records. The problem is that this is a training hospital so a lot of the time you get some resident that freaks out over his diagnosis and will most likely focus on that instead of just numbing him up and getting the thing out. (By the way I can't take him to a doc in the box due to his insurance and it’s too late in the day for his regular doc). The other option, drive to the closest ER, 6 minutes away, and known as a good ER. This means I will have to establish him as a patient which will require a ton of medical background and I will be educating them the whole time since he doesn't fit in any of their typical boxes. Its always other and a list with explanations. Goodness its just a splinter...decisions!

So I call the house that his older brother ran down to hang out with a friend and ask the mom if he can stay, as I need to run Ethan to the ER...she is well aware of Ethan and says ‘of course!’ (Thanks Rose!) and off we go… to the new and closer hospital.

Of course his intake info takes forever but we end up with a level headed and experienced doc that doesn't even respond to his diagnosis. What, this never happens but I'm thankful. Can he really just be treated as a "regular" kid and not a specimen? Why yes he can!
Ethan is a trooper, gets thru the anesthetic and they incision and remove the splinter. Doc did not make me feel completely foolish for bringing him in for a splinter. Did say we would of never gotten that out and could and most likely gotten infected.

So once in our life a trip to the ER is pretty easy (it was just a splinter) but as we had been admitted for a fever once maybe you can appreciate our appreciation for normalcy for once!

Stock in Band Aid?

Can anyone tell me how much it would cost me to buy some stock in whoever owns the Band Aid brand? We blow through so many Band Aid's in our house that I might as well gain some of the profit from it. We go through so many Band Aid's in any given week that we usually have three or four boxes open so Abby can coordinate her bandage to her outfit. It isn't easy being a kid with no balance!

Not many kids could smile after that. She went head first into a chair and her egg stood out about half an inch (literally!) off her head. Three days later and her head is still completely bruised.

Three days later