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

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

She's disabled?

As a parent of a child with Rhombecephalosysnapsis I find myself doing one of two things (more often that I would like to admit): 1) explaining why my child is "normal" and just like everyone else or 2) explaining why my child is disabled.

You see, RS is a funny thing. Unlike many other disorders if you look at a person with RS they often look close enough to "normal"  that you wouldn't take notice immediately. There are some visible issues at first glance. The bald patches. The tiny stature. The odd body makeup. The large head. But it isn't grossly different than a typical person.

It often isn't until they take that first big spill or start spinning or flapping that people around you realize there is something different. The frustration is that in my experience half of the people I encounter want to sell me the line of "but she looks so normal". At first I used to take this as a compliment (and from the right person, I still do.) But in some cases it is as if they are accusing you of making up a fictitious disorder. You find yourself explaining the disorder and what goes along with it.

On the other hand I also come across plenty of people who see her big head, tiny body, spinning around, flapping hands, etc. and look at her like she has rabies. To those people I want to scream "She's a normal little girl".

Yes, I do realize how much I am countering myself. And yes, I am talking out of both sides of my mouth. So, you ask, what DO I want? I think what I want is the same as any mom of a child with disabilities. I want people to ask questions (politely), gather information, get informed and then treat her like any other kid. Don't minimize the past six plus years and all of the hard work and time we have put into getting her where she is. Don't treat her like she is an oddity either.

I think all parents of special kids just want a little curiosity and a lot of acceptance.

Posted by Kristen Fescoe

What I've learned

Written by Heidi:

What I've Learned:

As a parent to a child with a rare brain disorder I have learned a lot. Leaving aside all the medical information I've had to self teach I also feel like I have studied:

• 101 Therapy: PT, OT, ST
• Design A Safe Room, ( this class is a 2 part, Long Term and Immediate Walk Thru For Visiting)
• Safety During Meals (including dinners out, it's not just forks and knives that are dangerous)
• Rules of Engagement (as RES has limited vocal filters)
• Dealing With The Know It All's (this can include friends, family members, doctors and those complete strangers that tend to pop up wherever)
• SPD 7.0 (I've only gotten to 7.0 as Ethan is 7 and this is an ever changing issue, I'm sure I will have more courses on this one)
• Balancing Act (you can't just be able to juggle 3 things...I thinks it's 5 for him, 3 for me and 10 for things ALL around)
• Organization:  More then meets the eye! ( thought you were organized before...think again)
• Designing an IEP: class includes designing for those that meet... oh wait...none of the check boxes...ok redesigning  IEP's,  
• Siblings:  how to get an older sibling to be kind... ah yes they fight....All the time...I've failed this one...don't ask me how.
• Holiday Decorating: hmmmm can that decorative pillow be a trip hazard...why yes it can!
• Fashion Design Fun: including what to wear to match those helmets and compression suits.
• Falling, How To Not Over React: The toddler Years: this course is developed over a period of time as 75-100 falls a day are the norm but lessen over the childhood years but never seem to go away...
• Parent Body: this includes how to use your arms, elbows, hips, feet, legs, head and shoulders as an ever present bumper for those 75-100 trips and falls each day.
• Knowing You Don't Know It All: how to deal with the unknown as no one can tell you what to expect ( our neurosurgeon on our first visit,  said what the hell is this)
• And yes, I'm aware that most of these courses can be geared to raising an  average child. But those that are raising the Special children, trust me when I say life college becomes a bit different.

Alopecia?

One of the more odd hallmarks of Rhombencephalosynapsis is alopecia. Whether male of female, most people with RS have some degree of baldness, typically patches.

I was asked by researchers conducting a study on RS to send pictures of her patches and her ears (kids with RS typically have low set forward slanted ears also) and I thought I would share.

When she was first diagnosed I remember thinking "how awful... on top of everything else my kid is going to have bald patches".

Thankfully there is a lot you can do with a good head of hair. :D

And for those of you following us for a while, yes she is going from blond to red. It definitely suits her firecracker personality. 

Posted by Kristen Fescoe

My sweet, sweet girl

I write so much about how Abby has a knack for kicking ass and taking names. The kid is a freaking enigma 99.9% of the time. People who meet her CANNOT believe that she is a "disabled" child. And in honesty, most of the time, neither can I.

But then there are those few and far between times that break my heart. Like tonight when she had a massive allergic reaction to a food allergy exposure. And after her tiny body wretched out the contents of her stomach and she laid in the tub itching her skinny little body I wanted to either cry or climb into that bathtub fully clothed and comfort her.

Why is life so hard for her? How the hell is she going to be a teenage with all of her "Abbyness"? How is life going to treat her? How the hell can I protect her from it all? I try to remind myself that she is easily 100 times stronger and more resilient than I am. She is a study on toughness. But I am her Mom. I have watched her suffer through therapy, surgery, anesthesia, doctors, braces, glasses, shots, tests and so many other things. I have rubbed her backed and shushed her through so many tears but I had to sit there and watch EVERYTHING be harder for her.

It isn't fair. None of it. Not one damn minute. Thankfully she doesn't even know it. This is her life and this is how it is for her. But for this one tiny little minute I question why it has to be so much harder for her.

I don't know now but I know there has to be a why. I guess we just have to be patient and wait for the answers. I am just incredibly thankful these moments are truly few and far between.

Posted by Kristen Fescoe

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

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

A Unique Perspective

Most of the members of the RS/RES group that I am a part of are parents of young children with Rhombencephalosynapsis. This is probably because we are not sure what the future holds for our children so we all are in search of answers (and camaraderie!). Recently one of our group members, Nichole, an ADULT with RS shared her story with us. She was kind enough to give Heidi and I permission to post it. Without further ado:

To my RES family,

I was diagnosed with RES by an MRI only 2 years ago following memory problems (forgetting to pick up my children from school, leaving hotplates on, forgetting regular phone numbers), and some nerve/sensory issues in my left shoulder (A sun burn feeling -  Parasthesia). I have very little Vermis on my cerebella and no midline. I have a slightly enlarged ventricle as well. I took my MRI to my neurologist who replied “You should be thankful you don’t have something serious like MS. Come back in a year and we will see how much your memory has declined”.

I have been looking for another neurologist to see ever since. I have not found any near me who know anything about RES. I am worried about my memory decline, and would love someone to tell me if I can do anything.

I asked the neurologist what is RES, and he said it didn’t really need addressing, it wasn’t affecting my health, and that I’m ok. Everything I know is from scientific journals (I have a science degree which has helped immeasurably), I have trawled websites and I have learnt so much from you all in such a short time….my RES family.

At the time of my memory/nerve issues, I spoke to a doctor for the first time about my weird brain stuff. Prior to that it had all seemed unconnected.

Sometimes I write with numbers in the middle of my words. I use 4 and f interchangeably all the time, however I have no trouble reading, never have. I can’t write a phone number down right the first time…ever… I need to check it 2 or three times.

I can’t tell left and right despite being a dancer all my life and a dance teacher while at uni. I would teach by pointing my fingers one way or the other.

I get lost ALL the time. In my local shopping centre, in my home suburb, on the way home from my gym across town. I get disoriented a lot. Even in small places, like a public toilet, I find it hard to find the exit. I need directions to get almost anywhere, and directions to get home as well. This is perhaps the most distressing part of my RES. I grew up in a small town, and my parents would always comment on how I never remembered where people lived, or where my dad worked. They thought I was just not really observant.

I am super clumsy. I have loads of scars on my legs and hands, I am constantly bruised. I have had a few big falls, especially as a kid and chipped my pelvis. Fake tan does wonders for bruised legs. My feet and my eyes are turned in. As a kid they called my eye condition congenital esotropia. The term is incorrect now, as I now know I don’t have “normal neurobiology” one of the diagnostic features. I also wore orthotics, which I hated, and I don’t think helped all that much. I have had 4 lots of corrective eye surgery all pre RES diagnosis. My eyes just eventually turn back in, especially if I am tired. It is considered elective plastic surgery here, so each time I have had to wait years, and have paid a lot for the ophthalmologist.

I have worn glasses since I was a baby. Only 4 years ago I was given a pair with a Prism, which drags my eye out. They have been great! I can read more smoothly now. I don’t see out of both eyes at once. As a kid I wore a patch/tape on my glasses, which from what I gather did not a lot at all.

Thus I have huge issues with depth perception. It took me 7 years to master my driver’s license test (all pre RES) and I had no idea why I was so bad at driving.

I can walk fine, though not in a straight line. I have a bit of a funny gait, and my head does have some forward backward movement when I walk, but no shaking side to side. I have trouble with proprioception. I feel like I don’t know which way is up sometimes. I always put my hand out in front of me when I walk through doorways, and I have trouble negotiating stairs.

Some of my nerves (ulnar/radial) in my hands innervate the wrong muscles. It hasn’t affected function, but I’m pretty sure it’s a weird RES thing.

I have some sensory processing issues. I hate lots of noise. I can’t filter noise in crowds. This manifests as Anxiety sometimes.

I have a blood clotting issue as well. I had a bilateral pulmonary embolis at age 18. I have been on and off anticoagulant treatment ever since. I have no idea if this is RES related, but they have never adequately diagnosed why my blood does it. It does not fit with other recognisable blood conditions. This is a lot of trouble when I travel. I get Deep Vein Thrombosis, so have to wear the leggings, carry injectible medicine with me when I’m more than 2 hours from home and when I fly, and my travel insurance won’t cover me.

Because I wasn’t good at sports at school, I studied hard. I did very well at school and went to a selective high school. I had a rebellious adolescence, left school, had a baby, then settled and went to university. I did very well at uni, and studied Science. I fell into psychology (by failing chemistry twice, despite giving it my all) and I now work as a clinical practice leader across a statewide specialist youth mental health/drug and alcohol service.

I married while I was studying. I have 2 amazing, healthy children. My daughter Halle looks exactly like me. She has all the same features as me. No signs of RES. My son is completely different to me. No signs of RES.

Things that helped…

My parents never knew I had RES, so my dad made me play heaps and heaps of sports. I think he thought I would learn coordination. It didn’t work, but it made me much more resilient. I was however, a great swimmer. I liked that it drowned out the sound.

All of my de-stressing strategies involve quiet time. I love the bath, the shower with my head under, doors closed. If I’m home alone I turn the TV off. If I listen to something, I listen to only one thing at a time. Sensory loading helps. Using smells and tactile sensations helps with my anxiety.

I do a class at the gym called “Body Balance”, it is a yoga, Tai Chi, Pilates mix to music. It has a whole section on balance. It has helped a lot.

The prisms in my glasses.

Finding someone who loves me, just as I am

I hope this helps someone, even a little.

Nichole (33 years old)

From Australia

I cannot personally thank Nichole enough for sharing this with us! 

Posted by Kristen Fescoe

Rare Disease Awareness Day

We have all seen the myriad of ads for various awareness days and ribbons and fundraisers for diseases. But what happens when no one has heard of the disease you or your child is diagnosed with? 

Abby has something called Rhombencephalosynpasis. This (and I am oversimplifying a little) means that where her cerebellum should be two separate lobes it is instead fused together with no vermis. She also has hydrocephalus, enlarged 3rd and 4th ventricles and partial agenesis (fusing) of her corpus callosum. 

When I was pregnant with her the doctors told us that she would be very unlikely to survive pregnancy and birth and that if she did the chances of her walking, talking or thinking about be minimal. We decided to take our chances and have some hope. I'm glad we did. 

Despite the doctors being SO WRONG she still struggles. With everything from balance, to fine motor skills to her social interactions with peers... she struggles. 

When your child has a diagnosis that people can understand they are (sometimes) sympathetic. People are willing to raise money and wear ribbons and do walk a thons. When they cannot pronounce the condition your child has you get a lot of blank stares and stupid questions. That part is hard. There is no where to send a check so that future generations of children with RS can have it a little better. There is very little research being conducted. VERY few doctors have a clue what it is. 

So today is Rare Disease Day. It's a day for families like ours to display our ribbons. I'm not personally trying to raise money, just a little awareness. (Although you can donate to the Rare Disease Cause HERE.) My daughter doesn't have cancer or downs syndrome or cystic fibrosis but she deserves as much awareness as any "known" disorder. She deserves to have people try to understand what she deals with. 

Today is her day. 

Guilt

Heidi nailed it with her last post. Parenting a child with RS creates a situation filled with fear, guilt, anxiety and downright paranoia. All parents worry. We are pre-programmed to do so. Even the most laid back individual suddenly becomes a worry wort when their child takes its first breath. Compound this innate hardwiring with a special needs child and you have a recipe for disaster.

Throughout the past almost six years our lives have been filled with a myriad of ups and downs. We have our huge victories. First steps after years of PT. Climbing the stairs to the top of the slide with no help. Being able to climb into the van unassisted. But we also have our "moments". The times that we pray no one is looking. When she can't stop flapping or spinning in the store and no matter how hard I try I can't stifle the urge to tell her "STOP SPINNING AND FLAPPING!!!!" The times that she plants her elbow square in her baby brothers tummy and he squeals with pain. Although I know she can't control her lack of balance I can't help but remind her to "BE CAREFUL!!!"

It's not easy. We know that our children will fall, flap, spin, talk too loud, be inappropriate with people, lead with their head or elbow or boney knee. They will take too long to buckle their seat belt. They will spill food all over the floor at EVERY. SINGLE. MEAL. They will require numerous calls from their teacher, the school nurse and/or the principal. We know this. We are prepared for this. But no amount of preparation is going to make it easy.

Posted by Kristen Fescoe

Days I lose my patience...then the guilt sits in

Written by Heidi:

There are days when being a parent to an RS child is very frustrating mentally and physically and the patience is thin or not even within reach. And yes, I know this goes for all parenting! Yet the frustrations of being an RS parent are magnified. There are days that I feel like my body can't take another bump from him.

I know he can't help it, which makes me feel EVEN more guilty. Even as he tries to get up on the couch to sit next time me I am banged a good 5 to 6 times. Some of the time we are talking head-to-head contact (if I happened to be looking down) as he does everything head first. I remember when he first started crawling it was as if he threw his head forward and the rest would follow. Well that still holds true as he gets himself on the couch, in a car or even into bed. Sometimes, when he is standing next to me at the couch and if I dare to have a cup of coffee sitting on the end table I am constant guard of the drink being knocked over as he wobbles to and fro while carrying on a conversation.

Now of course I wouldn't change a thing about his milestones. I prayed for the day he would crawl. We mastered getting onto a couch and into a car and love that he can stand and carry on a conversation, even if its in constant motion and twirling. And at times, the guilty times, I wish he could stand without his world titling on him. I wish he could give a high five without missing and twirling around and sometimes falling.

But sometimes I do find myself yelling and saying watch out, don't bang into that! And then realize He Can't Help That! Why did I just say that? Ugh! Guilty mom!

We all have guilty mom moments. Did I really just do that and did I really just say that? Guess I have to say, yep, I did...and try to do a bit better...it's what I tell them to do...

Hi Mrs. Fescoe, It's Abby's teacher...

Not exactly the voicemail I wanted to receive on a rainy Monday afternoon...

I came back in the house, drenched, and noticed that I had a voicemail. I put it off a few minutes since Abby came home wild, saying she "accidentally cried" at school and her face was blotchy, red and puffy. I didn't get much info out of her so I decided to give her a half an hour to rest and then revisit what had happened.

That's when I picked up the voicemail. I heard "Hi Mrs. Fescoe, it's Mrs. F.... Abby's teacher. I wanted to talk to you about a couple of things. {GULP} First there are a few birthdays coming up and I wanted to give you dates to send in vegan snacks for her {SIGH OF RELIEF}. Second, I wanted to see how her doctors appointments went {SECOND SIGH}. And I also wanted to talk to you about some behavior we are seeing. {SHIT!}

She did some brief explaining but I hung up the voicemail, called her back and prayed I would catch her before she left. I didn't see myself sleeping well if it had to wait until tomorrow. I lucked out and did catch her.

We went through the pleasantries, the party dates, the doctors visits... then got down to business. It seems my previously "model student" has escalated significantly. Meltdowns, temper, screaming, throwing things, obsessing over people and things, perseverating, singing inappropriately, being loud... you name it. I wish I could say I was surprised but we have been here before. In preschool we had to meet with the behaviorist and her OT to completely revamp Abby's behaviors and sensory plan because she was so out of control. Seems we are back to square one.

It's just so frustrating sometimes. I am not naive. I know that raising a child who is "different" will always be chock full of issues. It's because the "issues" have a tendency to ebb and flow that we become the most frustrated. There are times when things are good; her balance seems better, we have no significant falls, her behavior is great, etc. In those moments we *almost* forget that she has lifelong "issues". Because of that we sometimes feel blindsided when it falls apart.

I am not sure how, after almost six years of dealing with these ebbs and flows, we can still manage to be blindsided. Maybe it's my eternal optimism? Maybe it's self preservation? Maybe it's stupidity? I'm not sure but it sure as hell is hard!

So now we will be revamping her sensory/OT plan and it looks like the behavioral specialist will be called in. I am guessing her developmental pediatrician will want to get in on the planning and I am sure there will be another push for meds. Not sure what the outcome will be but I realize we're lucky to already have a team in place.


Posted by Kristen Fescoe

Poor baby girl

My super trooper has gone (very quickly) for adoring school to hating it. She has voiced some concerns about being tired and going all day. She has said that she misses me a lot. Well... last night at 1:30 I heard her sobbing on the monitor. She does that when she has a leg cramp so I poked my head in to tell her I was grabbing tylenol and gatorade and she choked out "I don't wanna go to school tomorrow". I wanted to bawl along with her.

We weren't sold on the idea of full day kindergarten to begin with. It's a VERY long day for a kid like Abby who tires easily. She had been doing so well we figured it was the right move. Now, I just don't know...

We're not doing anything imminently. We have to see if it just the transition and if it gets better. We can't make any big moves right now. It just sucks to see her so sad. She cried ALL MORNING getting ready. Everything from not wanting to be away from me to saying she would be embarrassed to cry. It broke my heart. We did this all last year with Grace so you'd think it would be easier.

She reluctantly got on the bus crying her tiny little eyes out. I wanted to grab her off the bus and take her home. This sucks! Hoping she at least had a good day when she got there. Probably won't hurt that I went to Target while she was at school to buy her like five treats (which I don't ever do!). :D

Feeding Issues and the Public School System

Abby has a two fold dietary issue. The first part is that she is severely allergic to eggs, milk, tree nuts and blueberries. Not only can't she eat them but she also can't touch them. The second part is the more traditional RS feeding issues. She tends to overstuff her mouth, forgets to chew, makes a giant mess, flaps when she eats, has trouble with certain textures, has a weak suck, etc.

Most of the children in our school system buy their lunch but because of her issues that isn't an option. One of the things that stressed me out all summer was how was Abby going to do with eating at school? At home and in preschool someone sits with her at all times when she eats. The fact that she is a big mess maker pales in comparison to the fear of her choking. What I don't know and still can't get an answer to is how closely is she being monitored when she eats?

I decided to shell out the big bucks for the Planetbox lunch system. It is easy enough that even with her poor motor skills, weak hand muscles and lousy hand eye coordination she can still open it pretty much by herself. It also allows me to pack her foods specifically so she is safe. It cost us almost $70 but if we were buying lunch it would probably take us all of two months or so to be at that cost. So well worth it for us. I just pray that it is enough to keep her fed and safe!

Kindergarten ... Day Two

So far so good. There have been minimal tears and not a lot of drama. Day one was a cake walk which was not what I expected. I thought out of the two of them SOMEONE would be in hysterics by the time the bus rolled up. Not the case. Then I thought maybe they were saving that fun for day two. Again, nope! I am thrilled about that.

The things I am not thrilled about...

1. I have written two notes to the teacher and one e-mail and gotten NO RESPONSE! I feel like since she is there full day and is only five having open communication isn't asking for a lot. That leaves me a little cold.

2. She has told me that she has cried a couple of times about missing Grace and I. And she says she has cried to the point that they had to "take a walk". I wish I knew exactly what is going on. Again... nothing from school.

3. She is not getting the rest period mid-day that I was assured the class would get. By the time she comes home she can't keep from flapping, spinning and head rolling for the rest of the day.

I guess it could be a heck of a lot worse. She is navigating the bus with little problem and I was very fearful of the bus. She seems to be doing okay with the lunch situation there (I send her lunch because of her allergies). Next week is Back To School night so I am VERY anxious to get to meet her teacher and get the "deets".

An RS twin

When Abby was first diagnosed with Rhombencephalosynapsis the doctors made sure to inform us how incredibly rare it was. They explained that it happens at a certain gestational period but the specific cause is unknown. I have always thought the fact that Abby is a twin and her twin does not have RS is very interesting.

Life with twins is interesting. Life with one twin who is atypical and one who is more typical (although Grace her fair share of developmental issues unrelated to RS...) is even more interesting. We have to make sure we meet the needs of each girl since they are twins. We also have to make sure that the more "needy" twin doesn't get more than her fair share of attention. It has always been a balancing act.

The amazing thing is that Grace has turned into such a caring and nurturing child. She won't let anyone pick on her sister. She will make sure she is included, even though Abby is socially very awkward. She cares so deeply for her sister it amazes me to watch.

Recently we took the kids to the park that has a fair amount of accomodative play equipment. We love this park since the girls can both do their thing without us hovering. The girls were playing when Abby fell off of a climbing ladder. The floor is padded so it wasn't catastrophic but it still hurt. Grace immediately came running to Abby apologizing for "not remembering that Abby has terrible balance"... From the mouth of a five year old.

In that moment it felt so bittersweet. The sweet in that she cares SO MUCH for her sister. The bitter in that she felt responsible. Like if she had slowed down her play than Abby wouldn't have fallen. I don't believe for one second that Abby hold Grace back. They both move at their own pace. That doesn't mean Grace doesn't slow down sometimes to move at her sisters pace. I just can't help but wonder how this will effect them and their development later on. I think being twins makes them stronger. It helps them grow and learn and keep pace. They challenge each other in wonderful ways.

Some day Grace will be writing her own blog post on being an RS twin. Until that time I pray that she will tell us all how enriched her life is because of her sisters diagnosis.

Another thought on accommodations

Written by Heidi:


Our Accommodations
(working off Kris's thoughts)

Unlike Abby, Ethan is not to far behind on stature so our accommodations aren't the same. He is also a year older and I hate to say it, but boys due tend to be stronger and I wonder if this can make a difference in the RS world. So we have made the decision to make fewer accommodations for him.
(After reading Kristen's blog I may sound mean :-( )

We choose to try to have him develop his skills without much aide in hopes that he would not feel the frustration when he was not in our “home” environment. He too struggles with hanging up a hand towel, more so because of balance issues than stature. It sure takes some midline coordination to do this. Many times I find it on the ledge of the sink. My thoughts, I'm so glad he used it! It means he washed his hands :-)

I actually never thought to add the extra handrail on the stairs that one I would of liked. It may have been a blessing in disguise however, as I'm sure his older brother would of found a way to wedge and slide the cats down between them.

This brings up another thought, how much effect is there because Ethan is a second born and Abby part of a first set. Could this be why we choose to not accommodate too much for him? You have to take in consideration that you cannot change the older siblings life too much. They are already going through their own issues with having the new kid on the block being "special". Travis also had 6 1/2 years as an only child. He was the "special" one. Come to find out "special" doesn't mean the same to a kid as it does to us adults regardless if the word needs is followed by it.

Now that's not to say we didn't make some changes. We still have the bumper pads around the fireplace. ALL around it as it is slate. this has saved more heads then just Ethan's. We also added handicap rails in the boys bath with a great horizontal low one on the back wall he can grab to get in and out ....we do however have to remind him to use it! Sigh...we also still have a special stroller. We did use a gate at the top of the stairs for a while so as he ran around up there he didn't trip and go head first down. Now it’s just used to keep the dog out of trouble at night. We no longer need a helmet! :-) :-) :-)

School has also made their own accommodations for Ethan. Once you add a crew of youngsters together the level of safety rises. He rides the special needs bus, at least for one more year. They use to have a chair with arms on it (no longer needed), he does have to wear his helmet at recess and PE, but hopefully just this one more school year also. He either has to be in front of a line or last to avoid tripping and falling when navigating through the halls.

Other then those we haven't changed much in our house.