Jo's Take

I asked in a pervious post if anyone felt compelled to share their story and I was so excited to see that Jo and Harry wanted to share. Here is what Jo wrote:

Hi All! 

My name is Joanne and I have a 13 year old son with Rhombencephalosynapsis. Because my story is 13 years old I would be more than happy to share my experiences and let you all know what we all have in common. When I first started looking for answers back then, there was nothing, it wasn't even referred to as RS, we here in Australia have a very different term for that. What I did find scared the hell out of me and I just stopped researching and focused on Harry. I am off to see a Brain Lecture with a specialist in brain structure and genetic malformations, and this prompted me to to google the old 22 letter word that took me 3 years to learn to spell.

To set the current picture for you......


We live in Brisbane Australia, and Harrison attends High School in the year he is supposed to be in. His current workable diagnosis is ASD-Austism Spectrum Disorder- PDD-NOS- Pervasive Developmental Disorder Not otherwise Specified, and throw in a smattering of ADHD.


As you know if you are too rare you need to fit somewhere so here we are. What I have learned over the years is they are all just a little bit different from each other. A lot of symptoms and defects or as I call them wobbly parts are very similar.


Early dogged intervention got my boy to where he is today.


Doctors are not all equal, as Special needs mum's, dad's and carer's we are our child's specialists. We know them best.


So the short of it is, he had his first MRI at nearly 2 after I persisted, because his 

Specialists Pediatrician told me boys develop slower than girls!!! His Neurologist said, he will never walk or talk and don't expect him to win any races. We don't know how he will live, he is going to need around the clock care. For those of you out there who are new to this, we are constantly proving these "professionals" wrong. 

At 13 he has achieved teaching himself to read at the age of 4, he starting walking and speaking at 3! 

• He started school on the day he was meant to, and has achieved grades higher than the stars.
• He completed his level 5 Piano studies all with honors at the ripe old age of 10, most kids get there by 18.He writes code in his spare time and loves reading.
• He swims, and as he hypotonic has just achieved 25 m, he even surprised himself. He runs the school cross country every year, Harry style.
• He has lots of friends, mostly nerds but the girls love him. He funny and witty and looks at life from the other side around the corner and teachers love it. 

Harry is the eldest of three boys, the other two are considered "normal" sorry neurotypical. Sometimes I wonder!

Generally he is a great kid, and after 13 years and probably while he is in school he is light on maintenance. He list of struggles are long, but that is for another night. He is in my eyes always going to need help. I will just give you guys the shiny bits tonight, but in saying that the ugly bits give you the victories. 


As you all know just when we get comfortable they go and change the goal posts, sleep is very overrated.

Harry will love to answer any questions if you have some.
Always the annoying optimist.
Jo and Harry xx

The Questions You Really Want to Ask?

Raising a child with a rare condition like rhombencephalosynapsis is something entirely different than most parenting experiences. If your child is born with a disease that has been studied and most doctors have heard of you have channels to gather information. When your child is among a group of people that number in the hundreds at best your channels are much narrower. I have been lucky enough to use the internet to meet some wonderful people and gather plenty of information. When I look back at my early days of gathering information what strikes me most are the questions that I really wanted to ask but didn't dare. I have compiled a list of some of those questions and I am doing my best to answer them with a few years of Rhombencephalosynapsis parenting under my belt. Here goes:

Will my child look normal?

Will anyone want to marry my son/daughter?

How am I going to afford all of these appointments and medical crap?

How the hell am I going to do this?

How will this effect my other children?

What do I do when the doctor caring for my kid has never heard of her diagnosis?

How long will my child live?

Will She be able to have children?

Will she make friends?

How will my extended family handle my child?

Will the kids at school think my kid is weird?

Will we need things like a wheelchair?

Why are her eyes crossed?

If she is different, will she grow up and move out or will she always need me?

What do I do if I have questions no one can answer?

Am I alone in this?

Will it effect my marriage?

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

Rare Disease Day

February 28th marks the seventh annual Rare Disease Day. As a parent of a child living with a rare condition we know how challenging a rare diagnosis is. There are thousands of families who have children living with special needs. While some have a good idea of why, what the future is likely to hold and what might be their childs future, some do not. There is no body of literature compiled to look at adolescents, adults, child rearing, careers, etc. for individuals living with Rhombencephalosynapsis. 

So, instead the RS families live as a community supporting each other and sharing all the information we have. I am lucky to have this support system as well as my amazing family and friends.  

Thanks to Kelly and Jeff for creating this beautiful way to honor our RS kiddo's today!!!

Realizations

As Jack progresses through various stages of infancy and toddlerhood it has been remarkable how different our parenting experience has been. Instead of worrying about scheduling surgery or losing weight or finding the right therapist we worry about him falling when he runs too fast, whether his shoes still fit and when we can fit in a haircut. "Normal" stuff.

Brian and I also find ourselves asking "did we ever get to really enjoy it with the girls". I first I felt guilt for even thinking it. Of course I adored the girls so much but I think I spent so much time worrying and stressing that I barely ever sat down and just enjoyed them being in certain stages.

The more I sit back and think about it the more I get angry. Angry that RS took that from us. Angry that RS made us less present parents for our girls. Angry that I could have been more fun, engaging, energetic and creative had I not been worried about all the other crap.

Fortunately I am not one to dwell too much on the past. And all I can do at this point is never let RS steal another minute from my daughter or my family.

Posted by Kristen Fescoe

Clear your plate!

One of the many balancing acts that parents face when raising kids who are atypical is how much they are truly capable of. Most kids with RS learn early on that they are occasionally able to use their diagnosis to their benefit.

When Abby started school it took her less than a month to discover that if she wanted out of an assignment she could claim to be tired and voila, excuse given. She has used this to her advantage many times over. 

Here at home we are wise to her game. That being said we walk the tightrope between what chores a typical kid can do and what she can handle. Take for example doing dishes after dinner. Grace can clear all of the dishes, put things in the fridge, load the dishwasher, wipe the table and clean around and under the table. Abby struggles with some of it. Clearing dishes means falls (and spilling). Loading the dishwasher means dropping dishes. So the struggle is do we have her do the work so she learns or do we avoid potential falls, messes and broken dishes?

We have opted to push her. It's messy and frustrating but later on I think it will pay off. Plus she can never accuse us of treating her different than her sister. 

We have similar struggles with dressing herself, putting on coats and hats, folding laundry, buckling her seatbelt and many others. While it would be way easier for all of us (right now) to do it for her I don't think it would help her in the long run. 

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.

The right girl for the job

I wrote this months ago and somehow forgot to post. SO here it is a little late. ;D

Last week my girl had her bi annual visit with the allergist. You are in addition to neuro, neuro surg, ophthalmology, neuro-ophthal, peds, OT, PT, endocrine, cardio and ENT she also has asthma, eczema, seasonal and severe food allergies to eggs, milk, blueberries, agave and tree nuts. 

She's had a few accidental exposures recently so we figured we'd probably get to avoid skin testing and blood work this visit. Unfortunately we were wrong. The allergist wanted to continue her series of tree nut testing so after telling her he'd probably be needle and prick free... I had to take it back. 

When I expected tears she just smiled. When they pricked her arm over and over she jokingly yelled "oww" and laughed each time. 

The nurse was a captive audience and Abby knew it. As she avoided itching her very irritated arm she looked at her very serious looking doctor and said "Dr. Fielder, you do know what you're doing, right?" She had us all I stitches. 

After I got home I to thinking about how for so many kids this would be traumatic. They told her she would need to start a series of food challenges and she responded with "looking forward it". When they told us she had to be at the hospital by 7:30 she said "yay... I'll get Momma all to myself that early". 

The kid is a dang rock star. It is clear to me in those moments that God knew what he was doing. Most kids would be a puddle on the floor if they had to do one tenth of what she does. But not Abby. She just smiles. Obviously she was born with the perfect disposition to suit her life. 

For that I am incredibly grateful!

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

RS and the perils of being a twin

Most of the time being a twin has served Abby very well. If it weren't for Grace hitting milestones on time I am not sure we would have realized so early on that Abby was behind. I doubt she would have crawled or walked when she did had she not had a sister to keep up with. There are things like running track, swimming, climbing at the playground, etc. that we might not have done had Grace not been more developmentally age appropriate.

But every once in a while it back fires. Like tonight. Grace is a great swimmer. She has been swimming since she was four. Abby is a good swimmer although her awkward development means awkward swimming. If you throw her in the middle of the pool she can swim to the side (thank God) but it isn't necessarily pretty.

Grace has practiced all summer and tonight she passed her diving board test. She had to swim the length of the pool freestyle, tread water for 30 seconds and swim back. This is not easy as we have a big neighborhood pool. It is actually a feat few 6 years olds accomplish at our pool. While Grace was swimming Abby was her biggest cheerleader. After she passed Abby was hugging her and cheering for her. She was the first in line to watch her dive.

Then it dawned on her.

Grace accomplished yet another thing that she did not. She got passed by. Her "disability" slowed her down. Although not entirely true because Grace is a physical anomaly for her age but still...

That's when the tears start. And the snowball effect happens. It becomes all too obvious that she is different. She is slower and weaker and can't do everything that she wants to do. In those moments the fact that she has come SO FAR means absolutely positively nothing to her. And that isn't easy to watch.

Lucky for us those moments are few and far between. But when they happen... we all want to cry with her.

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

A few things I've learned

The past almost six years have taught me A LOT of lessons. Here are a few of the things I have learned along the way.

The Good:

1. It isn't as hard as I thought it was going to be. 
2. It isn't as bad as I imagined it. 
3. It isn't as rare as they had us believe. 

The Bad:

1. It isn't easy. There are a lot of tough days. 
2. Watching life be a little more difficult for your child is hard. Really hard. 
3. Parenting is hard. Parenting a round child that doesn't fit in a square hole is harder. 

The Ugly:

1. You will spend more time in a doctors office that you thought possible.
2. You will know every nurse, office assistant and doctor by first name. 
3. You will wonder if life will ever get easier (see above... it does!)
4. You will question EVERY. SINGLE. DECISION. you make. 

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

Happy Mothers day

This is a poem that was edited by a member of our RS group (Ashlee Lyons Kuhl) and it was perfect for our Mothers Day post. 

It can happen during utero, and you may not find out until after birth. 
The news that makes you tremble, the news that shakes the earth.

"We see a distinct problem ma'am, there's an issue with the brain.
We're not sure your child's chances ma'am, the condition, we normally don’t maintain"

You think "Why me? Why us?" As you try to choke back tears.
Your world crashing around you, while you're consumed by your worst fears.

That sharp pain in your chest. The heart break, like a knife.
Watching your precious child, fight so hard for their life.

The first few months are brutal, You walk around like a zombie.
Endlessly wondering "Will my baby get to call me mommy?"

"Don't worry, it will get better" Is something you can't stand to hear.
It feels like everything is getting worse! The end, it feels so near.

Then suddenly the days seem to get a little brighter.
As you stare with loving eyes at your precious little fighter.

You've never been so proud of one single little soul.
Gradually reaching milestones and accomplishing their goals.

A RS moms journey is one that never ends.
Filled with support and compassion of other RS mom friends.

We all love a little deeper and care a little more.
Reminding ourselves everyday of how much we can be thankful for.

We were given this life for a reason and at times it can get rough.
But we use our kids as examples of how to remain tough.

For us, strength is not a choice, it's a lifestyle we have to lead.
It's what keeps us going, and it's what our RS child needs!

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. 

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

RS Forum

I wanted to get a new (to me) link out there. A couple of the RS families have worked very hard to create a forum space for information about RS. This will provide a place to see archived topics, papers, research, etc. You will definitely want to check it out. (You can click below to be directed to the url.)

RS FORUM