Just Like Riding A Bike

There is nothing more exciting than the first time those training wheels come off. Sure, every kid will fall a couple of times but they will get back up and try again. Within hours many kids are off to the races. Except, if that kid has Rhombencephalosynapsis. Learning to ride a bike and manage balance is a challenge for all kids. Imagine trying to learn this new skills while struggling to maintain balance on two feet!

Well, that is why watching this video sent to me by Heidi of Ethan mastering two wheels brought tears to my eyes. Go Ethan, Go!!!!

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.

A Step Towards Growing Up

Written by Heidi:

We finally have Ethan involved in extra activities OTHER then doctor appointments and therapy. Its been laying heavy on me not signing him up for anything but with an older child already involved in a few activities, juggling Ethans "extras" and work I've sort of put it off. Can we say GUILT! It (the dreaded mother guilt we all can attest to) was really settling in as he is now seven and half and our older child was in swimming at age 1. So scouting has become our life over the past few weeks. Travis, our older son, has been in scouts since he was in the 2nd grade but as a Boy Scout, I don't have to hold his hand nearly as much, so I felt very compelled to at least do the same for Ethan. Its been great to see him with peers and to not Forget that he CAN be just a little boy. A boy who can run and jump, salute and share with other boys the excitement of being a team. It sets my heart with a warmth that makes me feel like I'm not doing that bad of a job at this parenting thing.

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.

Blindly Living In Safe Mode

Things were going so much better for Ethan. The summer was spent doing A LOT of therapy. We completed a Metronome Therapy that improved his balance and attention span dramatically. "Back-to-school" went smoothly and we were back into a routine of school and therapy with just an added Speech Therapy for a few months.

So we spent this weekend around our school systems Homecoming. Ethan was looking forward to the parade and football game. This would be his first football game as we have been hesitant in the past of steep metal bleachers but the time was right. All day we kept going back and forth do we go, do we not. It had been an eventful weekend already with finding a snake in the kitchen Friday, glass in my foot Saturday prior to some morning festivals at the Primary school and we thought let's just stay home and Veg...Why O Why didn't we stick with that thought...

During the second quarter we made a restroom run. Heading back he let go of my hand as I spoke to a friend I met up with and he headed up the bleachers to his dad without me. He has been fighting hand holding still as apparently "No 7 year old wants to look like a baby!" AND it happened...he tripped over his feet and WHAM!!! head first into the corner of a metal bleacher. Heart stopping and I knew by the force and sound this was not going to be a band aid repair.

As he turned with his hand over his forehead I took it away and whoa...blood...spurting...and I clasped my hand over the gash. Ethan then looks down to his hand and sees blood and starts crying. I look up to my husband and shout get the chairs, we got to go, then turn and head down the stairs. With one hand clasp to his forehead and feeling the pulsating of blood on my palm, grasping with the other arm around his chest I move quickly to find help. My friend is ahead of me and is trying to wave down a medic on the field and I approach 2 police officers and they immediately call for the EMS team on the field. After "briefly" giving a  medical history on him they load him onto a stretcher, and my phone rings. It's our older son...Damn!!! 

He had left to get Ethan a hot dog and poor kid returns to find his family and stuff gone. My friend takes control and decides to go be with him, as I follow the stretcher to the ambulance and my husband goes to get our van and meet us at the ER. The Student body in the bleachers give a cheer to the little guy, and my phone goes off again...our neighbor girl asking Ms. Heidi is that you, what's wrong...then  my text starts to go off, another neighbor and friends asking is that us heading to the ambulance...and so it goes,

After arriving at the hospital and a CT Scan is ordered the decision comes down to stitches or glue. Ethan is adamant ..NO stitches! As the docs decide on which way to go, the tech arrives for the CT. He says, What's going on... and Ethan responds with, What do you think...I have a hole in my head! 

The Docs decide on glue and butterfly and begin to clean the wound...I'm watching and thinking no way...I see skull! Glue is not going to work! Just then, yep...change of plans to stitches. But even  though he's not liking the stitches idea, he ends up falling asleep during it after they burrito him As he is use to deep compression it's a comfort to him and not a fear. So Stitches done!! let's go! Nope! they now can't rule out a possible skull fracture from the CT... So it's off via ambulance to the Children's Hospital for 24 hours of observation for a seizure.

After hours in the Children's ER and many, many, docs coming thru they decide after 8 hours to place a neck collar on him, an IV (which he slept thru both of those). One Trauma doc tries to wake him to check his pupils. Ethan has not having any of that, and Doc says why isn't he opening his eyes..my not so nice response.. He's 7 and it's 3 in the morning!! 

So we are transferred to the PICU for the remainder of his visit. After 1 hour of sleep for me, his second CT Scan is done and we wait for someone to read it. One doc comes in, Spine and Cervical look good but have to wait for the brain scan...Finally the head doc is out of surgery, reads the scan and the good news is no apparent skull fracture and no blood on the brain!!!!  Ethan is released with one heck of a story, a few stitches, a neck brace for his bear and a couple ambulance rides.

After looking back, Ethan's balance has been worse...he fell at school on Thursday scraping up a hand and breaking his glasses...he has been eating us out of house and home...so it's possible that a growth spurt has set him into unbalance mood (more than usual) . So what to do...I guess we go back for another game! Poor kid missed that one!

Was it SPD or him taking control?

Written by Heidi:

Ethan has been great with therapy. His PT and OT's over the years have introduced many fun and interesting homework assignment and devices for his use.  I have to say we have taken our homework seriously and done everything they have shared with us. We didn't want to look back and say why didn't we try harder for him. My type A personality wouldn't allow that. So with that being said he has excelled in his therapy goals and we continue to set new ones and Ethan has pretty much been an easy going partner in this journey. Until....

A couple of PT sessions ago his PT had decided to change his under garmet therapy pressure suit called a TheraTog which he has worn for 3 years to a different suit called a Spio Vest. He keeps outgrowing the Theratog and it has a few pieces that seem to come undone or loose throughout the day. As he has become older and more active this seems to have more issues at school. 

Prior to her trying the sample suit on he hadn't worn his theratog to school due to school function, pictures, etc. and surprisingly his behaviour in school had been excellent. Being "smart old Ethan" he chalked it up to not needing his 'behaviour suit' anymore. He threw a fit at therapy even running into a closet and trying to lock himself into it. This isn't typical Ethan reaction, he will usually just tell you matter of fact he's not doing it. He also started throwing issues in regards his shoe inserts.
So after the session I was able to talk to him. He was telling me suit was too tight and it's so uncomfortable and itchy and so many other what I classify as SPD. So we came up with an agreement to give the suit a break possibly til next school year depending on how things go since his behaviour prior to not wearing the suit was decreasing in school and then was fantastic for a week and half when he didn't wear it which is usually the complete opposite!  But shoe insets we decided would be a must.
Later I heard him telling one of the neighbor boys notice anything different about me, no special suit!

So I wonder, did he really show some SPD issues or did he work his magic to not wear it because kids have been noticing it....

Let's Talk OT

Written by Heidi:

From the time Ethan was 3 months old I asked and asked and asked his neurologist for an OT referral. His first sign that OT might be necessary where his fists. He clenched them .... ALL the time. Even during sleep.  I believe that the doctors were so thrilled that his cerebellum was growing to the right size (it hadn't been before 3 months old on ultrasound).  At this point we hadn't had an MRI yet, so we were unaware of his RS. Because of the "normal size" they just wanted to throw him into the "normal" category.  By 6 months it was becoming obvious this wasn't going to happen.

So finally, at 8 months we had our initial evaluation. And so it began. Therapy became our life. Everywhere I looked I saw therapy. Play became therapy. Diaper changes became therapy. We brushed him, yes I said brushed, from head to toe with those infant hairbrush they give you at the hospital. This was to stimulate his neurons. We wanted to get them going and activated (we were told this should happen before age 2). We had bean boxes, ( I believe every kid needs one....what fun!), we had putty to hide buttons and coins...great travel therapy!

And so our days of therapy continue. OT has been loads of fun with Therapeutic Listening, seek and find puzzles, a push pin letter thing I made up and so on. But it has paid off! His writing is so close to his peers.  All this being said tying his shoes is a constant battle...but that is every kid...right!!??

We did find just the right one in the end...

Written by Heidi:
So...  I'm out shopping with Ethan the other day and I'm looking at new vases. Well, this is a dangerous aisle and of course he wants to help, so he reaches across to pick what he believes is the best one and my heart immediately falls to my stomach. I see it! I see the whole thing happen in an instant,  seconds before it does! Before the words can even form on my lips the domino effect is in motion.  There is nothing I can do to stop it! But to my surprise he turns around and presents the prized glass vase for show. 

I breathe...gently remove the vase from his fingers and move him to the side AWAY from all the glass. "Yes Ethan it's very pretty, but not really what I'm looking for." He pouts and precedes to find himself a seat on a decorative tin, which collapses, resulting in him falling, rolling into tall tin vases which DO domino each other, loudly!  Ethan jumping up! Struggling to put the tin back together and saying, " I so didn't know it would do that!"

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...

Travels to Family...

Written by Heidi:

We recently got to travel back home by way of an 800 mile car trip west to visit our family for the Thanksgiving Holiday. We haven't done this for 3 long years. Several excuses, we are very busy, work and school get in the way, along with therapy, doctor visits and extra outside activities that the boys are involved in.

One thing that does happen as we travel is Ethan's vestibular gets set off (more than usual) and we always seem to have a few days of a "reset". Also throw into the mix being in a new environment around new people. I always worry how this is going to turn out. Surprisingly this time wasn't too bad. We decided to throw caution to the wind and abandon our typical routine. Not daily eye exercises, Theratog or Therapeutic Listening Headphones. No daily balance on his knees or exercises. What we ended up with was a relaxed trip!

What my poor father-in-law ended up with was a little shadow for the week! :) Poor Grandpa couldn't go anywhere without Ethan on his tail! And I forget that although we are so use to the falls and trips that happen throughout the day, those who are not accustomed to this sometimes feel like it is their fault.

There was particular day that Ethan was with his Grandpa and he had fallen nose first into the coffee table (bruise on nose), had scrapes on hands from a fall in street from a walk the night before, and then fallen suddenly in the street as they walked back from the park resulting in a bump and bruise on his forehead. My poor dear father-in-law was overwhelmed. The poor man felt like it was his fault. We assured him this was completely normal and was really so much better then it use to be. I guess we are so used to it, it just doesn't faze us. Unless there is a pretty good scream or cry associated with the fall or cut we know we just don't need to react.

I am so proud of how far Ethan has come. Five, four, even three years ago we were in such a different place then we are now with this child. We know when we travel what to expect. He is going to be off a little. His strength continues to improve and we continue to work on things that come up. I can't imagine what the next 3,4,5 years will bring!!!

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!

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.

A typical day...

Contributed by Heidi:

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

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

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

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

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

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

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

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

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

RS and family vacations...

Contributed by Heidi:


One of the great support systems for many of the parents of children with RS is a support group online. It seems that most of the RS children and adults that are in this group have at least one sibling (and some more than that).

In our family Ethan has an older brother by 6 and 1/2 years. My two boys are not always the best of friends as is the case with many families. With an RS family this can be even more difficult than in a “typical” family. As a parent of a special needs child I try my best to balance things out, but this is never easy. We make an effort to not map our entire life around the younger/special needs child. This proves difficult sometimes.

When our older son was 5 we took him on a cruise and didn't think twice about it. We have wanted to take Ethan but have had obvious hesitation. My husband and I are planning something next year in the hopes that Ethan will be at an age and mobility to be able to navigate easily through the ship. As anyone who has been on a cruise knows a cruise ship is full of stairs, balconies, slippery poolsides, ramps, and decks along with movement of the ship sometimes. THESE scare the heck out of me as a mother to an RS child. Do I bubble wrap him and make him wear a life jacket for an entire trip...I think not! What happens if there is an emergency? If his docs at home cannot understand his diagnosis, how does the doc on a ship begin to treat him? I am probably a little gun-shy since we didn't have a great experience on our first cruise. Travis got sick and the doc wasn’t too fantastic and that was just for a stomach virus (that's a whole other story!).

I've seriously been trying to let go of my neurotic behavior with this miraculous and remarkable child. To give him a life he can look back on and say he didn't feel like I over-protected him.

So the bubble wrap will stay locked up in mind and I will use all my over compulsive behaviour in the planning, (as I do with everything) so my two boys can remember a trip full of sun and fun!

Summertime: Sun, Sand & Ocean

Contributed by Heidi:

When I had my first son, Travis, (who is now 12 1\2) summertime meant that he and I could pack up and go to the beach on all my days off. With Ethan and his RS, days off look very different. Instead of sun and fun we have therapy appointments and Doctor visits. I sometimes wonder when the relaxed days of summer will come for him (and Me for that matter!). Well, this past Monday was a rare morning that we didn't have anything scheduled until 2! So I packed everything the night before, woke the boys up early and off we went!

Having a child with balance issues makes walking on even and uneven surfaces difficult. You are constantly on guard with a hand, arm, leg, knee, hip and elbows and eventually you are not even aware how much your body is in tune with them. It becomes such second nature to stop a fall, fumble, catch them in a trip or spin without even realizing. A curb or steps become an enemy in an instant. And let’s face it, what six year old wants to hold hands with their Mom??? If I hold his hand my entire wrist, arm and shoulder is braced for impact. I find myself a lot of the time holding his wrist as it is easier to regain his balance for him with a sturdy wrist then a tiny hand and fingers that so easily can slip from my grasp.

On Monday I found myself loaded down with beach supplies and unable to hold his hand (wrist). With any other child I would ask him to hold on to the cart I was pulling but this doesn't work for an RS child. This seems to trip him up more as he grips a shopping cart or stroller. So Ethan had free run to get himself across the sand to the perfect spot we had sighted.

There were many falls in the sand (as you can imagine) as we made our way but we got there! Set up our spot and off into the water! I brought his life jacket, which he definitely needed. In came the first wave and down he went. Second…wave down he went again! And so on. Its very difficult to pull him to a standing position (it doesn’t help that I just had major back surgery at the end of march) and as the waves tried to take him back out I think the visual effect also takes a toll on him. We played this "game" for a while and decided to build a sand castle. He wanted to fetch water for the moat but this proved hard for him too! Those waves were determined to take him out!

He decided it was time for some lunch at which point he decided his sensory issues would come into play; the sand then became the enemy. For some reason it couldn't be on his feet while he ate. It became another "game" of washing a foot in a bucket, setting it back in sand to clean the other foot then realizing the first foot was sandy again....

We ate sitting at waters edge so waves could wash us as we ate. I know the other mothers around me were most likely criticizing me under their breaths, since we were not conventionally sitting on our blanket. But for me if we were sitting and having a he was sitting and couldn't fall.

Needless to say it was a long morning. We packed up and headed off to therapy where I sat (and maybe even dozed) for his 2 sessions.

I plan to do this again this monday....

A new perspective

I want to take a minute and introduce you to a friend of mine. Her name is Heidi and like me she is raising a child with Rhombencephalosynapsis. She and I met online and have spent the past year getting to know each other. Because she and I have kids with RS we thought it might be beneficial for this blog to share BOTH of our perspectives.

Here is Heidi's introduction:


Hello, My name is Heidi and I am also a mother of a child diagnosed with Rhombencephalosynapsis. His name is Ethan and he will be six in August. My story runs very similar to Kristen's. During my pregnancy (at around 5 months) we found out that our baby had some severe issues. Unfortunately the doctors had no explanation for us.

After Ethan was born life settled into our new normal, and there was alternative for our baby than a “normal” life. He still continues to baffle the docs as to how he is here and how he can be so "normal". Ethan is a fun, witty, energetic boy that gives us a run for our money along with his older brother.

Now that Kristen has a new son in her life I will try to help her keep this blog current as we co-blog about our 2 remarkable children. We hope that by sharing Abby and Ethan’s stories we can raise awareness about life with RS. We are both hoping to give other parents our perspective on raising rhombencephalosynapsis children. Even though both of our children have the same diagnosis and a scary amount of similarity there are still so many differences. No two children are the same!

I feel fortunate to have met Kristen almost a year ago. In that short time we have bonded so instantly due to our miracle kids (even though we have never met!).

I hope to share with you stories of Ethan just as she has shared such wonderful ones of Abby.

You can look forward to Heidi's wonderful stories of her life with Ethan!