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!!!!

Only Abby...

Only a child with Rhombencephalosynapsis would ask her mother to tape a reenactment of a fall.

This kid kills me. 

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!

Rhombencephalosynapsis goes to Disney World

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

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

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

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

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

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

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

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

Posted by Kristen Fescoe

She fell

Part of rhombencephalosynapsis is falling... A LOT. And Abby is no exception. The difficult thing to explain is that one minute she can look like her balance is perfect and the next minute she will pitch over and fall on her head. People will often look at her and look at me as if I am crazy for saying she has bad balance. I want to follow her with a camera to show people how "on and off" her balance can be. I feel like the inconsistency almost makes it worse.

Anyway, I digress... yesterday I was changing Jack upstairs. Abby is allowed to use the stairs unsupervised if she is careful. We have Care Rails so she has extra support. I heard her start up the stairs and out of nowhere I heard a loud thud and then the horrifying sound of her tiny body falling down the entire flight of stairs.

I am not a panicker by nature but I came close to panicking. I started to run for her, realizing the baby was on the changing table, grabbed him and headed for the stairs. Just as soon as I hit the landing I heard the scream. The high pitched, shriek that RS parents know is reserved for the "bad falls". (You see, most kids with RS can handle falls, that would make other kids cry, with the greatest of ease.) I ran to her expected a mangled, bloody, broken mess. Instead I found a very scared but very okay little girl. We were both shaking and I wanted to just sob. As I ran to her I was already planning how to get to the hospital quick with all three kids by myself.

She was more scared than hurt and I was more thankful than scared. It could have been SO BAD. She said that when she got to the top step she hit her head on the top rail and fell backwards. SHE FELL BACKWARDS DOWN THE STAIRS. The fact that nothing was broken is a complete and utter miracle. I do believe that God must have softened the fall for her.

I spent the better part of last night periodically looking upward and whispering "thank you". I could have spent last night in the hospital or worse. My baby could have been so badly hurt. How did I get so lucky that she was FINE??? God is good!

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!

Stock in Band Aid?

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

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

Three days later

Impulsivity

So far Abby has been having an awesome year at school. My biggest complaint would be that she has learned how to "work over" her teachers and she does regularly. She has learned that any time she doesn't want to do a task she can claim to be tired and put her head down... then she is allowed to skip the task. The little bugger is way too clever for her own good. She will come home from school with a page of three scribbles where Grace will have an entire project. We may have her number but school sure doesn't in that respect. :D

One of the lingering issues her physical therapist has been working on is her impulsivity. She has become quite impulsive in the past year or so. We've been working on strategies to work on this with her developmental pediatrician. Where we are seeing the least progress is her motor impulsivity. Things like rushing down the stairs (to the point of falling), jumping off high spots, climbing things she shouldn't, etc. Her PT at school has been noticing a lot of this at school.

The way we have been handling it is by using a lot of reminders and safety warnings. We try to have her count the stairs as she climbs them. This was she is forced to slow down. When she is at the park she might have to look down to be sure she knows where she is. In some respects you have to love the free spirit that sparks her to do these things. She is just so thirsty for life that she can't slow herself down. On the other hand, as her Mom, it scares the hell out of me that one of these days she's going to seriously hurt herself.

Hopefully time and maturation will help her learn to regulate her behavior better. Not sure if that day will ever come but here's hoping! :D

Rough Weekend

When Abby started this weekend she was in good shape. No visual bumps, bruises or scrapes. It's now 10 o'clock on Sunday night and I put her to bed with:

a black eye (fall at the table where she banged her head),
scrapes on both of her hands (tripped over extension cord while we were blowing our leaves),
a cut on her nose (a fall off her bench at the playroom table),
an egg on her head (also the trip over the cord),
breakout under her mouth (from crying and drooling) and
bruises all over her legs (from multiple falls throughout the weekend when we went outside to clean our leaves).

Pity is not something I feel for my daughter very often. I don't think anyone wants to be pitied. But as I put my beaten up little baby to bed I felt just awful. If only I could put her in bubble wrap... :D

The Beach

We just arrived home from a weeks vacation at the beach. Since Abby was little the beach was a little bit of a struggle. For typical kids learning to walk across the sand can be tough. Tack onto that serious motor delays and balance problems and you have disaster. At four she still can't walk across the sand without falling. This is the first year that we have skipped the stroller on the beach and it was tough for all of us.

The second issue is the boardwalk. For those of us with traditional balance... no problem. For a kid with balance problems... again, disaster. Uneven boards. Some boards go vertical while others run horizontal. There are wall to wall people who might bump into her or brush against her. All of these things are enough to cause falls and bumps and bruises.

The third issue is a new place. Abby does very well in places she is familiar with. Her house. School. My parents. Anywhere she goes frequently she creates motor memory for. She knows her way around and can navigate easily. You put her in a new environment and we have many bumps, bruises and falls.

There are several other obstacles we faced but nothing too serious. As she gets older and can do a better job of figuring out her own needs and obstacles we have an easier time.

Luckily we left our vacation with no serious injuries. No stitches or casts or concussions were experienced. So we'll mark this one as a success!

Aches and Pains

Abby's life is full of aches and pains. Whether it's related to a test or surgery or procedure. Or if it's from her many, many bumps, bruises and falls. When she complains of an ache or a pain we usually give her a very low dose of Tylenol. We do this without too much worry because the kid is so tough that she really only complains when it REALLY hurts. Sometimes that breaks my heart. She can walk around with a huge egg on her forehead and never say a word. So when she does complain we know it's bad.

I am 33 and I am at the beginning of my aches and pains stage of life I wake up in the morning and my back hurts a little. Sometimes my feet ache from wearing not so great shoes. I pull a muscle in my neck sometimes from carrying Abby. It's a part of aging.

What kills me is not know the answer to this question. Will a lifetime of falls and bumps and bruises and issues lead to a life filled with aches and pains? Will they ever go away? Will she ever have a day where she doesn't hurt something or twist something or fall? (I know, more than one question :D)

I don't know. No one really does. I can collect data and look at older kids with RS but the truth is that every child (RS or not) will develop differently. All we can do now is hope for the best.

Bubble wrap

Would it be wrong to wrap your child in bubble wrap before sending her out to play? Would elbow and knee pads be appropriate when playing on the playground?

Having a child with a developmental disorder that is largely motor based means dealing with a lot of falls. Top that off with her overall balance problems (stem from cerebellum), difficulties in using the two sides of her body together (from partial agenesis of the corpus callosum) and trouble gauging how far to step or reach (dysmetria)... and you have a child who falls all the time.

Despite all of her falls she isn't afraid. This is because she is a very tough cookie and she is very persistent. I love that about her but as her mother I wish she had a *little* bit of fear... just enough to protect her. Every time she runs I cringe. Every time she plays on the playground I want to hover behind her and help her on every piece of equipment. When she rides her bike I want to scream SLOW DOWN. But I can't. I can't be the person or thing that holds her back. I can't let my fears of the inevitable fall where something breaks turn her into a fearful kid. I can't. My job is to keep that fire burning in her. But it isn't easy.

Sometimes when I watch her running and trying to keep up with other kids I want to cry. She is slower. She is clumsier. She falls ALL. THE. TIME. She is often covered in bumps and bruises. Her ankles roll over if she runs too fast. It's hard to watch. A big part of me wants to keep her inside where she's safe from herself and safe from other kids.

I also know that hurtful words will inevitably be in her future. I listen to the neighborhood kids taunting each other when someone is slower or less talented. No one wants to be the kid who can't shoot a basket or kick a soccer ball. I guess that is another issue for another day.

For now I will continue to resist the urge to bubble wrap my baby before sending her out to play. I will limit her helmet usage to her bike or the playground at school (she has to wear it there). I will NOT buy her another helmet for at home even though I desperately want to. I will keep on cringing.

No pronation

Abby's PT at school took a good look at her gait with no shoes on and determined that she is not pronating. This is wonderful news because it means no expensive, annoying braces this year. The bad news is that she did see more instability without her shoes for unknown causes. She is going to do a few more sessions without her shoes on and see what she can uncover.

It is such a pain because we can't force her to wear her shoes all the time but I hate for her to fall even more than she already does. We're just going to keep an eye on her for a while and see what happens before we start pursuing it further.

The first of many

Today I got the first of what I am sure will be many notes home about Abby's falls. They have to let me know EVERY TIME SHE FALLS. It seems mute since she falls multiple times a day. Today it was simply her tripping over someone's feet. The note said she didn't cry or hit anything but she just fell. I am glad they let me know but I am guessing by about January both her teacher and I will be sick to death of the "must send a note home for a fall" rule.

A VERY big fall

Falling is such a normal part of Abby's life that most of the time when she falls she doesn't cry or carry on. She simply gets up, assesses whether she's bleeding or hurt and runs back to what she was doing. It is part of her incredible resilience. When I stop to think about the fact that at over three I still worry about her falling the same way I did when the girls were one sucks. The poor kid she be as sure footed as any other kid. But she isn't so what can you do.

Anyway, this week we were at a new park (which is deadly for Abby since new places are the hardest for her) and she was slowly making her way around. There was this strange slide that kind of loops to the side at the middle of the slide down. She went down slowly the first time (using her feet to slow herself). The second time when she tried to go full speed when she hit the loop out (which was about 7 feet off the ground) she went head first off the slide and landed on her neck. Thankfully I was standing right there. I hate to say that I have become so numb to these instances that it barely phases me. I kept her on the ground for a minute to make sure she didn't hurt anything. Once I let her up she ran right back to the slide. : - ) I wanted to keep her off of it but thought it would send a bad message. We settled on me standing at the bend to help her.

The whole thing just got me worrying. How many times can you fall like that before something breaks? How many times can you get incredibly lucky? When you fall about 100 times more often than the typical kid doesn't that increase your chances of a serious injury by 100 times? It scares me. Every time she falls like that I hold my breath until she moves. Is this the time she is going to let out that scream that tells me she is hurt? Is this the time that something will be broken? When I go to sleep at night I pray that God protects her from herself but also that if she does break something please just let it be a wrist or an arm... not a neck or her back. It feels so morbid but it is just her reality.

Why do kids like Abby not come complete with a bubble???
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