Tuesday, April 15, 2014

Endocrine, Track, Dental Surgery, oh my!

Sorry for the lag in posts of late. I got a new writing job (working from home still) so life has been crazier than normal. Despite the insanity of work there are plenty of fun things going on in our household. Abby has decided that reading at a 1st grade level is for the birds. She went through the 2nd  and 3rd grade levels and her work is matching a 4th grade level. He teachers don't even know what to do with her in reading. She is now analyzing articles. (That's my girl!)

I finally got her in for the panel of tests the endocrinologist ordered for her "small stature". It was a pain in the neck because we had to get an appointment for 8 o'clock on the nose.

Sister was amazing, laughing through the whole thing. We got the results and everything was NORMAL!

The girls have both started a new track season. Grace is off to an amazing start but my Abby girl is struggling a little more.

I think her small size and balance issues are starting to catch up a little. She has gotten all 4ths, 5ths and 6ths (often out of 4, 5 or 6) but its been tough. She is still pushing herself and keeping a smile on her beautiful face.

We saw a new pediatric dentist for her cavities (by the way, thank you RS for the weak nails, hair and tooth enamel) and dead tooth.

She fell about two years ago and hit a wooden bench with her front tooth. It's been dead even since and they found an abssess above it at her last dental visit. The pediatric dentist was not too happy about any of it. So now sister has to have surgery to remove the tooth, fill the cavities and put pediatric crowns (not the same as grown up crowns, I assure you... hours of research... but I digress) on her tiny teeth filled with mega cavities. I didn't anticipate needing surgery for this one but welcome to our life. Thank God she remains a rock start about the whole damn thing. The dentist says surgery and she smiles and says "It's okay, I'm used to it".

And lastly... we are getting a dog. More to come on that!

I also wanted to share again how grateful I am for this blog. I have met two new RS families in just the past few weeks. The fact that a simple blog can give information to families who need it reminds me that we RS families are not alone!

Thursday, March 27, 2014

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.

Friday, February 28, 2014

Rare Disease Day

Rare Disease Day - February 28, 2014

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!!!

Saturday, February 22, 2014


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.

Wednesday, January 15, 2014

A time to twirl

For many kids with RS, spinning is a part of their life. They spin when they stand still. They spin as they walk. They spin when they sit on the floor. Like a tiny little top. Abby is one of those children. The girl needs to spin in order to regulate her body (at least that's how I understand her explanations). I don't mind her spinning but we do try to keep it to a minimum at school so she doesn't distract others.

We have tried MANY therapies and strategies to get the spinning under control but have had little success. While I wish this post was written to outline a strategy that worked, it isn't. :D Instead I am happy to say we found a place where she can spin and whirl and turn and twirl until her little heart (and brains) content.

She is the twirliest, most accomplished spinner in the entire ballet class!

Sunday, January 12, 2014

She's disabled?

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

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

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

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

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

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

Wednesday, January 8, 2014

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. 

Monday, January 6, 2014

A stroller? A chair? What now?

For years we have used an oversized joggin stroller for Abby when we take outings that require a lot of walking. He still tires very easily so it is a must. In the past couple of months we've noticed that she is quickly outgrowing her buggy.

So the question is 'what now'? We have hesitated in any type of chair because I don't think she would love it. That being said being 6 and in a stroller isn't making her really happy either. What people don't realize how expensive a chair can be. Her stroller ran us almost $300 and despite the letter of medical necessity our insurance company paid nothing. We fear that the case would be the same with a chair. 

So for now we're back to the drawing board. And she's stuck in her stroller.  

Friday, January 3, 2014

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.

Wednesday, December 4, 2013

Or not

We got Fulton home and the whole house was abuzz. People were coming and going in the excitement of meeting him. We were surprise how energetic he was. We were told he would be a little more laid back than he turned out to be. But the kids were loving it and we reminded ourselves how big an adjustment this was for him.

We tried to settle into a routine but it was a little rocky. The first day he was up at 4am to go out. He barely had to go but obviously he was an earlier riser than we were. Unfortunately once the girls were up they had a hard time settling back to sleep amidst the excitement. (Companion dogs must sleep in the room of their companion so he was in with the girls.)

The first full day the girls headed off to school. They were sad to leave their new friend but off they went. I had to help with a party at school so my Mom came to sit with doggie and baby. My Mom had no problems with either but did mention that when Jack fell on the dog he snapped at him. No teeth or anything but just something to be aware of.

The next day or so was a bit of a whirwind. With the holiday, a new dog and the kids being off things were nuts. We had expected a super well trained dog and got a much more normal dog than we expected. On day two or three he just about pulled my arm out of socket running after a cat. We expressed our concerns to the organization but they reminded us that it was an adjustment.

We went about our holiday and tried to get the dog as acclimated as possible. I decided to do some early Christmas shopping with my Mom and headed out by myself (I usually have a kid or two with me).  After about ten minutes in a very crowded Target I got a text that read "the dog bit Jack". My mind went into a blur. I couldn't get service to call and I couldn't figure out whether it was a joke or not.  I finally got ahold of Brian and he told me that Jack was sitting beside the dog and leaned over him. The dog snapped at his face and bit right beside his eye. We had to determine if he needed stitches right away. I hurried home and thankfully no stitches.

 Unfortunately that is when I had to give the girls the bad news that the dog could not stay in our house. The next 12 hours were a blur of sobs. After such a long wait the dog had to go back. There is no way a dog that bit my child could live in my house. The people at the organization were very apologetic but how could this happen.

So, here we are. Back on the waiting list with the fear of God about next time. We now have our eyes wide open but don't quite know what to think. We are mostly thankful our boy is okay and the tears have started to dry up. 

It's been a long couple of days...

** I wrote this on our families blog and got some nasty, undeserved comments so I may close the comments section here. People can be so mean sometimes.