MS Conference 2012 - Day 2

 We all had to get up much earlier than we would have liked to get to the conference on time - that hotel room would have been great!!

Emma was excited to go, telling Toby "Toby! We're going to meet people we don't know!!!"  Can a person get more sociable than that?!  We knew they had a childcare room and as expected, Emma could not wait to go.  She was engaged before I even got Toby out of the stroller!

Scott stayed with the kids for a while, until Toby would de-cling!  Before I left I saw a shy little girl come in with her mom and asked Emma to make friends with her.  She did not hesitate, loving to make friends (and be "in charge" if possible!).

I went to a session on "Being Positive" lead by an outrageous and dynamic woman from Venezuela.  She talked about basically loving yourself - and having Moebius herself, I am sure she was inspiring to the people with Moebius in the room.  She inspired me!

This quote was a great mantra for every woman and one I will share with Emma in the future.

I also attended a session by Dr. Kathleen Bogart, a social psychologist who has Moebius.  I was able to ask about when/how to discuss Moebius with Emma, because is was very clear that we need to help her address it with her peers.  We learned that since the facial difference is an "elephant in the room", it is best to bring it up lightly, so people can see past it and not be fearful.

We have really not emphasized Emma's differences with her, so we need to broach it gently so she does not become self-conscious or insecure.  We know friends and family, who show her such wonderful love, will continue to show her that she has a place of safety and normalcy.

Having had her hair done, nails painted and barefoot, Emma (and Toby) joined us for lunch.  As you can see here, the conference so far had only added to her high spirits!  (and the water coolers added to her water consumption!)

I went to a session on sleep disorders.  I was pleased that Emma's "bad dreams" do not seem in the same league as the "night terrors" so many kids experience.  In fact, it is more likely she is just playing us, to get into our bed in the night!  We'll be addressing that one soon!

After the afternoon childcare Emma had a rainbow and

 butterfly on her face!

 Toby opted for a dinosaur!

 As you can see, the kids had fun while we waited for Emma to have her eyes checked.  This was part of a genetic study on eye issues, that also includes Moebius Syndrome.  We signed up in 2008 and updated this weekend.  

During the eye exam, the consultants were getting very animated, and repeating certain tests over and over (fun ones, with toys and watching eye movement - nothing tough!).  When I asked what was up they told me that when Emma was looking at something she would drop her chin, so she was looking "up" at it.  At that point her eyes were converging laterally.

Have I lost you?!  Basically, the sideways eye movement she should not have, as per her diagnosis, was in fact there enough where she could pull them both in to give her a 3-D image.  Not impressed?  Imagine if you could only see out of one eye - see how your depth perception is affected!  Thats what we thought Emma had.  No more "lift your head up!"

This is Emma with Lauren...

And here, back in 2008 - Lauren is in the middle.

I knew that the highlight of the conference would be the talent show on Saturday night.  I told Emma about it and of course she wanted in!  She decided that she would sing acapella, her favorite song she learned at Vacation Bible School that week.  We signed up and were one of the last acts to go on.

She asked me to go up with her, but when we got out in front of everyone she got shy and told me to sing!  Even if it hadn't been "Moebius Has Talent", I would not have sung!  I asked for a couple minutes and we came off to re-group.  I got my phone and found the song she wanted on YouTube.

When our chance came around again, we went out and I played the song for her to sing along to.  Scott had to use his phone to video - hence the poor quality, but you can get a sense of it...

Emma was the youngest singer to go out and everyone thought she was awesome.  There must have been over 100 people watching, maybe 200!  

There were some great acts.  Check out this little girl...

One thing was evident, that this conference is huge in letting people with Moebius (and their families) know they are not alone, and giving a place where they can relax and not worry about explaining themselves or being stared at.

The kids especially get a lot of acceptance from others siblings, whereas unaffected kids might often shun them or even tease them.

As Emma gets older we know this will be a must for our family.  Thankfully the next one is down the road, in Washington DC!

More to come from Day 3...

MS Conference 2012 - Day 1

Those of you who keep up on the Moebius news will know that this weekend was the 10th Moebius Syndrome Conference, held really close to home!

This would be our second conference, the first being 4 years ago in New Jersey, when Emma was just 9 months old.  (We could not make the trek to Colorado in 2010!)

The first conference for us was over-whelming as we tried to get a sense of what may lie ahead for our daughter, and us.  We absorbed as much medical information as we could and had to resolve to take it day by day to see what would be relevant, and hope we would learn more as we went along.

Moebius Syndrome is very much on a spectrum of how affected individuals are.  At that stage, we had no idea where Emma was, although her limb formation put her in good stead - many others affected with Moebius Syndrome have severe deformation of the hands and feet.

I was filled with apprehension about this event because there was a new factor - Emma's own self-awareness and confidence.  How would Emma respond to being around people with facial differences, and would it spark self-consciousness in her?  How much would we learn - or did we need to learn?!  I was even hesitant to bring her.  We have been able to encourage Emma to develop such a strong self-esteem and independence, could that be damaged.  (This may not make sense to you, but with no-one to really guide us, we are making the "best" decisions we can!)

The decision was easy when her sunday school teacher pointed out that the other people attending needed to meet Emma!  She is such a ray of sunshine, I knew she would be a source of hope to many moms.

Because of the location, we were able to avoid the hotel cost and planned daily attendance.  For the Friday afternoon, Scott had work and I attended alone, leaving the kids with Nanna and Pops.  I wanted to scope the scene and see how it might go.  (Big props to Scott's cousin Lisa who had volunteered to serve at the conference, it's great when anyone with a link to Moebius steps up to help the cause!)

It was all kicked of with the Director of the US National Institute for Health (uber- big-wig) giving a presentation on genetic research.  Incredible stuff, and they are getting started on identifying the gene affecting Moebius - whether the mutation is inherited, environmental or spontaneous remains to be seen!  I really appreciated this fact, that we should all remember:

 "There are no perfect genetic specimens.  All of us carry an estimated 80-100 significant gene flaws."


The difference is where your flaws are!

It was a long 90 minute science lesson, but he finished of with a song on the guitar, that he wrote for the conference.  It was good!

Before I left Friday I saw the two couples we had met in 2008, and also connected with a few others. Participating in the Moms forum, for kids with Moebius age 0-5 was really rewarding.  I so easily remembered being in their shoes, but there were many more of them and I was able to offer hope, tips and friendship - a great reason to be there!

Summer holiday

When we went on vacation I made a decision, to not spend the entire time behind a camera.  I really wanted to participate!  So, the camera was left behind, and I took a few choice shots with my phone.  

Emma was so excited to be at the beach she was not scared of the waves at all.  That's pretty good given she is not very strong, and can not close her mouth or eyes against the water! 

One pair of arm floaties and she was swimming in the ocean at every given opportunity - without anyone holding her, as she bragged often!

Here Emma is on the boogie board...

After church Sunday, Emma looked every bit the diva in my sunglasses!!

There was a great playground for 2-5 year olds with a bouncy floor!

Toby tried out his goggles, a purchase we made for them both, although his never touched the water.  He was scared of the waves and when forced to go in he clung to us for dear life!  (It was crazy hot, so he had to get wet to be cooled!)

First day at the beach and Emma wanted to be buried!

Her dreams of becoming a mermaid came true!

Toby rarely left the safety of the tent and blanket!

Our water babe!

Classic!

Warming up after a swim...

Sophia found a place to stand and see the world!

The kids were scared being in a new place, but our bed was too small for us all to sleep in.  So Scott took the air mattress between the two of them.  A sound sleeper, he locked them in with him so they wouldn't come in to me!  Of course, who knows what they got up to when he was still sleeping...

I connected with my inner-child on this trip, by dragging the family out early to take a surrey ride on the boardwalk...

(Despite how it looks I did no pedaling or steering!)

Lunch time! 

The kids really got along great all week and it was so much fun to watch them.

And Scott got to spend more time with them than ever before.

We played pirate mini-golf...

(she posed herself!)

We hit the boardwalk

And on the last morning we couldn't bear to leave right away, and we stopped for breakfast with Melissa (and baby Layton on board - due October!)

And Keith

 

Unfortunately, I did not get any of Emma swimming in the ocean, or of the sunsets from our roof deck, nor the feast of snow crab legs Julie made for us, but the memories are there!! 

 

Close call

If you thought I was in summer mode last week you were right - not only was I not posting, I was on a full-blown vacation!!

Back in the spring we decided to make every effort to have a family vacation this year.  With me working, it seemed reasonable - we haven't been on a family vacation in 3 years, since I was pregnant with Toby!  And finally, last week it was time to go.

In the middle of a heatwave, we couldn't have planned better weather, but we did not anticipate one of the most dramatic journeys to the shore!!  (Remember the snow storm of 2010, when we were stranded at the airport on our way to visit family?  This was almost the summer version...)

We hit the road with a quarter tank of gas, intending to fill-up on the way - it's cheaper on the highway in New Jersey than it is at home!!  However, when we got to the one rest stop, half the gas station was closed and long lines were forming.  Despite the light on the dash telling us fuel was low, we opted to keep going and get off at the next exit.

As we drove down the road away from the busy highway we were surprised to see trees down everywhere, and even more that the first gas station we saw had no power.  Then another, and another until we finally realized the storm that passed over us the night before must have touched down right there!  Sure enough power lines supported fallen trees and whole towns were without power.  With temperatures soaring over 90f, stopping and waiting for a recovery vehicle was not a pleasant option.

With no end of damage in sight, we double-backed and headed back toward the highway - by now totally unaware of where we were, and without any GPS or cell phones in the power-less communities.  I was driving and getting more agitated with each precious mile. Scott kept me calm and worked on keeping the kids happy.  If I had not been driving I might have lost it!

There was no way to know how much fuel was left, or how we could even contact anyone to help us.  We had no idea how far we could go, and so were effectively helpless.  We prayed, and prayed!!  We knew we might possibly need a miracle!

Eventually, after pulling into a darkened gas station we were told of an oasis - a gas station a half mile away that had been open earlier in the day.  With little other choice we filtered into the heavy, painfully slow traffic and prayed.  By this point we had shut of the air conditioning and had the windows down for some ventilation - but not much.  Toby did not like this and let us know it!

Eventually we could see the gas station, and as we got closer we saw police blocking the entrances!  They were directing cars into a parking lot across the street to queue for gas.  It was so surreal.  People were walking down the side of the road with 5 gallon gas tanks in hand!

We got in line, and Scott got some freezer pops out of the cooler for the kids and shared them with the car behind!  From here Scott could push the car into the station if it died - but would there be any gas left!

After an hour and 40 minutes of driving around on "E" we pulled into a pump.  "Fill 'er up!"  Not a moment to soon as one of the pumps ran out and shut-down!

It took twice as long as it should, but we made it to the shore, so very ready for a vacation!!!  We had a wonderful week with Scott's family and friends who were in town.  Emma discovered her inner-mermaid, and we all enjoyed some rest and relaxation.

Pictures to come...

Reunited

On Sunday we went to the annual reunion for the center of fetal diagnosis and treatment at Children's hospital.  Emma was really excited when I told her about it, as she now remembers the fun things they have. 

This year was the 16th anniversary and the number of people is just growing and growing. They really do amazing things that could not have been imagined just 16 years ago.

We had a great time...

The continued all-time favorite- the carousel!

This little guy was the star of the event, in his little wheelchair. He could steer and move this thing like an adult.  Children are truly amazing adapters...

Emma got to meet the Phillies Phanatic...she was VERY excited about this!!!

Toby would not even high-five him, gripping tightly to Scott's shoulder.

Neither Emma or Toby would say hi to the Elmo or Cinderella walking around though!

This is Emma with Rafael.  For 3 1/2 months they slept in adjacent rooms and shared a nurse.  He was very sick and was in hospital probably twice as long as Emma. It is great to see him doing so well.  His family are very different from ours, being orthodox Jewish from NJ, but there is a common bond that we share and it's really like seeing family when we catch up! 

Emma pet the police dog. Just a couple of years ago she wouldn't go near a dog,let alone a a big one!!

Emma is now a moonbounce fiend!  Again, just a year ago she would have none of it! On Saturday we could hardly get her off the moonbounce!

 

Here we were two years ago...

And now...

At last!

Today is Scott's 30th birthday!  If you can't believe he's that young,you aren't alone. It's not that he looks "old", but he just has an air of someone who's been around a while and has learned from it!

I threw him a surprise party at the house, which was quite the challenge!  He went out with a friend to play some baseball, leaving me two hours to stage a party including a moonbounce and awning.  I could not have done it without his family and a few friends.

And it was great to really surprise him with an afternoon of hanging out with friends in the sun!

Apple

Yesterday afternoon we headed to the Apple store to get Scott's phone fixed, and we were hesitant about the kids in a store of expensive technology - but where better for them!

The folks at Apple have got their system down!  Not only was there exemplary customer service, but iPads for the kids to play with - which they did, because it was basically a big phone!

We actually had trouble getting Emma to leave!

Scott says if I save my pennies, one day I can get an iPad.  Maybe I'll see if the kids want to chip in!!