It was a hectic morning, always is when we go somewhere away from home! For two days we have two suitcases, a couple bags for equipment, the diaper bag (my purse!) and two strollers (I like options!)
It took about 2.5 hours to get to the hotel in Parsippany. We took smaller roads as the directions suggested and it was a really pleasant drive, more to look at than on the highway. Emma slept for the first hour and a half and was pretty content for the rest.
The hotel has a castle-esque quality to it and is massive. We registered at the conference right away and a man with Moebius came up to greet us. He was very friendly and welcoming which put us at ease, but I was quite self-conscious as his face was very distorted and he had a cloth on his shirt to catch his drool. There is a few people with drool issues and to be honest we don't know if Emma will too - her bottom lip is attached to her tongue, and that may be holding it up.
There are many kids running around with "Moebius" looks in varying degrees from un-emotional to very distorted. They are all fascinated by Emma - the cute baby! Was there ever any doubt that she would be a hit here too - uh, no! Of course, with that comes the touching! Kids wanting to touch her, feeling affinity with her as she looks like them (a bit), or they have siblings with Moebius.
You'll be pleased to hear I have been keeping my germ-phobia under my bitten tongue!! We had a meeting with some researchers evaluating Emma for autism signs. They were great and even showed me how to get Emma to converse with me! Of course they brought toys for her and when she put one of the cloths in her mouth I joked about my OCD going nuts! They understood and assured me everything had been cleaned!
We also met with the Canadian surgeon who is the authority in smile surgery - at the same time as 10 other families! The surgery takes a part of thigh muscle and moves it to the face, attaching one end to the corner of the mouth, the other to the ear. Patients then learn how to make the corners of their mouth move. The surgery takes 9 hours per cheek, and they have to be done 3 months apart! In Toronto. And even then they could end up with a lopsided smile!
I think we are going to wait until she is much older to decide about that - she would need to be at least 4 anyways.
We have met some families and I got to ask questions about their little girls. Some have issues like club feet, other nothing much. One thing's for sure, they all have personality! We even sat with one couple for dinner, they met at the conference and both have Moebius. They have a 5 month old baby who doesn't have it!
There are Moebius people here from 12 countries and all ethnic groups.
Seeing all the kids running around, heading for the pool in swimsuits (through the middle of the hotel!) brings back happy memories of meetings we went to with my Dad's company. All the families would go for a weekend and the kids would have their own rooms and get to hang out. We know Emma will make friends and get to run the halls at future conferences and we can't wait!
Surprisingly we have felt really positive all day. I expected to feel sad and sorry for Emma, which I do, but there was so much energy and love in the "Moebius family" it's wonderful to know that if she is faced with this challenge, that she has so many others who can support her in ways we can never.
It took about 2.5 hours to get to the hotel in Parsippany. We took smaller roads as the directions suggested and it was a really pleasant drive, more to look at than on the highway. Emma slept for the first hour and a half and was pretty content for the rest.
The hotel has a castle-esque quality to it and is massive. We registered at the conference right away and a man with Moebius came up to greet us. He was very friendly and welcoming which put us at ease, but I was quite self-conscious as his face was very distorted and he had a cloth on his shirt to catch his drool. There is a few people with drool issues and to be honest we don't know if Emma will too - her bottom lip is attached to her tongue, and that may be holding it up.
There are many kids running around with "Moebius" looks in varying degrees from un-emotional to very distorted. They are all fascinated by Emma - the cute baby! Was there ever any doubt that she would be a hit here too - uh, no! Of course, with that comes the touching! Kids wanting to touch her, feeling affinity with her as she looks like them (a bit), or they have siblings with Moebius.
You'll be pleased to hear I have been keeping my germ-phobia under my bitten tongue!! We had a meeting with some researchers evaluating Emma for autism signs. They were great and even showed me how to get Emma to converse with me! Of course they brought toys for her and when she put one of the cloths in her mouth I joked about my OCD going nuts! They understood and assured me everything had been cleaned!
We also met with the Canadian surgeon who is the authority in smile surgery - at the same time as 10 other families! The surgery takes a part of thigh muscle and moves it to the face, attaching one end to the corner of the mouth, the other to the ear. Patients then learn how to make the corners of their mouth move. The surgery takes 9 hours per cheek, and they have to be done 3 months apart! In Toronto. And even then they could end up with a lopsided smile!
I think we are going to wait until she is much older to decide about that - she would need to be at least 4 anyways.
We have met some families and I got to ask questions about their little girls. Some have issues like club feet, other nothing much. One thing's for sure, they all have personality! We even sat with one couple for dinner, they met at the conference and both have Moebius. They have a 5 month old baby who doesn't have it!
There are Moebius people here from 12 countries and all ethnic groups.
Seeing all the kids running around, heading for the pool in swimsuits (through the middle of the hotel!) brings back happy memories of meetings we went to with my Dad's company. All the families would go for a weekend and the kids would have their own rooms and get to hang out. We know Emma will make friends and get to run the halls at future conferences and we can't wait!
Surprisingly we have felt really positive all day. I expected to feel sad and sorry for Emma, which I do, but there was so much energy and love in the "Moebius family" it's wonderful to know that if she is faced with this challenge, that she has so many others who can support her in ways we can never.
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