On Thursday evening we packed up the car to head south to Maryland, outside of Washington DC, for the bi-annual Moebius Syndrome Conference. This would be our third conference.
When we left the conference in 2012 things were a little difference than they were this time. For one, we had never really talked to Emma about her syndrome, and two, we were not on Facebook so the only people we knew were those we had met at the conferences and became friendly with, which was not many.
Since then we have made an effort to give Emma a name for the reason why her face does not move like ours. We have educated as many people as we could and tried to raise awareness about Moebius Syndrome in our community. We have also joined Facebook, which meant I could join the Moebius Moms group and "meet" other moms in a private forum where we discuss our fears, questions and encouragement.
So the anticipation for this conference was more of a family reunion than a "conference". Our perceived purpose was to connect with people, and help Emma forge friendships with kids who will be able to relate as she gets older. We were not expecting to learn anything "new".
When we arrived at the hotel we sat in the lobby for a few minutes and not far away a woman sat down. She had Moebius Syndrome, but also was missing one hand and had only a couple of fingers on the other. The kids noticed. She also had really short hair and no make-up, so Toby assumed she was a man and said "is him's hand broken?" I was not prepared with an answer!
I tried to explain to the kids that she was born that way and it was ok. I suggested they say hi, but they didn't. Right after I hit Facebook and asked the other moms what I should say, and got some great advice from moms with kids who also have limb deformities. One thing I made sure to pass along was that it doesn't hurt the person - I'd never thought about that!
Friday morning was open because the conference didn't start until 1pm, so we took the kids swimming in the pool which they loved. At one point a lady came in with a little toddler girl, with Moebius Syndrome. She was so cute, little glasses and curly pigtails! Emma commented "she's got a smile like I did when I was little."
We had lunch with Kendall, who had come to stay with us over my birthday, and finally met her husband and baby. Lifelong friends who we would never have met! It's funny how Facebook can genuinely foster real relationships.
The opening speaker was an English man from Changing Faces in the UK, an organisation who is working for equal opportunity for people with facial disfigurement in society. That is both working to build awareness and acceptance among the population who do not have burns/skin conditions/congenital deformities or other issues to be comfortable with people who do. You probably aren't aware that you stare or avoid social interaction or subconsciously discriminate, I may do it too!
But secondly they are helping people with disfigurement overcome their emotional and social difficulties so they can be active participants in their life.
Go to changingfaces.org.uk for information on how you can help.
We had three sessions that afternoon:
- smile surgery. We went to the talk by the pioneer of the gracillis muscle transplant procedure, just out of curiosity. Dr. Zuker is there every year, and we made an appointment to see him just to confirm our decision to go for the other procedure, the temporalis transfer!
- Mom/Dad discussion groups. An open forum for parents to share, seek advice and encourage each other. I have to say it sounds like Emma is on a great path because she is so outgoing and self-confident. So many of the other kids are painfully shy or introverted. As we heard before, that makes it difficult for them to participate in society.
- essential oils. Sounds kooky, but is really an interesting option for health and healing.
After dinner there was nothing scheduled, so we took the kids to Dave & Busters, and brought Jose with us. Jose is 26 and from Guatemala, so Scott was happy to reminisce about his mission trip there a few years ago.
Saturday was a long day. We started out in a session on a new kind of speech therapy. I had seen some stuff on Facebook about it and it looked like it offered some incredible results. We saw pictures and video of individuals with Moebius who had this therapy and the results are nothing short of amazing. Full lip closure and clear pronunciation of b, p and m. Oh, and real spontaneous smiles. Yeah.
We were sold. Trouble is the therapy has to go through an official trial to be approved and accepted by the governing body of speech therapists. To participate in the study individuals must not have had surgery or any other intense therapies. Everything we heard was setting off alarm bells in our minds. What if the therapy could help her lip closure and speech, which is not at all guaranteed with surgery, and a natural, reflexive smile?!!
Then we went to a session on neuromuscular retraining. This involves helping individuals identify the actual muscles involved in facial movement (for a smile it's cheek muscles, not the lips) and learn how to activate them. This is for older children or adults, and is often used following smile surgery.
Our mind was being blown! But no time to think - we had an appointment with Dr. Zuker to "grill" him on the gracillis transplant to make sure we were making the right choice. Before we go to him though, we ended up with the therapist who had spoken on neuromuscular training because her appointment had not shown up! She was immediately able to tell Emma to move her mouth in a way we'd never seen, by using the diagram she gave us of all the muscles. Sure, the movement was down, but it opened our minds to more possibilities. The therapy is only for older kids because it requires a lot of focus and Emma was being a little agitated in the appointment due to boredom, so she showed why it would not be good yet.
Then we met with Zuker, and the doctor who is taking over his practice as he retires next year. We were pleasantly surprised by the man who had always come across as fairly rude and arrogant. I think he is, but was engaging his bedside manner! Anyway, the doctor with him examined Emma's face and said something that really got our attention! He said her temporalis muscle, the one we are planning to move to power her smile is really pretty small. That's not good. Maybe it's her size overall, but still!
We asked outright why they do the surgery the way they do (muscle transplant, two procedures etc) instead of the other way that we are pursuing. Dr. Zuker explained that he does not like to make scars on the face (maybe something I'd been downplaying in my mind) and he said it was harder!!
We were at the place where we were at the point of deciding not only to wait on surgery altogether, but if we did, doing the gracillis transplant! (Still an insurance issue, but not the one under appeal!!)
Later that day Scott met a woman who had the temporalis transfer done 20 years ago. She has dents in her head where the muscle was moved from. She was also pursuing the gracillis transplant!
That afternoon we headed to meet the therapist conducting the research study that would give Emma the ground breaking therapy for speech. We applied to participate, and if accepted we will take her for therapy 3 times a week for 3 months. Following that, the therapist would be trained and given all the tools to continue the therapy. And that means no surgery until the study is over.
So much to consider. We prayed that God would lead us, and give us wisdom. We assumed that our choice was simple - which surgery! But we met many individuals who have had great success with therapy alone - we had not considered it because she no longer qualifies for educational speech therapy, and the existing methods can not help her anymore. But this is surely preferable.
In fact, had the insurance approved the application 3 weeks ago, we may have already had the surgery done. But right now we seem to be in agreement that we will not pursue the surgery at this time, and instead pursue more therapy. It will be much slower in terms of progress, and may not even yield the progress we would hope. But there is no rush on surgery, it seems and we would rather see if we can help what is there, before using surgery as a last resort.
We were able to spend time with lots of people we knew from prior conferences and Facebook. We had dinner on Saturday night, before the talent show, where Emma overcame her nerves and gave a wonderful performance of Let It Go. There were many other performances and while they varied, Emma really wowed with her ability to just remember all the words of the song, let alone the inflection and rhythm she maintained. We couldn't have been more proud, and though Toby slept through dinner, the talent show and following disco, he had been excited about seeing it!
We said our goodbyes and headed out on Sunday morning, skipping the final day to attend an important service at church.
Intense, overwhelming, wonderful.
