I feel a little silly now writing a story about Emma, when I feel that most of your already know her so well 🙂 Oh well, to all of those who have not had the privilege of meeting and/or reading about my awesome daughter, here goes!
My pregnancy with Emma was pretty typical. Nothing on any ultrasounds or checkups gave us any indication that she would be born with any differences. So, on August 28th, 2006, when they laid that beautiful girl on my chest, nothing was running through my mind but “Oh my gosh, I have the most beautiful daughter in the world…” I remember one of the nurses saying “She has clubbed feet, but that can be fixed” and I only sort of processed it. I was so in love 🙂 After the craziness of the actual birth died down about an hour later, some of the nurses started mentioning the fact that Emma wasn’t furrowing her brow when she cried and she wasn’t able to suck out of any form of breast or bottle for nutrition. However, I give so much credit to those nurses because they were so gentle with me in trying not to make me panic. The on call Peditrician was a different story….
After a few hours and lots of speculation, it was decided that Emma would be transferred to Asheville Mission Memorial Hospital since they were better equipped to handle her special situation. I am so glad that I had family there with me, because I just remember that first day and a half being so scary and confusing and I don’t think I would have gotten through it without them. Emma was admitted to the NICU and we had consults with many specialists in those first couple of hours. However, a diagnosis was made after 5 minutes by the geneticist: Moebius Syndrome. Of course we had never heard of it and there was a lot to be learned (when I was not pumping or rocking/feeding Emma, I was on my laptop soaking up everything on Moebius Syndrome that I could find!) . Emma was not latching on to breastfeed nor taking a bottle, so she received IV fluids and TPN for the first couple of days. However, thanks to the wonderful nurses, we finally discovered the Haberman feeder and Emma was able to leave the NICU within 2 weeks! And thanks to the wonderful staff at Asheville Mission Memorial, we were all set up with appointments to the Shriners hospital for her club feet along with a consult from the CDSA for therapies.
Emma started casting for her club feet when she was a month and a half old. Oh how I fondly remember those weekly 4hr round trips to the Shriners for new casts…She had her first tendon release surgery when she was four months old and was fitted for the torture- I mean- Dennis Brown bar. She did alright with it (meaning I could keep it on her and get an hour or two of sleep) for a few months, but as time wore on she was having such an awful time with it that we barely kept it on her. This lead to her second tendon release just before her first birthday. And although I was upset that she had to have another surgery, it was actually a blessing in disguise. Up until this point, Emma had shown no motivation to crawl or bare any weight on her feet. Acutally, she flat out refused (as is her personality). And I knew that the bar was just making it worse. And during the six weeks that Emma was in casts following the surgery, her PT mentioned something about AFOs and that they would probably be good for Emma. I brought this information to the Shriners, and though they were hesitant at first, they eventually agreed to give it a shot. Within two months, Emma was consistently bearing weight on her feet and creeping forward on her hands and knees! She crawled by 14 months and took her first steps just a few weeks before her second birthday 🙂 (You wouldn’t know it because there is no stopping her now!! lol) Those AFOs were the best thing to have happened to her! She was in them until her third birthday, at which time she became orthodic free! We still go back to the Shriners every year for a check up, but they continue to say that her feet are looking great!! And she had been in physical therapy up until she turned 5 when they also said that she is doing awesome now and shows no more need for PT! Emma is a determined girl, and although she may take her time, when she is ready to do something she will do it 🙂
Emma started Speech Therapy when she was 15 months old, and she still has ST once a week (although she was recently discharged from the school ST program because her intelligibility is awesome to her teachers and peers!). We mainly focus on the Vital Stim therapy now in conjunction with some of the Talk Tools therapy. We are working on better lip mobility and compensatory strategies for the bilabial sounds that she cannot produce. I can tell that her speech has improved so much over the past couple of years and I am excited to see where the Vital Stim is going to take it, since it is not a very conventional therapy for those with Moebius Syndrome. This is actually our second go at Vital Stim, the first one being when she was 18 months old and it helped to eradicate her dysphagia completely! I love therapists and doctors that are willing to work with their patients and try out unconventional treatments 🙂
Emma is also currently in Occupational Therapy once a week at a private office and once a week in school. They work with her on her fine motor skills, something that she is improving in at an exceptional rate! There are some concerns about sensory processing disorder, something we are pretty sure she has to some degree, and we have meetings and evaluations lined up to get some more answers.
Emma was also born with strabissmus and farsightedness in both eyes. We started glasses when she was a year old. We also started patching when she was 18 months old with the talk of a very possible surgery to correct the strabissmus. Thankfully, the patching worked wonders and Emma has so far been able to avoid any optical surgery and the eye doc sees no need to really consider it anymore. There is still concern about some double vision, but we are waiting to test for that until she gets a little older. For right now, we just keep on buying her super cute glasses and she is doing great with them!
Emma’s hearing loss came as a surprise. When she was three and was being evaluated for the school system’s therapy program, she participated in a hearing test as a routine part of the procedure. And when they told us she had moderate sensorineural hearing loss, most likely affected by the Moebius syndrome, we were taken aback. I remember leaving the hearing test sad, mostly for Emma, because she had to overcome yet another obstacle. But my husband turned to me and said “ Look at Emma dancing around in front of us. If this isn’t making her sad, it shouldn’t be making us sad.” I needed to hear those words. So, we did what we had to do as far as making and attending appointments, and Emma started wearing hearing aids in March 2010, and wow what a difference it made! I remember her walking out of the office with the hearing aids in, and I was worried if all of the new sensory information would be too much for her because she was being really quiet. So I bent down and I asked her “Emma, is everything ok?” And she said “yea mommy, I can hear the cars and the birds singing. It’s so pretty.” And I started to cry. What a wonderful thing to hear from her. That little girl has taught me so much about life and strength. I am so lucky to be her mom
As many of you know, Emma is doing awesome now! She is currently in Kindergarten, doing great in school. She can already read and is often found with a pile of books beside her waiting to be read (she has been like that since she was a baby!!). She is a very active, intelligent, HILARIOUS, loving girl who lights up a room when she walks in 🙂 And she is a great big sister to Chloe, always wanting to help and teach her something new She inspires me everyday to be strong and loving, to live life to the fullest, and to enjoy the small things (like dumping waaay too many sprinkles on an ice cream sundae, lol). I love my big girl, and I thank my lucky stars everyday that I was blessed with such an awesome daughter