It was a long day! Emma and I arrived at the hospital for our "cranial-facial day" shortly after 8.30am. This was the second of the now annual check-ups, the first being last year and with Scott and Toby.
Emma and I waited patiently in the waiting room with other families there for the same reason. I didn't see any other kids with Moebius, in fact as I looked around (careful not to seem staring!) Emma had the least obvious facial differences.
This was quite a revelation to me, because although I know that Emma's differences are subtle and easily missed, I live in a town where all the teenage girls seem to be clones (or wannabes) of the trends of the time. It seems as though any differences will be glaringly obvious.
It doesn't take long when you visit the hospital to gain some real perspective on just how blessed Emma is to be healthy and on the mild end of the syndrome.
Emma quickly made friends with a 2 year old called Skylar, who was there with her parents and her 5 year old sister called Jaden. Jaden has Crouzen's syndrome, and her dad was telling me how much she hates the doctors especially the eye doctors.
Emma is really the exact opposite! After we'd been there a few hours she said at one point, "I like seeing doctors!!" clapping her hands. She then said "Am I a good patient?" In all honesty I told her she is the very best!
Our first session was with genetics. I wasn't sure what they could tell me, but I was surprised. There is a new theory on the cause of Moebius Syndrome - a vascular issue (blood flow) not genetics. This is good for the chances of the condition being passed on. Not so good for the ever-present question in my head - "what did I do to cause this?"
Anyway, I try not to dwell on that and won't here!
Next we went to audiology. I fully disclosed that she had been diagnosed with an ear infection, which they confirmed through testing her inner ear through the drum and also bypassing the [fluid filled] drum.
Emma is now a pro at the test where she has to "listen" to a block held up to her ear, for the "birdie" noise (which comes through the head phones she's wearing. To everyone's amusement, each time they played the sound at a different frequency she responded with "That doesn't sound like a birdie!" maybe 20 times, each time with the same incredulity!
We skipped the ENT doctor :-) , because we have to go back for retesting in 2 months! :-(
We visited opthamology, where Emma impressed with her knowledge of the alphabet. Unfortunately, she likes to mess with the person performing the tests and pretend she doesn't know it! That's when I have to step in and get her to do it for real!
There is a lot of wait time between the initial nurse evaluation and seeing the actual "doctor" in each department. Thankfully I brought the laptop (with DVD playing software downloaded) so Emma could watch her new Strawberry Shortcake movie (over and over!)...
And over...
We saw a pediatrician, who was very pleased with her.
We saw the cranial-facial surgeon, who had nothing new to report. It does look as though Emma's lower jaw has caught up and is less small.
We saw a speech therapist, who repeated the same word several times - "congratulations"!
We saw the dentist and orthodontist, who were happy with her progress.
Then we went in to see the social worker and they couldn't have put us in a better room...
Emma loves Jessie. Of all the toys she got for her birthday, Jessie is the one that comes out with us!
We didn't have any concerns for the social worker and she confirmed that helping Emma to be self-confident and independent, as she certainly is, is the best thing for her (and any child!)
We finally got done at 3.30pm - not kidding, that's a really long day with only a 45 minute break for lunch (not including the 4+ hours that we probably spent just waiting!)
Even so, I had to stop by the NICU and see my girl Taryn - we stopped by at lunchtime but she was saving a baby's life! By the time she came out Emma was moments away from passing out on my shoulder (which she did).
I also got to see one of my favorite nurses from Emma's stay, who I hadn't seen since we left, Denise (my Uno partner!)...
I was exhausted after this day, but I could never have anticipated the amazing triumphs we would have had in just four years. Tired, but joyful!
Emma and I waited patiently in the waiting room with other families there for the same reason. I didn't see any other kids with Moebius, in fact as I looked around (careful not to seem staring!) Emma had the least obvious facial differences.
This was quite a revelation to me, because although I know that Emma's differences are subtle and easily missed, I live in a town where all the teenage girls seem to be clones (or wannabes) of the trends of the time. It seems as though any differences will be glaringly obvious.
It doesn't take long when you visit the hospital to gain some real perspective on just how blessed Emma is to be healthy and on the mild end of the syndrome.
Emma quickly made friends with a 2 year old called Skylar, who was there with her parents and her 5 year old sister called Jaden. Jaden has Crouzen's syndrome, and her dad was telling me how much she hates the doctors especially the eye doctors.
Emma is really the exact opposite! After we'd been there a few hours she said at one point, "I like seeing doctors!!" clapping her hands. She then said "Am I a good patient?" In all honesty I told her she is the very best!
Our first session was with genetics. I wasn't sure what they could tell me, but I was surprised. There is a new theory on the cause of Moebius Syndrome - a vascular issue (blood flow) not genetics. This is good for the chances of the condition being passed on. Not so good for the ever-present question in my head - "what did I do to cause this?"
Anyway, I try not to dwell on that and won't here!
Next we went to audiology. I fully disclosed that she had been diagnosed with an ear infection, which they confirmed through testing her inner ear through the drum and also bypassing the [fluid filled] drum.
Emma is now a pro at the test where she has to "listen" to a block held up to her ear, for the "birdie" noise (which comes through the head phones she's wearing. To everyone's amusement, each time they played the sound at a different frequency she responded with "That doesn't sound like a birdie!" maybe 20 times, each time with the same incredulity!
We skipped the ENT doctor :-) , because we have to go back for retesting in 2 months! :-(
We visited opthamology, where Emma impressed with her knowledge of the alphabet. Unfortunately, she likes to mess with the person performing the tests and pretend she doesn't know it! That's when I have to step in and get her to do it for real!
There is a lot of wait time between the initial nurse evaluation and seeing the actual "doctor" in each department. Thankfully I brought the laptop (with DVD playing software downloaded) so Emma could watch her new Strawberry Shortcake movie (over and over!)...
And over...
We saw a pediatrician, who was very pleased with her.
We saw the cranial-facial surgeon, who had nothing new to report. It does look as though Emma's lower jaw has caught up and is less small.
We saw a speech therapist, who repeated the same word several times - "congratulations"!
We saw the dentist and orthodontist, who were happy with her progress.
Then we went in to see the social worker and they couldn't have put us in a better room...
Emma loves Jessie. Of all the toys she got for her birthday, Jessie is the one that comes out with us!We didn't have any concerns for the social worker and she confirmed that helping Emma to be self-confident and independent, as she certainly is, is the best thing for her (and any child!)
We finally got done at 3.30pm - not kidding, that's a really long day with only a 45 minute break for lunch (not including the 4+ hours that we probably spent just waiting!)
Even so, I had to stop by the NICU and see my girl Taryn - we stopped by at lunchtime but she was saving a baby's life! By the time she came out Emma was moments away from passing out on my shoulder (which she did).
I also got to see one of my favorite nurses from Emma's stay, who I hadn't seen since we left, Denise (my Uno partner!)...
I was exhausted after this day, but I could never have anticipated the amazing triumphs we would have had in just four years. Tired, but joyful!
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