No matter how you choose to explain it. there is no escaping the fact that Emma has been markedly improved these past couple of days in her eating. Since I prayed earnestly for God's intervention, versus a toss-away cry of frustration.
Take today for example, no gas or gagging between bolus feeds and she ate scrambled egg and toast for breakfast; chicken nuggets for lunch; and pizza and ice-cream for dinner!
What makes all the difference is Emma's attitude and demeanor. Comments like "I'm ready for more egg now", "I want more chicken nugget" and "I'm going to eat my pizza all up" are sweet music to my ears and I will jump through hoops to hear them!!
It made a world of difference to a potentially fraught day! I woke up with a head full of lead, and gunk, with a schedule of an planning meeting at 11am for Emma's pre-school therapy and an appointment some 15 miles away at 1pm with Emma's pulmonologist.
The first meeting went well, and mercifully quick, finishing ahead of the 12pm request! Emma will get 30 minutes of speech therapy and 45 minutes of physical therapy weekly, and just 30 minutes per month of occupational therapy. Since the latter should be Melissa, and she can not shut-off her OT side, I know Emma will get informal coaching whenever we see her personally!!
45 minute drive down to the city (that's right, 15 miles takes a long time round here!), Emma having passed out early in the drive, and we get to Children's Hospital. As we sat waiting for our appointment who should walk in but Ashley, obviously a daily visitor there, but not usually in the same area! That was a fun coincidence.
We also saw Emma's surgeon, the doc who delivered her, and the team who gave me pre-natal care. Emma blew them all away. (Hi Laura!!)
Our meeting with Dr. R. went great. He was astounded by her enunciation (and he's not the "astounded" type!) and thrilled with her progress. I was worried her weight would be off after her decreased appetite of recent weeks, but she was still on the curve.
In fact, after a short time he just told me "I really have nothing to say here!" Unless we report an increase in snoring or other apnea symptoms she should be of little concern. Apparently kids adenoids and tonsils get large around 4 or 5 so we could see a recurrence of apnea then.
Dr. R. also said that Emma has much more movement and control than the other kids he sees with Moebius. In fact he is not used to the conversations we were having concerning her speech and eating, rather more serious things like airways which is no longer a concern with Emma! (I'm interested to see what the craniofacial surgeon says next week at our big appointment - he hasn't seen her in two years!)
She cracked us all up while playing a game on my phone. The nurse practitioner said "is that an orange?" and Emma responded with "No, it's a nectarine." Well okay then!!
It's been a good day.
Take today for example, no gas or gagging between bolus feeds and she ate scrambled egg and toast for breakfast; chicken nuggets for lunch; and pizza and ice-cream for dinner!
What makes all the difference is Emma's attitude and demeanor. Comments like "I'm ready for more egg now", "I want more chicken nugget" and "I'm going to eat my pizza all up" are sweet music to my ears and I will jump through hoops to hear them!!
It made a world of difference to a potentially fraught day! I woke up with a head full of lead, and gunk, with a schedule of an planning meeting at 11am for Emma's pre-school therapy and an appointment some 15 miles away at 1pm with Emma's pulmonologist.
The first meeting went well, and mercifully quick, finishing ahead of the 12pm request! Emma will get 30 minutes of speech therapy and 45 minutes of physical therapy weekly, and just 30 minutes per month of occupational therapy. Since the latter should be Melissa, and she can not shut-off her OT side, I know Emma will get informal coaching whenever we see her personally!!
45 minute drive down to the city (that's right, 15 miles takes a long time round here!), Emma having passed out early in the drive, and we get to Children's Hospital. As we sat waiting for our appointment who should walk in but Ashley, obviously a daily visitor there, but not usually in the same area! That was a fun coincidence.
We also saw Emma's surgeon, the doc who delivered her, and the team who gave me pre-natal care. Emma blew them all away. (Hi Laura!!)
Our meeting with Dr. R. went great. He was astounded by her enunciation (and he's not the "astounded" type!) and thrilled with her progress. I was worried her weight would be off after her decreased appetite of recent weeks, but she was still on the curve.
In fact, after a short time he just told me "I really have nothing to say here!" Unless we report an increase in snoring or other apnea symptoms she should be of little concern. Apparently kids adenoids and tonsils get large around 4 or 5 so we could see a recurrence of apnea then.
Dr. R. also said that Emma has much more movement and control than the other kids he sees with Moebius. In fact he is not used to the conversations we were having concerning her speech and eating, rather more serious things like airways which is no longer a concern with Emma! (I'm interested to see what the craniofacial surgeon says next week at our big appointment - he hasn't seen her in two years!)
She cracked us all up while playing a game on my phone. The nurse practitioner said "is that an orange?" and Emma responded with "No, it's a nectarine." Well okay then!!
It's been a good day.
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