Today we went to see Emma's pulmonologist for her 4 month check. Scott was able to come with us today, which is great because I don't have to relay the conversation and there are two of us to amuse Emma! It actually feels like family time more than just a dr appointment.
We started out in the new standard of screaming crying and turning flaming red when the poor nurse tries to get a weight and height check!! We did manage it and Emma is now 22lbs, and still 30 1/4" tall.
In the consultation room we hastily got her dressed so she would know there was nor more "messing" to be done! Then we put her down so she could walk around int he hallway (we were the last appointment of the day so the place was deserted.) Of course she quickly dropped to all fours (gasp) and then put her hand in her mouth (double gasp!). I grabbed her hands and had Scott sanitize them as quick as possible - hospital floors are just not sanitary!
We walked past the room where her doctor and a student were doing paperwork. Dr. R. was very pleased to see her walking and here her vocalizing - just as well because she turned into a mute limpet the second he walked in the consult room!!
This Dr has had 5/6 patients with Moebius, more than most other people, so we consider him her primary consultant. His main medical concern is Emma's airway (obviously) and in particular the obstruction when she sleeps. I asked him to give a psychic prediction (in those exact words!) on how long he felt she would need the CPAP. In my laymans words this is what he said:
Emma doesn't have the sleep apnea like most people, she really has an obstruction that is helped with the same treatment as "sleep apnea" and they are categorized together. He feels that she'll probably need it until early childhood, when if she is talking and eating well it may help reduce the obstruction to her breathing. At that point he would consider doing a sleep study to see if she has improved airway in sleep - but we don't want to do it too soon as a reduction in difficulty could mean we lose nursing!!
He also mentioned that removing her tonsils and adanoids (sp?) would reduce the obstruction if it was felt necessary at that point.
He also mentioned that we will likely be considering "cosmetic" surgery when she is 5/6, which could include a mandibular distraction (moving her small jaw forward, enlarging her airway) and dental work.
Since Dr. R. helped me to train Emma to sleep better I asked him what he thought would be best for transitioning her into a bed. The concern being around her getting up while she is hooked up to machines!!
He suggested that, well before the baby comes, putting a mattress on her floor and letting her sleep on it for nap etc, but not forcing it. We could either wait until she's asleep to hook her up, or put the CPAP and puls-ox on and hope she learns quickly that she should stay in bed!! I think we are going to give it a try since her sleep pattern has changed a bit since she started walking anyway.
The best part was that as she relaxed throughout the appointment she started to imitate the doctors posture and when he gave her a pen she started writing just like he was. It was hilarious. At one point she wanted to look closer at his ID badge and he commented on it not being a good picture. I said that he was keeping it though as it was taken 20 years ago and he looks younger! (It's okay, we have that kind of rapport with most of Emma's docs!) the student thought it hilarious and Scott pointed out hew probably couldn't say stuff like that!
As we were leaving we wondered if the doctor who delivered Emma might be around, and we saw him right away!! She acted all shy with him, but it was great to show him how well she is doing. We also saw the ultrasound technician who checked on Emma twice a week for the last two months of my pregnancy. They were both excited about our new baby too.
A good visit!
We started out in the new standard of screaming crying and turning flaming red when the poor nurse tries to get a weight and height check!! We did manage it and Emma is now 22lbs, and still 30 1/4" tall.
In the consultation room we hastily got her dressed so she would know there was nor more "messing" to be done! Then we put her down so she could walk around int he hallway (we were the last appointment of the day so the place was deserted.) Of course she quickly dropped to all fours (gasp) and then put her hand in her mouth (double gasp!). I grabbed her hands and had Scott sanitize them as quick as possible - hospital floors are just not sanitary!
We walked past the room where her doctor and a student were doing paperwork. Dr. R. was very pleased to see her walking and here her vocalizing - just as well because she turned into a mute limpet the second he walked in the consult room!!
This Dr has had 5/6 patients with Moebius, more than most other people, so we consider him her primary consultant. His main medical concern is Emma's airway (obviously) and in particular the obstruction when she sleeps. I asked him to give a psychic prediction (in those exact words!) on how long he felt she would need the CPAP. In my laymans words this is what he said:
Emma doesn't have the sleep apnea like most people, she really has an obstruction that is helped with the same treatment as "sleep apnea" and they are categorized together. He feels that she'll probably need it until early childhood, when if she is talking and eating well it may help reduce the obstruction to her breathing. At that point he would consider doing a sleep study to see if she has improved airway in sleep - but we don't want to do it too soon as a reduction in difficulty could mean we lose nursing!!
He also mentioned that removing her tonsils and adanoids (sp?) would reduce the obstruction if it was felt necessary at that point.
He also mentioned that we will likely be considering "cosmetic" surgery when she is 5/6, which could include a mandibular distraction (moving her small jaw forward, enlarging her airway) and dental work.
Since Dr. R. helped me to train Emma to sleep better I asked him what he thought would be best for transitioning her into a bed. The concern being around her getting up while she is hooked up to machines!!
He suggested that, well before the baby comes, putting a mattress on her floor and letting her sleep on it for nap etc, but not forcing it. We could either wait until she's asleep to hook her up, or put the CPAP and puls-ox on and hope she learns quickly that she should stay in bed!! I think we are going to give it a try since her sleep pattern has changed a bit since she started walking anyway.
The best part was that as she relaxed throughout the appointment she started to imitate the doctors posture and when he gave her a pen she started writing just like he was. It was hilarious. At one point she wanted to look closer at his ID badge and he commented on it not being a good picture. I said that he was keeping it though as it was taken 20 years ago and he looks younger! (It's okay, we have that kind of rapport with most of Emma's docs!) the student thought it hilarious and Scott pointed out hew probably couldn't say stuff like that!
As we were leaving we wondered if the doctor who delivered Emma might be around, and we saw him right away!! She acted all shy with him, but it was great to show him how well she is doing. We also saw the ultrasound technician who checked on Emma twice a week for the last two months of my pregnancy. They were both excited about our new baby too.
A good visit!
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