Hi everyone! Macy and Dad are busy playing tea party, so I’ll step in this week for a little 
blogging. While I’m not nearly as funny as Macy is, I can fill you in on how things are going around here. The short story is that we are doing well. Macy is a happy, BUSY girl. She will be 18 months old on Thursday, which is such a cute age (the calm before the “terrible twos”).
Macy can do the sign language for about 15-20 words, and can sort of say about another 10 words, although they are words only Mom can understand (“she” = fish, “ock” = sock, “meow” = cat, “yum, yum” = Cookie Monster). The speech pathologist that comes to our house weekly has observed that Macy can produce sounds using the back of her tongue, but hasn’t quite figured out how to use the front of her tongue to talk yet. The speech therapist said that she hasn’t learned how to use the muscles in her mouth to eat, so it’s no surprise that she isn’t able to use those same muscles properly to speak. It will take time, but it will come.
She still isn’t really eating anything yet. By this I mean that she gets 100% of her nutrition from the feeding tube, and no food goes down, but we are definitely working on it. It is such an incredibly, INCREDIBLY slow process that it blows my mind. It is a true test of patience. Our speech pathologist is absolutely wonderful, and has given us specific strategies to exercise to help desensitize Macy’s oral aversion to food. Over a 45-minute feeding period we start with holding a spoon of pureed baby food a couple of feet away from her for about 5 minutes or so, and we very slowly inch it closer to her throughout the feeding period.
A successful feeding for Macy is eventually allowing the spoon to touch the corner of her mouth (without going inside her mouth). She always resists this at first, and sometimes we get there, and sometimes we don’t. Our goal is to have her take at least one bite of anything from a spoon by this summer. As for the feeding tube, our hope is that we can wean her from it by the time she is 3 years old.
One improvement that we are so very thankful for is that she doesn’t gag and vomit as much as she used to. A cough, laugh, or simple kiss on the cheek used to trigger a gag and then she would lose her entire feeding, which would happen up to 5-6 times a day. We are happy to say that she only loses about one feeding a week, and her reflux has improved too. This is vital in getting her to overcome her oral aversion and learn to eat. I know that many of you have been praying specifically for this, and I want to let you know that your prayers are working. THANK YOU!!!
blogging. While I’m not nearly as funny as Macy is, I can fill you in on how things are going around here. The short story is that we are doing well. Macy is a happy, BUSY girl. She will be 18 months old on Thursday, which is such a cute age (the calm before the “terrible twos”).Macy can do the sign language for about 15-20 words, and can sort of say about another 10 words, although they are words only Mom can understand (“she” = fish, “ock” = sock, “meow” = cat, “yum, yum” = Cookie Monster). The speech pathologist that comes to our house weekly has observed that Macy can produce sounds using the back of her tongue, but hasn’t quite figured out how to use the front of her tongue to talk yet. The speech therapist said that she hasn’t learned how to use the muscles in her mouth to eat, so it’s no surprise that she isn’t able to use those same muscles properly to speak. It will take time, but it will come.
She still isn’t really eating anything yet. By this I mean that she gets 100% of her nutrition from the feeding tube, and no food goes down, but we are definitely working on it. It is such an incredibly, INCREDIBLY slow process that it blows my mind. It is a true test of patience. Our speech pathologist is absolutely wonderful, and has given us specific strategies to exercise to help desensitize Macy’s oral aversion to food. Over a 45-minute feeding period we start with holding a spoon of pureed baby food a couple of feet away from her for about 5 minutes or so, and we very slowly inch it closer to her throughout the feeding period.
A successful feeding for Macy is eventually allowing the spoon to touch the corner of her mouth (without going inside her mouth). She always resists this at first, and sometimes we get there, and sometimes we don’t. Our goal is to have her take at least one bite of anything from a spoon by this summer. As for the feeding tube, our hope is that we can wean her from it by the time she is 3 years old.
One improvement that we are so very thankful for is that she doesn’t gag and vomit as much as she used to. A cough, laugh, or simple kiss on the cheek used to trigger a gag and then she would lose her entire feeding, which would happen up to 5-6 times a day. We are happy to say that she only loses about one feeding a week, and her reflux has improved too. This is vital in getting her to overcome her oral aversion and learn to eat. I know that many of you have been praying specifically for this, and I want to let you know that your prayers are working. THANK YOU!!!
Well, Ryan has told me that this blog is getting way too long, so I’ll have to stop here I guess. Macy will be back next week. Until then, check out some of her dancing.
You may all thank Dad's friend Scott for the use of his Justin Timberlake collection.
Happy Valentine’s Day!
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