Emma is now almost 17 months old, and I am 16 weeks pregnant, so it seems like a good time to cut out the breast pump. Over the past two weeks I've been cutting down on the pumping, which has lowered my production and this morning I packed away the pump!
It has been over 16 months of pumping every 3-6 hours during the day! We often never made plans that meant being away from home for more than 4 hours, just so I wouldn't need to bring the pump with me! It's so liberating to not have to worry about it at all.
Of course, most parents don't have to worry about bringing formula with them for a 16-month old. But we are doing okay with that, it's pre-mixed and comes in cans, so we don't have to mix it when we're out.
Which brings me to the next topic, feeding! Today and yesterday I fed Emma with her therapists here. It's hard to explain how discouraged I get when I do it by myself, so I am happy to have them here.
Our main problem has been trying to get the food to the back of Emma's mouth as she didn't seem to know how to do that with her tongue. so what I've been doing is filling her mouth with food until it must be at the back! What should happen automatically is that she would swallow. That doesn't happen.
When she does swallow, presumably by choice, the food goes down so far and then she gags and coughs it back up.
The speech therapist seems to agree with my theory that she may have problems with the mechanics of swallowing, past her tongue. Something that simply putting food in her mouth will not change. It's what we've thought since the NICU, but since she is so receptive to food, I don't think anyone wanted to believe it.
The next step is to have a swallow study done, where they can see exactly what is happening inside her throat. Of course, that may not be conclusive and until she can talk to us we my not know what is behavioral versus biological.
Although this isn't great news I do feel a sense of progress in that we are looking more in depth and considering other possibilities. As no two Moebius cases are the same, we really have to not make any assumptions.
Thankfully I'm feeling pretty good and that makes it easier to deal with challenges.
This morning I put a selection of photos of Emma into albums, finally! The next step will be to try and caption them all! I know I won't be able to remember when and what they all are for long!!
It has been over 16 months of pumping every 3-6 hours during the day! We often never made plans that meant being away from home for more than 4 hours, just so I wouldn't need to bring the pump with me! It's so liberating to not have to worry about it at all.
Of course, most parents don't have to worry about bringing formula with them for a 16-month old. But we are doing okay with that, it's pre-mixed and comes in cans, so we don't have to mix it when we're out.
Which brings me to the next topic, feeding! Today and yesterday I fed Emma with her therapists here. It's hard to explain how discouraged I get when I do it by myself, so I am happy to have them here.
Our main problem has been trying to get the food to the back of Emma's mouth as she didn't seem to know how to do that with her tongue. so what I've been doing is filling her mouth with food until it must be at the back! What should happen automatically is that she would swallow. That doesn't happen.
When she does swallow, presumably by choice, the food goes down so far and then she gags and coughs it back up.
The speech therapist seems to agree with my theory that she may have problems with the mechanics of swallowing, past her tongue. Something that simply putting food in her mouth will not change. It's what we've thought since the NICU, but since she is so receptive to food, I don't think anyone wanted to believe it.
The next step is to have a swallow study done, where they can see exactly what is happening inside her throat. Of course, that may not be conclusive and until she can talk to us we my not know what is behavioral versus biological.
Although this isn't great news I do feel a sense of progress in that we are looking more in depth and considering other possibilities. As no two Moebius cases are the same, we really have to not make any assumptions.
Thankfully I'm feeling pretty good and that makes it easier to deal with challenges.
This morning I put a selection of photos of Emma into albums, finally! The next step will be to try and caption them all! I know I won't be able to remember when and what they all are for long!!
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