Yes, Madison turned 11 years old yesterday and I can not believe it. Wow, the time has flown by...I barely even remember her baby years. :( That means I will be 31 in just 10 days. I know that's not old but it seems so old to me....haha.
I really do not have much to report. We are just living life and staying on the downlow which we like. Autumn is getting so much better with her head control and sitting up. I've started a vent log to really see how much she is staying off the vent. She has some days when it's just an hour or less and then others that she's off a total of 4 hours. She really does frustrate me because she's never consistent with ANYTHING. I've been having other frustrations with her as well....she has stopped eating by mouth. Not sure why. Maybe because she's teething, maybe an ear infection, maybe aspirating and not wanting to eat, or maybe a shunt malfunction since she gags when she eats at times now. She's also vomiting after her tube feeds but that's not consistent either. Sometimes it's morning, sometimes afternoon, and once she did at night. I've played around with her prevacid to giving a full dose in the morning instead of giving half in am and pm. This keeps her from vomiting in the morning but not in the afternoon. We even keep her still for an hour after she eats but as soon as we start messing with her she vomits. This is why our weaning process is going slowing since we have to do it between feeds, therapies, and naps and that does not leave much more time during the day. I hope vent clinic will be able to help us come up with a plan and see what we need to do...I've run out of ideas myself. ;) But that is Autumn for you....everytime we get use to something and in a routine she changes things up...such a sweet girl.
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