Fever, bad ER visit, vent, ugh!

These past three days have been really tough and emotionally draining. It started a few days ago.   Since about Sunday, Hannah had just not been acting like herself.  Very clingy, not wanting to play, just not feeling great.   She was a bit more gookier than usual in her trach, but it was still […]

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Tummy troubles

Hannah has started to develop some what-we-think-are gastrointestinal issues.   There are really two separate issues, but I digress… Constipation.   This started a couple of months ago (a few weeks before we started the Keppra wean).   Where once she was somewhat regular, it became more like a few days in between.   It […]

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Planning Hannah’s future

We had Hannah’s IEP meeting yesterday.   We were told ahead of time that it would take 2 to 3 hours and there would be quite a few people there.   Sure enough, about 15 people brainstorming together (including us) for about 3 hours is what it took to put together goals and tools for […]

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Sweet caresses

We are just a few days from our complete wean from Keppra, her seizure drug.   We haven’t noticed any increase in her movements or any other activity that would indicate she is experiencing seizures.   She has her EEG on September 29th, so we will see if she is having anything going on. As […]

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Preparing for school

First off, just wanted to share with everyone that Hannah’s “mysterious lump” was just a cyst!!!!   Talk about relief 🙂   Even better, it is almost gone already. Next week is a big week for Hannah’s educational, therapeutic, and socializational future.   We have her first IEP planning meeting on September 1st.  You know, […]

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Could Keppra be that bad?!

We have always been told that Keppra was a very safe drug, “benign” was even one of the words used to describe it by one of Hannah’s former neurologists.   She was put on it just days after her stay began at TCH well over a year ago after her initial tonic-clonic seizure brought on […]

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