Archives for the month of: March, 2009

We are now in the middle of week two of Grace’s Felbatol decrease, down to less than a third of her regular dose.  We make one more drop next Tuesday for one week and then off of Felbatol.  So far we have not seen any significant increase in seizures which is rather surprising.  Once off Felbatol and blood levels look good we will get a plan ready to start increasing Banzel (the new med).

Grace is becoming much more vocal, lots of sounds. Some sound angry or upset but she has a big smile on her face.

Hoover has successfully recovered from our temporary abandonment during Grace’s hospital stay and appointment in St. Paul.  We have to break him of some bad habits, Joy caught him sleeping on the couch the other morning.

Grace has a new nurse that started with us recently, she marvels at Grace’s hair, this picture shows it off a bit.

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We have moved Grace to a big girl bed, bunk beds fitted with a tent that Kevin designed in order to keep her safe.  (It is seriously a masterpiece).   She was too big for the crib – and too active (a great problem to have).  The problem is, there is this small gap between the mattress and the tent – and Grace seems to like fitting herself into it.    I guess that’s not the problem, the problem is more about sometimes Grace can’t get out of that gap by herself.  We have tried to fill it – notice the pool noodles – but she always seems to get around it.  I guess there is really no end to my story – just wanted to be able to share that we are working with it!

I admit, we are tired.  The last nine days have brought 104.9 degree temperature, a shot of antibiotics, an ear infection, more antibiotics, an ER visit, a two night stay in the hospital, elevated liver enzymes, a discussion of a spinal tap to diagnose meningitis or encephalitis, lots of suctioning, an IV, labs, a trip to Minnesota, a visit with the epileptologist, more labs and oh yes – an EEG.  Hoover would be much neglected without the love of our neighbor Suzi.  Grace has been a trooper through all of it – as long as she gets to snuggle when she needs, and as long as she has her phone she seems to maintain – its seriously amazing to see.  We are home now – there are weekly blood draws, and weekly medication changes that will have to be made as we look forward to the next few weeks.  Her seizures continue to be getting better- still not ready for the celebration though.  And how random is this – we are renting a suction machine should she continue to need it?!  thank you so much – all of you who called, wrote notes, and offered to do anything we need….  just that was what we needed.