Archives for the month of: January, 2009

Kevin is driving us home from St. Paul as I’m writing this.  Grace next to me snug in her car seat.  She has blue marker and glue all over her hair from our 8:30 am EEG.  EEG’s are not very much fun – she hates the people touching her head, measuring, marking, gluing – and re-gluing.  I hate to watch it – and you watch it up close – laying on her….  her arms tight to her body wrapped up in a sheet…..she looks at you and gives you this look – You!  I can’t believe YOU are doing this to me?  Please…. Help me!  But you hold her and talk nonsense about how they are using blue magic marker this time rather than the orange one that they used last time.  You tell her what steps come next…and you watch the tech helping you relax, because they know that you know exactly what’s going on and the crying and screaming-  you aren’t holding it against them.  Anyhow – Grace’s hair is blue from all the magic marker, and in the extremely colorful outfits we like to have her in today she looked a little punk rocker like.  Dr. Doescher’s nurse said there’s a club – called Uptown -that Grace was dressed appropriately for today in her wild child way.  I guess our visit today with Dr. Doescher that followed the comment was good.  Painful – almost always.  Affirming – almost always.  And today a twist….  a direction to empower ourselves further – to go with our guts – notice that we have a little time – Grace is doing well – yes seizures are affecting her quality of life – but she is doing well.  Our Uptown Girl – despite her appearance is holding her own.  And now a few hours later and just a few moments ago – the song…… Had a bad day…..  the song Kevin and I heard shortly after we heard Grace’s diagnosis in June 2006.  It played on the radio.  That song for me – is my call…  my call to step to the plate…. to step to the plate mindful of sadness…. full of hope… relying on faith, love, family, and friends….with the knowledge that the little girl we’ve been given has been entrusted to us…….  me and Kevin.  We’ll continue to be mindful….continue to pay attention….and continue to stand in the box.    All that to say our little Uptown Girl….she didn’t have a bad day 🙂



Grace had a busy day today.  It started yesterday actually….as she had a large number of seizures and we had to give Diastat twice.  We were almost ready to go to the ER but she fell asleep and her seizure stopped.

We got up early (we meaning Kevin) to go to the hospital and have some blood drawn, Grace slept through the entire thing; she still cried an fussed when they poked her but remained asleep.  It seriously was our best blood draw ever…one poke, 6 or 7 vials later we were done.  Grace woke up just after getting back home.

She had PT this morning where she is doing a good job stepping down off a ramp.  At noon she got fitted for her stroller for school and then this afternoon she had her last Early Access OT Session.  Grace is getting older, three in a couple weeks, and she starts school next week.

Grace is getting back to normal, She still has a little left over congestion but it’s getting better each day.

It’s cold here, so cold Hoover moved his pad away from the outside wall, he is a dog of leisure!

Grace is doing better, she woke up and wanted to play, she did so for about 30 minutes and then crashed.  She’s still sleeping about 18 hours a day (ohhh that would be nice).  Her temperature remains up holding between 99 and 100.

Started her on a nebulizer today to help with the congestion.  She doesn’t fight the mask as she is too tired.

Grace really isn’t feeling well – she was awake a whole 15 minutes while our nurse was with her – and not quite an hour since I got home at four.  Her eyes are puffy, she’s got a hacking cough….and she’s getting warmer and warmer again….thank goodness we can give ibuprofen again soon.  The pediatrician didn’t exactly have great news – evidently there is a bug going around – we are likely to continue to see fevers at 104 or more the next 3-4 nights.  She’s got a hacking cough.  And there isn’t anything we can do to help her – other than ibuprofen, sleep, and plenty of fluids.  I hate for her to be sick.  Kevin and I are both tired from last night and to know that it will happen again, again, again, and maybe again is daunting.  But we’ll do it.  We’ll do it because we love her so much – because she matters more than anything —  if you read this though and wouldn’t mind sending a few good thoughts our way – we’d take um.  And because so many of you that love her too read this… I promise we’re taking really good care of her.