Tuesday, April 19, 2011


Spring has sprung around here. The weather is warming up, our grass is turning green, and my tulips without blooms are taking over my flower beds. (I'm hoping that's not foreshadowing of our time in Holland...can you soak in the beauty of a tulip if it doesn't have a bloom?!?)

Anyway, spring means it's time for our annual beeping Easter egg hunt in Ft. Worth with the Gray family :) So, we made our appearance, but Kendall (and Justin) couldn't get out of there fast enough...and Kamden wanted to stay all day. We snapped a few pictures with the Easter bunny, saw some old friends, and enjoyed the morning together.

I suppose from here on out, Spring will also mean it's IEP time. So, I guess I need to do a follow up to our ARD on Friday.

I thought it went really well, but am frustrated that we still do not have a set plan for nursing. It was agreed that Kendall will require a one on one LVN during her time in school. The District says they can provide that, but the Director of Nursing was not able to attend our ARD and has not returned my phone calls (STILL!!) So, I am feeling extremely uneasy about everything. Who would send their medically complicated child to school to be cared for by someone they've never met?! Definitely not this girl. And I am shocked Mansfield ISD thinks that is OK.

It really is a shame that the group of people working with Kendall all have worked so hard to write goals and make Kendall's ARD a priority, and this one thing is holding us back. Mansfield has surpassed my expectations in easing the transition into PPCD for Kendall... Everyone has had excellent communication and caring hearts. Everyone except the Director of Nursing.

So I still don't know the plan for Kendall starting school next week. I would love to throw in the towel, but this is just the beginning and I can't give up that easy.

We go for Kendall's video EEG tomorrow. The increased Keppra seems to be working, but I still need to know what is going on at night, and if there are any other disguised seizures.

Oh, and just in time for a 24 hour hospital stay, we shattered the iPad screen again!! Can a girl catch a break?!?!?

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