Monday, February 28, 2011

Blessed

vail2-11

I had a wonderful trip with my friend. It was very relaxing and great to spend time together. We ate a ton of bad food and shopped til our feet hurt. We laughed as we reminisced of our crazy college days, and how drastically both of our lives have changed since then. Of course, I was anxious to get home. It was just another reminder how blessed I am to have such a beautiful and loving family to come home to. I've decided that I thrive on the craziness of my dogs, kids, and husband. My home is my place. My pj's are my favorite clothes. I like to eat marshmallow creme on saltine crackers standing over the sink while watching Kendall discover something new. I missed her smell. And Kamden's constant talking and loud guitar playing. I slept better last night with Kendall kicking me in the ribs and scootching around in my bed than I did all weekend. (yes, she still sleeps in our bed every night. that will be addressed in a later post!)


mobile stander2-11

We recently received the mobile base for our Squiggles stander. When the tray is off, Kendall is beginning to roll the wheels on her own. She stands really well in the stander and enjoys being upright. Now, she can roll around the whole house, the front and back yard, and up and down the street if she wants to. With the tray on, we can push her or lock the wheels. With it off, she has the freedom to move. I think with enough practice she will get the hang of it in no time (while also getting the benefits of weight bearing in a great position).

This morning we had Kendall's Evaluation with the school district. Really, there were no surprises...just a lot of people in one room. We had PT, OT, Speech, Diagnostician, our ECI Coordinator, Nursing Director, our beloved Vision Team, my dad, Justin, Kendall, and me. Her IEP/ARD will be in about one month. There were a lot of things to sign, and a lot of questions to answer. I'm not certain why I had to gather all her medical files together, as they didn't look at them at all. My greatest concern is, and has always been, making sure Kendall's needs are met physically. We need qualified people administering medication, feeds, and insulin. In my opinion, that is a nurse (especially since Kendall is a non-verbal, insulin pump dependent Diabetic, with hard to recognize seizures.) A nurse who knows her. But I was encouraged to talk with the school nurse and not given any real answers. I called my nursing agency right after and they put my mind at ease that it will all work out. They even offered to attend Kendall's ARD with me, which I intend to take them up on.

kam/kendall2-11


We are still waiting for the Nephrology Nurse to call us with Kendall's echo results and latest lab results. I will post an update on those when they are received...

4 comments:

Cassie said...

marshmallow creme on crackers? really? :)

The M's said...

Blessed indeed!!!! Praying for the pending results.

Anonymous said...

Hi, I literally just stumbled onto your blog. I was just reading about the meeting you had at your school district. I don't know what your situation is...I'll have to keep reading! My mom fought very hard for my sister's full inclusion. One thing I learned from her fight were these simple words "Can I get that in writing?". Whatever you ask for and the school says no..."can I get that in writing?". Remember, special education is a SERVICE, not a placement, and it is illegal for school districts to tell parents otherwise. Like I said, I just stumbled upon your blog and this post...but make sure you have EVERYTHING you envision for your daughter written out in a plan (nurses and all), and when the school district tries to modify it or tells you no...slap down a pad of paper and a pen and prepare to walk out of the meeting if they don't "put it in writing".

TherExtras said...

Love how the mobile base offers so much to Kendall! Thanks for showing it! Barbara