Saturday, February 27, 2010
It's Official ...
My faithful binder,that has seen me through NICU days,heart surgery prep days and chemo days,has now become our school days binder.I cleaned out all the papers from our almost 9 months of chemo.That is the stack beside the notebook ...every single lab report from every single day spent inpatient.Not sure why I have hung onto them but I did and I will.I'll pack them away with the rest of her medical history forms.Reminders of the road that has led to this day.Reminders of Zoey's remarkable will to survive.Reminders of a little life that came to teach us all about courage,determination and forgiveness.A life brimming with hope and possibilities.
Yesterday we had our final IEP meeting.A round table of 14 people.Yep,I was a bit over whelmed as I walked into the room,casually,with hot chocolate in hand and 10 minutes late,as I couldn't find the building on campus.Luckily,a few familiar faces adorned the table.Mainly our friends,Christi and Patty,Zoey's PT and Vision therapists.Zoey's OT and speech therapist couldn't make it.School and other IEP's to attend.But could you imagine... 2 more.In my mind,all I could think of was how incredible it was,all these people who came together with one goal and that was to officially usher Zoey out of Early Start and into the school system.
The meeting went fairly smooth.Always a bit of underlying tension when you have strong,opinionated,highly qualified, women, all in one confined space.I think,in the end,we all were in agreement with the layout of "Zoey's plan".Zoey qualifies for 5 days a week,2 and 3/4 hours per day.In her week there will be OT,vision,and speech therapy within the classroom.We have opted out of PT.Zoey's stamina is still quite low and we have decided that having her PT therapy,out of school,in an afternoon,after a nap,will best suit her.We don't want her expending so much physical energy that she is not able to participate in the cognitive and social side of school.Zoey will have a one on one aid.There are 8 children in the classroom.One amazing teacher and two aids.So the the ratio is 8 children to 2 aides,the main teacher and then Zoey and her aid.Safety in Zoey's environment is my number one concern.With Zoey rolling and scooting everywhere,we need to ensure that someone is attending to her at all times,as all the other children are walking.Actually, there is one little girl with CP,in a wheelchair but we still need to watch out for rolling wheels in that case.
Zoey's first day will be April the 5th.Hard to believe we have finally reached this day.What an incredible blessing.I cried.Several times in fact.Filled with immense joy that our little fighter girl has arrived in this moment.She is going to blossom.You should have seen her at that table.Laughing and signing funny,when conversations were accompanied with laughter.Smiling at everyone.Signing words that were in side conversations.Wanting to be held and hug ... everyone.2 hours,my girl sat there,happy,content and engaging.Imagine what a room full of energetic children will do for her.The other person in attendance was her care coordinator with Early Start,Lisa.Lisa and our family have had a long time relationship.Even before Zoey's birth, as she was our coordinator for Joe when he was diagnosed with severe apraxia.She has been a phenomenal source of support over the last several years.As we were leaving she had me sign a sheet that stated that we now will be provided with Zoey's diapers ... at no cost.By late yesterday afternoon I had already spoken to the company that provides the diapers and by the end of next week we should receive our first shipment.How great is that?This whole process,transitioning from ES to the school system has been extremely effortless.No fighting for services.No head butting.None of the headaches that I have often heard can go along with this process.Instead,yesterday,as I walked off of Zoey's new campus, I smiled.A big,content smile.And as I smiled, I moved with confidence across the street to our car,knowing that my little love is about to embark on yet another chapter of her miraculous life.This time, this chapter,holds the good stuff.The happy,carefree good stuff.New beginnings for our soon to be birthday butterfly girl.Speaking of which ...
Her birthday is Tuesday.We will just have a small little celebration on that day and gear up for the big party on Sunday.I am super excited.Busy with preparations and getting things all in order as the week will certainly fly by.I will more then likely be fairly hit and miss this week on posts.Lots to get accomplished and as organized as I can be,there will certainly be last minute crazyness but like I have said before... it's the good crazy.Taylor is home for spring break and Caitlin,Danny and my sweet grandbaby Charlotte, will be here on Friday.Cannot wait for all of us to be together.
I leave you with a few pictures from the last week.Very random.The boys made a "pancake bed" on the couch and Zoey joined them.My favorite one has got to be Joe... passed out with ipod blasting.Joe has been adjusting to an increase to his medication this past week and without fail,everyday,he finds his way to our large ottoman and crashes.In fact if you look at the previous posts pictures with Zoey and her therapists,Joe is in the background fast asleep.Hopefully he will begin to adjust shortly.Feel so bad for the little guy.You can see the fatigue hit and by then there is no keeping him vertical.