Tuesday, January 25, 2011

Oncology check up,blanket delivery number 6 and IEP's...

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Mondays are traditionally super busy around here.Add an oncology clinic visit for Miss Zoey and a blanket delivery to our buddies on the 4th floor and that equates to a crazy kind of busy.Like,the crazy busy,when the morning seems like an entirely different day.You know,that kind of busy?But it all got done.And most importantly,I can report,with a very relieved mommas heart,that Zoey remains in remission.For that, we are beyond grateful.Cut loose for another 3 months.And as we bid farewell to our nurses and doctors,in the clinic and on the 4th,as much as we love them all and could never,ever thank them for the care and compassion with which they treated not only Zoey but also our entire family,to be on this side of chemo,feels,amazing.Zoey is blessed to be where she is in this moment and there is never a day that goes by that we do not acknowledge that.Especially after a day like yesterday, when we witnessed firsthand, those still in the throes of battling this beast.

Zoey was none too pleased about having her blood drawn.

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The minute we stepped into the draw station,it was all over.She immediately started breathing heavy and whimpering and holding onto me with a death grip and then finally,the crescendo ... crying at the top of her lungs.That made keeping her arm still for the stick a bit difficult.To make matters worse,Zoey,who is ordinarily forgiving in no time,decided to hold a grudge big time.She just kept giving that classic dirty look face that she does oh so well,with attitude I might add and repetitively continued to sign hurt,whiling looking most pathetically at her arm.I had to remove the band aide soon after the draw because it was upsetting her each time she caught a glimpse of it.After about 30 minutes of a pouty face and ignoring all who dared to speak to her,she snapped out of it and for the remainder of the very long day,she proceeded to dole out hugs and princess kisses,with the cute little sound attached to each and every one of them.I do believe she charmed each person she came in contact with.I try so hard to dispel stereotypes that are placed on our chromosomally enhanced loves but the one about how affectionate and loving they are,Zoey makes that one, difficult to not buy into!

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Before our appointment,we also made a blanket delivery to the 4th floor.You should have seen me.Quite the sight.Zoey strapped to the front of me in her carrier,while I dragged the 2 totes through the hospital,to the elevators and finally to the floor.Talk about a workout.I usually stand at the nurses station and we pick out the blankets according to age and for the boys and girls.Sometimes I see the kids.Often not.Too busy fighting the good fight behind closed doors.And having been a family who has been down that road,I know all too well,that although people have the kindest hearts and best of intentions, on some days,the last thing you want is to have to make small talk with strangers.Totally appreciative of all the beautiful gestures but,who wants to meet someone for the first time,with your kid puking or you still in your jammies,having cried your eyes out perhaps because the stress and the toll on your body and psyche is becoming more than you can bear?But yesterday,I did meet the sweetest little thing.Not much older than Zoey,who grabbed her blanket held it tight against her and proclaimed,"This is perfect.I love it.So much better than my Pooh blanket that is so small.This will be better.Oh thank you,thank you!"You should have heard the inflection in her voice,saw the way she showed me how she has to curl up to keep covered by her other blanket and most of all, seen her precious tiny face.I just wanted to scoop her up and take her from that place and let her be the little girl she should be .. running and skipping and playing dress up and pretend. Not wearing her warrior badge at the tender age of 4.Absolutely was another moment that reminded me of why I started and will continue this project.

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Today found me gathering info for Zoey's upcoming IEP meeting.Nothing daunting,just want to be prepared.I am pretty kick back at these little soirees and this next one will be much the same.This time I think though,I will be pushing a bit harder for an ATAC evaluation. Which is basically an evaluation to access Zoey and determine whether or not she is at a point that an augmentative and alternate communication device would be a good fit for her.I really feel she is about ready to utilize the benefits an alternate communicative device would offer.Her former Speech Therapist,who we love and desperately miss, had previously put in that recommendation when Zoey was released from Early Intervention last year,and up until this point, we really have not pursued it.Now feels like the right time.There are so many great options out there and we are hoping between the district and county they will be able come up with something for her to use within the classroom setting.As far as at home,as soon as that money tree is in full bloom,we would really like to purchase an iPad for her.I have been on countless blogs over the last few months,not to mention 3 in the last week,where the iPad is working magic with their special needs children.With Zoey's vision loss and CP secondary diagnosis due to her stroke,finding the best way to approach her learning has proven tricky.The combination of all of Zoey's issues,when put together as a whole, leaves us questioning not what she is capable of but rather how do we best give her the tools to get there.

And she'll get there,that much I am certain of.After all,look how very far she has already.






24 comments:

Denise said...

I am telling you....that child "gets it". She know everything that is going on around her. You are right, she just needs a little assistance in the how to communicate it. Although I think she does a pretty darn good job of it!! I heard some pretty good sounds coming out of her. We NEED to get together!!

Anna said...

tears in my eyes! How wonderful to see her in action!

Anonymous said...

I love those sounds! Huge,huge step forward since I was with her in April. Thank you for the update, and especially for the video. For sure she is ready for the "next Level" Bring it on!

Love & hugs to everyone

Bluebelle

PS Joe's "weather" package will be on its way shortly..

The VW's said...

I'm so happy to hear that her oncology report came back clear...what a blessing!

Love the video, Love the pictures....Love your adorable Zoey girl! Hugs!

Kristin said...

Have you checked eBay or craigslist for an iPad? just a thought-

Kristin said...

P.S. Our friends are doing a raffle for their RR adoption, to win an iPad -
http://kkcox.blogspot.com/

Anonymous said...

Oh my gosh! What are you feeding this kid?! She is amazing - truly. A few posts back you stated that Zoey's development had plateaued a bit... but from my computer screen, it looks like she's been rather busy quickly building her repertoire of skills : ) What a smart cookie.
Mo

Reagan Leigh said...

She is just too precious! So glad to hear the news about another good doctors appt! She really is a fighter! Zoey is an inspiration to us all!

Scrappy quilter said...

Zoey, you are my kind of girl. I don't like blood being drawn and I have the same attitude when it's done. You go girl. I can't wait to see you continue to progress over the comming month. Thank you Jesus that this precious girl is still in remission. She is just the sweetest little friend I have. Wish I could meet her in person. Hugs

Rochelle said...

YEAH for remission, yeah for you guys and your blanket ministry, and yeah for that cute video. Zoey you are super smart!
She would totally benefit from an I Pad. Grant????

Lacey said...

Heather, you need to stop posting videos, because it makes me crazy that I can't love on that sweet girl! She is indeed one smart cookie!!

Bethany said...

Zoey is a perfect candidate for alternative and augmentative communication devices, especially since she has demonstrated the ability to communicate through adapted sign language. Devices can be adapted to meet an individual's needs including vision issues, and needing more time to activate a button or less refined targeting ability. I am most familiar with simple Go Talk devices and Dynavox, as well as switch adapted computers. Her fascination with electronics will do well for her, as well as her clear understanding of cause and effect!! I wish I knew more about the iPad as a communication device but they came out after I had to stop teaching, and my money tree has yet to produce enough for me to get one to explore.
Celebrating Zoey's continues remission! And your blanket delivery's are such a blessing, I can just see that little doll loving on her new blanket and how much it made her day!

Cammie Heflin said...

She is amazing!!! LOVE HER! Jake and Addy were watching with me and Addy kept signing "again" and Jake kept saying "I miss Zoey mom, can we go back?:(" I think AAC would definitely be very doable for your remarkable girl! She is SOOOO smart! She knows so much, there is a way to get it out!

SECRET PEPPER PERSON: said...

7 plus body parts, "mama" , excellent receptive language and I thought i saw the sign for "please" early on. I'm watching this as an early interventionist and I'm impressed. As a mom I was smiling! She is so precious. I also love "the look" in the photos....laser eye! Don't mess with Zoey!

Scrappy quilter said...

Sent you an e-mail. Hugs

Steelman Girls said...

The girls and I always love watching Zoey videos..She cracks me up..I can only imagine if somebody walked in my house right now and Im sitting in it by myself laughing at the computer..Love the part where she is sitting there thinking...Love her expressions...

Bea Braun said...

Praise God, such good news!!!

Wow that is some serious language happening there! I love the "thinking" look!!! I can't wait to see what she's going to do with some new tools. She is amazing.

Bea Braun said...

Heather I just received an email from the California Speech Language Hearing Association. They are having an AT conference in Costa Mesa on Feb 11 and 12. Here is the website:
http://ati.atec-oc.org

Bethany said...

We have that penguin shirt! So happy to hear her bloodwork is clear... yay!

Melissa M said...

I don't blame Zoey for not wanting her blood drawn. I'm so glad the checkup was clear and that you were able to meet the little sweetie when you made your blanket delivery.

Googsmom said...

I Love Zoey!!! And you, Heather, are an Angel on Earth.
{{{{{HUGS}}}}}}

P.S. My sister and mom work at walmart and they get a discount on everything. If that money tree blooms and you want, i could have them pick up an ipad thingy here and i'll mail it to you. I think it saves like 20-40 bucks. I'd have to ask sister what she paid for my neices.

Peter Olson said...

So adorable!
Thank you for blessing us again and again with the pictures and video. ;-)
Zoey has me smiling ear to ear.
Such a beautiful little girl!

Elizabeth said...

I've forgotten again whether you live in Pasadena or southern California? The reason why I'm asking is because the augmentative communication therapist we see is THE BEST. Her office is in Pasadena. Email me if you get the chance --

And, YES! Zoey is at the perfect age to start accessing communication devices and most school districts are woefully ignorant and understaffed.

Mommy to those Special Ks said...

YAY for continued remission!!!! That's always a breath of relief, I know. How often do you all go to clinic now? We go every 4 months for Kennedy.