May 5, 2015

Spring 2015 Part1

Thanks for checking in and not giving up on us. I promise I have been thinking of you. 2015 has been a bit of a blur. I didn't really set any official New Year's resolutions, but unofficially I knew I needed to reprioritize and take care of first things first. You know how it is. We all have some boring stuff on our to-do list that we never seem to get to. The longer those things stay on the list the more those they drive me crazy so I've tried to tackle a few. Then there is just LIFE.

In this episode there is Ainsley: Home Therapy, Appointments: Pulmonary, ENT, Craniofacial, AAC, Walker evaluation, school, nurse transition, & IEP, Ainsley's first birthday party and camp.

Part 2: photography for the school & headshots, winter ballet recital, school talent show, Evie gets glasses, "photoshopping" skills with Wacom, Evie's birthday & room remodel,Valentine's Day, roller skating party, engagement trip, April Fools Day, my birthday, Penny's birthday, Easter, baseball and yard work.

Each week that passes makes a blog post that much more daunting. Since so much has happened I'm going to divide this into Part 1 and Part 2 and try to keep this short on words with lots of pictures. They are our favorite part anyway, right?!

We've used these cans for art supplies for YEEEEARS intending to cover them with paper. (You have to open them using a special can opener so there are no sharp edges.)

Finally I covered them, with vintage French label paper. I love the result! Since the kids use these and leave them all over the house it is so nice to have them finished. 
It's such a little thing but a little thing that makes me happy!

We purged the kids' clothes and made a large donation, making space. I love space!

I finished painting our organizing cupboard that has been ugly since the day I bought it in the 90's. I finally painted it, with magnetic paint and chalkboard paint on the front. It's our new message center where I've posted our family schedule for Ainsley's home therapy. With the holidays and viruses we'd gotten in the bad habit of not doing our "home therapies". The schedule encourages everyone in the family to help rather than me trying to hit all the areas myself. The schedule has to be updated every few months as Adrian's sports schedule changes so I got a new one made and switched things around a bit. Evie and Adrian were getting tired of their work so we got some new educational supplies to help make it more fun. The kids do 25 minutes each for which they receive a token. The tokens can then be cashed in for gift cards to ITunes or Target.  This costs less than actual therapy and is more convenient with E&A's extracurricular activities as well as being an opportunity for them to earn what they want with some work. Steve and I also work with her so on a good day that means nearly 2 hours of extra work (though 1 of the hours is 1/2 PT 1/2 reading). 

The new activities came from Lakeshore Learning and Amazon where Ainsley had some gift cards.

Alphabet matching with sounds. Like P for Pie.

Drawing lessons - a turtle. (Pre-writing skills.)

Counting, number and color recognition.

More counting.

Drawing and shape recognition (circles and lines).

Tracing and letter identification. Yes she did the tracing shown above.

Wednesdays are "family game night". Adrian loves board games (so do I) and it's a great way to spend time together as a family. And yet we are still working with Ainsley.  It's a win, win. Usually she and I play as a team. 

Uncle Wiggly.

Playing Headbanz Ainsley used her AAC device to tell all of us that Daddy's card was a penguin. He was not amused that she gave it away, but she sure was. We had a lot of laughs. 
He gets a little too competitive.

We get off track and don't do what we are supposed to every day, but we do more than we were. The best part is that I am feeling less resentful and more like it's a team effort. It's good.

Ainsley's making progress with her AAC device since switching vocabularies this year (to word based instead of phrase based). 

Earlier in the year we made an entire page so she could do "Show and Tell" about her teddybear.  She was able to tell her classmates all about him and answer their questions. It was awesome! 
The buttons said: 
Today I brought my teddybear for show and tell.
His name is Teddy.
I sleep with him.
He is soft.
He is cute.
He is brown.
My brother and sister bought him for me before I was born, in Whistler BC. 
He stayed with me in my crib at the hospital when I was born.
Sometimes I take him with me to the hospital when I have surgery.
He makes me feel happy.
I love my teddybear.

It was awesome!

Early in the year we had some stress as we anticipated the transition from the nurse that Ainsley had been with for 6 years, to a 1:1 aide (above) now that she's trach free. The school district called an urgent meeting and then there was a lot of waiting and then a very quick transition a few months later with no real warning. We knew it was coming but the way it happened wasn't ideal. There was a period of cross-over but the period wasn't specified and then the nurse was just gone. Luckily Ainsley is an easy going child so she's adjusted okay despite it all. The aide is someone from the school who'd worked in Ainsley's class in prior years, which is great because Ainsley knew her and they like each other. But the aide didn't get to prepare the kids she'd been working with for her exit and we didn't really get to say a proper goodbye to the nurse who cared for Ainsley for so long. Ainsley asks about her using her AAC. I hope we will stay in contact. 

In addition to that Ainsley had her school 3 year reevaluation for special education services. She was found to be highly needy in the .002%. It was sad but also means there is no question about continuing services such as PT, OT and speech or specially designed instruction. After that meeting was her annual IEP. I feel good about the goals in general. I am very happy they are increasing their support of her use of the AAC or SGD (Speech Generating Device) as it's clear that will be how she communicates with the world and will help her immensely to be able to communicate more complex ideas. She's still spending some of each day in the general education class with her 1:1. She's having a great year and loves school, she loves to be around people. 

There's been a bunch of stuff on the medical front. We've had some appointments with the ENT and Pulmonologist to get approval and prepare for surgery to close the trach stoma this summer since it will have been a year. Our surgery date is July 27th. We are hoping they will surgically close her g-tube at the same time. Our appointment to discuss that is tomorrow. 
My girl may be tube free in just a few months!

She's growing like a weed and we are in the process of getting her the walker you see above, a SnugSeat size 3 Crocodile that will grow with her into adulthood.

Last month we had another milestone when Ainsley attended her first birthday party of a classmate. It was at a local bouncy house situated on a steep hill. I called ahead and was told it should be no problem for someone with her disabilities to attend so we RSVP'd yes for the first time.  The building was divided on two floors with no elevator. You'd think they'd realize that's a problem for someone in a walker when I called. Ainsley was so excited that day. Someone parked in the handicapped spot (to load) and after struggling to find parking and get her into her walker and in the building I was told we needed to get downstairs. So after finally getting there we had to load back into the car and then drive around a giant parking lot to the back side of the building to be let in through the back door. poor kid! Then the second half of the party was upstairs so we had to drive repeat the whole process. This resulted in Ainsley getting upstairs last so she sat alone with me at a table during pizza and cake while every other kid was together at another table. My heart broke for her a little, but she didn't seem to care so I brushed it off as we so often have to do to make it through this life. What was awesome was that the birthday girl and several of her other gen ed classmates seemed genuinely happy to see her. I expect this won't be her last birthday party though maybe not at a bouncy house. She couldn't bounce but did love rolling around in this thing. She had a great time! 

The last thing is that we toured Camp Korey to see if Ainsley might be ready for sleep away camp. It's for kids with medical issues and special needs and I was blown away by how beautiful and amazing it is. Ainsley loved it, and didn't want to leave and there weren't even any kids there. For days afterward she was telling the kids and staff at school about it (using her AAC) and asking me about camp.  Today we got word that they think they can serve her needs so it's looking like she'll be going! The best part is that it will be all kids like her, or that at least have been through the type of things she has. Finally a place that she will feel like she belongs. 

When I think about it I have to fight back the tears. Bless the people who setup this organization and the estate who is renting the farm to the Camp. What an amazing gift for kids who've been through so much in their short lives! 

So that's about it for Ainsley's stuff. 

Stay tuned for Part 2, hopefully tomorrow. 

1 comment:

  1. All good stuff! I love how E & A can work with her!! That's just fantastic! I will have to think about Murphy doing that. You are so smart! Love all the updates! Tube free?! Wow! Miss you!!!