Tuesday, 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 party anyway, right?!

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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. 

Monday, February 2, 2015

Ainsley's Hammock Swing

Recently a fellow blogger was writing about how her daughter could benefit from more vestibular stimulation.When a child's ability to create their own vestibular stimulation is limited we have to look to other ways for them to get that. This is important for kids with Cerebellar Hypoplasia and is the primary reason that we installed a hammock swing in our TV room back in 2012, since in rainy Seattle it isn't always enjoyable to use the one we have outside. Putting a swing inside our house was one of the best things we've done. In addition to swinging Ainsley very quickly started putting her arms over the hammock so that she could spin herself in circles. Any busy special needs mom knows that the best "therapies" are fun and if the child can do it without assistance then that is even better!



Here is a link to where you can purchase the SouthPaw rotational device. The carabiners I got at REI.  Here is a link to where you can purchase the same handmade hammock swing we have, from HangLoose Hammocks. Or here is a swing chair that could be used for a child that needs more enclosure, or this one for a child that needs even more support. There are no doubt countless options to suit your needs if you look around. The bonus for us is that it solved a seating issue in our TV room. The big kids sometimes fight over who gets to sit there. Every kid who comes to visit loves it too.


It's fun, it's a place for anyone to sit, it's therapeutic, it's awesome!

Thursday, January 22, 2015

6 Months Trach Free!

Wow! It's been 6 months since Ainsley got her trach out on 7/21/14.

Intubated at birth....

....until the disappointing day we learned she wouldn't escape the trach.

After it was done she seemed happier. I think that's nearly a smile. 
She went on to live a good life because of and in spite of her trach.
It wasn't easy.
In fact it was damn hard!
But we did it! 
And we are stronger for it!
And we met lots of amazing people because of it and in our quest to get rid of it. 
We have told our story and that has helped others going through similar things.

Now that the trach is out things still aren't easy.
But they are getting better
Ainsley's stopped removing the CPAP mask at night. 
I guess she knows she needs it. 
I think she's eating better now that the trach's gone and we are hoping to remove the g-tube! 
We are in the process of scheduling stoma closure surgery for the summer. 
Her airway still isn't perfect. 
She still can't cry and breathe. There is no sound.
Perhaps one day, with growth...she will breathe easier. 

When they trached Ainsley they didn't understand what the problem was exactly. 
I think it's pretty amazing that they never really figured it out (other than the swelling that wasn't there on day one but developed over the weeks and was obvious but long term temporary until her fundoplication). 
It didn't resolve as quickly as they initially thought it would. 
She never had surgery because there was nothing to "fix" and yet clearly something was wrong. 
Taking the trach out was a huge leap of faith.
When I ask her, she says she wants the trach back. :( But sometimes she says she prefers "no trach".
She's funny like that. Non-verbal kids are tough.
If I had to guess I think she prefers having no trach during the day, until it's time to go to bed and wear the CPAP. Then she wishes the trach back. But that's pretty difficult to communicate with an AAC device.
Now that we've made it past the 6 month mark and part of cold and flu season I am actually thinking
this decannulation might really be "for real". 

Here she is today. 
Still happy. Either way. Trach or not.
Love this girl!

Wednesday, December 31, 2014

December 2014 Wrap Up

Sorry for the long absence from blogging. I want to catch you up with our December and wish you a wonderful 2015!

In November (and a bit in December) I spent many many hours tweaking Ainsley's AAC vocabulary to get her a vocabulary that will last as she moves into the next level of AAC use. Also, in early December I spent a lot of time helping the kids with various things for school. Adrian had a big science project that he needed help with (an animal cell model). The big kids had a school dance recital. This was part of their physical education curriculum for which they would be graded. They each spent a lot of time choreographing a dance to a song of their choice that they performed for the school and parents, which required meeting up with their dance partners. Adrian needed matching costumes for his group but forgot to tell me until 2 days before they were due. Evie'd neglected to tell me her pointe' shoes were so small that they were falling off. So the night before we crossed the bridge just to come home empty handed since they didn't have the ideal size (Pointe shoes are complex: length, width, vamp, shank, box shape). The next morning after having visions of her shoe coming off mid solo performance I headed back over the bridge to buy the next best size and sew on all the ribbons and elastics, all without Evie present (which she should have been but was at school), before rushing off to the event to be the official photographer.   I attended school with Ainsley a few days when her nurse couldn't be there. These are the reasons I'm glad I'm a SAHM. My mom was always too busy working for that kind of stuff when I was a kid. I may not be a perfect mom but I hope my kids will remember someday how much I gave of myself to help them, when I could.



 Adrian's dance number. (In front and on the right.) 

Evie's on the left.  

I was so very proud of both my dancers. But all the years of driving Evie to dance class since she was 3... during many years of when it was quite difficult to do so (when Ainsley was young)....well it finally felt worth it, and I was so very proud to see her perform her solo pointe' piece. 


We used Ainsley's AAC to order A SCHOOL LUNCH for the first time the day before break.
It was AWESOME!!!
We transitioned her last tube feeding away during winter break 2013 so it is now official, she's been an 
ORAL EATER FOR ONE FULL YEAR!!!

*****

We made it to the tree farm a bit earlier this year (which was nice). 



Selfies among the trees.



Our new tradition, which I LOVE! - An appetizer dinner while trimming the tree. 
With cocktails.
We're going to do this one every year!



Poor Penny. Adrian made her help put an ornament on the tree. She's so tolerant!

Our elf mostly moved around from place to place this year, not making too much mischief.



That is, until this. Adrian said to Steve "Oh, boy mom's going to be mad! Pip Squeak made a big mess!"
I pretended to be really pissed about it. But the coconut snowball cookies were worth it. And I hear everyone's elf gets into mischief sometimes.

The kids got mini trees for their rooms this year and before reporting back to the North Pole Pip Squeak put chocolate presents and a small present box to put under them.

******

Steve had 2 weeks off. We made it to the mall for Santa photos(We haven't missed a year yet.) and the kids picked out a tub of Legos (as one of their presents), at the Lego store.


I forgot to say that Santa loved Ainsley so much he didn't charge us for the photo. 
How sweet is that?!

Ainsley's selfie (she keeps stealing my phone). I thought it was sweet.

Probably Adrian's favorite gift...An awesome art set from Grandpa Todd (who's an artist). You can see part of one of his painting peeking up behind the couch on the wall behind.

Putting out cookies for Santa.

I tried a crock-pot breakfast this year. It was great waking up to breakfast already made.
 Vegetarian sausage on one part for Adrian.


I love that Ainsley still loves Hot Wheels.



Perhaps Ainsley's favorite gift, a stable set.

Ahhhh!

Evie's (p)leather jacket. I made her wait to open it so she was extra excited.
She also got a loop pedal (a music thing).

Her favorite gift might have been the phone stand and shutter release for taking selfies.

Ainsley's been super into video games lately but her skills make that tough. We were able to find some old games that she can do. This one made me tear up a little. She was so happy. At recess she can't play tether ball and I could tell she wanted to, but now she can at home. It made me so happy to see her so happy!

Again...it's been a YEAR since Ainsley's been eating fully orally. It was so great to see her be able to eat all the same foods as everyone else at dinner. We're coming up on 6 months trach free. As you can see her stoma is pretty sunken. Things aren't perfect but she is still doing well. 

David played chef. Making a fabulous prime rib dinner!

They do such a beautiful job! I was so thankful not to be hosting this year. 


We had music again. It was so fun!

Evie performed a few pieces, including a couple of songs she wrote herself. We were so proud of her!



You know you're in a British home when the host breaks out the pickled eggs at the end of the night.   

Hope you all have a wonderful New Year's and that 2015 brings you joy, health and happiness. 

XOXOXO
Susan