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