Dec 24, 2016

Have a Merry Christmas!

Merry Christmas Everyone! 

This year we prioritized shopping and wrapping and our cards have not been sent. Today I hope to squeeze in some quality time with the kids so I've decided not to try to rush them into the mail today. We love you all and wish you the Merriest of Christmas's. 

This year we experienced a true holiday miracle! Although we didn't get our cards out we have nearly all our presents wrapped and under the tree.  This might be the first year in 15 years (since we had kids) that we aren't up until the wee hours of the morning wrapping on Christmas Eve.  Thanks to our new fake tree (above) we also got our decorations out much earlier. The plan worked! The season has been much more enjoyable. Earlier in December Ainsley had a wonderful breakfast with Santa. She told him she loved him with her talker and I do think she stole his heart as his favorite.  More pictures to share after the holiday. May your holiday season be blessed!

Dec 21, 2016

Happy 10th Birthday Ainsley!

October 18th our baby turned 10!

It's been an amazing journey. When she was born I had no idea what we were in for. Things got scary for awhile when she couldn't breathe without support and then had to be trached for failing extubation 3 times. She was in the hospital until Steve and I could get the necessary training and get night nursing care in place. She came home from the hospital right before Christmas in 2006 10 years ago. She needed craniofacial surgery immediately (when she was a week old they took images to plan her first surgery for when she was 3 months old and that is when they found she has Cerebellar Hypoplasia ). The doctors said something to us then that I would hear many times over the years that I really hated: "Ainsley will teach us about herself." Having a child with never seen before set of conditions was both frightening and liberating. We had no road map for our journey but because we didn't know what she would be able to do we just tried our best to assume she would be able to do all kinds of things. Some things I thought she would do she hasn't but we continue to "wait and see".

10 years in it's amazing that she is tube free, on no medications with no surgeries planned for her future! She is learning to read and write. Getting around with a walker, using a talker and generally just a really happy girl who lives a great life filled with lots of love! One really amazing thing is that Ainsley has taught herself how to play the Disney Infinity video game on the Sony Play Station. She LOVES it more than anything else. It is the one thing she will consistently use her talker to ask for. So for a special birthday we planned a special party, just the way we knew Ainsley would love it!

She got new figures to play. 

Immediately she communicated quite clearly that she hoped Evie and Adrian would be playing with her. Something she really loves, but they don't always indulge. 

When you put the figure on the base then you play in the "world" as that figure.

She really does pay attention and it's great for fine motor skills and motor planning.

Remember the big wind storm? Yeah right. That one that didn't quite happen but the weather people had everyone convinced we were going to die for an entire week?  Well the party was postponed a week so we didn't have to worry about being hit by a tree. The day of the big wind storm we had a few small branches impale the lawn but that was it. Everyone was safe and we got an extra week to make Ainsley's party special. A shout of thanks to all our family who attended and brought gifts for our sweet girl. 

Everyone took turns playing Disney Infinity with Ainsley and she was in heaven! 
Her cousins had fun too!


The teen cousins hid away in Adrian's room but even they had a good time. 

I think her favorite gift was $10 in dollar bills. She's been carrying them everywhere along with her huge collection of quarters from the tooth fairy.

Our girl, finally after so many years of feeding struggles and rejected birthday cake,
LOVING her cake!

We love our sweet girl so much, I think she had her best birthday ever!