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!

Nov 13, 2016

Our Marvelous Family

Pun intended. Evie came up with the crazy idea for our family to do a joint Marvel costume. "Who US?!", I said. "No way!", I said. But as usual she pestered me until I gave in. The Incredible Hulk was the only Marvel character I could get into (I did love the show as a kid.).  But I have to admit in the end it was a lot of fun! (Despite the usual stress because everything is always more difficult than one would think: painting shoes, cutting wigs, ordering impossible to find items, modifying masks, altering costumes.) Somehow we pulled it together the last week while Steve was in California on business. Ainsley is Ant-Man for those who don't recognize her. Steve loved being Thor and Adrian tolerated being Captain America (he loves his sister). We wore the costumes to a Halloween party at the Rogue Brewery (all ages welcome) in Issaquah. Unbelievably we tied for first place in the group costume category which was a huge surprise since we didn't even know there was going to be a contest. We arrived quite late as we often do. I will never forget the look on people's faces as we walked into the party together and their mouths hung open. I heard many times that people couldn't believe it was me. The whole thing was really pretty fun!

Grandpa David with his Grandkids.
Adrian had the most fun of all the 13 year-olds and maybe even anyone else at the whole party. 
NOT! What can I say....he's 13?!

For those not up on comic book fandom, there is a rivalry between Marvel and DC Comics. Superman is DC not Marvel even if it is "Super-Dog" it's not Marvel but it was the cutest costume for a dog and she's still marvelous if you ask me! No she didn't get to go to the party or Trick-or-Treating.

Besides Halloween what have we been up to? A ton has happened since my last blog post 4 months ago, so much that I think I will have to follow up and write separate posts with more details* on some of these topics to avoid another one of my super-long mega-posts.
  • Ainsley went to Camp Korey
  • We went on a 5 State Road Trip to Yellowstone, amazing!*
  • Ainsley's school aide left. We decided to homeschool starting 9/20/16.*
  • My mom (adoptive) fell unexpectedly and got a head injury in late September. My medical experience with Ainsley all these years (17 surgeries and hospitalizations, multiple specialists) helped. I was at her bedside in the hospital for many days until she went into a nursing home (skilled nursing/rehab center) for a week before coming home. We are trying to reduce her care demands for my brother who has advanced Myotonic Muscular Dystrophy. She's doing well and is slowly recovering her strength and energy. 
  • Evie got a part in the school musical, Chicago, and started rehearsals 5 days a week on top of dance and her regular stuff. With Adrian's school carpool changes this year (I pick up 3 days a week at the next town over.) it feels like I'm always in the car!
  • Ainsley turned 10! Wow! I'ts crazy to think about everything we've been through in that time! *
  • Steve and I celebrated our 20 year Wedding Anniversary! Wow again! 
  • Evie had Homecoming (2 of them). 
  • 3 Sick kids, doctor's appointments, late homework. Ugh!
  • Halloween
I'll finish up with more Halloween photos. Yes it's a little late, but that's the way life has been for us lately. I'm hoping you agree better late than never. 

Evie started out her Halloween day at 6:30am as Peter Parker.

Evie was awesome as Spider-Man. You would think it would be an easy costume and it is if you are a child or a man, or want a Sexy-Spider-Girl/Man dress thing, but if you are a young woman who wants to be an authentic Spider-Man you can count driving all over the city(s), ordering an adult hood and gloves. If you are the mom of said young woman you can count on altering every single piece of said costume the day of the party when your daughter cries because her vision fell flat.

Ainsley loved her Ant-Man costume! We had ants living under our patio stones and she would go out to feed them and watch them drag the crumbs into the cracks. She LOVED the idea of being able to shrink to the size of an ant! And the thought of being super strong! It was perfect for her!

She used her walker instead of her wheelchair this year and her talker to Trick-or-Treat and scored lots of candy! She's become such a great eater it's hard to believe there were years where I had to force her to lick a lolli-pop. It was truly joy filled for her this year! Though she came down with a fever that evening. She made it through and still had a great time!

For my readers interested in AAC.

Ainsley wasn't the only one to score big on candy. 
I was happy to see our 3 out together again. At 15,13 and 10 this might be the last time. 

Evie begged me to bake our Alphabet Soup in a Pumpkin from page X of this book when they were little kids. I modified it to be fully vegetarian for Adrian's benefit (it's been 2 1/2 years) and it was surprisingly really good (since the chicken really was the best part). This was the first year I had it ready to eat early. Ironic since I nearly couldn't find a pumpkin because I forgot until the night before to buy pumpkins and the only remaining pumpkins were huge or rotted except this one found at the 3rd store. Oops.

I stayed at the house to pass out candy to our 18 Trick-or-Treaters. I enjoyed the candles, wine and roasted pumpkin seeds while the rest of the family was out. Every year we do a graveyard with lights and spooky music so someone has to be home and I'm fine with it being me.

Evie's Teen Wolf Jack-o-Lantern (and Ainsley's cutie). We cut back on carving this year.

Every year I like to get a picture of my Trick-or-Treaters. It might be silly but it's tradition and we love our traditions. When the kids are young it feels like it will last forever but they grow up so quick. This year we've had a lot of family, family of friends or friends of friends pass away and I was really struck by the fact that change is inevitable and comes when you least expect it so it's wise to make the most of each day as best we can. 

Jul 10, 2016

Summer Learning, Talking and Special Delivery Messages

It's been 2 weeks since my last post.  I've been hitting the letters hard with Ainsley. We have altered her routine. She LOVES to watch videos first thing in the morning (Netflix) so we started using our old DVD's instead. Anything with letters, phonics, word building etc.
  • Leap Frog (Letter Factory, Word Factory, Amazing Alphabet etc. they're all good)
  • Sesame Street  Do the Alphabet, All Star Alphabet
  • Animal ABC's
  • Your Child Can Read
  • Richard Scarry's Best ABC Video Ever
  • Martha Speaks
After a week or so of this she decided she'd rather play with toys than watch her morning videos. A result that is just fine with me. Now she's motivated to stand in her stander for "real" videos.

In addition to reducing and modifying her video time we started:
  • Daily review of the alphabet sounds with flashcards.
  • Interactive electronic book reading (tap words to speak) like Little Critters or Berenstain Bears  from Oceanhouse Media
  • Reading of our own personalized stories that I made with Pictello.
  • Nightly reading of (actual paper) books using modeling with our new AAC system
  • Daily writing practice with writing/tracing or phonics worksheets (workbooks)
  • alphabet activities like: this, thisthis, this or this
  • playing old Computer Games on my sister's old laptop (Pooh, Clifford, Richard Scarry, Franklin, Madeline, Little Bear etc.), she's got great mouse skills
  • IPad games like: 
For awhile that was great but now she's back to sneaking her favored games like Cut the Rope or Clumsy Ninja. I have to watch her closely and not get distracted which is easy for me to do. I'm probably going to have to look for some new materials to keep things fresh.

I think the work is paying off. She appears engaged and interested most times I work with her. 

We've seen some super exciting attempts with the AAC at long sentences after modeling them that way. She may not use the correct verb and word order but they are LONG, like the 10 word sentence below that SHE MADE BY HERSELF (The word I was there but it was too long to fit!) after talking with Steve, while I was finishing cooking dinner.

Earlier in the week during meal time she used the following phrases and her message was pretty clear! There is no question that she understands exactly the purpose of these phrases.

Today she got out her AAC device and brought up the word Disney Infinity and tried to copy it onto a piece of paper (D, then Infnty it's hard to read because it was written on some dried glue from a previous "project") which she then brought to Steve out in the garage to lure him into playing with her.  Of course we had to reward her with some DI time for her efforts! She was so proud and so were we! This looks like the beginning of writing at a new level!

A video showing one of the personalized book I made with Pictello (DisneyWorld 2015). 

We haven't had as much fun as we could but we did manage to get the kids to see Finding Dory and that was on Adrian's summer to-do list.  Evie and Adrian are off to camp today. Adrian was picked up by a friend and will be at Camp Colman for a week, returning just in time for his 13th birthday!

We made the road trip today to take Evie to camp. Sadly Evie's childhood friend chose ballet camp over horse camp this year but Evie still wanted to go. I'm proud of her for taking a chance and going anyway I hope she has a great time! Ainsley did awesome navigating the gravel trail in her walker!

Steve and I are very a bit jealous of these kids and their wonderful annual camp experiences! They've been going since they were SEVEN. 

It feels weird to have them gone but of course we still have Ainsley here. She goes to Camp Korey in 2 weeks. She is so excited! She had SO much fun last year! If you click on the link above you will see a picture of her riding on a horse on their website. 

I'll leave you with some recent photos of the kids that I took on the 4th of July. Hope you're having a great summer! Hopefully we'll get some sun soon here in the Pacific Northwest.