We finished off 2010 with a really special night after a day of working on finishing the basement bedroom to get the house sellable. We made last minute New Year's Eve plans to go to the
Harry Potter Exhibition at the Seattle Center. We've been wanting to go for months but life's been too busy with Steve's work schedule, the house and then Ainsley's surgery. Of course Evie and Adrian have been huge HP fans for years. Evie started reading the book series when she was 7 (now that seems crazy young), finished all 7 books within months and has since re-read most of them. Then there was the over the top
Harry Potter Birthday Party we threw on her 8th birthday and the year we dressed as Harry Potter characters for Halloween. So, as you can imagine, we were very excited about this. For true fans it doesn't disappoint. It's very cool to see so much actual stuff used in the movie. I loved seeing the quality of the costumes and props up close.
Typically we spend New Year's Eve at home watching the fireworks with the kids from our bedroom window with a glass of champagne. So this was just a bit more fun.
We went to dinner at The Old Spaghetti Factory before the show. It's been ages since we ate out as a family and it is one of our favorite places.
Since no photos were allowed inside the exhibition I had to settle for this photo outside. Actually, that freed me up to just enjoy it with the kids and that was really nice.
Afterward in the gift shop Adrian finally got the Harry Potter wand he was supposed to get for his birthday (from grandma) in July.
And I did have to show you this. It was quite a shock. Honestly, I guess I'm a bit of a prude, I know it's the science center but geeeez. And there were more potty facts about the digestive system with giant illustrations. It's was the grossest weirdest trip to the bathroom in my life.
We had late night hot dogs in the Seattle Center food court and looked at the train village among the enormous crowd. It was a cold night and everyone wanted to be inside so you could barely move. The Starbuck's line was about 70 people deep. We played some arcade games, and the kids won some prizes. They didn't want to go on the rides. Can you believe that?!
They had cotton candy while we waited for the fireworks.
I never thought we'd brave the crowds but since Harry Potter brought us there, we kept the kids up until midnight for the countdown and watched the fireworks from under the Space Needle. It sure beats watching them over the rooftops from our bedroom and on TV. It was very exciting to be a part of the crowd! It's not quite Time Square but it's as close as you get on this side of the country. We had a great time! A perfect finish to the year!
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2010 Recap
January: Ainsley had Brow Surgery to Prepare for Eyelid Surgery, met Ainsley's new teacher (late hire)
February: Ainsley had Partial Adenoidectomy and Granuloma Removal (This is also the month I started a scrapbooking business before I realized what a crazy busy year it would be. Ha!)
March: Ainsley had airway scope, some degree of swelling still there capping slightly better after granuloma removal; received first AFOs; cognitive testing, started allergy meds and nasal steroids (they didn't do much)
April: hip/pelvic and leg osteotomy surgery followed by spica cast, starts getting into more trouble (and knows it), she goes back to school in wheelchair, gets stronger stomach from lifting up in cast
May: spica cast removal followed by use of a hip brace; neurological evaluation, meeting to discuss getting a more advanced AAC device, does well during the daytime without trach for short period
June: received Vantage communication device the week school got out spent following weeks programming it for use and getting Ainsley familiar with it, review with DDD office for waiver program, second meeting with eyelid surgeon
July: lost the hip brace!, returned the wheelchair, started short term speech therapy with specialist and saw a huge increase in her efforts to be verbal, started weekly rehab physical therapy, she starts regularly helping make her food
August: started "walking" again, consulted with second eye (occuloplastic) surgeon including Skype conference, work on drinking teaching drinking from a straw, found she could be without the trach for a long period during the day (but it's difficult to reinsert trach), confirmed Ainsley has obstructive sleep apnea with cap on or without the trach
September: research and shopped for a wheelchair (the perfect one doesn't exist), started trialing CPAP, met with eye surgeon for 3rd time to finalize decision, worked on sense of smell (which has improved) using scent game
October: IEP meeting, Ainsley learns to hang in her walker, she attempts running in it for the first time (using gravity), started more aggressive feeding plan
November: got the great news that our insurance no longer has a lifetime maximum benefit, started training new nurse (who since quit)
December: eyelid surgery, leg plate removal, swallow study, outside AAC evaluation, ENT follow-up
It was a big year wasn't it? Looking back at it I can really see how much was going on and why it was difficult, and yet this list doesn't include the many things that were not specifically related to Ainsley. Her needs dominated the year which was already busy but somehow we made it through. Looking forward, I'm hoping for an easier 2011.
Looking back......
At times it is very difficult to have a 4 year old child who cannot stand, walk, eat or talk and is still in diapers but I try to focus on the progress she makes and not the many things that a child her age can usually do. To some people these inchstones may seem trivial but for Ainsley none of them come easily and so we celebrate each as a major achievment.
In 2010 these are the changes we've observed:
- she learned to plug/cover her ears when she doesn't want to listen
- learned to kiss (kind of) and hug
- she can stand on tip-toe
- she crawls up onto and off of the couch
- learned to squeeze a squirt toy
- learned to drag toys around the house including the bath tub toys which are kind of heavy
- she can now push buttons (great for AAC use)
- she can squeeze a button
- she can stand with minimal assistance at the hips and feels safe enough to let go
- she got pretty good at throwing a ball
- she really started to love her dolls and wants to take them everywhere
- can cruise a few steps
- she will pull herself up to a stand
- her clap has really started to improve
- she has successfully sat on the potty (though true potty training is a ways off)
- her point started to improve and is now very specific so you can actually tell what she wants
- her head shakes are good enough that you can really get her to answer yes/no questions
- she's started to cross her arms to show disapproval
- she's started to communicate more with signs (help, open, water, DVD) etc. to get her needs met
- she will raise her hand when she wants a turn (very cute at the dinner table)
- we discovered she loves Wii drumming
- she proved that even with a trach she loves to "swim" in the water
- she's progressed in eating purees now taking up to 25 bites at a time and now even request it
- she can drink from a sippy cup
- she's gotten more adventurous in what she's willing to touch like stickers and pumpkin goop
- she's more willing to bring food to her lips, even foods that are highly textured
- she has regained a lot of strength after recovering from her hip surgery
- she can walk in her walker quite well and even use it without the sling for a few feet under the right circumstances
- she can now crawl up and down stairs almost independently
- in the right circumstances she can transfer in and out of a chair
- she can stand against a table to play
- she is wearing her cap for a lot of the day and could manage without it while awake (a far cry from the days when she'd turn blue in 3 seconds)
- she made a lot of progress with vocalizing, losing her growly voice
- she now tries to imitate some words like mama (my favorite) off and up
- she learned a bunch of new signs, now about 25 different words
- her attention span is great and she has started to play simple games and listen to more complex stories
- she can recognize many animals and a few letters numbers and colors
I'm looking forward to seeing what Ainsley will do and learn in 2011.
I wish you all health, peace and happiness in the coming year!
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