Happy New Year!

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!

Merry Christmas All!

We went to Macy's last night for Santa photos. I would have skipped it this year but we've done it every year since Evie was born, including with Ainsley the year she came home from the hospital on the 22nd of December. If I could do it that year, and the year it snowed, I could do it this year.

While we were there Steve found this Christmas ornament for my collection.  I've been collecting them since I was a girl (okay, teenager but I'm old enough now that I consider teenagers girls) and try to add one to the collection every year. See....Once upon a time I really loved Christmas. As the years go by I have less energy for all the hoopla. Especially this year with Ainsley's eyelid surgery and it's underwhelming results. So here it is, the "perfect ornament for 2010". I know some of you are going to want your own.....

Thanks honey, I love you! After 18 years together you know me too well. Coming home with this ornament actually cheered me up a bit because I am funny like that. I will look back on it with fondness some day like the ornament from when Evie was obsessed with Madeline, or the vintage tin Mickey for the year we went to Disneyland.

Macy's now has the "Santa Land" in a location at street level but there isn't an obvious ramp and there are stairs, not making it wheelchair friendly (though we are still using a stroller and waiting for her new wheelchair to arrive). Never mind the disabled,  because we all know they are seldom truly considered but HELLLO?! what about the customers.... lots of parents with small children in strollers?! Anyway, Steve had to carried the stroller down the stairs. So naturally when I spied the manager I went to quietly complain about the lack of accessibility. He informed me there is apparently a back entrance if you can find it.  He did however rush us to the front of the line because of Ainsley. I wasn't expecting that but really won't complain about not having to wait an hour in line since it did give me an hour to get some gifts. Happy as I was to be rushed to the front of the line it was almost over so fast that it took some of the fun out of visiting Santa. Still I was happy not to endure an hour of kids and adults staring at Ainsley as we worked our way through the line and all the emotions that come with that and trying to show a bunch of strangers that we are a normal family. 

Unfortunately she was was TERRIFIED of Santa even though we showed her the Santa pictures from prior years before we left. I thought it would help prepare her....NOPE. I thought she was big enough to sit in Santa's lap by herself this year and that way I didn't have to be in the photo for the first time in years! Well that didn't go so well. She especially didn't want to sit on his lap, but like the good girl that she is, she did.  We were able to calm her down so they could get this lovely photo in which there is not even a hint of a smile to be found.

After the photo each of the kids took turns telling him what they wanted. The Pokemon Wii game for Adrian. The Amercian Girl doll Felicity for Evie. When it was Ainsley's turn I had to choke back tears as I spoke on her behalf and said simply, "She's been through a lot this year.  Please bring her a special surprise."  If I'd said more I think I would have dissolved into a blubbering mess. Even though I didn't explain that "a lot" was actually: a brow surgery in January, adenoidectomy and granuloma removal in February, hip reconstruction in April, spica cast and brace until July, eyelid reconstruction and hip plate removal in December, and lots of testing in between; he seemed to understand without me actually having to say it. Santa was so kind and said he would bring a very special toy for a very special girl. Since she can't tell us what she wants my hope is that Santa guesses right.

They now shoot digital and print the pictures while you wait. This is great for procrastinators like us who usually didn't see the photos until after Christmas. The instant gratification is nice but Ainsley didn't seem impressed nor did it seem make up for having to sit in that scary Santa's lap.

On the way out the door we caught a glimpse of the reindeer.

And these sugary temptations. An entire YARD of giant gumdrops. Lordy!

 The train set in the window that turns on when you press your icy cold mits to the window to power the trains.

The kids really love it. They like to look for all the cute figures.

Like the abominable snowman there. See him?!

 Ahhh. I do it for them, even when I really don't want to leave the house. 

 Aren't they adorable?!

After 10 years of trips to downtown Seattle this may be the last. The Believe Meter is losing power.  Evie and Adrian are old enough that they know this Santa isn't the real Santa. (Sniff.) And Ainsley, well she just doesn't really care about such things. In light of the fact that we may be moving soon it's time to start some new traditions.

Getting them all dressed up was a good excuse to torture them with the camera. I was pleased with this shot.

Yay, we're done!

And since 2010 is the year of "Bah Humbug" this post will have to serve as our Christmas card since we didn't send them this year. I hope you understand.

Thank you all my loyal readers, may you have a Very Merry Christmas!

2 Weeks Post Surgery Pics

I've been having a hard time. I'm tired. Just lacking energy. And motivation. I barely managed to get these photos to mark the changes at this 2 week post surgery point. Sorry the lighting's no good but I just didn't have the energy to go get my flash and load it with new batteries.

She's trying to squirt me with a syringe while we sat on the couch after doing her warm eye compress and a water bolus. Ha, ha funny girl!

This is about how her eyes are looking relaxed. She can lift the lids more using her forehead muscles.

Like here. Okay that's not a huge difference.

But ideally what we (I) were hoping to get to was something more like this...

Or I guess I should say I had hoped that maybe her eyes would some day look the way they did when she was born. In this photo she is not using her brow to lift the lids. This shows the degree of ptosis and slant she was born with. I had prepared myself that the results might not restore her original appearance, but I hoped. At one time I had been told by the ophthalmologist that with a frontalis sling her eyes would look totally normal. I wanted the droopiness fixed and looked forward to her having normal looking eyes. I laugh.  Now I would love for her to look exactly like she did. Ironic isn't it?

Everything changed the day she had her second cranial reconstruction the day after than picture was taken. I wish I could understand what went wrong. Even the surgeons can only speculate. I've given it much more thought than they and I now believe it is probably just a matter of bones being replaced in slightly different positions around the eye. Probably because they moved her brow and put bone behind the eye to imitate the absent part of her sphenoid wing. Ultimately it doesn't matter because what's done is done and here we are. There is no going back.  

To recap what I've posted in the past, the surgeon removed part of the sup tarsus and transplanted it to the lower tarsus. He shortened the levator (that lifts the eyelid) and brought up the lower lids with a canthopexy. The surprise was that he also removed 4-5mm of length from her eyes by cutting away some of her lids. Looking at her baby pictures I just don't see that her eyelids were too long and needed shortening. It was never discussed at our visits and I'm having a hard time with it. I am very concerned that with a smaller opening her eyes are going to look smaller, which is kind of the opposite of what we were trying to achieve.

Steve still thinks there is a fair degree of swelling and that things will improve. I think they may improve some but feel the changes will be minimal, and personally, am pretty sure that the surgery didn't do as much as we'd have liked. This is one situation when I would love to be proved wrong. Prove me wrong God (if you're up there), prove me wrong.  While I love her beautiful smile I would also like to be able to see her eyes when she smiles. I didn't think that was too much for a mother to hope for.

Tree Trimming 2010

For some reason I still have the My Girl song stuck in my head, and I'm still concerned about the result of Ainsley's eyelid surgery but I am trying to be patient even though I suspect the results are going to be disappointing. It's hard to focus on Christmas when I've got much bigger issues on my mind but we did manage to get a tree last weekend, and get it decorated. I have to say it was more exhausting than fun but you wouldn't know it by the pictures. I'm going pull out the fragile and heirloom ornaments and let the kids go at it next year. Maybe I'll sit on the couch sipping a cocktail. Kidding. Or not.

We put Ainsley in her walker so she could walk around the lot with us this year but we picked a tree really fast. She was so happy to be up and about she didn't want to get back in the car. It was neat that she could be out there, though it was raining a bit. 

Ainsley just LOVES Adrian. He's such a good brother! They had so much fun with this Folkmanis puppet, 3 mice wrapped in a present. All the kids love that thing. I think it's their favorite decoration, and just so you know you can still buy them in stores.  

This is a rocker that was mine when I was a girl. I have fond memories of rocking in it and singing along to a Glen Campbell record. Yep, I'm that old.

Miss Ainsley has started taking a few side steps while holding on, or aka cruising. It appears that she is feeling much better after getting those plates out of her legs. She's decided to start transferring herself in and out of chairs. Pretty cool stuff. I know her nurse, Carmela, has worked on that with her a bit, so I guess that gave her the idea. But she moved the rocker over to the couch so she could use the couch to get in. Pretty resourceful and clever I'd say.

She worked hard to get her feet into place and then slowwwly lowered herself down.

Relieved when her bottom hit the chair and not the floor.

She's so proud of herself and so are we. Then she did it over and over again. Mind you this is completely by herself. No help.

Evie did trim the tree but was more interested in performing the Nutcracker wearing the same slip she has danced in since she was 3. Ainsley had a blast pulling ornaments out of the boxes and hanging them on the tree. (Mostly the ones that required no hooks.) 

Then she got herself into the rocker again, this time next to the tree, so she could sit and admire it. She's now even rocking herself in it.

And from there she would squeeze the hand of the Santa from Polar Express, making it say "The magic of Christmas lies in your heart." I can't help but remember how long and hard we worked for her to gain the skill of being able to simply push a button. She did it over and over. I think Christmas is going to be quite magical for her this year.

Evie and Adrian had to go to bed but Ainsley stayed up with us since she needed her final tube feeding. But.... she was tired and boy were we shocked to see this.....

SHE did this. She's been climbing up and down from the couch too! By herself! And so...she got up on the couch, stacked all 3 pillows in place plus the fleece hoodie (I guess for extra softness?) and layed down with the stuffed gingerbread cookie to relax.  We couldn't get over it.

And the finished result. 

Now for the past couple days Ainsley keeps randomly pointing at the tree as if to say "_______?"

a) Look mommy isn't it beautiful?!

b) That was fun can we do it again?

c) Why is there a tree covered in junk in the living room? Why, mommy, why?

My Girl, My Girl, My Girl Talkin' Bout My Girl

I've got sunshine on a cloudy day....

Baa Da Ba-Da Ba-Daaa.

I love that she can be like this after everything she's been through. Just one week after having her eyelids cut apart, and massive plates removed from 3" incisions on each leg. No pain meds. Acting just like nothing happened.

Speaking of the plate removal....her legs are both swollen. She looks hippy for the first time in her life. The left side is oozing so we had ortho take a look today. They put steri-strips on an area that is coming apart. I still vote for nylon sutures. This is why. And look at all the blood and goop that is stuck underneath that dermabond. Ick. I can't believe that's not an infection risk.

 

We went in today for a VSS (Video-fluoroscopic Swallow Study) because I want to work toward getting Ainsley eating orally. She's been getting tastes since she was about 6 months old. I pushed, I've backed off. And we have made little progress. Though she has been showing more and more interest in food. In October I started feeding her orally before every feeding and she's averaging 12-16 spoonfuls. One day even taking 25 bites. But she fatigues. You can tell and she starts to refuse the spoon and ask for the tube.

Today's VSS results were what I expected, essentially no change. Other than that she is able to handle more bites than in the past. But she is still at risk for aspiration due to delayed timing of the swallow in the laryngeal phase. So we'll continue to follow her cues feeding her purees and thicken her liquids, watching for signs of aspiration. My hope is that things improve when the trach comes out.

Ainsley has been through a LOT in 4 years and has a fear of medical equipment. But today I was able to reason with her that the big thing on the arm that they squeezed in next to her was just a "camera". "They're going to take pictures Ainsley. Smile for the camera."  Then she was fine. It's so awesome to be able to reason with her and know she understands.

She had a fantastic time putting princess stickers on her shirt while we waited for the next x-ray, a shot of the soft tissue of her airway and soft palate. I do want to ask why the techs can never get the x-ray right the first time. Double the radiation exposure. Grrr. Anyway, we are hoping it may reveal what may be going on with the sleep apnea. Our follow-up with Dr. I is on 12/28 and we'll review the results with him them when he sees Ainsley to see if the Prevacid has helped reduce any swelling of her vocal cords. 6-8 weeks flies when you're having fun. Kidding. 

The swelling of Ainsley's eyes is MUCH better but still has a way to go. The jury is still out on what the final result will be to her appearance. I am still fighting daily against the urge to judge it, particularly when I'm cleaning her eyes. I know that even if the results aren't what I hope for that she will be okay. Like the title of Ainsley's blog, Happy To Be Me, that she is and I know she will always be. And I will hold onto that.