Ainsley Rae

Happiness Week 3

2012-01-23T17:10:00.000-08:00

Sheesh. I can't believe we are 3 weeks into January and I haven't posted a single blog post except my Happiness Photo Project posts. At least you'll still get an idea of what we've been up to. Mostly we've been buried in snow (but the kids went back to school today). I'm still dizzy so the combination has been a bit tiresome. I'm looking forward to getting back to life as usual.

What Made Me Happy - Week 3

01/16 Ice Cream Sundaes for Dinner

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Yep...for dinner! Vanilla ice cream, Fisher toffee covered peanuts, banana slices, chocolate chips, caramel sauce, dark chocolate sauce and a cherry on top!

01/17 Ainsley's Hammock

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Today Steve installed the hammock I bought Ainsley's birthday at the Salmon Days festival in October. The lady who makes them said that her customers have said 20 minutes in it is like a 2 hour massage for a person with muscular dystrophy. Ainsley doesn't have MD but can still benefit from pressure to her muscles and the vestibular stimulation. I had intended to hang it outside (under cover) but Steve was too busy at work in Oct/Nov to hang it. When the weather got cold I realized that it would be far better to have a swing inside the house. The lovely lady from Hang Loose Hammocks was kind enough to exchange the green one I bought for a natural colored one so it would blend in better with the decor in our TV room. It's nice in there because we were getting a little crowded on the single couch (the room doesn't have space for more seating). Now the kids are fighting over who gets to use the hammock AND we are all more comfortable. They LOVE it! It's great to see Ainsley using and loving her gift. And it's good for her!

01/18 A Towel Bar At Last

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The kids pulled the towel bar off the wall of the bathroom shortly after we moved in. We had a hole in the wall for months. Then a patched wall but no towel bar for another few months. Having no place to hang towels was really getting olllllllld! Hooray! Seriously this makes me very happy!

01/19 Icicles

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We've been buried in snow. Finally it is melting a bit and today we have hundreds of amazing icicles around the house. We had fun playing with them. Did you know granite melts stuff quick? Bet you didn't know that it can turn an icicle into a blade in about a minute: Place an icicle on the counter top, watch it melt and turn flat before your eyes, flip it over to melt the other side. Kind of cool!

01/20 Happy Kids on a Snow Day

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I was very happy to have happy kids today. A few days in the snow is good, but eventually my kids were done...but still stuck inside. Finally they've worked through the boredom. Evie decided to use Polly Pockets to make Flower Fairies, crafted out of tissue and colored pencils. She's amazing! Adrian opened his Balloon Animal Kit (a Christmas gift from Evie) and made a balloon poodle. Steve ventured out in the snow because we were low on food and came back with the Clone Wars DVDs. Adrian was very happy! Ainsley is always happy. In the end I could only pick one picture so fairies it is.

01/21 Totoro

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I'd been wanting to watch My Neighbor Totoro with the kids for days but get missing my opportunity. Finally, I did. If you haven't seen this movie, DO! I love Miyazaki. I just put about 5 of his films on hold at the library and that makes me happy too! That'll be fun little surprises when they become available (they are popular).

01/22 A Clutter Free Desk

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I was lucky to have a beautiful built in desk in my kitchen at the old house. It's one of the things I miss about that house. Our new house had a much smaller "office" in the TV Room. The computer was squeezed in underneath where your legs go so I'd bump my knee all the time and the kids would accidentally turn it off by putting their feet on it. We lost power today, happily only for an hour or so. I unplugged things and when the power came back I ~~made~~ asked Steve to take out the drawers so the computer can go into the cabinet. I hung some art, cleaned the keyboard, tossed the old orchid reorganized and I'm VERY HAPPY to have a clutter free space to work. It's been on the to-do list since April. I like getting things done. It makes me happy. Now I just need to print a few pictures for my cork board and so I can really enjoy the space.

Have a great week! To view a slideshow of the entire Happiness Photo Project click here.

Happiness Week 2

2012-01-16T15:15:00.000-08:00

I won't talk too much about my Happiness Project , I promise (this blog is still for Ainsley and I will do regular blog posts), but I thought some of you might be curious to know more about what this is that I'm doing. As I already explained I will focus on a different area each month. My area of focus for January is Health, I thought that was a great place to start. It is hard to be happy if you aren't healthy, especially those of us who were born with near perfect health. It's so easy to take for granted. Boy am I finding that out the hard way, with a virus in my inner-ear that is causing me to feel dizzy and awful, like I'm drunk 24/7. Though that might sound fun to some of you, it ISN'T. It might be more accurate to say it feels like having a bad hangover. Plus feeling dizzy and off balance doesn't make it easy to anything physical, especially exercise. You hear exercise is key to having energy, which I could use more of. I'm not an athletic person nor do I want to be but the idea of yoga appeals to me. It is good for the body, gives you energy and does positive things for the spirit. So my plan was to start doing yoga this month. Finally I thought I felt well enough to try, and after an hour of doing that while dizzy I'm not so sure it's really good for my health right now. I can't afford to injure myself. Even simple things like preparing nutritious food is difficult. I have to put off getting new glasses, a dental and doctor appointment until I can drive. I am able to remind myself to breathe(simple but highly important), think about my posture and take my vitamins, but I was hoping for bigger changes. So I'm hoping for an amazing turn around these last few weeks of January so I can get on track focusing on Health and get back to normal life and make up for these first couple weeks.

Despite feeling ~~like crap~~ poorly I have found that my Happiness Project and Happiness Photo Project has been making me feel happier, because I am thinking about all the things in my life that bring happiness. It's a subtle mindset shift. It's nice to go to bed thinking of all the good in the day instead of just how exhausted I am. So here is Week 2, I hope you enjoy!

What Made Me Happy - Week 2

01/09 Not Losing My Thousands of Photos

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Monday was my first Happiness Photo Project blog post and I encountered some technical difficulties in my photo editing software. They still aren't 100% resolved. Something is amiss. But at one point I thought my THOUSANDS of photos were corrupt, gone or something terrible. I've had friends lose their photos and it's not something I think I would tolerate very well. When I confirmed they were safe I was VERY HAPPY!

01/10 My New Lynx Fur (Fake) Vest

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It's SO SO soft! Almost like real fur but better because it isn't. It's hard not to feel happy when you are surrounded by cuddly soft fur.

01/11 Non-Marking Shoes

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Adrian started basketball season today. We were a little short on notice because the coach didn't realize he was the coach until two days ago. I was SO happy when it turned out that one of Adrian's 2 pairs of shoes (remind me to take the kids shoe shopping) are non-marking so I didn't have to scramble to buy basketball shoes for practice.

01/12 A Fun OT/PT Activity

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Steve built this great marble run for Ainsley. It's great because it gets her in high-kneel for long periods. The fact that she is kneeling gives her stability, but allows her to practice balancing without support which is a precursor to standing and walking. In addition she is using her pincer grasp. Look at her tongue stuck out in concentration. It's a challenging activity but FUN for her and she can do it by herself. Hooray!

01/13 My Husband Packing Up the Christmas Stuff

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Why does this make me happy? Because I'm not doing it! Love you honey!

01/14 A Snow Day For the Kids

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There is nothing funner for kids than playing in the snow! They were so excited today when it started to snow that they ran outside in their pajamas. For Adrian that means shorts. How fantastic is that?! Our weather is somewhat mild here in the Pacific Northwest. Some years we don't get snow. They were worried it might stop, so they ran out to feel it fall on their faces and catch snowflakes in their mouths. Then they got dressed in appropriate snow clothes (thanks Grandma!) and spent most of the day and some of the night outside building their first full sized snowman. Our yard at the other house was too small but the yard at our new house looks like a winter wonderland when it's covered in snow. I think it might be just enough to change their minds about moving to this house. It makes me happy to see them so happy and I am so grateful that we get to live in this beautiful house.

01/15 A Snow Family

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Snow fabulous SNOW! It snowed huge FAT snowflakes ALL DAY! It was fantastic! The kids had the best time! It kept me busy, finding items for snowpeople (and dogs), and drying clothes in between outings. Ainsley asked to go outside! I was so thrilled. I got her all bundled up and she sat out in the snow with her brother and sister. She was a little shocked by the sensation of snowflakes falling on her cheeks and quickly decided to cover her face with her mittens but she did it and I'm so proud! It was a great photo op for me even though I'm still dizzy. How could I possibly resist?! The hard part was picking ONE picture for this day. But this picture of their snow family is it because it represents all the fun we had in the snow. It was Adrian's idea to make the snow dog. And Evie's to make the snowbaby. And after all this was done Evie was sad because even though her dad played with them for hours in the snow he didn't help them build an igloo like he did a few years ago. Geez!

Based on the amount of snow there is on the ground I have to wonder if the kids will be going to school tomorrow. Happy Monday, and Martin Luther King Day! To see the full Happiness Project Album click here.

Happiness Week 1

2012-01-09T15:50:00.000-08:00

The year is off to a good start. I'm actually surprised at how many things I am happy and grateful for when I sit down to record my day in my journal for my 2012 Happiness Project. I'm finding I don't have enough space, and that's a nice surprise.

I think the Happiness Photo Project is going to be a great creative outlet and way to help me focus on practicing gratitude which is part of my project. The idea is simple. Every day I will be taking a photo of something that either makes me happy or that I am grateful for. Each Monday I will be posting the prior week's photos. (Since 2012 started on Sunday, Week 1 has an extra photo.) Some of the photos will be more artsy than others. Sometimes it is hard to pick just 1 picture, but that's the rule, 1 photo per day. I am trying to ignore my inner-perfectionist and just let the project be what it is. This project is about visualizing some of what makes me happy each day not my photography skills or recording every single thing that makes me happy. In the end I think it will be very interesting to see a year captured in this way. I hope you enjoy the project and it adds a little happiness to your Mondays.

What Made Me Happy - Week 1

01/01 Books and Children Who Love to Read Them

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Evie bought The Son of Neptune, a 500 page novel, with her Christmas money and finished it in 2 days. I love books. And I'm so proud of my avid reader(s.)

01/02 Board Games and Time to Play Them Together

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Steve was home through Winter Vacation which was great for all of us even if he did have greatly reduced hearing due to double ear infections. Even Evie played with us (she doesn't always love to play especially when she could be reading.)

01/03 Erasers for Cursive Homework

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Adrian's teacher is requiring they do ALL their work in cursive now, for the ENTIRE rest of the year. Thank God for erasers or he'd have been crying more than he already was. I was also thankful that I'm no longer in school because I never liked homework, and I still don't.

01/04 My Husband Home From Work Before 7:00

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Yes, we are ushering in a new era. Home at a regular time like regular dads. It's SO wonderful!

01/05 Finding Chocolate Chip Cookies in the Pantry After an Exhausting 2 Hour Arts School Tour

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Only because I am COMPLETELY crazy, would I consider sending Evie to an Arts School in another town, that requires driving to and from school 1/2 hour+ each way when the bus for the regular middle school stops in front of our house. Considering that this is a free public choice school and assignments are selected by lottery from HUNDREDS of applicants, it is likely that I don't really have to worry about it. But it would be fabulous for her. She says it's always been her dream to attend performing arts school (think Juilliard) and this will be her only chance. She thinks she wants to be an actress, loves to perform, dance and loves all types and mediums of visual art. I'm in trouble. I'll keep you posted when we find out in a couple months.

01/06 Not Having to Cook AND Getting FREE Pizza!

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Every Friday is pizza and a movie night and is my night off from cooking. Love it even more when they are late and give it to us for FREE!

01/07 Ainsley Signing She WANTS to Use the Potty

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Fingers crossed this isn't a phase, but Ainsley is telling us (sometimes) when she needs to use the bathroom. Since she can't go by herself this is the missing component, being able to tell us when she needs to go, to a future free of diapers. This development is new, the past week, and I couldn't be more thrilled!

01/08 A Hot Buttered Rum When I'm Not Feeling Well

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I've been having lingering sinus issues and hope I'm not headed to an ear infection like Steve. I can't afford to be down for the count. We are now back in school. Evie starts rehearsals for the musical today, Adrian starts basketball Wednesday and I am working on a bunch of stuff for Ainsley (new communication device, trip to Cincinnati, multiple specialist appointments, and new therapies.)

I have started an album in Shutterfly if you'd like to see the entire Happiness Photo Project in its entirety click on the link to the slideshow here and bookmark it for future use. I might even add it to my sidebar, we'll see.

Be Happy.

2012-01-01T16:03:00.000-08:00

We had a very nice Christmas season. Hopefully I will have pictures to share soon.
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After 5 years of being a parent to Ainsley I have had lots of time to observe her and wonder at the amazing person that she is. How is it that someone can go through so much, have so many trials to suffer through and yet be soooo HAPPY?! This isn't uncommon for children with medical issues and/or special needs. I believe it really comes down to their ability to live in the present moment. It is a gift that they have been given, the happiness that we all seek. The title of Ainsley's blog is Happy to Be Me, and she truly is. She doesn't try to be someone else, she doesn't focus on what she can't do. She is simply happy to be as she is. We can learn from her. I can learn from her. We can all be happy to be ourselves! And we can all be happy no matter our circumstances.

I've been reading about mindfulness over the years and also recently about fighting perfectionism (thanks Ann). I do believe that we already are and have everything we need to be happy. Surely that is true. But it is not always easy. To be living means we will meet struggles in our days. But we can choose what we focus our attention on. And what we focus our attention on becomes bigger, I find. So when difficulties arise we must find and exercise our inner Pollyanna. Do you want to be right or happy?

I often find the days slipping by with not enough time spent on the things that are truly important to me. And in addition I think it's easy as the mom of 3 children, one with lots of special needs, to lose track of my self. Sometimes I can't even remember what makes me happy. Much of what I do every day feels like a chore. Recently I read Life Strategies. I liked Dr. Phil's analogy of our self as a "life manager". If I was paying myself to manage my life how would I rate my performance? Am I doing a good job in all areas of the job description? My life manager is really good at certain things and completely ignoring other important parts of the job. Like having fun and taking time for myself. She also isn't the best at managing time or goal setting (especially the big picture goals). My life manager is an unrelenting task master.

In 2010 a friend told me she was reading The Happiness Project by Gretchen Rubin. After reading the book I decided to try my own project in 2011. To give you the general idea of what a happiness project is, in a nutshell, you look at your life and find areas that you think you could be more happy, then set goals and specific action items, focusing on a different area each month of the year. Read more about it at her website. My project fizzled when the move to Redmond took over our lives last year. I'm restarting again in 2012 and I'm very excited about it.

I am using Gretchen Rubin's concept to as the framework to my own happiness project. It isn't about trying to live perfectly (which this project could easily turn into for someone with perfectionistic tendencies) but is about analyzing my life and the things that I can do to make myself happier, knowing that some things cannot be changed. I found the perfect day planner by Thich Nhat Hanh to record my project goals and my daily observations (which the above quote and photo is from). Try as I might to stick to the plan I'm sure this happiness project alone isn't the answer. A second part of my happiness project is to practice gratitude and focus on the good things that happen each day which I plan to record in a photo project, stay tuned for my weekly "Happiness Is" post. The third is to simply being present in the moment. After all I too can be happy to be me, in all my imperfection. To sum it all up:

My Plan for Creating Greater Happiness

planning: goal setting with action items
gratitude: actively seeking and acknowledging the good in life every day
mindfulness: focusing full attention on what what I am doing or i.e. get out of my head

I invite you to take charge of your own happiness. After all if you don't who will? If not today, will that elusive "tomorrow" ever come? If you start a happiness project of your own please e-mail me and tell me about it. Regardless I wish each and every one of you a Very Happy 2012.

My Little Gift to You.

2011-12-24T15:43:00.000-08:00

Ainsley got sick with RSV. Had bloody secretions for days. Needed oxygen at night. Then the rest of us caught it just in time to mess up my Christmas preparations. Steve's been working like crazy (nothing new, but he was supposed to be done with this game last week) and then he got double ear infections so he's nearly useless (sorry honey but you know it's true). It's been BUSY. But we are hosting Christmas dinner for 20 tomorrow so there is lots to do. Maybe like us you too need a little help in the cheer department? I thought I'd share our holiday drink recipes just in case. It's my little gift to you.

Have a very Merry Christmas everyone!!!

Love, Susan

*Click on image to enlarge. Don't they look yummy? I hope I'll have time to try at least 1 tomorrow.

Happy December!

2011-12-05T16:32:00.000-08:00

It's the busiest month of the year. I don't know about you but I have a love/hate relationship with December. As the years go by and the responsibilities increase it becomes harder to enjoy all the Christmas preparations. Last night I asked the kids what their favorite part of Christmas is. Evie and Adrian both said that the best part of the holiday is getting together with family. They especially like to spend time with their cousins. Yay! For a minute I thought that meant they didn't care so much about all the other stuff but after quick consideration they decided they "lovvvve" all the decorations and traditions too.

Since we moved this year we have to "re-invent" Christmas and decide where everything goes and what to do. It feels a little funny. Since it's a bit of a trek from Redmond to Seattle we aren't sure if we will continue some of our traditions. We used to try to make it to Madrona beach for the Christmas Ships but since we are no longer living there, that is likely not to happen, though shhh, don't tell the kids the ships go to Kirkland too. This year we got a letter that Santa isn't going to be at the Macy's downtown this year, although it turns out they just hired a different photographer. The kids LOVED to go there, and see the train set in the window. It's fun to mail our letters to Santa there and help raise money for Make a Wish, click here to go to Macy's interactive Santa letter writer. We'll see about that one. And I'm not sure if we'll make it to Candy Cane Lane . I know the kids would love to do everything and then some but I am hoping to retire some of our traditions and keep things simpler.

Steve's company's game is in the final days of production of their game, so he's been working around the clock. He was able to take a few hours off Saturday and Sunday so we could do a couple things. Darcy LaBelle, our friend and real estate agent, has an annual Breakfast With Santa. It was so much fun and was so well done as is everything she does. If you are in the Seattle area and in need of an agent I highly recommend her. And you never know, you might just snag yourself an invitation to next year's breakfast.

Pancakes and Sausage, and Donuts.

Peppermints, Hot Cocoa, Orange Juice, Hot Coffee with Bailey's, Egg Nog.

Orange Muffins, Blitzenberry Yogurt, Pastries.

Coffee Cake, Peanut Brittle, Croissants and Danishes.

Santa, a secret peak at Santa's List, and Reindeer Grain and Candy Canes.

Oh MY!

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Just down the road from our house is Red-Wood Tree Farm. A destination place to cut your own tree.

Or just buy it. Our tree's not trimmed yet but at least it's in the house.

It was B E A U T I F U L!

It's not so easy to shop for trees with a wheel chair. But I think Ainsley enjoyed herself even if she did have to be "parked" in the isles.

At least I didn't lose track of her like I did this one. He has a thing every year about hiding among the trees. Isn't he too old for that yet?

Though if you need a large tree you'll probably have to buy it off the lot. It's hard to tell but most of these trees are in the 4-5 ft range. This place takes their trees seriously. Each of the trees on the lot is in it's own bucket of water after being freshly cut. I'm hoping it will make for a long lasting tree.

And then they put it in the "jiggler" and shake all the dead needles off. I'd never seen that before.

This is our tree this year. A little bushy but it's quite nice, if only we can get Steve home so we can trim it as a family because I know the kids would NOT do it without their dad.

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Only 20 more days left. We're off to a pretty good start. Each day the kids turn over a drawer of the Advent picture tree (when all the drawers are turned over it makes a picture). Inside the drawers are slips of paper with an activity. This year some days just have candy. I'm trying my hardest to keep on track so we aren't wrapping presents until 4am on Christmas Eve like we usually do. At least in this house I have access to the wrapping paper and perhaps a place to hide gifts. The good thing about my Advent calendar is I can take some things out if it turns out there won't be time and replace it with candy. Shhh, don't tell the kids. They might be getting a lot of candy this year.

Whatever fills your Decembers I wish you peace and happiness.

A Tooth For the Tooth Fairy

2011-11-22T11:32:00.000-08:00

Ainsley's had a loose tooth. I was a little worried about how we were going to get it out (some parents have SN kids teeth pulled to avoid swallowing it) but it has been loose for nearly a year and I could tell it wasn't quite ready to come out.

Then last week the kids were goofing around and Ainsley slipped on the hardwood floors and bumped her mouth. I was summoned to the hallway due to blood. The kids thought she cut herself but actually she'd bumped her tooth. Luckily I was able to fish it out of her mouth and all was fine.

I'm just a little upset that my baby is loosing her baby teeth. Where do the years go?

Evie and Adrian were later than most kids to loose teeth. Which the dentist tells me is good, and usually means straighter teeth. Hopefully losing them this early won't mean her teeth will be crowded.

I will miss her beautiful smile. Baby teeth are cute. Adult teeth go through a period of looking awkward for a bit. Not to mention the gaps while we wait for the teeth to come in. Hopefully what comes in will look just as cute eventually.

Luckily the tooth wasn't swallowed. Ainsley was rather confused about what happened.

Remember that feeling of your tongue in the empty space?

My little yogini placing the tooth under her pillow.

The tooth fairy brought her a tooth fairy doll and $2 in quarters.

Ainsley's new toothless smile. Still awfully cute!

Have a Happy Thanksgiving Everyone!

Sleep Study Results Are In

2011-11-16T10:23:00.000-08:00

Wow, that was fast! Our pulmonologist, unbeknownst to me, rushed the results of the sleep study Ainsley had on Nov. 6th. Part of that included reviewing the results with a sleep doctor. I guess he's the man to know if you need something. He called me 3 days later with the results. It was supposed to take 3 weeks.

To review: Ainsley has Obstructive Sleep Apnea, or at least she would have if she didn't have a trach. I knew this even prior to the sleep study because even though we can put a cap on her trach while she is awake, if she falls asleep she starts to breathe heavily and will wake up 20-30 minutes later because she can't breathe properly. A sleep study is when they attach wires and special equipment to monitor the patient's quality of sleep. All the wires and sensors give them information about what the body is doing.

Ideally a child should have no more than 2-3 sleep disturbances an hour. A child with enlarged tonsils, if they were found to have 5 disturbances, would get a tonsillectomy. So hold onto your seats. Without the CPAP Ainsley had 38.8 sleep disturbances per hour. How is that possible? I'm not exactly sure because she did sleep. It doesn't mean she was awake half the hour. But I think there can be various disturbances happening at once, chest retractions, leg movements, and brain activity showing interruption to the sleep. I was a little surprised at how high the number was. But I knew that the results would be "bad".

The main reasons we did the sleep study were to find out "how bad" her OSA and to see if CPAP would help. And that is the second part of the results. I knew the pressure at home was inadequate for her to sleep, due to my trials. At the sleep study they see how she did at a given pressure and if it wasn't enough they would increase it and repeat that process multiple times until they found the right pressure setting. What they found is that a pressure setting in the 7-9 range got her into the 2-3 disturbances per hour range.

Our pulmonologist said that a setting of 10 is as high as they would generally go for a child. Based on her results were, measuring CO2 and O2 levels, BiPap was never needed. So it was effective. There was a chance that the CPAP would not alleviate the obstruction, and it wouldn't even be an option. What is clear is that she REALLY needs the CPAP. I knew that already but it is a little sobering to hear the numbers.

If we were to move forward with removing her trach and using CPAP for the OSA she would have to be able to wear a full face mask every single night for the whole night, maybe for the rest of her life. Even when she is sick. Probably especially when she is sick. Right now because she has the trach she sleeps beautifully and comfortably all night. Of course there is a chance that removing the trach might improve the OSA some without having that tube in the middle of her airway. But we can't count on it. In fact we have tried taking the trach out to see and though she can go a little longer she still obstructs in the same way. I did this because I knew she was fine during the day and I just couldn't put her through the CPAP trials last year without knowing that she really needed it.

In order to decannulate we would just have to be sure, really sure, that she could do it and it is worth it. And that I'm not too sure about. So our doctor approved plan is to wait until spring without doing any more CPAP at home. We are still waiting on Medicaid preauthorization before we can schedule our trip to Cincinnati (Our primary insurance doesn't require preauthorization.). It may be that they have different ideas, like surgery but we won't know until they've seen her and reviewed her data.

How do I feel about all this? Surprisingly good. Over the years I've come to accept our situation for what it is. If I didn't I would be suffering a lot of emotional pain as I did the first several years of Ainsley's life. All parents want the best for their children. We naturally want to fix things for them and relieve their suffering. Unfortunately there are situations when this isn't possible and not just for kids with special needs or medical issues. Parenting is a great challenge. Luckily it is also a great joy.

Sleep Study, Check!

2011-11-07T10:48:00.000-08:00

It feels GREAT to check this one off my list!!!

It even makes it worth the crappy night's sleep I got! And it nearly didn't happen, so that makes it that much more of a relief. Despite keeping Ainsley home from school and limiting our exposures by keeping her home she got a low temperature this week for no apparent reason (no real sickness in the family, she'd not been sick and limited exposures) and I thought we might have to reschedule. Her throat was red so I took her in to the pediatrician and they checked her tonsils, which though quite red, were not as bad as they looked to me. They did a throat and trach culture which we later found were negative for nasties. She had fluid in her ear, but that's typical for her. These sleep studies are booked out 6 months so you really don't want to reschedule. Luck was on our side and though her temp came back Sunday afternoon it was still under 100. and her breathing and sats seemed normal so it was okay to go. Looking for that brief moment of perfect health to coincide with a procedure, test or surgery is like waiting for a blue moon.

We did a lot of prep to ensure that this sleep study went well and that she would wear the CPAP so they could evaluate whether it's a legitimate option for her.

During the previous week or so, when she was able to wear her cap again, we brought out the machine and got her used to wearing the mask, working up to sleeping with it on. We tapes some wires on her face so she could see what it would be like. Children's also sent along this presentation that showed pictures of a child having a sleep study. I think that was very helpful and went a long way toward making this a less frightening experience for Ainsley. During the week I kept telling her we would be going and why. We reviewed the pictures again right before leaving for the hospital. It really helped.

You'd think we were leaving for a week. It's so great to be so loved!

She was pretty happy to be going. Then when she saw the tech in her scrubs and the room that looked still a bit like a hospital room, she was more somber.

It was almost like going to stay at a hotel. Okay not quite.

She got to watch Tinkerbell on X-Box while she was hooked up. I was too busy completing pages of paperwork and answering questions to get pictures until it was done.

The stuff they use.

Here she is all done. There were wires stuck all over her head with sticky putty, on her cheeks and chin, chest, arms, legs, back. In addition there is a pulse oximeter on her finger and a nasal prong that measures airflow at the nose and mouth. Then they wrapped her head all up with gauze to keep it in place which was smart though perhaps uncomfortable. Can you believe how many wires there are?! All this information is sent to a tech room down the hall, and recorded by a computer. They have a camera that can see in the dark, and they can hear everything in the room. She is fully monitored on every level but since the equipment was in another room, I really don't know the specifics of how she did.

She was tired so after she was wired she was ready to sleep. The bed was large enough that I could get in with her and hold her hand. That helped. As you can imagine she didn't love all these wires. She only cried a little while they were put on. But then she fell asleep fairly easily. The bed is about as comfortable as a hospital bed.

Things went about how I expected. With the cap on her trach she has obstructive sleep apnea, and I knew this from many home trials over the past 3 years. At this point it is the primary reason that she still has the trach. After 20-30 minutes she started to breathe heavily, and her chest would heave trying to get enough breath (retractions), she would rouse and breathe better. Then she would fall back asleep right away and the process would start over. They wanted to let that continue so they could gather test data. I think she understood why she was there and kept the cap on for a full two hours, which was what they wanted. At home she would just yank it off and throw it.

After the 2 hours, they put took the nasal prong out and put the CPAP mask on to start the CPAP portion of the test. I wasn't able to get pictures, but this is an old picture so you can see what the mask looks like.

After all that fighting to get her a full face mask last year, I was a little annoyed to hear from the tech that it is typical that people who mouth breathe need a full face mask, as if that was common knowledge.

Here is where they keep some of the equipment.

Last winter she'd been able to sleep a whole nap with the CPAP(capped). This week it actually didn't help her, she struggled to breathe and woke up and I had to remove the cap. So I had a brief panic attack thinking that the sleep study would be done in vain. But after some research I found they'd put her on the lowest setting but they would be able to go much higher during the study. During the sleep study they kept a close eye and ear on her and each time she struggled they would increase the CPAP pressure. I know at one point she was up to 7 (and only on 4.0 at home) although they can't tell me the final results, I don't believe she ever got to the point of needing BiPap. She was able to keep the mask on until 6 am when she signed to me "off". It was 6 minutes until the study was supposed to be over anyway so we took the mask off and boy was she happy! Though it took awhile longer to disconnect everything.

She was so happy and gave me lots of hugs. When we got home she was so happy to see her Dad, brother and sister who were getting ready for school.

It was a successful study, but a really awful night's sleep. I held her hand the whole time and she woke me 20 times. We're exhausted. I think the stress caused her to spike a fever.

So now she is sleeping on the sofa. It is so nice to see her sleeping peacefully. We'll get the goop out of her hair later. After a few weeks we should have the data. In December we have an appointment with her Pulmonologist to discuss our next steps. It's hard to think of making her sleep with the mask on for the rest of her life, and I'm really not sure loosing the trach is worth it. In addition her craniofacial team wants to see her after the sleep study. They have given the okay to schedule frontalis sling surgery and likely we will discuss her under bite and how that might be affecting her sleep. So these are some of the pots I've been watching and stirring. That and we are planning a trip to Cincinnati, likely in the spring to get a second opinion about her airway. I think in some ways this is a relief to our ENT who doesn't want to make a wrong decision.

Now we just wait and weigh our options which are:

Do nothing and keep the trach as long as needed.
Work toward the goal of taking the trach out which means using CPAP for sleeping.
A cricoid split or other airway surgery, which carries risks.

Hopefully over the coming months we'll be able to make some big decisions. For now I'm going to take a nap. And try not to obsess about it. Life still has to be lived.

Halloween 2011

2011-11-01T23:55:00.000-07:00

I hope you all had a great Halloween! We sure did. Since we moved this year we weren't sure what to expect. The kids had a great time! Their new school has Halloween parties in the classrooms, and then they have an all school assembly where each grade performs a Halloween song. I decided to take Ainsley. It was so much fun to see hundreds of kids in costumes! I was really surprised at the variety and creativity.

Adrian: Obe Wan Kenobi (Star Wars)

Evie: BumbleBee

Ainsley: The Queen of Cute (it was fun to make her chair into a throne wish you could see it better)

I was a little sad that they didn't want to do a joint theme this year but I'll get over it.

Thanks to my sister Sheryl who is training to be able to care for Ainsley, Friday Steve and I were able to go out. In 20 years this was the first Halloween party we'd been to together (other than the kid party we hosted). At one point in my life I wanted to be a makeup artist. Pretty funny, and maybe a little surprising. I made Steve's black eye. I was pretty happy with how my "Dark Faerie" makeup turned out (you might have to zoom to see it.).

We carved pumpkins and it was nice that the kids could safely work on their own. Ainsley joined in the fun, at first reluctantly touching the goo, but then she got into it and kept scooping her goo back into her pumpkin from the bowl over and over. It was very cute.

We had fun figuring out how to arrange our outdoor decorations. We were sad to loose our porch and were not sure what we were going to do but it turned out that with a little creativity this house is even better for decorating.

We setup the graveyard on the left after you pass through the arch.We added a fence this year which was very cool.

I love the bones in the leaves.

And a spotlight on the cross shined up onto the stone wall.

On the right side was a ghost in the tree.

We put a skull in the fountain. A cool effect, I thought.

We setup the crows, bats and owls in the covered area by the door.

As well as the giant spider.

Steve always plays spooky music so it really is an experience. Now we just have to work on getting more trick-or-treaters! (16 this year)

It was spooky outside, but warm and cozy inside. I was plenty happy to stay in and pass out chocolate eyeballs to the kids, while Steve took the kids out around the neighborhood. I hope you all had a wonderful Halloween!

We finished soccer this weekend and are relieved to be through a busy October. Ainsley is going in for a sleep study on Sunday so for now all my energy, what little I have left, is focused on getting her to wear CPAP with her cap while she sleeps so we get good test data for making medical decisions. Even when it looks like there is a lot of fun happening in our life we always have lots of pots on the back burners that I am constantly watching and stirring. I'll tell more when there is more to tell.

Ainsley, My Baby, Is 5!

2011-10-20T22:43:00.000-07:00

What an eventful week. Sunday was Ainsley's 5th birthday party. About 30 of us, family and close friends, gathered at our house to celebrate. The past 5 years have been full of joy and tears. Ainsley is loved beyond all measure but it would be a lie to say these 5 years have been easy. They certainly haven't been easy on her. Sometimes if I think about the things she's been through it makes my heart ache and my eyes burn and sting. She SO deserved to have a big party. She is so easily pleased it is tempting not to make a fuss. But in our family we've been known to do some pretty fancy parties so we decided it was time that Ainsley had a special party and so a special party is what she got.

Since it is October, my favorite month of the year, we had an owl and fall theme. I bought the owl graphics from AndersRuff, (click the link to drool over the most amazing parties you've ever seen) thinking that would save a lot of time, but in fact it fueled our creative demons. I about died when at 1am the night before I didn't have enough moss to finish the last side of my box (so I had to wash and dry more and bring out the hot glue the day of the party when I had plenty else to do), I was cursing my oldest daughter for suggesting we make an owl nest as a bowl for the party favors (now I have a whole new appreciation for the talent of birds), and if you'd seen the house an hour before the party you'd be pretty shocked it came together. But it did. Most importantly Ainsley had a blast. The other kids played Calico Critters with her, which is her favorite thing to do. She loved all the people and the fuss. She was even able to open the gifts herself and it was so wonderfully like any other kids' birthday.

There is no rest for the weary. The following day was her IEP. I'm glad to say it went really well. This IEP will last until 10/2012 which will be Ainsley's Kindergarten year. Her teacher had nothing but wonderful things to say about Ainsley: that she is very social, loves to participate in every way she can, and has a great attention span. She's just the kind of kid they love to have in class. She is impressed with her abilities says Ainsley is one of the top kids in her class despite her limitations. She's higher functioning than many of the kids in the higher functioning preschool class (which we will be trying out to see how she does very soon). Of course we are so proud!

Then on the 18th, her real birthday, I took her to Farrel McWhirter Park to see the farm animals. It was the most beautiful October day you've ever seen. The light was gorgeous. In the sun it was warm so at first the animals were hiding but eventually they came out. We saw chicken, a turkey, a cow, ponies, a rooster, goats, sheep, a little pig and the biggest big you've ever seen! It's a very quiet, peaceful place. We had a picnic. Then we played in the leaves. There was a huge field and smack in the middle was the biggest maple tree you've ever seen and it had dropped its leaves everywhere. Ainsley still cannot stand but I was able to help walk her through the leaves and she got to feel them crunch underfoot for the first time. We were there just for her, with all the time in the world to linger. She bent over and picked up the leaves to inspect them, smell them and then throw them up in the air. She had so much fun! It was really wonderful! A day I won't forget.

Then yesterday was Steve and my's 15 year wedding anniversary. We decided to go to the Matador. A restaurant and tequila bar in downtown Redmond. My sister Sheryl came over to watch all three kids. She has been doing trach training so she can provide respite (paid for by the state). She is the first person other than our nurses to care for Ainsley. Steve and I can count the number of times we've been out without the kids in the last 5 years on one hand, usually to someones wedding. It's amazing when you consider the very high divorce rate for parents of kids with special needs that we've managed to stick together. So it was a real treat for us to go out. The restaurant has a great atmosphere and I could almost imagine we were on our honeymoon in Spain, 15 years ago. Just for fun I wore my wedding jewelry, a garnet and marcasite choker (I don't know how my poor baby can wear a trach tie around her neck I was so glad to get it off by the end of the night) and put in my contacts for the first time in several years.

It's funny but I think the only pictures I ever have of Steve and I are taken on our anniversary.

Outside the Matador.

At our table. The food was delicious!!! Loved the giant mirrors and all the ironwork.

The bar and the three stain glass pieces were incredible!

We had a great time! We didn't have the Jose Cuervo 250th anniversary tequila. At $300 all I could say is WOW, I hope that was for a bottle but I think it's a shot. I got plenty of more affordable drinks.

And when we got home.....

...it was back to reality. Yes she was awake. She cracks me up!

It's been a fun, but tiring week. I'm hoping for a bit of a lull before Halloween. Of course we have soccer. LOL. Have a great weekend everyone!

The Countdown to 5!!!

2011-10-11T11:32:00.000-07:00

Sorry for disappearing there for a bit. If you recall Ainsley was sick again in September. A trach culture showed she'd had the flu. So likely that's why I was sick for so long. And she also had strep pneumonia bacteria. So though she didn't actually have pneumonia, it could have gone there. After 2 weeks of antibiotics she's doing much better.

What else have we been up to?.....

Lots and lots and LOTS of SOCCER.

Ah, that smile! Ainsley seems pretty happy about it (soccer) for the most part, even being drug to a field 5 days a week she doesn't complain (unlike me). Some days I put her in her walker, and it's tough wheeling it through the grass so it's an extra good work out. I bought her a soccer ball as an early birthday present and she tries to kick it around. You should see the looks we get at the soccer field.

***

Remember the swing set project?

We discovered that for an extra $150 you can have the truck come and blow the chips in. Loading 12 cubic yards of wood chips would have been a HUGE job so we were thrilled to have them do it. Unfortunately at $750 that ate up our garage sale funds. Yikes! Hopefully this is a one time expense. So much for our intention to use the funds to finish the play house.

Isn't this cool? An hour or so later it was full and DONE. I like DONE.

Unfortunately....

After going in and out the side door (leaving it ajar) several times Ainsley was curious, so I brought her outside to see, even though she was sick. Thank goodness! Not realizing that the second lock was locked I shut the door and LOCKED US OUT. That was quite a close call and very lucky. Locking your trached child in the house by herself. THAT would have been scary! I guess I'd break the window. Luckily I had the phone outside and was able to call Steve and in 10 minutes he was home. Hooray! Living in Redmond pays off.

When the kids got home they tried out the swings. With the swing set rotated in it's new position Ainsley's tire swing now fits at the end. After a year and a bit she can finally use it.

She loves it! I'm thrilled she can now swing with her brother and sister.

When I was a kid I LOVED to swing! Nothing is as great as getting so high up that it feels like you will fall off. Evie takes after me.

Adrian can do it too now. Look how scared he is. Awesome!

Now kids can come over to our house to play without me worrying about them tracking in mud from the "wood chip swimming pool".

***

I've spent hours and hours in the yard weeding and pruning and barely made a dent. It's so depressing.

***

We made it to Salmon Days for curly fries, elephant ears and to watch the Salmon return to Issaquah Creek to spawn. It's a cyle of life that is amazing to see. Steve's been mixing sound there for the concerts for 27 years. (He was practically a kid.)

While we were there Ainsley met a kindred spirit. An adorable Daschund, Malibu, with a love of life. She isn't letting anything stop her! How cool is that?! Evie was fascinated that she also had a set of wheels to help her walk.

Ainsley loved meeting her. It was very sweet!

Little Missy is getting into stuff. And learning stuff. Boy oh boy is it a little scary. And impressive.

Have I mentioned Ainsley likes to play with water? I allow it because it's good for her to stand as much as possible. Wow was I suprised to see that she managed to get out the doll bathtub from under the sink. And FILL it. Without spilling much water.......this time.

See how good this is for strengthening her ankles? Tip toes? No problem!

She does like to line things up. I wish I could talk to her and find out what she was thinking here.

She's helping hersef to bananas.

During a tube feeding she signed eat. So I told her to go get a cup and straw (we were using formula). She crawled to the kitchen, got all three pieces and proudly crawled with them back down the hallway. I was SO proud!

She has been trying her hand at using the remote control. Successfully I might add!

She's even been putting DVD's in by herself. Scary. Very scary.

Then there was the day she got herself up into the office chair by herself. No small feat considering it swivels. I think she was planning to use the computer!!!

She's been using her walker more and more and was even able to navigate herself from he driveway through the two parked cars to the door. Her legs are getting strong. Hopefully the balance will come.

Now for the biggest news of all....

On the 4th Ainsley was able to take a few steps for the first time with me holding her arm. It's still a new skill but it's progress and I'll take it! Afterward we walked down the hall and she used the wall for support and Evie snapped pictures (Steve was at work). I can almost imagine a day when I can walk with her hand in hand.

We are engrossed in party planning. Ainsley turns 5 next week on the 18th. We scaled back our plans and are not calling it a house warming or anniversary celebration (15 years on the 19th) in addition to her birthday like I'd said on the blog a few weeks ago because Steve is super busy due to his game deadline. We've invited family and the friends who care most about our beautiful amazing girl. It's been an extraordinary 5 years. Full of tears and joy! I'm a little emotional at the thought. Anyhow, the party is at 1:00 on Sunday. Anyone who wants to come give Ainsley their love is welcome. We just didn't have the energy to make it as big as it would have been. If you'd like to be added to the guest list just e-mail me at ainsleyblog@comcast.net . Thanks to all who've offered their support over these 5 years. We love you!

Ainsley's First Day of "School"

2011-09-20T22:57:00.000-07:00

Ainsley was finally well enough to start school. I went with her to train the new nurse that will go with her the other two days that our nurse doesn't. It was a really great day!

Every single day Evie and Adrian give Ainsley hugs and kisses before they leave for school. There is no shortage of love in this house and Ainsley gets the "lion's share".

Ainsley got a new chair over the summer, it was delayed by months due to red tape. I'm really ~~pissed~~ bummed that the manufacturer came up with upgrades (recline and a flip-up foot rest) during that time. If only our supplier had known we could have sent it back unused and got the new model. Grrrr! The improved design would have been much better for Ainsley's needs allowing us a sanitary place to change her diaper in public and make it easier to transfer in and out of the chair. Anyway....Ainsley didn't seem scared like she was when she rode in a wheelchair during her second spica cast. But she did tell me at least 5 times with gestures that she wanted to sit in the seat with us instead of the chair. If they had a better pushchair at school I might just continue "walking her" onto the bus.

She was so excited to be there and waved at her teacher and her special friend "J". There was no question she remembered everyone which was really cool to see.

The buzzing bee says hi to all the kids.

An aide helped Ainsley stand for circle time during which she clapped her hands to the music.

During the shaker song she really paid attention to what other were doing and shook her shaker slowly or fast when she was supposed to. She even switched from right to left hand. I could see the wheels turning. It took her a little longer to execute, but she did it and all by herself. She's come a long way! I have an adorable video but it's too big to upload to YouTube.

Don't you LOVE that the shirt is her blog title? Happy To Be Me. That she is.

When it was time for recess she wasn't too excited about using their walker. It doesn't have a sling and she is used to that security so she has to be careful and she was scared. It's a bit on the small side too, but I was pretty impressed with how well she did navigating. But she is a little tall for it so they are going to locate a bigger one with a sling. I'm all for challenge but I worry that she'll fall and they won't catch her in time.

She made her way over the the rock pit (a safer version of a sandbox) where she was able to sit on the edge and dig in the rocks. She was happy about that.

She got her new AAC device (Augmentative and Alternative Communication). She REALLY REALLY likes it! I think she is much more motivated to use it than the Vantage. It's an IPad with a text to speech software on it. The one they purchased is called TouchChat HD. There is mention on the page of Saltillo which is a company that makes dedicated AAC's. So far we are pretty impressed but there are some bugs to work out, which is probably the difference between this route and the machines that are many thousands of dollars. I'll post more in depth info on this another time. The GREAT thing about the IPad route is that people are drawn to them because they are so cool. It really normalizes the use of a speaking device. Ainsley's brother and sister are jealous.

It was a full day and wore the little ones out. The schools here have short days on Wednesday and that means no preschool. It's kind of nice, that way we have 2 mini-weeks. It was a great start to what I think is going to be a great year!

On that note I was happy to complete our pages commemorating the kids' school years.

It was pretty cool to see how the kids have grown over the years. These display frames are from Creative Memories. Evie and I are having fun making seasonal displays for our entryway. And yes, to all 4 sets of grandparents, this is why you finally, after all these years, received copies of the kids' school photos.

My nurse had to call out for a death in the family so I am going to be training someone new for Friday and because I found out the new nurse has a vacation planned for the first 2 weeks of October. I was SO excited to get all the kids back to school and finally get into a routine and get some things done, but it looks like that will take a little longer. Just a little heads up to our local family and friends we have decided to have a party on Sunday October 16th so SAVE THE DATE. We'll be celebrating Ainsley's 5th birthday and Steve and I's 15 year wedding anniversary (In January that's 20 years together. It's a miracle, Amen!) and the recent purchase of our "disabled friendly" home. Looks like it's going to be another busy month.

It's Snot Been Fun Around Here

2011-09-18T17:57:00.000-07:00

FINALLY my cough is a little better. Not 100% gone, but better. I can function. And sleep. Except Ainsley caught whatever this terrible thing is and was not well enough to start school this week.

The worst thing about trachs is that the stuff that you normally cough up instead goes up into the trach tube and if the person coughs hard enough "trach snot" goes flying everywhere! All parents deal with snot, but when a trached child gets sick the snot is on a whole other level. Imagine your child sneezing a huge super-snotty sneeze all over your face. Unfortunately, with a trach, that happens regularly to me. Normally you use a suction machine to suck the gunk out of the trach but it often comes out of nowhere with no warning what-so-ever and there is no way you can be quick enough on the draw. I hate it when Ainsley is sick. And this virus has been especially bad. Her blood oxygen levels have been low at night and she's needed a lot of care during the night which interrupts our sleep. Steve and I take turns but we still wake up constantly. She has not been able to wear her cap and not been willing to eat even a little orally and that has been very discouraging about what that means for any chance of a trach free future.

Now that she is doing better Monday should be her first day back. We are excited! And ready! I can't wait to try out her new communication device. I took the Vantage back to Seattle Friday. A huge thank you to Ananda for letting us borrow it for an extra 6 months so Ainsley didn't go without.

Evie had her first first soccer game last Saturday. Adrian's was cancelled. We have soccer games every Saturday from now until Halloween. A soccer mom is something I never thought I'd be. Along with a lot of other things I never thought I'd be. Here are our first soccer pictures. Probably there will be many to follow.

Since the team didn't have their uniforms for Evie's first game I'll just post photos from their second game. Evie's number is #1. I don't know if that is good luck or not.

I love that Evie is a ballerina who is getting a chance to play athlete. It is so good for her!

Another photographer and I swapped lenses. I was thrilled to try out his zoom which I used to shoot this picture. And he got to try out my L series lens, which in my opinion isn't all that fantastic.

Of course now I want a new lens. But since we just had to spend thousands of dollars we don't have on maintaining a few of the hundreds of trees on the property of our new house I don't think camera gear is in the budget.

I love this tradition of the opposing teams congratulating each other for playing well. Little did I know when I signed Evie up to play with this team that there was another team with girls from her school and she played them here. So some of these girls in pink are her friends from school.

Whatever this tradition is it looks like London Bridge to me.

This is what Adrian does when I ask him to smile for the camera. So instead I'm forced to take candids.

Adrian's in the middle about to kick the ball. Of course, for their first game (since their real first game was rescheduled) they were playing orange and they are orange so our lucky team had to wear blue "pennies" and that was a big ole pain in the you know what (imagine 8 year old kids having to take their "shirts" off to hand it over to the replacement player) and it kind of ruined my pictures.

Adrian playing goalie. The goalie has to wear a different shirt. Boy that confused us. The other team forgot their goalie shirt so they were wearing a blue pennie so it looked like their goalie was our goalie. Good grief, like I'm not already confused enough!!!

Ainsley has been enjoying the games. Ahhh, she's so CUTE! Though I can see that when the weather changes things are going to be difficult. A muddy field and a wheelchair is not a good combination. Plus wind, rain and cold aren't so good for kids with trachs.

Stay tuned for news of how Ainsley's first day of school goes.

First Day of School

2011-09-07T11:56:00.000-07:00

I am SO SO very TIRED of coughing. It messed up our Labor Day weekend. Even though I stayed home and sent the family to various barbecues without me. I'm STILL not over it. Moms can't afford to be sick. It's a real drag. Still I did play a couple rounds of badminton with the family. We couldn't do THAT in our old yard!

Ainsley is slowly getting over her dislike of grass and had a blast crawling around. It's not easy to play badminton with a child underfoot and she wouldn't stay put, so I brought out my bag of tricks.

She loved it and it kind of worked and kept her from getting trampled. Evie and Adrian decided she needed some stuff in her house to make it more real. Like a vacuum. LOL!

Steve is making progress on the swing set area. The landscape fabric is down we just need to bring in the new wood chips. I can't wait for Ainsley to be able to finally use the tire swing we bought for her last year.

Back to school means....haircuts. This boy's hair is thick and grows like crazy. He HATES getting his hair cut. So fun.

Steve is my alarm clock and he woke me up late. The kids were lucky to get lunch, I barely had time to snap pictures and had to go to the bus stop with no makeup. Of course all the other moms looked fabulous for the first day of school. Thanks honey!

I LOVE LOVE LOVE that the bus stop is right on the corner. The kids were sad because they thought we would drive them for their first day like we used to (because we had to). It was different sending them the first day on the bus. I do miss being part of the experience of the first day back to school but I'll get over it. They both had a great day and like their teachers.

Preschool starts Monday for Ainsley and we are working out arrangements for a nurse to go with her the other 2 days that our nurse doesn't work. My fingers are crossed that it's somebody good. She's going to go on the lift bus so she has her wheelchair at school. I still haven't heard from the driver. We never got our AAC, but I hear it arrived and the SLP is getting training on it as we speak. Ainsley loves school and I'm excited for her. We are ready to get back in the routine even if it does mean getting up earlier. I am not, and have never been, a morning person!

This weekend the kids have their first soccer games. Yesterday I spent over an hour in the car driving Evie to and from soccer practice. I've never enrolled the kids in team sports until this year. I thought it would be "too much" on top of having a special needs child with medical issues. I thought we were ready but I hope I wasn't wrong.

This is Evie after her first day of school and soccer practice. I felt about the same. I guess I should be happy that the mini Pillow-Pet comes in handy for something. Luckily she perked up after eating. I went to bed early.

I think Ainsley is hoping to play soccer too when she "grows up". She's been fighting with the kids over the soccer balls. I need to buy her a ball of her own. Earlier this week she "said" she wanted to dance like Evie. Cutie! Hopefully her desire to be like the big kids will motivate her. I secretly hoped she might be walking by the time school starts, but it looks like that isn't going to happen, and probably not by her 5th birthday either which is just around the corner on October 18th. But I have hope that she will by the time she starts Kindergarten next year. I think this is going to be a great year for Ainsley.

Final Days of Summer

2011-09-02T17:12:00.000-07:00

Last weekend we had visitors. Our dear neighbors from Seattle. I was really happy the kids got to spend time with them before the summer was over.

They always play so creatively together. Evie had it all planned out and luckily our overnight guest agreed on her choice of play.

They would put on another Pokemon show. This time it would not be a contest so thankfully, no tears for the losers. They came up with the whole idea, costumes, props and choreography.

Ainsley especially enjoyed the show.

During the day while they prepared for the show Ainsley benefited from their scheming by playing with bubbles.

It was so much fun to sit on the grass and photograph her having such a blast. By the end she was covered in soap!

Steve is still working on fixing the swingset area.

He put in a drain to deal with the standing water in the area. We'll be working on it again this weekend. Covering the area with landscape fabric and bringing in new woodchips next week (I hope.). We are rotating the swing set so we can use the end to mount the tire swing. It will be great for her to be able to swing with her brother and sister. It's good vestibular stimulation. Did you know that? Swinging counts as therapy.

I always thought it was just fun.

Little missy has been asserting her will in unexpected ways....

..and communicating more complex ideas and desires. For example the day this week she got mad that I took the pulse-ox off and she asked me to put it back on so she could take it off by herself. She wants to communicate more. It's very cool to see these changes. I pulled out her communication device and she is definitely better able to navigate the menus. I'll be excited to finally get her new communication device when she gets back to school.

I've had a nasty cough, that I picked up from the kids. So Thursday when our nurse was here I took part of the day to just relax on the patio. It didn't help the coughing but it was good for the spirit. I so seldom take time to just sit. Evie was happy to have my undivided attention to watch her dance.

Adrian ran the sound and played with the "Darth Vader" effect on the tape player.

She loves to make up dances. I did the same thing when I was a girl.

To be fair, then I watched Adrian work on his soccer skills.

It is great to slow down. This boy has some killer eyelashes.

I spent a lot of time torturing my children with my camera. Worth it, I think.

I gave Evie and Adrian boxes of Artist Trading Cards. They loved them and spent a whole day drawing pictures on their cards. I'm impressed with their artistic abilities and it sure beats playing Wii or PlayStation for the umpteenth day.

Ainsley had a blast "painting." All you do is brush the picture with water to reveal the paint. This is a fantastic activity for special needs kids. She can work on brushing without making a giant mess. Spilling water doesn't count, right?

The kids have been having a lot of fun together these last days of summer. When they built a fort under the table I almost wanted to be a kid again.

Where Is That Balance?

2011-08-22T20:13:00.000-07:00

I think one of the hardest part about life is balancing how you spend your time. Last week my uncle (on my birth father's side) passed away. He was a very blessed successful man with a lovely family. The type many people might be envious of. He was very kind, had a positive attitude, always. Which is why his death is somewhat of a surprise. He was extremely healthy before his surprising diagnosis of esophageal cancer. For awhile it looked like he might beat it, because if anyone could beat this nasty cancer it was Rich. Sadly things turned quickly at the end as things sometimes do. He will be sorely missed. Life deals the unexpected.

With Rich's passing and my friend Karin's recent passing I have given some thought to how I spend my time. Every moment is precious, and the reminders of this are everywhere if you pay attention. You don't have to have a friend or family member pass on to be reminded of this fact.

It is easy though to get caught up in activities that waste our time. My children are growing up before my eyes, they are an ever present poignant reminder of the passage of time, and sometimes I feel I'm missing it. Luckily I take a lot of photos. As I type this I am downloading another batch of 348. But even that sometimes feels like a waste of time, because I'm sure I take too many photos. But recording the moments of our life is important. Looking back, especially when sometimes you are too busy to enjoy the moments as fully as you'd like while they happen, is important. And it is also important for someday life will be different than it is today and then I know I will treasure the images of what today seems so ordinary.

And there is a lot of ordinary that has to happen to make those extraordinary moments possible. Every day cannot really be lived like it was our last, but yet we don't want to look back on our lives feeling like we wasted it. There is a delicate balance to doing it right.

While on "vacation" we loaded the thatched moss into garden bags. About 30 of them.

Dug out the soggy wood chips from under the kids' swing set. We found the problem. They'd lined the area with PLASTIC. Effectively creating a wood chip swimming pool. Why they didn't use landscape fabric I have no idea. You'd be surprised how many wheelbarrow loads this was. Backbreaking work this is.

Steve brought the soggy chips back into the "woods" on our lot. I spread it and raked it. It's 8" deep in places. I also pruned the dead branches from under the canopy so the kids don't get their eyes poked back there. I think it will make a nice woodland play space which they might need since clearly it's going to take 5 times longer to do this job than expected and I have no idea when we might be able to even start work on the playhouse. I'm afraid Evie will be too old by the time we get it done. After 3 full days of yard work we were beat, and the area isn't even prepped to bring in new chips. Where is that balance?

But despite working all the time over the last week we've had some "moments". These are the small things I record with a camera because I would otherwise forget them. Maybe this is what it's all about. Finding the extraordinary in the ordinary.

Ainsley very pleased with herself for beading her fingers. I wish you could hear the giggles.

The kids reuniting after Harry Potter Camp. E&A had a GREAT time! Ainsley is so loved!

A visual reminder of why camp is so great for kids. She knows I'd kick her butt for writing on her arm like this but camp is a chance to spread your wings a bit and learn independence at a young age.

The joy brought from sharing a friend's care package of Japanese foods. Isn't this chocolate filled Koala cute?! You'd think it was treasure. A small act of kindness and generosity from a new friend. I was a lame parent and just sent a couple e-mails (camps do that now). Little did I know some other parents would write real letters and others send care packages with cool stuff like Harry Potter Legos, books, cookies, or a stuffed owl.

The kids begged to go to our favorite restaurant, Ruby's Diner, and we were shocked and saddened to find it is now closed (unless you live in California)! This was the special place we'd go after ballet recitals and last baseball games where the kids would watch the train go around the restaurant and play with their vintage paper cars. Instead we got home we lounged in the yard and had lunch on the patio. We conducted a mini science experiment with ants and fallen potato chips. If you really look close ants are fascinating to watch. Interestingly we discovered they liked the soggy potato chip that Ainsley slobbered on far more than the regular one and somehow managed to work together to drag it down into the hole in the crack of the patio.

We also found ants can't be tricked very easily, even if you break up the chips to make them easier to carry they aren't eager to go into the plastic cup to get the pieces. They are smarter than you'd think. And brave too. Would you go out to gather food with creatures 1000 times bigger than you overhead? Watching ants sounds crazy but it was fun.

Evie taught Ainsley how to make the car go back and forth on the chain. I was pretty impressed. I couldn't help but think it was a good Occupational Therapy activity. What has happened to me?

Evie stopped to smell the gardenias. And I took some time to photograph it.

The fun of swimming with your dad in the pool.

The time a hot air balloon flew right over our house, close enough to see the passengers.

Amazing!

How happy a bowl of delicious strawberries can make my kids.

The kids dressing up Ainsley as a fairy because I made them turn off the Wii and computer. (I too am trying to limit my computer time.) I say, as I type this blog post.

Ainsley looks great with a feather boa.

Today I was on the computer after a week long break, just around the corner from the table where Ainsley was having breakfast, and I heard her plain as day from the other room say "all done". I am thrilled and hopeful that more words will eventually come.

So these are the everyday "moments" I record so I won't forget someday. Actually without my camera I'd probably forget by tomorrow. Now I'm going to go and try to create some balance by singing Wii Glee with my kids. Have a great week my friends!

Glee, Bowling and Happy Campers

2011-08-15T20:28:00.000-07:00

We recently discovered The Glee Project. We'd apparently been living under a rock and had never heard of the Glee show. I don't think the kids are old enough to watch it but they have been loving watch the Glee Project. Steve and I have been watching season one on Netflix. The kids had some Christmas gift cards they hadn't had a chance to spend so we made our way to Target this week and Evie purchased Wii Glee Revolution. What you might not know about me is that I sang in choir in high school. I am SO excited to play this game as a family.

Ainsley tried to get in on it too, using the Wii remote in place of the microphone. She likes to do everything we do. So cute!

Then she crashed. Our ENT wants us to try having her sleep with the cap on more now that she's wearing her cap all days. She's made it 2 hours, but I think it's going to be a long time before she can sleep comfortably breathing through her nose/mouth.

Since our life is not typical we have to look for fun where we can find it. It's harder for us to do many typical things people do during the summer. And considering how much the kids have been fighting I think they are bored. Steve had the brilliant idea to go bowling as a fun outing for the whole family. So he arranged to take the day off. There is a really nice bowling alley in Bellevue.

Ainsley wanted to partake in the fun. We always do our best to let her try to participate even when it's challenging.

I had to positioned her hands and pushed them, pushing the ball down the lane.

Luckily it made it down the lane every time. And we all clapped for her.

Then the food came. Assorted gourmet mini burgers with blue cheese and smoked applewood bacon for me. Chicken nuggets and fries for the kids. Mmmmm. That's when we lost her.

For a girl that doesn't eat table food she sure likes to try. Who wants to bowl when there are french fries and ketchup to dip them in?!

The kids made a big fuss about having to use the bumpers. I guess it feels like cheating, but come on?! And yet Adrian was still VERY upset when he didn't do as well as he'd like and he wasn't even in last place. That poor kid HATES to lose. Evie and Adrian are both playing soccer this year and started practice this week. Life is going to get very busy. I hope it helps teach Adrian how to be a good loser. Or it's going to be a very lonnngg season.

This is the bar and bowling alley.

Afterward we went to the arcade next door.

I love this one. I guess Ainsley wasn't sure what to do with all these tickets.

She even had to "play" air hockey.

At the end we fed our tickets into the counter. All 1262 of them.

It was so dang funny to see Ainsley crawl off to the prize counter. She can move really fast when she wants to. I don't worry about what people think seeing a (nearly) five year old crawling in public. Of course the prizes are mostly junk. The kids ended up opting for balls and candy.

Ainsley got a foam sheep stress ball and she was so happy!

I thought you might enjoy seeing some of the amazing Chihuly glass art at Lincoln Square (the shopping center where we parked.)

I think this fountain is made of sheets of plexi-glass but it could be glass.

The next day we had to do some last minute shopping for items the kids needed for camp. Then we had to LABEL EVERYTHING, as per camp instructions.

It takes HOURS for two kids. And last year it made us late so this year I was determined not to repeat our mistake.

It was a nice drive to the middle of nowhere.

The Tacoma Narrows Bridge. That means you are getting close.

When we arrived there was a very very long line to drop the kids off. We were not late this year but kind of wish we were.....not really.

Muggle bug check. Did I mention it's HARRY POTTER camp?

They recreated the arrival at Hogwarts. First years went across on boats. Second and third years waited for the Night Bus. That's Evie and Adrian waiting by the road.

The camp across the lake on the hillside, where they performed the Sorting Hat Ceremony. Steve and I dropped off the luggage and it was wonderful to hear the cheers of the kids. There is a palpable excitement there. We always leave a little jealous. Lucky kids!!!

Here are a couple pictures I downloaded from the Camp Colman SmugMug site.

Evie's cabin.

Adrian's cabin.

Adrian dueling some other wizards. Oh the fun they will have.

And the fun and silence I will have. It's just me and Ainsley. Of course I will miss them but Saturday will be here before you know it.

Steve and I are going to be working hard around the house digging out and replacing the wood chips under the swingset, aka. the swamp, and hopefully starting the play house renovation (using the existing shed). Being a grown up is exhausting. I want a real vacation.

Ainsley Navigating the Hall In Her Walker (With No Sling)

2011-08-11T22:39:00.000-07:00

On a whim today (notice no pants and unbrushed hair) I decided to try letting Ainsley walk down the hall in her walker to see how she would do. She did pretty well guiding it, only needing a little help. And she did it without the support of the sling harness. Normally she wears shoes with orthotic inserts that help support her arch. She was hanging a little bit, I think because it's fun. The kids knew I was shooting a video but started singing show tunes a minute after I started anyway. Though after the fact I don't think you can hear it that much in the video anyway. Ainsley's orthopedic surgeon wanted to see video of her in her walker so this ought to work. Great job Ainsley!

The Objects We Love

2011-08-08T20:15:00.000-07:00

At long last we prepared our previously loved items for.....

...this. I will tell you it feels GREAT to finally sell a lot of the stuff we've been saving the past couple years. Lots of baby and kid items, books and toys. Although I spent an entire 12 hours tagging there was still a lot that wasn't tagged so we didn't bring everything out all at once and this picture was taken near the end, and this is what was LEFT. There were two tables in the garage as well which you can't see because it's dark. We're still going to have a sizeable donation for the NW Center for the Retarded.

We also got to meet a lot of neighbors which was really nice.

The kids have been looking forward to having a lemonade and cookie stand all summer. They were so cute!

Evie painted the sign. We have to settle up and see what their actual profits are because they have to pay for the ingredients. The lemonade was a bit of a bust. Apparently our prices were too high and the weather wasn't hot enough to entice many of our customers. But when you spent $4 on organic lemons and make it fresh squeezed it should be worth a bit more, I think. Next time we're selling Minute Maid. The chocolate chip cookies were a hit. I think that was the problem, given the choice between a huge cookie or a glass of lemonade which are you going to choose? Chocolate, duh!!! Evie was a trooper and stuck with us both days while Adrian went inside and played Wii. Should they split the profit? Well I think I'll let them settle that.

My cosmic reward for all this work. Bigger than the money we made was the surprise event of the weekend.....

We found the long lost "Kitty". We nearly lost her forever since our first customer of the day came to buy our sleeping bags. Luckily he didn't(he was a little too big), and later on Kitty was found in the bottom of one of the bags. She'd gone missing when Evie was very small. Kitty was Evie's favorite lovey. When she was 4 she had her first ballet stage performance. She had to wait with the dancers backstage while we parents watched the other dancers during the show so she brought Kitty to help her be brave. When it was time to perform she wouldn't go on without Kitty, so Kitty had her moment on the big stage.

Here they are together before the show.

It has been driving me crazy for years. I even searched on E-bay for a replacement.

Even if I didn't sell a single thing at the garage sale it would all be WORTH IT just to find Kitty!!!!

The fact that we made $767 is just a nice big bonus! The money will pay to finish the kid's play house. It's a good arrangement since a lot of the items sold, they felt were "theirs".

In the process of pulling out items we no longer need or use, we rediscovered toys seldom played with. Evie claimed she was too grown up for Polly Pockets but it turns out they still have some appeal. And though I thought Ainsley was too "young" she actually enjoyed playing with them with Evie.

It was such a cute sisterly moment. Though Evie was ill and you can see it in her face here. Now Ainsley caught it. Hopefully she'll fare better than Evie who was sicker than I've seen her in a long time.

This is a very weird virus. She woke up this morning at 6:00am all crazy like she was wired on coffee. Not the way a fever usually affects a person. I wanted her to have a bath since her trach and g-tube needed cleaning. I substituted her doll for another drink and wet doll since I'd discovered last week when we put her doll in the pool, that just like Ainsley, holes into the body don't mix with water. But she pointed to the doll and then pointed to her trach and from that I deduced that she wanted the doll with the trach. Then when I brought her "dolly" she pointed to the imposter and said "Bye-bye."

She really loves this doll.

I hope we don't ever lose her. Maybe soon I'll post instructions on how to make a trach dolly of your own.

How we form attachments to the items we own is interesting to me. Lately I've been watching episodes of the show "Hoarders" on TV and it scares me. After this weekend I feel lighter.

What's This?

2011-07-29T14:18:00.000-07:00

What is this a picture of?

This is the picture of a little girl who is learning to like eating and got herself into a chair at the table FOR THE FIRST TIME...BY HERSELF!!! (Yes I positioned the chair for her, but then I simply told her to sit down and left the room to get the food, and when I came back she was sitting in the chair!)

So she can EAT!!!

Wow!

7/25/11 Laryngoscopy Results

2011-07-25T20:16:00.000-07:00

Ugh. Here are the photos from today's laryngoscopy.

And here are the photos from her last laryngoscopy on 2/8/10 when they removed the granuloma and her "tonsillectomy"/adenoidectomy was done.

The main picture of interest is the one in the upper left of each "page". Does the one on the top look a lot different than the one on the bottom? I don't think so either. If anything I think the one on the bottom looks better. But then Ainsley cut her knee Sunday(go figure), it bled a lot and she cried for over 2 hours so there is a chance her vocal cords were inflamed a bit today.

Her surgeon came out of the OR saying things are better than he thought in her airway so he is back to not being sure the surgery is a good idea. We didn't nickname him Dr. Jekyl for no reason. We've been talking about doing a Posterior Cricoid Split for nearly 5 years. He says yes, then no, then yes and so on. Don't get me wrong I'd be happy not to put my daughter through an intense airway surgery the problem is she might need it. What changed in the 2 weeks since our appointment? His mind, basically. It's rather complicated to explain but I'll try.

Here is the situation: Today he saw there is no collapse due to the trach. There is no granuloma (caused by the trach, like the one they removed last year). There is no significant subglottic stenosis (narrowness of the trachea below the vocal cords). Her vocal cords are a little short making her airway small (we've known that). They open but not super well. There is a bump, likely damage from endotracheal intubation at birth and scarring from then too (we knew that). The bump could be reducing mobility of the vocal cords plus the scarring.

Essentially her airway looks pretty good. This explains why she has been capping (covering the trach and breathing through her mouth and nose) for 2 1/2 years. Yes, things improved further in June after we started giving her Prevacid on an empty stomach in May, but really she's been doing well with the cap for a long time. The real problem is that she obstructs when she goes to sleep. Let me say this another way if she was able to do as well asleep as she does when awake we would have lost the trach last year or earlier.

The surgery could improve the situation with her sleeping by creating some space between the vocal cords. His concern is that he might do the surgery and it wouldn't help the OSA and she'd still need the trach. We knew that already. He also is concerned because there are risks: aspiration and decreased voice. We knew that too. He's also saying that the OSA may be in the nasal palate area yet 2 weeks ago he said he finally had to admit he didn't think so.

He said he would be more in favor of the surgery if we'd hit a plateau. I pointed out that in a way I think we have...like 2 years ago. He is encouraged that she is no longer removing her cap. While I agree this is a great change I think it is due to a very minor airway improvement since she'd been able to remain capped all day if her nurse was there to watch her every second. Her sleep issues still seem very much the same. And the photos are the real proof to me that things aren't much different.

He gave us as much time as he could to discuss it since he had a child in the OR waiting for him. And he understands all our points and concerns and "wished he had answers". This would leave us once again at the status of waiting and hoping she outgrows this. But I asked for a sleep study. He agreed to call it in and then said to make an appointment with him afterward. The problem there is that it takes about 3 months to get in to see him. So even if things went well (which they won't) we'd be looking at fall/winter before discussing things again which means no surgery anytime soon. So why do a sleep study when I know she can't sleep with the cap? At this point I think we need a base line to really show whether things are improving or not. And I want the doctors to see it themselves, so they aren't just relying on our reports about her sleep issues.

I respect that he is in a difficult position. That there is a lot at stake. That there are no clear answers. I just wish he didn't keep suggesting surgery as an option just to change his mind.

ENT Follow Up, New Wheelchair & Mid-Summer Update

2011-07-13T16:43:00.000-07:00

Yesterday's ENT appointment couldn't have gone better, really. The doc scoped Ainsley and we got the best view we've had to date. In part I was able to reason with Ainsley a bit more than in the past and she remained more calm so things weren't as wet. But it also looked like there was less redness in the upper airway, probably from the Prevacid changes. She remained capped for the entire appointment. He asked about sleeping and I told him that she still has difficulty sleeping with the cap on which is currently the biggest issue for her.

Since he got a better look he felt he could fairly safely rule out obstruction through the nasal palate area due to craniofacial issues, or in the area in the back of the tongue and he believes the area of difficulty is in the area though the vocal cords, which though they open, don't open real far. So he wants to do a laryngoscopy under anesthesia to evaluate her airway again and make sure the granuloma he removed (caused by the trach) hasn't grown back. He again talked about the options of a Cricoid Split surgery or cutting away part of the vocal cords. We were able to get in on July 25th which is great since it's still summer so if he does decide that she should have surgery it might be possible to get it scheduled prior to the start of school in September, after which she is likely to get sick and cause the surgery to be rescheduled. Here is an image from the video of her airway with the cords open so you can see.

I took the trach out at the end of the visit so he could see how she did, while we signed consent forms. I was glad the ENT got to see how well she does for himself. For awhile we've been stuck at this point of her having a borderline airway just a bit on the small side. Well enough to do okay during the day (unless she cries or get exerted) but too small to breathe comfortably during sleep. I've always suspected she would need surgery in the end. But I also know airway surgeries fail. I would hate to put her through that and have it not work but we won't know unless we try it. Waiting for things to fix themselves also may not work. There will be more tough decisions ahead. Please think good thoughts for us for the 25th.

....And....

We finally got our Convaid Rodeo push style wheelchair last week. WooHoo, it fits her! It was a real challenge to find the right chair for Ainsley's body type (tall, thin with a long torso but not a deep seat) and it is adjustable for growth. I didn't want to have insurance buy a chair this expensive unless it could last a few years. We wanted something that reclines so we can lay her back if she falls asleep, but in the end we got tilt instead so the chair is "transport approved" (is crash tested and has tie downs) and she can use to ride the bus to school. We'd been using the 7lb MacLaren Volo which is meant for age 3 and under. (It looks bigger because it's closer in the picture.) Now I will be hefting a 28lb + chair out of the car, but that's unavoidable. At least she seems to like it and be comfortable. I started shopping for a chair in September and we "ordered it" in December. It was ordered without the tie downs, then had to go back, thus required reauthorization from insurance and Medicaid and was sitting at the DME since May. It is SUCH a relief to have this DONE. Although I just opened a letter from DDD/Medicaid saying certain parts were denied though the DME told me they got approval and obviously released the chair to us. So it's going to require some follow-up. Annoying. But at least we have possession of the chair!

Sunday Evie left for sleepaway horse camp. She was so cute in her cowboy boots and horse shirt. It's all she's been able to think about for weeks. She went with two of her best friends from Seattle and she was SO SO excited, had been looking forward to the day since we registered in January. They sleep in covered wagons. I was a wee bit nervous about sending her to ride horses since her only experience on a horse is the pony rides at the fairs. Friday we go pick her up and see the "horse show". I can't wait to see her ride! I hope she has the time of her life! And doesn't come back grumpy, missing her friends!

I'm trying to spoil Adrian a little since he's bored at home while she's gone. He turns 8 on Monday! It feels like yesterday that HE was my baby. The years since Ainsley's birth have FLOWN by and she is not too far from turning 5! Anyway he's having a sleepover "campout" birthday party with a handful of kids in the backyard Saturday.

I LOVE this boy! (And my girls too of course.)

Since we just bought a house we have no exotic travel plans this summer. My hope was to do a lot of backyard play and entertaining. The weather here in Western Washington has been crummy, no sun and actually a bit cold at times. With all that we have going on I'm afraid summer is going to be over before it evens starts. So if you are lucky enough to be in a part of the world that is sunny and warm right now...ENJOY!

Upcoming ENT Appointment and 4th of July

2011-07-07T22:37:00.000-07:00

Yikes I'm in a crappy mood today. Perhaps that's a sign that I need to blog. I guess it started when I got an early morning phone call that our ENT had a cancellation for this coming Tuesday(I was on the wait list). I should be happy since the earliest appointment I could get months ago was August 30th. With the new appointment perhaps if he wants to "do" anything there will be time before the end of summer. I know the minute Ainsley goes back to school she will catch a virus, and that makes scheduling any procedure (such as a laryngoscopy) under anesthesia dicey at best.

I guess I've been in my head all day thinking through all the possibilities and options. I would love to be optimistic, but I don't expect much to come from this appointment. In my fantasy he would suggest an airway surgery that would fix her airway and the trach would come out this year. I'm expecting more "wait-and-seeing". If nothing else it will be nice that he can scope her and see if the Prevacid changes have done anything to help alleviate the leftover airway swelling. The pharmacy wasn't properly labeling her prescription, so we are now giving it on an empty stomach as it should be. Thanks to my friends on the trach forum for giving me that information. In addition we switched to the Solutabs which have a reputation for being more effective. She is having an easier time forgetting that she's wearing her cap. And she has been eating more. Since you can't see the airway the only way to know for sure what is going on is to stick the camera down her nose and look. We shall see. So stay tuned to see what the results are next week.

On a positive note, as I said, the med changes have caused enough of an improvement that we've seen a dramatic increase in her ability to swallow. I didn't want to say anything until I knew it wasn't a fluke. Now it's been nearly a month of her drinking a fair bit of her blenderized formula from a cup and straw. It's the consistency of a smoothie, but not quite as tasty because it's healthy and contains chicken and veggies in addition to the fruit and yogurt (and other ingredients). She's also become much more interested in table foods. She will put food deep into her mouth, even biting off pieces and spitting them out. She doesn't know how to chew and swallow them yet but she is enjoying the food and that is the main thing. We are probably still light years away from getting her to take all the necessary calories orally to maintain a healthy weight. But it is a massive bit of progress after years of frustration. Here are some images from the past month.

This may be another factor. On 6/9 we taught her to spit food out. Counter intuitive, yes, but actually it gives her a greater sense of control now that she can get food out of her mouth by herself.

Over the past month she has developed a serious love of pizza crusts and will bite them into pieces (still not swallowing them though).

This is actually a bit of a problem because she's a tall girl and can now get into the pizza boxes by herself.

And do this to the pizza. This does not make her brother happy. Plus she is demanding of crusts. This is okay if you don't like the crust, but annoying if you do. Especially while you are trying to enjoy your pizza while she's mad at you because she wants your crust.

On 6/20 she completely wowed us by eating Yoplait peach yogurt which, by the way, has CHUNKS in it. Chunks which she has previously found difficult to swallow without gagging.

She even spooned it all by herself!

Signing for more each time the bowl was empty.

Until she'd eaten then ENTIRE 8OZ!!!!!! WooHoo GO GIRL!

She's demanding some of EVERYTHING we have to eat at EVERY meal. This includes SALAD, which she really likes to put in her mouth now.

One day the kids and I had a real tea party. Ainsley drank real tea from a china cup. Impressed?

She especially likes tortilla chips and popcorn but will put the "used" soggy ones back in the bowl if you aren't watching.

On the 4th of July she impressed our family by biting a hotdog into pieces (still not swallowing obviously). Of course Nathan's are DELICIOUS. That shirt was cute and clean when I put it on her, I swear.

While I'm at it I guess I'll share some more 4th of July pics. We had a great time and it was fun to host since we live in one of the few areas still allowed to have fireworks, being in unincorporated King County.

Evie planting pinwheels.

Ainsley enjoying the lounge chair with Grandma Glenna.

Our pergola decorated for the occasion.

The kids loved taking turns wearing this goofy hat.

Everyone had fun playing bocce. It's great to have a lawn bigger than a postage stamp.

We celebrated my mom's birthday which is actually on 7/5.

I helped Ainsley do a sparkler. She LOVED it! And signed for more.

As far as I'm concerned sparklers are the best. I'd be happy just with that. But we did get other fireworks.

When the sun went down we started with the "flowers" in the street. Ainsley had fun sitting on the boulder with Daddy watching.

Then Steve let off the rest in the backyard, mostly fountains.

Yikes. There were a few aeriels in the box but luckily we didn't catch the shake roof on fire. It's not quite like the big shows but still fun.

I feel a little better after blogging. Stay tuned for ENT appointment results next week. And pictures of Ainsley's push style wheelchair which we finally get TOMORROW after months and months of waiting. Hooray!

Father's Day 2011

2011-06-19T23:58:00.000-07:00

Credit goes to my dear friend Lisa for giving me the inspiration and push to do this for Steve this year even though I really didn't have time. He IS a great dad. It takes a special man to parent a special child (+2). Thanks for all you do honey!

Nothing But Time

2011-06-14T23:10:00.000-07:00

You know you've been at this special needs/medical complex kiddo thing too long when you no longer are annoyed beyond belief when you wait for 2 hours to see the doctor. Really though what's the point of getting upset? It wouldn't change anything other than making us more miserable. After its happened dozens of times you learn. So now we take it in good stride as "par for the course" as we play our favorite hospital game....."watch the clock". Our appointment time: 12:45. Actual appointment time? 2:35.

Ainsley can be a rascal when she's overly tired, as the following pictures show.

Yes, she is drinking her lunch (while doing tricks). More about that another time.

Getting bored (reallllly?!) she decided she wanted to crawl around the room. At the hospital this is ill-advised so we said no. So she then decided to get herself out of her stroller. I think that look says "Oh yeah?! Watch me."

It's no easy effort for her.

And when she does stand the stroller and the suction machine go falling. We can't get that wheelchair soon enough. It's back from the shop but we are waiting on funding approval after their mistake of not getting the tie downs. Ridiculous is what it is. She is 42 pounds and 43.5" tall and far too big to ride in a Maclaren Volo. But hurray, she was able to get herself out by herself, another first!

She's so pleased with herself. And we are too. She's getting to be very independently minded.

Somehow she managed to stayed awake so the surgeon could see her eyes for the first time since the eyelid surgery.

Here you can kind of see that the hair of the brow is a bit lower than the actual brow bone (okay brow prosthetic). When she is relaxed and you lift the brow up a few millimeters it lines up nicely and her eyes appear more open. You just have to love that smile, I just wish we could see her eyes when she smiles.

He didn't get the letter from the occuloplastic surgeon (it may be in his inbox) but is going to follow up with him to find out exactly what he has in mind because some styles of brow lifts (depending on how it's done/at what level) can make it harder to use the brow to lift the eyelid (not what we want). He wants to wait until it's been a year since her eyelid surgery so she is fully healed, so we are looking at December 2011 at the soonest but in the mean time they will discuss the best plan of action for her. They may determine that some other course of action would be better, such as a frontalis sling. Hopefully their plan will not involve waiting until she is a teenager.

Once again he said what an incredibly complex case Ainsley's is. Though primarily she had sagittal craniosynostosis things were very much complicated by the absence of her greater sphenoid wings. The fact that she has a weakness of the lid muscle in addition to the surgery that reshaped her forehead and replaced the sphenoid wings (It changed the shape of her eye orbits, her forehead shape, the position of the skin over the forehead, the position of the levator, the frontalis, the slant of her eyes as well as the possibility that there could be damage to the muscles from swelling.) makes it all rather difficult to sort out what the problem is and how to fix it, even for a highly experienced craniofacial surgeon and occuloplastic surgeon. Luckily I had my handy photos with me to show him the progression again and he was able to see (among other things) that the brow implants that I'd suggested did in fact help her which goes to illustrate that what he would typical expect to see is not necessarily the case with Ainsley. A picture being worth a thousand words and all that I think it's always better for them to rely on images rather than their memory of how she's looked along the way.

As for her head shape: He said that unless she develops vomiting, headaches and other signs of intracranial pressure they would not operate. So that's good. It is typical that the shape changes over time and wants to return to it's original shape and since her head size is almost mature it will most likely be okay. I was a bit concerned about the sudden change. So this was reassuring.

All this means that we will likely get through the summer without a surgery and that would be nice. I don't know about you but I am looking forward to summer!!!! Ainsley's last day of school is Friday. Evie & Adrian's is next Wednesday. If only we could get some sun.

Looking Different

2011-06-09T18:39:00.000-07:00

*This is the post I was drafting when the news of my friend Karin's passing came. She will be terribly missed.
***
Having a child with craniofacial differences is hard. People don't mean to but they judge. There is an assumption that people who look different are different. Even having a child who looks different, I have to fight against the human instinct to judge by appearance in the privacy of my own mind where no one else hears my thoughts. Such as......

Last week I went on a field trip with Ainsley's classmates, many of whom have special needs. I know and love my child in a way that others do not, simply because I am her mother. I know her life has worth, purpose and meaning. I also know that every mom out there feels the same way. And it's true. All life is precious and holds value.

I found it interesting to see reactions of these other special needs moms to my own child, who has a trach, feeding tube, is non-verbal and not walking. And from our conversations my impression was that some of them felt their own child was better off. In case you haven't met her, Ainsley is a happy child. She is a joy to be around. I can't tell you how many therapists, doctors, nurses, school workers and the like have told me how much they enjoy her. She has been through so much but she has such love for life in spite of it all. Other children may be more physically able but Ainsley's spirit shines. If I had to choose I would choose that. But as I thought about it I realize that too is a judgement. My child is no better or worse than another. More importantly there is no need to compare. We are each unique and valuable, with strengths and weaknesses. In case it's not clear I'm not just talking about those with "special needs".

And yet. Ainsley's life is not made easier by the fact that she looks different. I know that people assume things about her because of what they see.

Did you know this is what my baby looked like when she was 9 months old?

When people notice Ainsley's eyes they do not consider that her eyes look the way they do because of surgical results. Sometimes I feel like I have a hard time even getting the surgeons to acknowledge that fact and have come to appointments armed with photographic evidence. So it was with dread that I set out to her appointment on 6/1 with the occuloplastic surgeon to discuss the 6 months post surgery results. Even though it's been that long I still feel a stab in the gut when I look at her eyes and see how much of her lids were unexpectedly cut away, about 4-5mm of her upper and lower lashes. Although the surgeon didn't forewarn us that he would being doing that (beyond the scope of what we consented to) I understood the logic of his reasons why he felt it had to be done in the moment. I hate it, but understand it. And if I can find a positive it is that Ainsley has such thick beautiful lashes that I suppose only I will notice all those that are now forever gone. Somehow I was able to put on a semi-friendly face and voice my opinions and what I wanted done in a quiet factual manner and most surprisingly the surgeon agreed with me. I was shocked. Steve and I left looking at each other in disbelief that it could have gone that easily.

For several years I have said that I believe her brows are too low as a result of her 2nd craniofacial surgery because of how much bone was moved around. That is one of the reasons why they did brow implants in 2010. It helped a little, but the implants don't extend far enough toward the ears to lift the area that needed it most. The surgeon agreed that the eyebrow (hair) is in fact below the brow(bone). He is going to write a letter to the craniofacial surgeon recommending a brow lift. In addition one of Ainsley's eyes was stitched together tighter than the other and it has created a little pinching at the corner causing the eyelashes to turn in on each other and that eye looks a little smaller than the other. Though the surgeon offered electrolysis I really don't want her to loose another s-i-n-g-l-e lash, so he good-naturedly agreed to slit the corner during the brow lift (if we do it) to release those lashes.

In a stroke of extremely good fortune I was able to snag a canceled appointment for June 13th (Monday) which means not waiting months. The real reason for the appointment was that I've noticed Ainsley's head shape changing, and there is a risk that the bone that was previously fused, though operated on, will not allow proper long term growth. Also, I think they would want to see the eyelid surgery results. Now we have the brow lift to discuss as well. Monday we could be discussing surgical plans for this summer. After what we've been through I am nervous. Plastic surgery carries risk and results are not guaranteed. You certainly don't get to pre-view the results. I'm so afraid another surgery could "make things worse" but at the same time I am not satisfied with the current results so if the craniofacial surgeon wants to do the brow lift we probably will. I hope she doesn't need another reconstruction on top of that. Having your child's skull removed and cut into pieces and rearranged like a jigsaw puzzle is not fun.

We have a busy weekend coming up, a new speaking valve and ortho surgery follow-up tomorrow, a poker game, a baseball game, a family graduation, a ballet recital. I'm tired just thinking about it but will try update early next week to let you know what happened. I hope you all have a more relaxing weekend than I will.

True Friends

2011-06-02T18:34:00.000-07:00

I was taking a sick day, writing a blog post from bed when I got the bad news, so that post will have to wait. A friend called with bad news about another friend.

In the years since Ainsley's birth I could not get by without the support of my friends on the Tracheostomy.com support forum. The support it provides is a lifeline. Literally. Those who don't need that kind of support may not be able to understand it. These people are there through surgeries, medical testing, the hard times as well as to share the silly passings of everyday. Some of these people are truly my friends even though I've never met them face to face. They are the ones who I know really care about me and my family.

At times during this journey I have questioned who my true friends are. There are a lot of things we think that a friend should do or be. A friend may not always deliver. Does this mean they are not a true friend? The subject of what makes a friend also came up this week as Evie is missing her old friends and trying to make new friends since our recent move. Can a friend be a friend if you don't see them as often, what if you never met them, what if you had a fight and miss them but haven't talked to them? There are so many ways that friendships vary. After giving it a lot of thought and today's events I think a friend is someone who knows our faults but loves us anyway. It's as simple as that.

Yesterday I was congratulating my friend Karin, from the trach forum, on the birth of her second son. After years of having a child with medical issues she deserved for things to be easy. Unfortunately she suffered an amniotic fluid embolism in the night and is not expected to live. Even though I never met her face to face I consider her a true friend and am devastated. Life can deal the unexpected. Tell your friends what they mean to you.

*Updated to say that Karin passed peacefully later that day. Here is the link to her obituary. If you feel inclinded please donate funds to her boys college fund at any Bank of America with the names Alex and Bryce Kincaid (father Mark Kincaid). On top of the cold virus I already had Ainsley picked up a super nasty stomach virus at the zoo and it's making it's way through our family. If I haven't yet contacted you to tell you that I love you, please know that I do.

Nie Asks

2011-05-27T14:57:00.000-07:00

I hate to bump my last post about Ainsley saying her name but I'm going to. I don't have a lot of time to follow everyones blogs but one I've been following for a few years is NieNie Dialogs. We may not share the same views on religion or politics but I admire her sense of style and find the way she loves life and still does so much, in spite of her accident, to be very inspiring. If you don't know her story check it out. This week she asks readers what is the favorite photo you took this week and this is my answer.

Lately I've been feeling life is passing by too quickly. Some days it feels like my 10 year old, Evie, is on the verge of turning into a teenager. So I was very delighted when Wednesday I was distracted from working on the computer by the sound of my children and turned around to find Evie had orchestrated an elaborate play theme like she has since she was little. She was dressed in a black leotard and twirling a chop stick "baton", Adrian was helping Ainsley stand so she could shake the pompoms and together they were doing a cheer (maybe for Adrian's baseball team, the Yankees?). It was SO great to see Ainsley participating in the play and having such a wonderful time just like any other kid. A great moment! Plus she sure looked cute in her "cheerleading uniform" with her hair up in pigtails! I love that my kids have this type of imagination and can still play the way kids are meant to play and that my oldest baby isn't quite grown up.....yet.

Ainsley Says Her Name

2011-05-24T17:22:00.000-07:00

For awhile now Ainsley has had a handful of words she says: Mamma (which is pretty good), more, up, down, all done, no, yes, Dadda(maybe). The newest addition at the end of April was her name. Usually she signs while she speaks, which is how we know for sure what word she is saying. While it may be difficult to understand the actual spoken word the intention is clearly there. In this case the hand on the chest meaning "me", while she says "Ainsley." We are SO proud of her! We hope that this is a sign that one day she may speak clearly enough that other people can understand her. Here it is on video. Enjoy!

Happy Birthday Steve!

2011-05-19T12:12:00.000-07:00

Yesterday was Steve's birthday. We made his day special because he sure deserves it. Some dads don't like to do the dirty work of raising kids. Steve will. And with a child like Ainsley there is extra "to-do". In addition to all the regular stuff, which there is quite a lot of, he also helps out with the trach care & suctioning, diaper changes, tube feedings, and equipment changes. Thanks honey for all you do! We'd be lost without you.

After driving back over the bridge after ballet class we had a simple dinner at home. Flank steak, baked potatoes, and salad. Steve's pick.

Of course there were presents. Steve got a much needed infusion to his wardrobe, an advantage of finally having more clost space. Life is pretty good for the man of the house.

And of course for Steve's birthday chocolate cake is always a requirement.

You know how I've been saying Ainsley insists on having some of everything we have?

Every.

Single.

Thing.

I mean it. Check it out. Every utinsel, type of food and condiment. And she's getting rather insistent too!

Of course she doesn't eat the butter or the baked potato it goes on. But it's cute how much she wants to have and do the same as the rest of us. Sometimes it's a little heartbreaking. We often spend a good portion of our meal picking food out of her mouth but we have to let her try. She's very good about making it clear when she needs help with that. If I felt she had the muscle tone to eat all her food orally I would push to get her into a feeding program to teach her to eat. For now its baby steps.

During the evening she impressed us with her cruising skills. We've been doing a new "PT" activity that I thought up. We are standing while dancing and exercising to DVD's (think Elmocize or Mommy & Me) to work on standing balance and strengthening. I even tried the AFO's but after a few sessions she no longer needed them. In a few short weeks it's really made HUGE difference as you can see just from these photos she is willing to take more risks and is much more steady. I only wonder if I'd had a PT suggest this activity years ago what she might be doing. My theory is she's been afraid to fall but this new activity has given her confidence. The only trouble is she wants to "do a DVD" all day long. That sign she knows VERY WELL. She is so adorable and hard to resist it's so hard to say "not now".

Not that I want to encourage my children to use my lovely bay window as exercise equipment. Adrian got in big trouble for trying to use the window as a climbing wall. Ainsley does get special treatment....For now.

Have a good weekend!

The Myth of The Perfect Mom

2011-05-07T18:51:00.000-07:00

Today I ponder another Mother's Day and all the emotions it stirs up. I was adopted and so my feelings are complex. When I was a girl and times were tough between me and my mother (like they often are) I imagined that life might be so much better if only I was living with my birth mother. She would be the perfectly loving and kind mother that you read about in books and see in the movies. The ever sacrificing and loving type that was always there for her child with kind words and support. When I was in my early twenties I found my birth mother and started a relationship with her. I soon realized that though it was wonderful to have her in my life that she could not be a mother to me in the same way that my mother is because I was now an adult. The history was not there. The taking care of skinned knees, the fixing of meals rejected, the fights over what to wear, the rebellion and misbehavior she didn't deal with. In our fantasies mothering is always a joy. In real life it is a lot more than that. In real life I wonder how many of these mythical mothers there are. We mothers are in fact, human beings with faults.

By default we carry with us all the baggage of our lives before we were mothers and try as we might to be different sometimes we carry on the mistakes of our mothers, as they did their mothers before them. Or we find our own ways to make mistakes. In the same way that trying to be a perfect person is unattainable, so is being a perfect mother. Yet the myth persists.

Being a mother of a special needs child and one with medical issues is tough. Some people look at us and think we are supermoms or heroes. But we are not martyrs. We did not choose this. Most of us fight tooth and nail to deny our membership into this special sorority. We rail against the suffering our children endure, sometimes unable to accept the obvious because we want so desperately for more for our children. And it hurts. We are, in fact, ordinary people from all walks of life. We have shortcomings as mothers, like all mothers do. And I think many of us feel we are failing a lot of the time. In addition to the cookies not baked as often as we'd like, the moments not savored, and the intended craft projects that may go undone there is the nagging questions of "what more could I be doing for my child", I should really work harder on X, Y or Z. Or the other kids aren't getting enough. Or, dare I say it, the resentment we sometimes feel over the sacrifices we make to raise our children. In reality I think these are things all moms face. We must recognize that we are HUMAN, and intrinsically not perfect.

I always try to remember that our jobs as mothers are to give our children roots and wings. To prepare them for their place in the world, whatever that may be. To allow them to be themselves. And that, when asked, most children just want love and acceptance from their parents. I tell my children every day that I love them. Periodically I ask "Do you KNOW that? Do you FEEL it? I want you to feel that I love you." Whatever else I do wrong along the way I know if in the end they feel they were loved I've done my job well. Not perfectly but well enough.

Happy Mothers Day everyone.

We Moved + Easter 2011 Pictures

2011-04-30T23:08:00.000-07:00

Are you like yes, yes we KNOW you moved already?!

Good that means you've been reading the blog and paying attention.

Actually we weren't quite done. Remember those 3 "little" (not really) PortaBoxes that we packed up in January when we "staged" our house to be sold? Oh yeahhhhhh, thoooooooose.

Well they're baa-aack.

And full of just a little stuff.

We got a welcome to Redmond gift: germs and viruses of many varieties. Joy oh joy! Ainsley caught something and was home from school for a couple days. Evie got a stomach thing and was home sick for another 3 days. I've had kidney pain on and off, could be a result of that kidney infection I had last summer? Or maybe it's the stomach thing Evie had. Ugh. Then I caught a bit of "the" cold and that's left me with a sinus headache that's lasted 3 days. Steve caught a man cold and was home from work for 3 days. Somewhere in there Adrian had a cold almost lost his voice had plenty of eye boogers but somehow managed not to miss any school, or God-forbid, baseball. Oh yeahhhhh but it's Easter and despite feeling crummy for weeks, everyone knows sick days aren't for moms, I've been pushing myself to get stuff done anyway.

Since we are a family that recycles/reuses we had to find our Easter decorations, which of course were packed somewhere in the PortaBoxes, especially the kids' Easter baskets since the Easter bunny obviously needs somewhere to put his goodies. In between vomiting that perked Evie up. Unpacking the storage units was like Christmas....or should I say Easter?

Of course sick or not "little Miss Curious #2" had to check out the action. And yes, she can open doors now. We still haven't figured out whether she should be allowed to crawl on the concrete. I see lots of knee pads in our future, perhaps.

It's still cold out in this part of the country, but I got Ainsley bundled up and she had a blast pushing around the shopping cart and that's tricky when your hands are holding onto a walker. She was much happier out with us and that gave us time to unload more.

What I really couldn't wait for was my couch. I almost killed myself hauling this thing into the house. After 3 months I just couldn't wait 3 more days until we had a (male) helper.

It nearly slid out of my hands several times (like here) but it did make it into the family room in and without any damage I'm happy to say.

Because things have been busy (what's new right?) I was, as usual, giving haircuts the day before Easter. Evie "worked it" and convinced me to cut her hair. Take one last look because it's going, going, gone!

....You'll have to keep looking to see the cut.

The kids are still doing well with the transition. The highlight of Adrian's week was getting his turn to bring home "Abby", the class (stuffed) pet, for the night. They are taking turns and writing about Abby's adventures in a journal. This boy wants a dog SO badly!

Steve's dad helped us unload the last of the stuff from the Portaboxes last Saturday and the Monday after Easter they picked them up and took them away. Yay!

So NOW we are officially moved in. It feels GOOD. I LOVE having my couch back!!!! Perhaps next week we'll all be feeling better (And hopefully that means all kids in school.) and can get the unpacking finished so we can get on with the business of living life.

And with all those boxes comes some fun!

Now what you really want to see.....

********

Easter 2011

Every Easter the kids wake up and bring their Easter baskets into our bedroom and rifle through them on our floor. Then they wait patiently (for kids, but eagerly) for approval to start the hunt for the eggs the Easter bunny hid around the house. After that we go for dinner + another egg hunt at the cousins' house. The kids LOVE Easter. When I say the kids I really mean Evie and Adrian. Ainsley is happy all the time so all this "extra" is not so important to her. Don't get me wrong, she had fun. But as Evie and Adrian tore through the house to find the most eggs the fastest Ainsley was content to find the one single egg I left in plain sight for her on a chair (with explicit warnings to the other kids not to take it) and slowly slip it into her bag and later peek into her bag at the solitary egg. For her that is enough. For me, it's a little heartbreaking. Holidays can be tough times to have a special child for all the reminders of what "should/could be". I must admit I'm very saddened by the poor effect of her eyelid surgery. It's been over 4 months but that isn't long enough for me to get over it. This Easter I got one picture where you can see most of her eyes. Perhaps to some it seems a silly thing to get upset by. Nothing will restore her eyes to how they looked when she was born, before the surgeries, but I'm having a hard time accepting or being be happy about that fact. As her mom I want better for her than what she's been given. I guess it's harder for us mums to let go. The pangs are fleeting though and Ainsley had plenty of smiles and that's what I try to remain focused on. That and the other kids, who always have a blast at Easter! This year's big thrill...Zhu Zhu Pets. They are pretty cute! And then there is the excess of chocolate, the kids like that too!

Happy Easter!

2011-04-24T10:36:00.000-07:00

I wish you all a very Happy Easter!

Enjoy the eggs, bunnies and most of all the beautiful smiles on all the children's faces.

A 2 Week Review

2011-04-17T23:58:00.000-07:00

It's been 2 weeks we've been in the new house. We LOVE it. Life feels easier. At least so far.

Evie and Adrian started at their new school on 4/7. They've adjusted really well. They are most impressed that the cafeteria food is much better. They have REAL pizza, not that square stuff. LOL! That white stuff on the ground their first day?..... Yes indeed snow in April.

We drove the kids for their first day and then I headed to Ainsley's school. I stayed for the first 2 days just to make sure we'd worked out all the fine details of her days.

She had a great first day. Her teacher is very nice and clearly loves the kids. The school is setup differently but I think her needs will be met. In the past she was in a classroom with some typical kids and kids with physical issues. Ainsley has a great attention span and loves to participate. This class doesn't have peer models and she's a little distracted by some of the behavioural issues of a few kids. The other style of classroom that has peer models has too many students (22+) and the kids function at a higher physical level. She's only 4 and will have one more year of preschool because of her October birthdate. Things may change. Time will tell.

The other big thing. Adrian finally got to sign up for baseball this year. Ainsley's situation (and Steve's work schedule) have improved enough that we felt able to make the commitment. He's been LOVING it!

I LOVE this kid! He wasn't nervous one bit for his first baseball game ever. He was EXCITED and when it was over said he couldn't wait until next week's game.

Here is is up to bat, hitting the ball. Since he was a baby he loved balls. The day after his 2nd birthday we were at a 5 year old's birthday party at the park. The kid got a bat and ball. Adrian picked it up and wanted to play. The first ball I threw to him he hit. I said to myself, "This kid is going to be a baseball player." Adrian loves hearing that story.

Here he is scoring his first run. He scored 2 that game and never got struck out. Not bad for his first game EVER, after only 3 practices (several were rained out).

I was super nervous, since we are new to the sport, that it would be all super competitive. It turned out they don't even keep score. Adrian doesn't like to lose, so I was relieved that wouldn't be an issue. At the end of the game the teams tell each other "good job". Very cool.

We look him out for apple pie afterward (and so mom and dad could get some breakfast and coffee.)

Part of why life feels easier is the bus situation. Ainsley's bus can drive right up to our door. Though Steve remarked he thinks it's actually further away than at the old house. At least we don't have to carry her down two flights of stairs and the driver doesn't have to block the street. Evie and Adrian's bus stop is right on the corner. It's great that they have to be ready on time. And it's really nice not to drive with Ainsley (because of her inability to get in and out of the car and the trach) through the city. I hadn't realized how much stress that caused until it was gone. The driveway was a huge factor in our decision to buy this house.

Evie's been having a blast being able to ride her bike in the driveway. What a luxury. There was no place to ride at the old house. The street wasn't safe and it was bumpy. Even the park was up two very steep hills so you'd have to drive the bikes to the park. And with a disabled child with tracheostomy "supplies". You can imagine.....they didn't ride their bikes much.

We were particularly excited to get Ainsley out in her walker. For her to be able to walk (and almost run even) without running into stuff is unbelievably freeing. It is so GOOD for HER!

It's been good on many levels. She's always liked to help. But now the washer and dryer require standing which is really good PT for her. And I had mountains of laundry to do. And I can pretty well count on that not changing so there will be lots of opportunities for her.

In fact I have HUGE news.....

On Thursday she stood up for the first time at a wall. Normally she needs the support of a horizontal surface. She is motivated by those light switches and thinks it's HILARIOUS to turn the lights on and off. They are all over the house so she is now standing up at the wall a lot. In addition there are a lot of horizontal surfaces that are great for "cruising" so she's made big progress in just 2 weeks time. She is very motivated by exploring the new environment.

She's getting better balancing at a high-kneel. She's taken to opening and closing doors all over the house. Slamming them in fact when she's mad, which is kind of cute. Not that we like door slamming.

She's also really doing well with imaginative play. She sets up little Calico Critter scenes all over the place. And she wants to take her dolls with her everywhere. They have to do everything she does. Sleep. Eat. Ride the pony........

.....and use the potty. She learned the sign last week! That makes 30 signs she can sign.

Dolly even had to spy on the fireplace repairman from behind the column, I guess just like Ainsley she likes to watch.

We had our first accidental decannulation in the house. We'd had guests. They'd just left and she crawled in from the other room and I saw what looked like "trach snot" hanging out the trach but her voice sounded louder than normal. At a closer glance I noticed it was the cannula, not where it should be. Luckily she does well breathing without it (other than sleeping) and since we saw it right away we were able to get it right back in without any trouble.

Everything was fine and we went right on to playing. It's been awhile since we had the space for "airplane rides" now that Evie's so BIG. Then Ainsley had to have her turn.

She loves the roughhousing and can't get enough.

We've had some other huge breakthroughs on the feeding front. Well huge for a kid like Ainsley, that's been tube fed her whole life.

She's always liked to play with some table food but now she's putting stuff in her mouth to taste and stuff with texture like this lettuce.

She's able to drink out of a straw (if you help keep it in the liquid) and recently has had more than a couple feedings where she'll swallow 5oz of her blenderized formula (using a spoon mostly).

She had another HUGE milestone, she was able to swallow 3 bites of yogurt with chunks of strawberries in them. Normally chunks = gagging & retching. So perhaps she is finally ready to have some success trying textures.

All this eating is good for the tongue, which is a muscle after all and needs to strengthen. She is trying to say more stuff. And sometimes it sounds like real words. Mama. All done. Up. Down. No. Da (I think an intentional Da Da for Daddy is going to be any day.)

Over the weekend Adrian had another baseball game but Ainsley had been sick so we stayed home and unpacked more boxes. The rooms look good but we've got LOTS of boxes in the garage. Luckily there is a storage loft above the garage so we're moving things up and now could park one car in the garage. Wednesday the 3 Portaboxes arrive and we get the rest of our things that have been in storage since January. I can't wait to get my couch!!!!!

It's been raining....A LOT! It finally dried up enough that Steve was able to get out and mow. I pulled weeds while Ainsley napped and I had the kids picking up bags of pine cones (for a fee).

They thought it was like an Easter egg hunt until after an hour or so and they realized it was work. The bigger yard comes at a price. But we still love it!

Speaking of Easter we have our own bunny.

It's hard to believe only 2 weeks ago we were moving the final boxes out of our Seattle house. It feels like a lifetime ago.

The Big Move

2011-04-10T14:37:00.000-07:00

After Ainsley was born and we found she still wasn't walking by age 2 despite years of physical therapy we knew we might need to move out of our 1919 Craftsman bungalow in the city with it's many flights of stairs. When you have an old house like that there is a lot of work. With Steve's intense work schedule over the past few years home improvements had been shifted to the back burner and the house wasn't in optimal condition to sell, i.e. we had more than a few incomplete projects to finish. Still we knew it would happen eventually so we worked toward that goal, having the house painted, finishing projects, painting the kitchen floors etc. I looked at houses on the internet but not seriously or with an agent. During those years I never found a single level home for sale that I wanted to live in. The few that might be okay had stairs in places, making them less than ideal for a handicapped child.

Then in October 2010 by random chance I found it. THE PERFECT HOUSE. Steve liked it but didn't want to go look, because there was "no way we were ready". Well, we went anyway and took the attitude that we would do what we could to get our house ready to sell and if it was "meant to be, it was meant to be". I had misgivings about certain aspects of the house especially the upkeep of the huge but beautiful yard. Having a special needs child with medical issues doesn't leave a lot of spare time. Even with all that, somehow some way it came together. The sellers accepted a contingent offer and we hustled to get our house ready to sell in January. The process wasn't easy, but our agent Darcy LaBelle from Windermere was wonderful and worked hard behind the scenes to make it "come together" as she would say.

After a grueling move (THE BIGGEST HUGEST THANK YOU TO ALL WHO HELPED US MOVE!!! WE LOVE YOU!) we are now settling in and loving our new home. Ainsley especially loves it here and one thing I know is if it weren't for her we would NOT be here. This process has taken a LOT of time and energy. Now that it's mostly over (of course there is still unpacking and decorating to do) I hope to post more often to the blog. Steve's work schedule has calmed down and he is now less than a 10 minute drive to work. It is great for the whole family. We are making a fresh start in many ways and I look forward to sharing it with you as we settle into the neighborhood, new schools and make new friends (while maintaining old friendships). I want to say thank you to my readers for sticking with us during this period of few posts. And thank you for caring about our sweet girl. I've put together a slide show of the move. I hope you enjoy it. (*Remember you can click on the arrows to view it full screen.)

Wow! A Nap CAPPED!

2011-03-28T20:18:00.000-07:00

OMG! I had to share. Even though we are hectically packing like crazy people for the big move this news is just too big to wait! For the past year or two every few weeks or months I try to keep the cap on when Ainsley naps. Every time after about a half hour or so she wakes up. Obstructive Sleep Apnea is the term for when you obstruct, cutting off or reducing airflow, during sleep. In other words she NEEDS her trach to sleep(that is, until today). This nap was about an hour and a half long and she sleep soundly. I often take video as a means for evaluating progress. You'll see in the video that her breathing is a little loud, but it's not bad, and the more important thing is that her oxygen sats stayed up and she stayed asleep. Interestingly today I went into an in-depth explanation of why I wanted her to wear the cap while she slept and told her I'd be listening on the baby monitor and would come take it off if she was having a hard time. I don't really think that is the reason for the difference but a part of me can't help wonder at the coincidence. Of course one little nap doesn't equal a decannulation plan, but it does hint at the possibility down the road.

Woo Hoo We're Officially Moving

2011-03-09T20:40:00.000-08:00

I am happy to be able to say we are now OFFICIALLY moving. Yes we found the house in October, yes we got our house ready to sell by January, yes we got an offer in February but NOW we have agreed on the inspection items and have SIGNED paperwork. This means baring a catastrophe of some unexpected variety we will be moving....and soon. We are set to close at the end of March and move the first weekend in April.

I've been a very bad blogger lately, mostly I was too cheap to pay the $5 for extra photo storage so I can post pictures. Because after all what's a blog post without pictures?! So I finally decided to pay, and this time it didn't tell me I'm out of storage memory. Go figure. I'm going to need that $5 with the higher mortgage. Kidding....I hope.

We are REALLY excited. I found this rambler in October just by chance when I wasn't really looking. We were not anywhere near ready to sell our house so I think it's somewhat of a miracle that it all came together in the end because I think this house is pretty much perfect for us because of Ainsley.

I LOVE that it is safe and accessible for Ainsley. Although she's gotten quite good at scooting up and down the stairs, now up to 5 times a day, I'll still feel better without the worry of her falling or me carrying her and falling and breaking one of our necks.
I'm super excited that the special ed bus can probably drive right onto our driveway.
I also love that the driveway can be used for Ainsley's walker and the kids can ride bikes. Maybe we can even get Ainsley on a tricycle. Can you tell I LOVE the driveway?!
And it has it's very own 3 car garage. No more sharing a driveway and garage with my next door neighbor worrying that they will come home when I have the car pulled down in front of the door to load her in.
I love that the kids will have a large yard to run and play in with a swing set.
I love that Steve will massively shorten his commute (it under 10 minutes to his work) and avoid the 520 bridge tolls that are coming this spring.
We're moving into the best school district around.
I love that Ainsley will have a room of her own that connects but is separate from ours so we can care for her trach at night without her having to be in our room.
I LOVE LOVE LOVE that I'm going to have space for our stuff and won't have to have medical supplies in my coat closet in my son's bedroom.

Front.

Back.

Look at the back yard! Pinch me. I can't believe I'm going to be living here in 3 weeks and 3 days.

*********

Here's some of what Ainsley's been up to.

Standing at the sink all day because it is a place where she can pull up to a stand and hold firmly on, and it's the perfect height and very stable.

On tip-toe workin those calves.

Seriously. All day. She loves it. But it was very gross today when I found her dipping a toy in a dirty pan and putting it in her mouth. Not the day this photo was taken, obviously. She likes to play with whatever is in the sink, and put things that don't belong, in the sink. It's great PT but I hope her fascination with the sink doesn't last too long.

Dang she's getting strong. She lifted this HEAVY diaper bag up by herself and pulled EVERYTHING out of it, including her emergency medical kit. Have I mentioned she's GETTING INTO MISCHIEF - A LOT?!

She's learned to turn the lights on and off and open doors and slam them shut, over and over, just because SHE CAN.

She TWICE ate almost an entire cup of yogurt. And topped her personal best record with 36 bites of pureed formula.

Today our medical supply company came and picked up the oxygen tanks we've had since Ainsley was born. We haven't used it in years and I'm feeling safe enough about her airway to not have it around and luckily the doctor agreed, no questions asked. That is HUGE! I am THRILLED to get this flammable stuff out of my house, car and life. I am ready for change and that's a good thing because here comes PLENTY of it.

Ainsley's First Year

2011-02-21T15:08:00.000-08:00

I take a lot of pictures. It's what I love to do. There is something about looking at old pictures that makes us appreciate our loved ones, and the good times more by focusing on the good instead of the bad. Looking at photos is one of my favorite things to do that I don't do often enough. On occasion, when we are not experiencing technical difficulties, we watch a slide show on the big screen in our basement which is networked to our computer(and thousands of photos). It is reminiscent of the days when people used to use projectors and do a slide show, but this is SO much better since the pictures are bright and colorful and we can even set the slideshow to have background music. I still love a good album or scrapbook, but a slideshow is also great in a different way. And I love that everyone can see so easily (no whining from the kids that they can't see).

But to have a good slideshow you need to edit your photos. Rotate the images, delete the duplicates and the ones where people's eyes are closed or you took 15 of the same shot to get that "perfect" expression or to compensate for poor lighting. And yes, I also like to removed red-eyes, adjust lighting and make other fixes. It takes time. And it's something I am always working on, because you see, every day I take MORE pictures.

Happily I will say TODAY I finished editing the photos from Ainsley's first year. It's not that I haven't edited photos in the past 3 years, just that I found these particular photos to be difficult to work on. You see, the first year of Ainsley's life was probably the most difficult period in my life, largely because it was so difficult for her. When she was born my oldest daughter had just started Kindergarten, my son was 3 and enrolled in co-op preschool. I was already busy with the two little ones. Ainsley was hospitalized for the first 2 months of her life which meant daily trips to the hospital. At 5 weeks, after three extubation attempts she was trached. When she did come home we had to adjust to having nurses in our home to keep her safe while we slept. She had cranial reconstruction surgery at 3 months of age. She had a g-tube placed at 9 months of age. She had a second cranial reconstruction at 9 months of age, during which they removed and reshaped her entire forehead. That surgery had a very negative impact on the appearance of her eyes which was difficult to accept (and still is). During that year she needed constant suctioning, was constantly vomiting. I had to be with her every second. She was in therapy starting at 4 months of age. All these things were hard, but I think mostly it was the grief over the change in our lives that was the hardest. That and not knowing what our future would bring. A lot of the time I just wished I was "not here". Those closest to me had no idea how hard it was and except for my pediatric trach support group I felt so alone.

I can't explain how I feel when I look at those pictures from that time, but it's saying something that I've finally healed enough to be able to view them. Near her first birthday I put together a montage of her first year. I did it by skimming her first year photos without looking too closely. This process of editing the photos required intense examination which is why it was so "uncomfortable". But it was good to be reminded that despite the pain there was a lot of happiness that year too. And it was great to see and remember how much joy she brought us (and of course still does).

Though her first year montage is always on the Medical Page of Ainsley's blog I am going to post it again here today. Finally I can watch it without crying. I never did a second year, third, or fourth, but just maybe I'll mange to put together a "First 5 Years Montage" for when she turns 5 this coming October................................but I'd better get busy.

10 Years Of Being A Parent

2011-02-18T13:27:00.000-08:00

I never was sure I wanted to be a parent. My mom was a single parent of three (divorced with a virtually absent father) and she always let us know it was a lot of work. (Sorry mom, but you know it's true.) I was with my husband for 8 years before we had our "oops" moment that would change my life forever. I had no idea what I was in for. Nothing can truly prepare you for becoming a parent other than doing it. (And to those who think having a dog is similar, it's not all that similar because, among other things, it is legal to lock your dog in the house with a bowl of food and LEAVE.)

I remember those early months after Evie was born. How much I loved this little person who needed me so much. But I also remember how much of a challenge I thought it all was. Never having any time for myself, no sleep, no money. I remember having to go grocery shopping and squeezing the baby carrier out of the car door, hefting it up into the cart and then having no room for groceries (for some reason mine didn't fit safely on the handles) while she cried and I felt that everyone in the store was watching me. I thought, "How do people do this?" Now I smile when I think of that. It's all about perspective I guess. Compared to my life before children it was hard. But little did I know how much harder it could become. Adding a second child. Then a third. Try grocery shopping with a 4 year old who can't walk AND a suction machine in the cart, talk about no room. Add a 7 and 9 year old who always seem to like to wrestle in the isles. Ha! That's just the example that stands out. Thankfully I do my grocery shopping while the nurse is here. There are so many ways that having three children is hard, but especially so when the demands of one are so great. I love Miss A but I'd be lying if I said it was easy.

Still I wouldn't change it for the world. They are everything to me, my three lovely children. There are so many thoughts and feelings I would like to write about in depth some day, but today I have to clean my house because I have a "showing" at 3:00. But before I go, real quick, I just want to say, "Who is this beautiful young lady? Where is my BABY?!" She is growing up right before my eyes, and just this week started calling me "Mom" instead of "Mommy". I'm not ready! I wish the clock could stop because I know that as hard as it is at times, these are the days we are meant to enjoy, and one day I will miss them deeply.

I am so proud of her (and all my kids).

I will leave you with a picture of the birthday girl from her party last weekend (but yes today she officially turns 10). Which was, hallelujah!, the easiest party I've ever thrown. Evie used my scrapbook software to make her own party invitation all by herself, which we then folded into origami frogs. The theme was a rainforest sleepover. She just had two friends to keep things simple (we had an open house the following day). We made one trip to the party store. Spent an hour decorating the TV room. We ate diner at the Rainforest Cafe, had a volcano cake for desert, made pressed pennies, fed more pennies to the crocodile, bought our party favors at the gift shop.

Easy Peasy.

Perfect.

Tonight we'll probably have our usual family Friday pizza and a movie night (these days it is the only day of the week I can count on Steve being home for dinner.)

And open presents, which oddly she hasn't even asked about this year.

She thinks it's her birthday, but to me it's the 10 year anniversary of becoming a mommy.

The best day of my life.

Zoo Trip, V-Day, Poop, Stairs and Stuff.

2011-02-14T18:59:00.000-08:00

I wish I could say Valentine's Day was top on my mind but it isn't. Yesterday we had a third successful open house with lots of traffic, but yet no offers. When we put our house up for sale I knew it's issues. Mainly the lack of a third bedroom and bathroom on the upper level. And the basement ceiling height isn't ideal for very tall people. Still I didn't expect those thing to keep our house from selling, especially after reducing our price by $20,000 this week. Over all the feedback has been very positive. I'm trying to have faith that the right buyer is out there but as the final days count down to our contingency expiring (on 2/25) I am less sure.

Still if it doesn't sell, it isn't the worst thing in the world, I keep telling myself. We do still have a house that we like. It's not like we'll be out on the street. We've finished some unfinished projects that had been driving me crazy, so that makes me happy. The worst part is that we have 3 storage boxes full of stuff that would all have to come back, and that would not be fun.

The open house yesterday forced us out of our house, and since it was a clear winter day I thought we would head to the zoo, something I haven't done as much as I'd like these past couple years. Steve was, of course, at work. The kids and I had a great time, even though they were not feeling 100% and were tired. I took Ainsley out in her walker for about an hour so our pace was slow. I was so proud of Evie and Adrian for being patient and for how much they love their sister and show it.

Ainsley still isn't quite sure what to think of all the animals. And maybe they weren't sure about us. These miniature panda cattle were quite vocal. It was really fun for Ainsley to hear very loud cow moos.

She actually really liked walking through the bug house.

As usual I got tons of pictures, but will just show a few. Surprise, surprise I have just about used up all my free Blogger photo storage. A fun discovery this week.

Evie had fun pushing Ainsley in the stroller for awhile. It sure was cute, Ainsley would tip her head back and look up at Evie. I wish she could talk. I'd have loved to have known what she thought today.

I almost didn't bother to pull Ainsley out of the stroller for this shot, she was so tired, but I'm so glad I did. These moments, while ordinary at the time are so wonderful to look back on.

I was pretty happy with this one. And these taken at the end of the day before we left.

I caught Adrian kissing Ainsley. It was so sweet. I love their relationship. It's special. But he was mad at me for taking a picture, as was Evie, for catching her standing on the monkey. I think I have a picture of her doing that when she was 3. Time flies.

There have been a lot of other things happening over the last week or so.....

First #2. Hooray!

Ainsley spontaneously cleaning up a spill on the floor. Wow that impressed me. It helps that we are hiding our sponge under the sink due to it's "unsightliness" to potential buyers, making it convenient for her to get to. Not so great when, today, she decided to chew on it. She still loves to play with the cups.

I've been considering CPAP and doing a little experimenting with where we left off prior to her December surgeries, but decided to go easy until life settles down some.

Ainsley has started drawing circular shapes. She's now giving real kisses that you can hear. She is using her voice a lot and trying to talk, though you still can't really understand the words, other than by looking at context and guessing. But it's improvement and I'll take it!

And the biggest news of all. Drumroll please........

She is now brave enough to go down stairs by herself. (Meaning when we aren't watching.) One bump of the bottom at a time.

If this house doesn't sell fast, we might not need a rambler.

She has trouble with the angled stair, but can do it.

These are the ones that take a bit of courage.

I actually think we will miss the stairs for their PT opportunities but I think the ability for Ainsley to get where she wants safely is a fair trade. Cross your fingers for us.

Oh yeah, and Happy Valentine's Day!

Thirty One!

2011-02-06T20:41:00.000-08:00

Okay, so maybe it's not just the strawberry Pediasure. Ainsley has been eating more over the past months. I think I've posted about this already but to recap: I started pushing oral feeding again in October when she started getting more interested in the tastes we would offer. Since then I've been offering spoonfuls with every feeding, up until she says stop. Most often she eats about 10 bites, sometimes, 20, and at a bad feeding maybe only 2.

Today she upped her personal best record of 25 by 6 and ate 31, count them THIRTY-ONE, bites of my homemade pureed formula (and really it doesn't taste that bad). AND she ate them quickly and eagerly. I can't "force" her to eat because she fatigues and is then at risk to aspirate (get the food down the wrong way into her lungs). Today when offered the Pediasure she only drank about 2 ounces but I'll keep trying it. But it appears that whatever she's eating all this extra effort is finally paying off (dare I jinx things by saying so) and her endurance is increasing. Plus hunger helps, a delayed lunch seems to get results.

Here she is showing off!

Yummmm!

2011-02-04T20:14:00.000-08:00

Blogging is a funny thing. When you've been silent for awhile sometimes it's hard to find the right post worthy of breaking the silence, so to speak. What have we been up to? Things have been busy, as always. Keeping the house spotless and "ready to show" has taken a lot of energy. So far we've had a lot of interest and showings, just no offers. I think our house just needs the right buyer. Our agent is confident and I am trying to be too. Then there is Steve's work schedule. He is going through yet another game deadline so the pressure on me is intense which hasn't left a lot of energy for blogging. It's not that there aren't things worthy posting....I just needed the right thing to get me started again.

So......this is it.....Over the weekend when I had to get out of the house, quick for the open house, I stopped at Safeway to get some Strawberry Pediasure. Ainsley had officially used up our stock of enterral formula from the days before we switched fully to blenderized. Well today after school Adrian was looking in the pantry for a snack and saw the Pediasure. He said he'd seen a commercial for it (when, where?) and wanted to try it. Really?! So I said he could since I happened to have half a bottle open in the frig. He and Evie both tasted a sip and thought it was pretty good. Then I gave the rest to Ainsley in a sippy cup while I was making her blenderized food. She'd had it room temperature before and wasn't as impressed, but then she likes stuff cold. Maybe it also helped that she was good and hungry thanks to my extra busy day. (Do ya think?)

~~Damn~~ Dang if she didn't drink the whole thing with no problem.

All 4 ounces. SEE?!!!! Just in case you don't believe me, there is the empty cup.

And she wanted MORE!

I guess in taste tests kids prefer the taste of

this. Compared to.................this.

In case I'm confused, this is where she wants it.

Her new way of telling us she wants to eat. And she WANTS to.

I always said if she would eat, I would let her eat ANYTHING. Now she's putting me to the test, asking for Pediasure instead of my nutritious home made blenderized food. Wahhh!

Not really.

It's awesome and I'm already searching to buy it on-line by the case.

Where Have We Been?

2011-01-17T13:06:00.000-08:00

Loading up these 3 storage boxes to make our house look like this.............

This is one of the photos for the listing. Our house goes up for sale tomorrow.

It's tricky to get everything looking perfect. But we're doing our best. Especially tricky since we have 3 kids, one with tons of medical equipment and supplies. They have been great about letting most of their things be packed up into temporary storage. It's going to be an exercise in minimalist living around here. Our agent recommended removing 50% of our things. We had 4 days to do it and get our house staged for photos. It was down to the wire with painters here painting the same rooms while we scrambled to get everything picture perfect for the photographer yesterday, all in half the necessary time. The shots are fantastic! Our realtor is doing a fantastic job ~~forcing~~ helping us do the impossible. I know she's going to get our house sold.

An extra big thank you to Joanne and Tom for helping us move and Sheryl for helping me clean! We couldn't have done it without out you! Unfortunately there is still more to do that couldn't be seen in the photos but real quick I wanted to write this post to let you all know what's up so you don't worry about us. I guess I should add:

Why would we take on such a crazy thing? - Our house is a bedroom short on the upper levels. When we decided to have a third child I'd hoped Ainsley would be a boy who could share a room with Adrian. We kept it "a surprise" but when she was born we got a bit more than we bargained for, in addition to her being a girl. I've known for at least a year than we would likely need a single level home. Stairs are tough for a girl who doesn't walk and tough on mommy's back having to carry her. In October I happened to find this house by accident when I least expected it. I'd been casually looking for ramblers but finding none I liked especially since I love old architecture. This house is a rambler/ranch with a bedroom off the master with french doors, making it perfect for a child with a trach who needs medical care in the middle of the night (we no longer have night nurses). Even the yard is all single level, making it ideal for Ainsley and whatever level of ability she has in the future. We liked it but weren't sure the house was perfect but over the months we decided it is the best we've seen for our needs and we are ready to give up the charm of yesteryear for conveniences we really need. We'd been finishing projects to get our house sellable but weren't quite "ready". The house has been vacant and on the market awhile and they lowered the price recently so we knew we would lose it if we didn't make an offer. Since the sale is contingent on the sale of our house we then had 5 days to get our house on the market. The timing makes it all just a bit more stressful but the new house is great and I think it will be worth it in the end. And it's close to Steve's work which should give us more time together as a family.

Tomorrow we go with the inspector to see the new house AND our house goes on the market. It's going to be CRAZY around here for a bit. I've still got lots of tidying to do so I've gotta run. I will post when I can.