4th of July 2012

I hope all you Americans had a nice 4th of July holiday. We sure did. The weather here in the Seattle area has been especially rainy, but we finally got some sun just in time for the holiday. Half the time it rains on the 4th. It was nice to be able to enjoy the yard for the second year in a row. We had an old-fashioned 4th of July potluck barbecue. It's looking like this tradition is here to stay.

Evie put together our 4th of July pages  to welcome our guests, all by herself. Nice job Evie!

I just got this outdoor rug and I LOVE it! It's so nice for Ainsley's kneesies.

Ainsley had so much fun crawling under the table and helping herself to chips and veggies.  What a cutie!

 

Finally I have a yard big enough to play croquet. Too bad I was too busy hosting to play.

Of course that didn't stop Steve.

 My sun loving guests lounging in the front yard.

Yummmmm!

The girls went in the hot tub. Later the boys joined in. Poor Ainsley. Always on the fringe.

Adrian directed a game of Simon Says.

 The kids had a blast with old fashioned sparklers.

I made sure Steve helped Ainsley do one. She wasn't so sure about it though and when we asked if she wanted to do a second one she signed "done". She seemed confused. Like, "So today I can play with fire? Isn't this dangerous?!"

We took all the kids to the street to do bees, flowers, crakling crazy ground hogs and turtles.

The men with their fire power.

There were just enough sparks at times to keep the kids on their toes.

We were able to setup seats on the patio to view our small firework display on the lawn.

This one got a little high!

The kids loved this panda bear one even if he was small he was cute.

After everyone left I laid on the lounge chair on the patio with the kids listening to music.   People in the neighborhood were lighting off fireworks well until midnight, the smell of smoke hung heavy in the night air. The kids were so tired from so much fun. That moment alone was worth all the cooking, cleaning, weeding and yard prep. Steve left us after a bit to tidy up.  We look forward to doing it again next year so if you are in our area you'll have to stop by. 

The Man (In Cincinnati)

I haven't written much about the problems I've been having getting resolution from our Cincinnati trip. It's actually been causing me quite a bit of anxiety. I've even been having nightmares. One in which my eyes turned into snake eyes and migrated into a new location in my head, and I couldn't get the doctors to help me. Yikes!

After outlining my questions in 2 different e-mails in June I got a terse reply from the doctor's nurse that didn't answer any of my questions and told me I was free to seek a second opinion?!  I'd been upset about it all weekend. We decided I would let my emotions cool and wait until Monday to reply. I wrote "the man" an e-mail directly that was diplomatic but basically said, "Really, I came 2,400 miles TWICE and you aren't going to give me your opinion?"

You know what happened next?  He e-mailed me himself, THE SAME DAY. And said he'd call the NEXT MORNING.

Then you know what happened? He DID. Just like he said.

And then do you know what happened? He answered my questions. ALL of them. And it took less than 10 minutes. And he was NICE. This man is my hero. I am SO grateful! Now I can move forward mentally and emotionally.

I have to say that often when you have a medically complex kid, communicating through the nurses just causes problems. In the end it actually takes a lot more of the doctor's time. It's certainly stressful for the parents and probably puts the nurses in a tough spot. In this case the miscommunications could have resulted in Ainsley not getting the T&A surgery and me not getting the answers I came 2,400 miles to get, at considerable inconvenience and expense. Luckily it worked out, but I hate having to be the squeaky wheel. I'm pretty good at it, but I really DON'T like it.

So long at last here are the results of our trip to Cincinnati:

• Ainsley's airway has multiple areas of obstruction, all at the vocal cords and above. Her trachea looks good. Although there is suprastomal collapse (caused by the trach itself) it is "the man"'s opinion that it doesn't need to be surgically corrected. Our local surgeon agrees so that question is answered.
• The primary problem is that Ainsley has a poor swallow. My hope is that we can strengthen her swallow with practice and eventually get her to pass a VSS or FEES. If her swallow improves Dr. C says she may not even need airway surgery. It's his opinion that it's the poor swallow and specifically the pooling of secretions that are causing the remaining edema in her supraglottic area. He said that if her swallow was good then the swelling may improve, but if not he could do some work on her arytenoids. Currently he wouldn't because it would increase aspiration and could cause lung damage.
• There quite a lot of lymphatic tissue in her airway. A T&A may not get the trach out but it's not harmful to try and see what happens. I was able to confirm that he said he would remove the lingual tonsils. Our surgeon is going to take a look at them in the OR, and that surgery is scheduled for 7/23.  I think that it will be good to get this swollen tissue out of Ainsley's airway because it might alleviate some of the crowding. I hope at the very least it will keep her from regressing with her oral feeding during periods of illness.
• He said that her tongue falls back a bit, you can "move it" but it would increase the risk of aspiration. Okay fine, I don't like the idea of moving her tongue anyway.
• Dr. C's opinion is that Ainsley does not need any major airway surgery. This is good. Or bad, because there is no "easy fix"(if you can call airway surgery an easy fix). Honestly though I am hugely relieved because it takes it "off the table". Our surgeon had been considering a Cricoid Split, but kept changing his mind because he wasn't sure it would help her. Dr. C said no, it wouldn't help.  That was one of our main reasons for seeking Dr. C's opinion to prevent an unnecessary surgery. Now we know that there isn't any airway surgery that would help her, not just that they wouldn't do it right now.
• We have a friend who had success calming her son's reactive airway with allergy meds (oral & nasal spray). While Dr. C doesn't think that will help Ainsley we could try it and he doesn't think it would reduce swelling enough to increase her risk of aspiration, which is good.
• His sense is that she will continue to need the trach for quite awhile, at least a few years. But things could improve unexpectedly if things improve neurologically. He doesn't know for sure what will happen of course. I am just glad to know what he thinks because he sees a LOT of complex airways.

At the end of the conversation Dr. C even said he would call Dr. I to discuss things before her T&A. They know each other so this is FANTASTIC! Neither doctor expects dramatic results from the T&A but I have a good feeling about it. The timing is great because we are also starting therapy with a new SLP. We'll be working on oral motor skills with the goal of improving her swallow and speech.  Only time will tell where it all will lead us.

Happiness Week 26

One of the purposes of my happiness project is to reprogram my mind to view things from a perspective of gratitude and to actively look for the good in life. I am grateful this week that our climate in this area is mild and that we live in an area of the world that is generally free from devastating events. Sure we'd enjoy some sun this "summer" but really things could be worse. There is always negative to be found, the challenge is to see the positive among the negative.

In addition to the photography portion of my Happiness Project I have personal goals. Each month I have a different area of focus for my Happiness Project. These are areas of my life that I feel could be better in one way or another. There is a saying by Albert Einstein: Insanity is doing the same thing over and over again and expecting different results.  Instead of doing the same thing I am looking for ways to make changes even if they are small. Sometimes it's the small things that drive us crazy and get in the way of our happiness.

June's area of focus for me was Ainsley. That might sound like a cop out, but really having a child with medical needs and special needs is incredibly demanding and yet there is always MORE I could be doing for her.  Before you poo-poo me and tell me I'm doing a great job, please understand it really is true. And this weighs heavily on my mind because her future depends on her ability to do certain things (like walk, talk and eat to name a few), and they will not happen magically by themselves like they do for most kids. It's not like cleaning out the garage, creating a meal plan or taking up yoga.  In this case I am quite fearful of the effects of procrastination. It is easy to have intentions to do certain things, but simply not get to them because life is busy. 

Normally I don't go into great detail about my personal goals but since this blog is about Ainsley I will share a little more with you this month. In part June was coincidentally the month of culmination of prior months planning so it seemed fitting that the month was dedicated to this purpose. With her surgery smack in the middle the month we were pretty much focused on her anyway. Here are some of the things we did:

• Upgrade and reprogram her Nova 7 communication device
• Start seeing a Physical Therapist
• Resume Blenderized Diet & attempts at oral feeding
• Review Airway Status with her local doctor
• Schedule T&A surgery
• Follow up with Cincinnati team (this is dragging on and on and OMG I'm ready to be DONE!)
• Find a new SLP and start therapy for speech and eating.
• Implement new stretches to get legs to straighten more for easier standing.
• IEP meeting and evaluation in preparation for KINDERGARTEN.
• DSHS annual review for waiver program and nursing support.
• Get MyAirvo humidification system.
• Formulate a home therapy activity plan

It's a huge relief to have her eyelid surgery behind us. Right now is an exciting time for Ainsley and I have great hope that we are going to see some exciting progress over the next few months. Of course we love Ainsley just the way she is, we just want to "maximize her potential" so she has the best life possible.

I hope you have a great week. It's the 27th week of the year which means it's officially half over. A crazy thought. Happy 4th of July to all my American readers! I hope you have a safe celebration!

Daily Happiness Photos - Week 26

06/25 A Quiet Night's Sleep

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For over 5 years we have slept to the sound of a very LOUD air compressor that powers the humidification system for Ainsley's trach while she sleeps. Last year I heard about a new piece of equipment called the MyAirvo by Fisher & Paykel that delivers humidity without a compressor and is SILENT. When I first tried to get one I was told no. And no again. Persistance pays. Finally after much hoop jumping and many phone calls we got ours today and for the first time in 5 years I slept to the sound of SILENCE. (Except for

occasional equipment alarms but that is another issue.)

06/26 Staycation Surprise Bucket

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This is the trick up my sleeve that (hopefully) makes up for the fact that we are having a "staycation" instead of a vacation this year. The fact that Steve is required to work 60 hours every week throughout the entire summer will make even a weekend camping difficult to pull off.  So a couple weeks ago I had the idea to put together a staycation bucket. I used some gift cards I had stashed to buy some cheap surprises. In addition we won this mini-amp/guitar/mic set at the Harley Davidson benefit for Seattle Children's Hospital last week. It was perfect since Adrian wants to learn to play guitar (like his dad) and Evie wants to sing (like Taylor Swift) and it was nice to be able to bid on something for the cause. Examples of items in the basket: PlayDoh, bubble wands, sidewalk chalk, a new DVD, Apples to Apples (I've been wanting that game for years), bubblegum (for a bubble-gum blowing contest), a puzzle etc.(you get the idea). I also put together a bucket list of other things I've been wanting to do with the kids. If you are curious to see the list click here and zoom in. It's not Hawaii or Florida but they are just as excited as if it was. (Not to ruin the "happy" part of this post I must warn you so you don't get mad at me if you try this. With this idea comes a lot of whining and arguing about what to do each day. Still it's marginally better than constantly hearing "I'm booorrrrreeed.")

06/27 A Fort Made of Blankets

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Building a fort is magic. How else can a couple tables and blankets make such happiness?! Evie and Adrian have done this in the past but this time we made an improved fort (by pulling two tables together) that was big enough that they begged to sleep in it. For TWO nights. Ainsley has to be monitored while she sleeps so she couldn't be a part of that, but she loved it during the days. It makes me so happy to see the kids having such simple fun.

06/28 Time with Grandma

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My mom invited the kids over to run the train set on her track (She has a model train track running throughout her backyard.). They picked strawberries out of her garden. After lunch we went to her garden plot at her church down the road. We got beet greens, rhubarb and 6 RASPBERRY PLANTS to take home to the new house.  I missed my raspberries.

06/29 Groceries

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Ask any mom and I bet grocery shopping is not her favorite thing to do with her kids. It's near impossible when you have a disabled child. I've been using my nursing time for other things (like shopping for the staycation bucket and appointments for myself) and we ran out of milk 2 days ago. So after therapy I took all 3 kids to the grocery store. E&A pushed a second cart for the groceries that wouldn't fit in the cart with Ainsley. She loves to go shopping and help put the food up on the counter. I wish it was easier to take her. I am very happy to have groceries.

06/30 Getting Mom A Beer

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I couldn't think what to call this one. We have a little mini-fridge in our TV room. Ainsley has learned a new trick and has decided it's fun to get me a beer. Maybe she's trying to tell me I need a beer. LOL. How can that not make me happy?! Well.....at least for now, until she figures out how to open them by herself with that opener.

07/01 Tea Parties

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Another item from the bucket list. Having a tea party. It's just lunch + china + tea but it's "high tea" to the kids. It was even better because Steve was home and he's the one who is English. Since it was yard work day we were in our grubbies. What a funny sight we must have been. It's a fun way to celebrate their family heritage. P.S. It was Evie who insisted on the toothpicks in our tea sandwiches.

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To view a slideshow of the entire Happiness Photo Project click here. Confused about what this is or why I'm doing it? Click here for an explanation of what it's all about.

Frontalis Sling - 2 Weeks Post Surgery

It's hard to believe it's been 2 weeks since Ainsley's surgery. Not really. Time flies.

Things are about exactly what I thought when I first saw her. She is able to use her brow more and more all the time. That part is great. But the starting eyelid position is lower than we thought. In other words when she is relaxed her eyes aren't very open. We'll give it the 2 months until we see the surgeon again and we can then talk about whether he should bring them up more. That would be an easy procedure.

Here is what she looks like relaxed and smiling. As you can see it doesn't look a lot different from how she looked presurgery.

2 Weeks Post Ptosis Surgery Relaxed and Smiling

The next is her relaxed and not smiling because smiling seems to make her eyes close.

 This is about as open as her eyes are a lot of the day still. She's a little unhappy with me here.

Sometimes she shoots her eyes really open for a second. She doesn't have great control yet.

Every now and then she does and they seem evenly open like in this photo.

Here are two side by side where you can see how much it changes.

Think she's trying to tell me something?! She's a little tired of me looking at, talking about and taking pictures of her eyes. And unfortunately it took a LOT of attempts to get some pics with both eyes open.

This is about as good as I could get.

Even when it's just glimpses it is exciting to see her eyes. I always knew that it would make a difference in how people connect with her. She was always cute, that's for sure, but now she can really look people in the eye. Look out she's going to be melting some hearts!

Happiness Week 25

For the most recent update about Ainsley's ptosis surgery, the frontalis sling, please click here. In a nutshell, we are waiting to see if things improve. At times we are able to see her eyes and it's fantastic! (Lookin' at the glass half full my friends.)

Today I had Ainsley's IEP meeting and Evie and Adrian had a half day of school. As of right now, school's officially OUT FOR SUMMER! I'm very excited about it even though Steve is going to be working 60 hour weeks every.single.week, ugh. We won't be going to Hawaii, or Florida.....in fact we'll be lucky to squeeze in camping. But, I've got a trick up my sleeve! You'll have to wait until next week to hear about it though so stay tuned.

Daily Happiness Photos - Week 25
 

06/18 MIT System

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I struggle with managing my time, always have and probably always will. But I'm trying to be better by learning to manage mySELF, not my time. I've always made lists. A couple years ago I started a new notebook system with a weekly to-do journal that is working pretty well for me. But sometimes (okay often) I end up sidetracked and don't do what I intend each day. Even though I often end up doing something else that I value, I do find certain things get put off. Earlier in the year I read this book. The author is the blog writer of Simple Mom. She writes about the idea of using MITs which stands for "most important things". It's simple: Essentially, among your daily to-dos you prioritize the top 3 as your MITS. These things should be the ones that if completed you can consider your day a "success".  Since it's impossible to get everything on your list done, having MITs allows you to prioritize and feel a sense of accomplishment even when you wish you were getting more done. I've kept my normal system but I'm trying writing my MITs on the chalk board off the kitchen and so far I love it.

06/19 BBB

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Beanie Baby Basketball. Who knew therapy could be so much fun?! PT homework assignment: standing in high-kneel, preferrably while trying to balance and having to reach.  Solution? BBB with BB (big brother) on the mic narating the plays.

06/20 Treasure Maps & Playing Outside

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Take: 1 piece of medical supply packing paper add 1 marker and 1 creative kid (maybe 2); mix and voila you have an afternoon of fun. Evie mapped out the yard and created a treasure hunt. Ainsley wanted to get in on the action and went out in her walker by herself and followed E&A around from one side of the yard to the other. I am so grateful that we have a yard that she can do that in.

06/21 Celebrating With Rootbeer Floats

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Evie graduated from elementary school tonight. Sniff sniff. Steve headed back to work after the ceremony and  I dropped Adrian off at a friend's house. We had girls night. We watched Dreamer, had popcorn and celebrated this life change with rootbeer floats. Evie was so happy. It was wonderful.

06/22 A New Do & Sunglasses

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I've been searching for new glasses for months. I've been to every eyeglass store in the area. My glasses are an extension of my personality, and I'm having trouble replacing them but am motivated by the fact that I can't see. I've also been needing a hair change and boy did I get one. I didn't find the perfect glasses but I might have found the perfect sunglasses, which is great since our insurance changes in a few days so I'm running out of time. Now if we could just get some sun.

06/23 A Night Out For A Good Cause

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Steve's dad bought us tickets to the Harley Davidson benefit for Seattle Children's Hospital. My sister was available for respite so we had a night out which is rare. It was a fun night. It was even better that the money we spent at the auction went to benefit families with "sick" children who have more medical bills than they can pay, and for childhood cancer research. It was a poingnant night, Steve and I gave each other many knowing looks throughout the evening. We've been though so much with Ainsley and been so lucky never to need financial assistance for Ainsley's medical bills because of the Medicaid waiver she is on. 

 06/24 Open Eyes (& Pancakes)

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Although she is having to use her brow to get this lift I was so happy to see Ainsley's eyes open more today. I was also happy to be having Steve's famous blueberry pancakes as a family (+Sheryl, she stayed the night). He's been gone a lot. And I was happy that Ainsley wanted to taste some syrup even if it did mean sticky fingers.

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To view a slideshow of the entire Happiness Photo Project click here. Confused about what this is or why I'm doing it? Click here for an explanation of what it's all about.

Frontalis Sling Surgery - Post Surgery Day 4, 5, 6, 7 & 9

Ainsley's had ptosis surgery on Friday 6/15. If somehow you missed it, you can find the posts here, here, here, here and here.  Here are some more photos so you can see how she's been healing since my last post.

We had our 1 week post-op appointment on Thursday. We expected that her eyes would no longer close completely when she sleeps but so far they have (they are open about 1mm, maybe 2). That may be a sign that we didn't get as much lift as the surgeon planned, or it may just be due to the residual swelling. Dr. S says he's encouraged that there is some change in her sleeping eyelid position and hopes that means we got some lift but that we have to be patient. I've heard that one before. And while I think it's true that she isn't finished healing, I do think her resting eyelid position is lower than we hoped. As you can see from the photos it's not a dramatic difference so far. The Day 9 photo is about how we thought her resting position would be, but she's having to use her brow to achieve this. Ideally it would be nice if she didn't have to work to open her eyes.

The good news:

1) She can lift her eyelids using her forehead muscles. We are starting to see her do this like you see below in the Day 9 picture. I think she will do this more and more.
2) They can go back in through the eyebrow and lift the lids higher if they need to, up to a year after this surgery. So if we want to we can do that.

Post Surgery Day 4

Post Surgery Day 5

Post Surgery Day 6

Post Surgery Day 7

Post Surgery Day 9

The incisions still have some remnants of stitches (they use disolvable) and there is some remaining puffiness in her lids (both upper and lower).  I would imagine that we'll start to see her use her brow more and more over the next week like she is in this picture (hence the difference between the Day 9 picture and the Day 4-7 pictures). So far she really can't smile and keep her eyes open.

Stay tuned for more ptosis post-surgery pictures.

Happiness Week 24

This week was all about gearing up for the big day....Ainsley's ptosis surgery last Friday. If somehow you missed it, you can find the posts here, here, here, here and here.

Daily Happiness Photos - Week 24

06/11 Die Cuts for Display Frames

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I've been making seasonal pages for the display frames in my entry way every month or two. I walk by them many times each day and I was really tired of the spring pages (though we don't quite have summer weather here yet).  I headed to Ben Franklin while I was out running errands to pick up some supplies for my summer pages. The lady working there showed me how to use their Die Cut equipment.  It's free if you buy your paper from them. So for less than $1 I was able to cut out the SUMMER letters and the cute little boy and girl. It's so quick and easy, I'm super excited to do more die-cutting. I love my Creative Memories frames, they are magnetic, so everything goes up in seconds!

06/12 Ainsley Got In the Car By Herself

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By HERSELF! For the first time! I told her to go get in the car. We were taking E&A to dance class. She opened the door, crawled across the garage (avoiding the oil spot) and got herself up into her seat in the car! She even tried to do the seatbelt herself! We all clapped! She was so proud! I could have cried I was so happy!

06/13 Toothpaste Mess

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WHY would this make me happy? Because I was brushing my teeth and Ainsley pointed to her mouth. I told her to go brush her teeth. She signed "help" and I replied "Go do it yourself." So she did. All things considered I think the mess isn't too bad. The funny thing was I didn't find it until hours later so it was a surprise and it made me laugh when I saw it.

06/14 Sibling Love

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I love how much my kids love each other. I hope that never changes.

06/15 Get Well Bouquets

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It was so sweet that Evie made Ainsley a get well bouquet.  It was so thoughtful of her(and Adrian).

06/16 Clean Clothes

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The laundry never ends and even though it's not my favorite household task I am always happy to have clean clothes.

06/17 Kid Gifts

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I love seeing the pure joy on their faces when they give a gift.

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To view a slideshow of the entire Happiness Photo Project click here. Confused about what this is or why I'm doing it? Click here for an explanation of what it's all about.