Jun 29, 2012

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!

Jun 25, 2012

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
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
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
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
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
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
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)
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.


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.

Jun 24, 2012

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.

Jun 18, 2012

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

06/15 Get Well Bouquets
It was so sweet that Evie made Ainsley a get well bouquet.  It was so thoughtful of her(and Adrian).

06/16 Clean Clothes
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
I love seeing the pure joy on their faces when they give a gift.


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 - 72 Hours Post Surgery

Ainsley 72 hours post-surgery. There is still a fair amount of swelling. Her lids are thick. That makes it difficult to judge the outcome of the surgery. My gut is telling me that her resting position isn't going to be as high as the surgeon thought. He said they would be about where they are at in the picture below, when she was 9 months old.

I don't think so just because of how they look at the moment but in part because we expected her eyes to be open a bit while she sleeps and they aren't. But again, the swelling may be the cause. It's just hard to imagine them going from the above photo to the below. I do think she'll get good lift from her brows when she chooses to use them. Right now I think she's too swollen and sore but every now and then she lifts them and they shoot right up. At the moment she doesn't look much different than pre-surgery. I'm hoping for a higher resting position, but I'm trying my hardest to reserve judgement until she is more healed.

People who find this blog by Googling "ptosis" or "frontalis sling" should know that Ainsley's eyes were badly effected by a craniofacial surgery when she was 9 months old. So her surgery results are probably going to be different from other kids having this surgery. I will continue to post pictures and updates.

She's not healed enough to return to school, so for Ainsley school is out for summer!

Jun 17, 2012

Frontalis Sling Surgery - Post Surgery 48 Hours

Ainsley 48 hours post surgery. Waking up happy, hooray!

It was also Father's Day. We would have liked to have been able to spend time with some of the other dads in our lives, but Ainsley needed to stay home to recover. Since we were home bound Steve decided to put up drywall in the kids' playhouse. Evie felt so bad that he was out there by himself she hung around and kept him company. I swear, I told him he didn't have to work on the drywall on Father's Day. Of course later I found out Adrian thought I did and was a little mad at me. NO I didn't make him, it's Father's Day. Sheesh! I didn't object too loudly though.

He promised me months ago he'd have this playhouse finished by 6/25 (The last day of school.) I guess he realized that's only 9 days away and his work schedule isn't letting up so if he has any hope of getting it done then or anytime close to that it was necessary. We've been wanting a playhouse for Evie since she was 2. She's 11. There isn't much time left for her to enjoy something like this, and since we are going to be home all summer while he's working his 60 hour work weeks it would be great to have it to use.  Especially since Ainsley needs to stay out of the sun because of her eyes. The shed was already here, we're just finishing it.  I am so excited imagining the summer fun!

There was a lot of silliness going on right outside while E&A kept him company.

And inside I was working on custom programming Ainsley's new communication device that we got right before I left for Cincinnati. The day before I'd done hours of programming in between loads of laundry and then lost it all accidentally in the file transfer process. %&^*^_(!!!!!!! is all I can say about that. So although I didn't want to, I felt compelled to re-do what I'd lost. I wasn't able to finish but made some progress before making dinner and in between more loads of laundry.

While I ran outside to take a few pictures of the drywall and kids' butts Ainsley was inside making mischief! She decided to get herself some water to go with the popcorn. Unfortunately she turned on the TV room sink and LEFT IT ON. The drain was plugged and there is no overflow. So all I can say is THANK GOD I walked back in to work on my programming and saw because the water was about 2 inches from the top, and it's a deep sink.

I guess she's feeling better. Don-cha-think?!

On the plus side you can see all that stretching I've been doing is paying off and she's standing quite straight. Thanks to Connie (the PT) for showing me some new more effective stretches in addition to the ones I'd been doing.

In the evening Steve did come in and play Wii with the kids. They had a blast.

After opening the flank steak I found it was bad ie. super stinky so I had to drive to TJ and exchange it.... for something "ready to grill" because my potatoes were already done....a pre-marinated fillet Mignon roast. But then the barbecue was not properly preheated and it took a long time to cook and rest so it was a VERY late dinner....but delicious and Steve's favorite (yes American salad with Thousand Island dressing is what he wanted). He's a good dad so he deserved a special meal. 

Evie made him a plant with a "D" for Daddy. No she didn't ask for:
1) the chenille stems (or if she could use my scissors to cut off all the fuzz, leaving a big mess on the patio)
2) the Forget-Me-Nots from my yard (I don't care about the weed)
3) the pot from my potting shelf

...So she lost her IPod Touch for the day. She reminds me of someone I know. Me, at about the same age. I'm trying to teach consequences before it's too late.

We had some good laughs when Steve opened Adrian's gift of a "black piece of paper". Not really. That's the back of his oil pastel drawing. 

I remembered that Ainsley had brought something home from school that she'd made. She was so happy to give it to her Daddy. It was really the sweetest thing ever.

Hope you had a wonderful Father's Day. 

Jun 16, 2012

Frontalis Sling Surgery - 24 Hours Post Surgery

We had a crummy night's sleep. Or at least I did. Steve slept on the couch so Ainsley could sleep in our bed. She has to sleep with her head elevated for the first 2 nights. Her crib doesn't have enough space to do that. Besides she needs care in the middle of the night, especially post-surgery. I think I must have suctioned 30 times last night. Having her in my bed makes it easier, but still....

But I think she slept okay and she was pretty much ready to wake up at 9am. Here she is 24 hours post-op. Wearing the same purple "shirt" because she doesn't have any other button down tops. (We have to be careful of the eyes.) She smiled at me while we were in bed so I knew she'd have a pretty good day. The thing about Ainsley is she heals amazingly fast. We had more smiles throughout the day. She's not "herself" but is on her way.

A few hours later I let her know she could get off the couch if she wanted and she responded right away. I think maybe she thought she wasn't allowed. That helped her mood considerably. Even though she loves to watch DVD's she really is usually always doing something else at the same time. So then she was all over the place doing her usual things.

Playing with Evie and Adrian at our "therapy table".

Playing with Evie's IPod Touch, while Evie was getting ready to go to a friend's sleepover birthday. I'm amazed that Ainsley can use one of these things.

Over all I'd say it's too soon to say what I think about the success of the surgery. Her eyes really don't look any more open that they did but there is a lot of swelling that you just really can't see in the pictures. The surgeon said her eyes were lifted to just over the pupil. If indeed that is true her eyes should automatically be pretty open. With the fascia now connected directly from her eyelid to her brow she should be able to use her brow muscle to lift her eyelids more easily than you and I(who don't have a direct connection). So if she chooses she should be able to fully open her eyes using her brow. When she was a 9 month old baby (prior to that fateful 2nd craniofacial surgery) she used her brow the majority of the day to lift her lids. So I would think that she will again, now that it's been made easier and more effective for her. In addition there is too much swelling to be able to see the results of the canthoplasty. You know I'll be counting those eyelashes (kidding).

This is yet another situation when we must be patient.

Although Ainsley is on her way to healing we will be sticking close to home for a few more days to minimize the risk of infection or injury. With the hours Steve has been keeping at work it will be nice to have some family time.  Happy Father's Day everyone!

Jun 15, 2012

Frontalis Sling Surgery Done

It's a relief to have this surgery done. It will be hard for a few days but already I can tell things are massively better than they were the last eyelid surgery. So I can say now without a doubt that the excruciating pain after that surgery must have been due to the eyelashes being flipped in. If you think about how irritating a single eyelash can be, imagine then ALL your eyelashes flipped inward brushing against your eye every time you move your eye. I'm relieved to know that won't happen this time. Though the swelling is increasing by the hour it shouldn't increase that much.
Post surgery. It's always seems to calm her when I hold her. I think she feels safe.

This was taken about 11:00, 2 hours post op. The yellow is skin cleaner which we were able to get off at home. It's hard to see the swelling. Up close it's a little hard to look at.

Luckily our wheelchair has tilt. So Ainsley was able to lay back some. Love that Rodeo!  We reclined her seat for the drive home. We were so glad not to be inpatient this time.
It's turning out to be a beautiful day. Here is a snapshot of Mt. Rainier as we drove across the bridge. I feel a huge sense of relief that this is over. I'm looking forward to a low-key weekend caring for Ainsley as she recovers. The preparation for this surgery has kept Steve late at work last week and this week. He put in 56 hours in 4 days so he could be here for the surgery and recovery. Evie and Adrian are so excited to spend time with their dad.

At this moment I am lying next to Ainsley in our bed and she is sleeping peacefully. Normally I would see spikes of pain by now so I think this might be a good sign.

I will post recovery pictures as we go. We are eager for the swelling to come down so we can see the results. Thanks for keeping Ainsley in your thoughts.

Frontalis Sling Surgery Started

It's a long process, getting prepared for surgery. Although we checked in by 6:30 it was 8:00 by the time we were walking out of the pre-op area. Today as we sat in the waiting area I felt haunted by images in my head of Ainsley on Steve's knee before her second craniosynostosis repair when she was a 9 month old baby. I went into that surgery thinking that her appearance would be improved and she would look "normal", whatever that is. Little did I know that instead we would start the countdown until this surgery, today, when we will hopefully be "getting back" her eyes.

I lay in bed last night with a lot of thoughts turning around in my mind. My emotions about this surgery vary by the minute. I'm both excited and terrified. I have to remind myself to breathe.

Luckily (or unluckily) we've been through it so many times that I am able to cope pretty well with the pre-surgery anxiety, the procedures, the post-operative care, the consequences if things don't turn out the way we expect. The only thing to do now is wait.

This surgery is outpatient so if all goes as it should we will meet her in post-op, let her wake up a bit, make sure her stomach can handle fluids and formula and then we'll be on our way home. That will be nice. I don't care for hospitals much. I think she recovers quicker and is more comfortable at home.

Here are some pictures of our morning.

 She's a big girl now. She is growing up so much. Normally she is terrified of having her blood pressure taken. This time she held her arm out. I took her back to the OR to be put under and she didn't even cry. It all went as smoothly as if she were an adult. Which makes me a little sad. She shouldn't be so used to all this.

The surgeon marking her lids.

A close up.

I was very clear with the surgeon, NO EYELASH removal. He agreed and said he'd been thinking about it and will try to fix the left eye where the lashes bunch together some other way having to do with taking out a tiny triangle of skin, that I'm going to have to trust will work, so technically in addition to the frontalis sling she is having a canthoplasty too.

With any luck, after a little healing, we will be able to see her eyes better again.

I will update later.