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!

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. 

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!

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.

Happiness Week 23

We had a crazy week: Two ophthalmology/surgery appointments to discuss Ainsley's upcoming eyelid surgery, a follow-up with Ainsley's local otolaryngologist to discuss the Cincinnati trip (he's going to do a T&A surgery on Ainsley in July), physical therapy, Adrian's last baseball game, Evie's dress rehearsal and ballet recitals (2), a couple play dates with new friends, a birthday party(and one we couldn't make it to, sorry), a school dance and the kids were in a play (The Adventures of Mona and Delia). Aside from all this Steve's new job requires he works 60 hours per week. So when he wasn't doing these things with me he was working. Which means I was pretty much flying solo and even though he's the one earning the paycheck we've both been "working hard".  We're all pretty exhausted and are ready for summer break which will be here soon.

This Friday the 15th Ainsley has her eyelid surgery. After our appointments last week I felt much better about it. Though I admit I'm getting a little nervous again. The hope is that this is the last eye related surgery she will need, keeping in mind that her eyes cannot be restored to their prior appearance. The brow prosthetics and tarsal switch were all in preparation for this final surgery, the frontalis sling, and soon we will see what we've been waiting 5 years for. Please pray for positive results and that the surgeon really hears me when I say I don't want any more eyelashes removed when he fixes the corner of her left eye(from the last surgery).

I hope you have a good week, whatever you are up to and that you find your own moments of happiness.

Daily Happiness Photos - Week 23

06/04 Hot Chocolate

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Sometimes (a lot of times, actually) it really is the little things. I love that hot chocolate can make my kids so happy. We keep a family size tub in the house at all times so I'm always prepared. It can turn a bad mood around in a flash.

06/05 A Happy Patient

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After everything that my dear Ainsley has been through I think it's some kind of miracle that she can be such a happy patient. You really wouldn't know that she was here to see the man who cut her eyelids apart a year and a half ago. Sometimes my heart aches for all she has suffered through but I am eternally grateful that she is still so happy despite it all. And I was also quite proud that she was able to climb up into the exam chairs by herself this week. And she knew she was supposed to sit there. And she was proud. Rightly so!

06/06 Fun and Effective Physical Therapy

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Ainsley's been in therapy since she was 4 months old. Seriously. It's been that long. We've had some great therapists.....and a few who drove me a little crazy. After many months of making arrangements we are seeing someone new through Children's Hospital (in addition to the OT/PT & Speech that Ainsley gets at school) and she's great. Ainsley's been having fun and that makes me happy to know we are working toward some functional goals (like standing and getting her legs to straighten) but are having fun while we do it. Although she missed most of the time she did get it in the bin a couple times. Yay Ainsley! And I managed not to be late and even got there early this time. Yay me!

06/07 Vegetables

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I guess I'm really weird because I really like vegetables. A lot. If they are around I eat them happily but for some no good reason I've lately been out of my habit of always having them ready to eat in the fridge. Even the kids will eat them if they are there. I'm going to get back in the habit. Now.

06/08 Clever Home Therapy Solutions

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 Ainsley's PT wants her to walk around on her knees. We are so super busy that the best home "therapy" is worked into our daily routines so that it is naturally built into our days(like leg stretches during diaper changes or oral motor during dinner, etc.). I started a new routine. Ainsley loves to watch Netflix (Curious George, Kipper or Calliou) when she gets home from school. After a busy day I think she deserves a little down time.  I picked up some Beanie Babies and a case at the GoodWill for therapy and every day I'm making her walk each of the animals across the ledge into their case. Ideally I'd like her to make the animal sound while she does it but she's not quite there yet but she is able to identify the animal sound. For example, I ask her to take "the one that says oink", and she'll walk the pig across. When she's done walking all the animals across she gets her video and boy is she happy. 

06/09 Ballet

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When I was little I wanted to be a ballerina. If you want to know a secret I still dance around the house sometimes when no one is watching, which is a little embarrassing for a woman my age. When I found my birth  parents as a young adult  (I was adopted) I found out that my birth mother danced ballet for many years and so did her mother. I regret that as a child I was allowed to quit lesson after one season. Evie started begging me for lessons when she was 2 and was enrolled as soon as she was old enough, at age 3. Now that seems crazy and I can't believe she's been dancing for 8 years. Can that be right? Seeing her up on stage makes me so happy and proud. 

06/10 Another Play With Friends

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Two summers ago we (read Evie) had the crazy idea to do a "theater" summer camp at our house with some of Evie's friends. Evie wrote the script for the play based on the movie and directed the actors(with a lot of help). During that week the kids rehearsed and made props and picnicked on the grass.  Some of those friends have gone on to make their own plays. Even though we moved to the eastside they have included Evie (and Adrian) and it's been a great excuse to get these friends together for rehearsals. As the group moves on to middle school I hope they will always remain friends and look back fondly on these experiences.

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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.

Happiness Week 22

It is good to be home and get back to life as usual. I'm digesting the news from our Cincinnati Trip and walking the fine line between acceptance and fighting for what I believe is best for my child. Years ago I decided to accept that fact that Ainsley is always going to have challenges, may always require my care, and may never be able to get rid of the trach. And even though I am okay with that (because I have to be, the alternative is to suffer in unhappiness) I still feel the need to look at our options and get her the best care possible.

A dear friend from the trach forum contacted me and shared with me that their doctors (including Dr. Cotton) didn't think her son would ever speak and maybe never get his trach out because he was born without vocal cords and that area was pinched nearly shut, a very rare birth defect. In addition he had a reactive airway. Her persistence and willingness to do whatever it took(combined with the doctors' expertise) got them there and today he is living trach free and talking up a storm. Of course even when two kids share some similarities they are different cases. It does show, however, that doctors don't always have the answers and sometimes things turn out better than they expect. I am a practical person. I like truth. Give me real hope over false hope, I have no use for that. How can you tell the difference? Well that is the tricky bit now isn't it?! I wouldn't say I have hope so much as I am willing to take steps as if I do.

Where we are at right now is waiting for the Cincinnati ENT team to call with their final recommendations. We rescheduled our appointment with our local ENT for 6/8. He was nice enough to agree to see us on a day he doesn't normally see patients. He's otherwise booked out for months. Doctor Cotton mentioned a T&A surgery of not just the normal tonsils/adenoids, but I believe the lingual tonsils as well. I think that is the first thing to pursue, and then we'll be back to our favorite game of waiting. It should help her airway, just probably not enough to eliminate the need for a trach. If nothing else perhaps it would help her swallow, which really is the main reason the surgeons don't want to do surgery, because she could aspirate and that would be harmful to her lungs. But it may not. One step at a time.

The GI team from Cincinnati called. The impedance probe reports came in and Ainsley does not have reflux. Not only was it not acidic, she only had 5 recorded events and NONE of them went up to the airway. That means her Nissen Fundoplication is intact, just like the endoscopy seemed to show. That is good but also bad because it means remaining airway swelling is likely NOT from reflux. That leaves us still wondering about the cause.

In addition to sorting out her airway situation we have pre-op appointments for her eyelid surgery this week. I am nervous.  In addition to the medical stuff it is the end of baseball season for Adrian. Evie has her ballet recital, and she is performing a play with her Seattle friends. In addition we have several play dates and a birthday party or two. Whatever you have going on this week, I hope it's more relaxing than my week will be.

Daily Happiness Photos - Week 22

05/28 Having A Swing Set

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Yesterday we were in Seattle at a friend's house, an old charmer with a beautiful garden full of fruits, veggies and herbs. It made me a bit homesick for our old house. As beautiful as our house is I LOVE old houses. One thing that we didn't have at our old old house is a swing set. Most city yards don't. So rather than feel sad about what we've given up I am choosing to focus on what we've gained. I am so grateful that my kids have a swing set that they can use any time.

05/29 Deleted E-mail

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It's not fun but has to be done, going through and deleting e-mail. Yep, you see that right. I was able to delete 14, 317 e-mails today. It took all day to sort out the ones I didn't want and restructure my folders. Hopefully my new system will help so I can be better at seeing the important e-mails and not "losing them". May was my "This and That" month. Tackling some of the items on the to-do list that tickle and irritate the mind because they never get done.

05/30 A Good Dad and Husband

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I am really lucky to have a good husband and father for my children. He's not perfect but neither am I. Raising a special needs child with medical issues is tough. It's amazing we've held things together as long as we have, and we aren't just surviving we are thriving. My husband works hard. He helps out. He makes time for our kids. We are lucky.

05/31 Evie Not Being Too Old For Bath Crayons

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The years pass too quickly. Evie is on the verge of turning into a young woman and that makes us a little sad at times. Of course she'll always be my baby. Today she wanted to take a bubble bath and draw with bath crayons. I have great pictures of her standing in the tub having written her name in bath crayons when she was like three. Today I loved that she's not yet too old for bath crayons.....even if she was listening to Taylor Swift on her IPodTouch at the time.  Of course her drawing made me teary-eyed. It was a moment I won't forget. 

06/01 Interesting School Programs

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The kids have a watershed near their school and some amazing parents have worked hard to create a whole learning program around it. Each year the kids learn something different. I got to go along with Adrian's 3rd grade class into the woods to explore the watershed. We attempted to find macroinvertebrates i.e. buggies but didn't (that was okay with me). Instead we caught a couple worms in our net and the boys found a couple small salmon. I love any type of hands on learning that makes science interesting especially when it teaches about the importance of our environment.

06/02 Delivering the Impossible

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Evie is doing another play with her friends from Seattle. Last week we were given the task of building a boat prop out of cardboard. In my spare time. Somehow I delivered the impossible and here it is. Actually it turned out better than I expected and wasn't as hard to do as I thought. It's just two simple boat shapes sewed together with twine.

06/03 Goofiness

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Around here sometimes creativity gets the best of us and things turn goofy. Just in case you get hungry there is a hidden snack compartment in this hat. The straws puff up the balloons.

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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.