Family Vacation & The End of Summer

After my last post I really hope you all haven't been worried by my silence. After all the eyelid surgery research we went on a family vacation, nothing fancy this year. No airplanes involved. We stuck close(ish) to home which is also better for the budget. After returning from vacation I always feel like I need a vacation from my vacation (hopefully I'm not the only one who feels this way). It was great to be home. I was looking forward to enjoying the final days before school started and intended to put together a nice blog post about our vacation but found myself overwhelmed by trying to choose which of the hundreds of photos I took to post. I was also quite busy doing a lot of medical research and coordinating for Ainsley. There is a lot going on there but I'll have to write about that later.

When I was a child our family spent a week on Orcas Island every year. As a kid year after year it was a little boring but now that I'm grown with kids I can understand what my mom liked about it. Then when Steve and I first started dating we stayed there together. My bachelorette party was there. And we visited since. So there is a history. For once in my life I planned a little ahead and started researching places to stay on Orcas back in March (those of you who are planners probably think this is late, but for me it's e-a-r-l-y). Sadly the cabins were booked out a year ahead. But I was able to snag some weekday camp spots at Moran State Park.  A huge part of the fun (after the 1 1/2 hour drive to Anacortes) is the ferry ride through the San Juan Islands.

We planned this trip with friends. The big kids are all very close friends so this trip was SO much fun for them. My kids had been looking forward to it all summer.

The camping reservation website now has pictures of all the campsites and after some looking around I reserved two spots right on the lake so we could camp side by side. What I didn't realize that the road nearby was actually a highway and not just the 10mph campsite road. So there was some traffic noise but I was okay with it because the kids really loved being right on the lake and being able to go for a dip at the spur of the moment. Nothing is better than camping and swimming in the lake with your BFF.

Everyone went on a hike around the lake while Ainsley and I stayed back. Being unable to walk is hard sometimes. Camping for her means sitting in a chair for days since crawling in the dirt isn't so great. But she was happy to play with her dolls and I was happy to pick up the doll clothes out of the dirt.....for awhile. Then it got old.

We drove up to Mount Constitution. My mom wasn't a big picture taker. One of the few childhood photos I have is of me in this lookout tower.  Adrian wouldn't go up (afraid of heights like his mama) so I didn't get my picture of the kids (just Evie). Wah! All that way and didn't get the photo. That's life.

 Steve stayed below with Ainsley (look close and you can see them). The view is breathtaking.

We spent hours swimming in the lake. Even Ainsley went in. She's quite a little fish for a girl with a trach.

She was SO happy. I love this girl!

One of the best parts of camping, in my opinion, is eating dinner by lantern light and playing Candy Land. It's tradition.

And of course the Smores and roasting marshmallows.

We live in the Northwest but no matter how many deer we've seen the kids are always SO excited to see another.

Ainsley is notorious for crazy bed head hair. She is used to sleeping with a loud compressor for her warm mist collar (which we obviously couldn't bring) the noise helps us sleep. The silence was deafening, except for some critters running through the campsite during the night. And unfortunately Ainsley's noises. We used an HME instead for moisture but it doesn't work as well and she did need some mid night suctioning. Our neighbors thought we were blowing up our air mattresses at 1:00 & 3:00am when we had to suction her, which is kind of funny. Nope. It's just the usual mid night care that a trach kid often requires.  She also rolled off the camping mattress a few times each night and set off the pulse-ox. After two nights Ainsley's suction machine and pulse-ox needed a charge and we were ready to pack up although next year we might try a longer stay and charge her equipment in the ranger's office. We'll see. But we'd come all this way, and two nights on the island wasn't enough. I'd booked a hotel room which was sounding pretty good about now.

We hit the playground on the way out. It is a little heartbreaking sometimes that Ainsley is unable to do things other kids can't. Most of the time it doesn't bother her, but someday it probably will. Like when the big kids ran off to play on the playground and left her behind. Do you see the look of longing?  She reached out for them and signed help. Tear my heart out.

 She can't crawl around in the gravel but she can swing on the tire swing with her brother and sister. So I helped her do that. She was SO happy....until she started to get dizzy but she still kept hanging on. That's a new one for her vestibular system.

Finally it was close enough to check in time at the hotel. It was a bit overpriced for what the rooms were like, basically you are paying (a lot) for the convenience of being right in town. It's a historic hotel that could just have easily been built in the 1980's based on the decor. I was so glad I'd decided to book one night instead of the two I'd originally wanted.  But it was GREAT to get cleaned up. Only I wish I'd made sure they had a bathtub. It was quite a trick holding a heavy slippery disabled and trached kid in the shower.  It's not something I want to do again.

Our friends had gone on their way, and it was nice to have a day to explore and shop around the town (actually I was corrected it's technically a village). We ate twice at the same restaurant. The breakfast was fantastic and what a view! Adrian shoveled in more pancakes than I thought was possible.

I know you wanted to see a closeup of that Mermaid Crossing sign.

The kids had their first ever gelato (I guess we don't get out much.).  Surprisingly Ainsley wanted a taste and seemed to like it which is odd because she doesn't like ice cream and it usually makes her gag.

Orcas has a lot of interesting art around. Hanging from the trees. In the street. In the shops. I loved this box turtle that just happened to be on the sidewalk. I thought it was cute that the kids were standing on it. Then after I took the picture I noticed it was for sale for $6000. Quick! GET OFF THAT TURTLE!

They also have cute shops with interesting things to tempt the tourists. I actually got a few clothes and things for me which I never do. Steve was VERY happy especially that I got a cute pair of shoes. I guess he's tired of seeing me wear the-same-old-stuff.

The kids begged for a new stuffed animal and we gave in (guilt from growing up on the poor side) so I felt I had to pick something for Ainsley or it just wouldn't be right. I loved Raggedy Ann as a kid so that's what I chose. Ainsley was SO excited and happy! She just kept kicking her little legs with excitement. Now Raggedy is going everywhere with her.

The village is small. We were able to see it all in a day, had dinner and headed home on the ferry afterward. There was an almost full moon. It was beautiful. 

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The following day we took the kids to the zoo for the afternoon. Late but better than never. (Thanks grandma for the annual zoo pass!)  The zoo is one of my favorite places to take pictures. I think it's every Seattle family's tradition to take a picture with the baby elephant statue.

We even dared to let the kids hold Ainsley up so she could be in the picture this year. With three kids in the dark of the bushes, one of them (guess who) being grumpy, this is about as good as the photograph is going to get.

We also saw the usual suspects.

  As well as......

The odd and seldom seen tapir.

The kids' favorite, the penguins. Steve got to see the new exhibit for the first time and was impressed. The old exhibit was VERY old. Grandma had donated some money for the building of it and so the kids' names were inscribed on little fishes outside the exhibit. We had fun searching for them.

We got to see the meerkat exhibit for the first time. The kids had been looking forward to that for months. What a cutie.

And they were extremely happy that the zoo kept the bats. They had been devastated when they learned the zoo had closed the night exhibit. It is easier to get pictures now that their cage is not pitch black.   I think we can thank Evie's 2nd grade teacher for their love of bats.

This past year has been so busy. We used to get to the zoo more often. I hope we'll go again soon.

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The grand finale' of our vacation was the circus! Back in May we all made lists of things we wanted to do this summer. It was Adrian's idea to go and we just got lucky to find out ahead of time that Ringling Brothers and Barnum and Bailey was going to be in the Seattle area.  Despite the PETA protesters (including a poor 10 year old kid who I felt very bad for) we had a great time. The animals looked very well treated to me. The show was pretty spectacular though not exactly the way I remember it as a child. My dad took us once and my recollection is that it was not nearly as flashy then. Though back then they did let you pay to ride the elephants and that is something I'll never forget, the feeling of coarse elephant hide and hair between my legs. My kids are very impressed that I can say I've ridden an elephant.



We decided to splurge since this was our vacation and got front row seats. The unobstructed view was fabulous for picture taking. Here are just a few of the pictures I took.

 This is the beginning of the show. I don't know why I like this shot so much but I do. The ring master was great!

Considering Ainsley's fear of people in costumes I was a little worried front row seats would be BAD. But she surprised us by being pretty interested and not scared at all. Luckily there was a low divider wall. I think it made all the difference.

 Even the clown didn't scare her. 

The mermaids in the parade were beautiful. 

The tight rope walkers going up an incline. No net. Yikes!

The Torres Family motorcyclers: riding 7 motorcycles inside a 16ft steel globe. 

The contortionists were a little too close. But WOW!

The trapeze artists.

I believe that's 9 tigers in there.

The dog walking one of the elephants.

 I think the confetti at the end was almost the most fun. It showered down on us like rain.

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We tried to enjoy the final days of summer despite the rain and the kids headed back to school on Wednesday. Ainsley starts on the 20th.  I love the summer but I'm ready for fall.

Well I guess you can see why it took me 3 weeks to write this post.

I Am Tired

Do you ever feel emotions that you can't make sense of? Sadness. Defeat. Resignation. Discontent. Ill-At-Ease. Confusion. Fatigue. All of these at the same time. Having a child that is "unique" is hard. I just want to know what is best for her. I'm tired of hearing "Ainsley is teaching us about herself."  (Which I've learned BTW is simply doctor speak for "I Don't Have A Clue"). Every time I think I have come to a place of acceptance I am reminded that it is not 100% so. My inner thoughts frequently lead me searching on the internet with a new idea that might be "it."  IT is never IT. Ever.

My newest IT was Dr. Kami Parsa a surgeon in California that I hoped would be able to "fix" Ainsley's eyes or at least tell us what to do. We had a Skype appointment with him this morning. I laughed when they apologized for being 5 minutes late. If only they knew how many hours I've sat in waiting rooms, actually added together it would be days.  I was amazed when he offered this service of an appointment using web cams over the internet. A real doctor is doing this???! I nervously anticipated the appointment but it turned out that when he called he could see us, but his camera was "broken".

Still I recognized his voice from his many videos on YouTube. I figured any surgeon who would perform ptosis surgery and post a video of it on YouTube is extremely confident in his skills. He also comes across as a very caring physician. I liked his website and was especially impressed with his before and after surgical pictures. There were videos of him on the news, CNN, ABC, NBC etc. When I contacted Ainsley's plastic surgeon (who happens to be Chief of Plastic Surgery) he could not recommend Dr. Parsa because he doesn't know him or his work. Still, I felt good enough about this man's credentials to trust his opinion. Over the past month or so I've been in contact with his office.  Although I admit I found it a little bit odd that his assistant was named Marie Antoinette. This is LA so I just decided to ignore that although I did almost delete her e-mails thinking they were spam.

He'd seen all the before and after pictures (before she opened her eyes at birth, before the forehead reconstruction at 9mo age when the ptosis wasn't as bad, pictures of the swelling immediately afterward when she couldn't open her eyes, then at 1 and 3 months post-surgery when it became clear that her ptosis was quite a bit worse, as well as before and after the eyebrow prosthetics in January of this year). He requested additional photos of her eyes in different positions, looking up, down, left and right. We had a ton of fun getting those, using tape so he could actually see the eyeballs and not just the lids.

Not really fun, nope. This type of stuff is the "behind the scenes work" that goes with having a medically complex kid. Part of me hoped he'd tell us to hop on a plane next week. Of course he didn't. He surprised us by saying that though he could perform surgery on Ainsley if we chose, that she would require a lot of follow-up care and it was his opinion that it would make the most sense for her to see a local oculoplastic surgeon (the type of surgeon he is). This isn't the first time we've been told by a specialist that due to the complexity of our daughter's care we would be best off treated locally. He couldn't say exactly what surgeries he would perform unless he examined her in person. I'd hoped for more but that made sense and I wasn't really surprised.

What he did say that is most discouraging considering that he appeared to be a cutting-edge type surgeon is that he would NOT do the tarsal switch procedure that was suggested by the surgeon we'd been planning on using. His feeling is that it is an outdated procedure and there are better ways of doing the same thing.  And I almost forgot to add that he said perhaps surgery should not be done at all if it's not affecting her vision, (which it seems not to be though I do have another vision check scheduled for December to be sure). It turns out the other surgeon is an oculoplastic surgeon after all, and he was recommended by both her local opthalmologist and plastic surgeon, both are Chief of their department at Children's Hospital.  Her opthalmologist said HE wouldn't consider removing part of the tarsus but would okay the other surgeon to do so if he really wanted to. (Although it took a long conversation to get him to say that. But then he's a self-admitted conservative and wouldn't even do Lasik eye surgery.)

Where does this leave us? Confused. With doctors of varying opinions and no real idea what to do. We'd been planning to have this surgery done in September.  The hope was that we could be done with surgeries this year since all surgeries need to be done before we take any steps toward removing her trach. Now do we try to find a new oculoplastic surgeon without a recommendation out of the directory in order to get a 4th opinion?

The eyes are extremely important and delicate. We read a lot about people through their eyes. You don't want to make the wrong decision. I truly believe that people, including doctors, treat her differently because they can't connect as easily to her eyes. Yes she can see, and we are grateful for that. But we want more. We want our daughter to be able to fully interact with people. We want them to be comfortable looking into her eyes. We want her to be seen.

**The benefit that comes with having a medically complex kid is that you toughen up with time. Maybe that's good, maybe not. But it's how we (or I) survive. Unlike in the first years following Ainsley's birth I now bounce back quicker. Yes I'm still confused about what to do next. But a day later I'm feeling much better, I e-mailed Dr. Parsa again with a couple questions and we will be thinking things over as well as seeing Ainsley's plastic surgeon in September. Hopefully the right surgery and path will become clear. If you pray, pray for that. Since the doctors don't agree we need some additional guidance from somewhere.

*** I think I might have said this in a prior post in the past but should probably have said it again. The surgeon does not have any photos of the tarsal switch procedure. (This was perhaps the red flag that prompted my internet searching when I asked to see before and after photos and he had none and I could barely find any on the internet.) None of the surgeon's have kids' pictures available for viewing because of privacy issues for minors (normally they block out the eyes but you can't do that with eye surgery pics), so pretty much you have to base the decision on their surgical skill on adults with different (perhaps somewhat similar) conditions and what sounds like a logical approach. Because Ainsley is unique there are presumably no other cases "like hers" (Few kids have had their foreheads rebuilt , and happen to also have congenital ptosis and need work on the lower lids.) but it would be helpful to be able to see the surgeon's pediatric work. 

The Year of the Yard

It was my mission to clean up our yard this year. There were times over the past few years when I found weeds that were as tall as I am. Or perhaps it was when Evie turned 9 and I realized that we still hadn't built the playhouse we'd intended to build when she was three. Whatever the reason, we decided to do it. It was no small job. But with the help of a professional gardener, and many weekends spent weeding things have turned around and we can really enjoy our yard for the first time.

Since we'd taken a big trip to Disneyland last year we decided to stick close to home this year (though we will be going camping on Orcas Island later in August) and use some of the money we would have spent on a trip to buy outdoor furniture, specifically a double chaise lounge. What I really wanted was a comfortable place in the shade that I could read to the kids. After much searching for ready made cushions we decided to order custom cushions off the internet. I counted down the days waiting for them to arrive. Lucky me, the day they arrived I had nothing scheduled and the weather was nice (we've not had great weather this year).

Or that's what I thought. Before I got them out of the package we found this.

A newborn baby bluebird laying in the middle of the patio! It was incredible to see it fight for life. Since it hadn't got its feathers I swear I could actually see it's heart beating and lungs breathing. It could lift its head even though it was obviously a struggle. He moved his little wings. I knew it was unlikely to survive but boy did we try. How could I not?

We built a nest for it since we could not find it's nest anywhere. Perhaps it was dropped by a predator. We attached it to the bush near the birdbath, using twist ties, hoping it's parent would find it. But it wasn't to be. After a few hours I was amazed this little guy was still hanging on. Against internet advice we gave the baby water using a dropper. It was amazing to watch it's beak open eagerly for that water. Perhaps it was too much for it, the baby passed on shortly afterward. I felt terrible but hope that we gave it comfort and he felt cared for in his final hours. He earned his place in our family plot, next to the baby mice (rats) we tried to save a couple years ago. Alas, the day was gone. My day relaxing in the shade was not to happen.

We have had some happier times in the garden. Picking zucchini.

 

The kids learned that zucchini is covered in little prickles. They actually hurt a little, but rub off easily.

I wish Ainsley could have come out with us to pick them, but since she can't walk or stand it is just too hard. She hates getting her hands "dirty".

 

 Despite my best intentions I never did make zucchini bread.

But we did grill all but the biggest one. If you've never tried grilled zucchini you don't know what you're missing. Just slice it about 3/8 - 1/2" thick, coat with olive oil and sprinkle with kosher salt. Place directly on the grill for a few minutes on each side. Mmmmmmm.

It's been fun for the kids to grow stuff and eat it out of the garden. So far: blueberries, herbs, peas, lettuce, green beans, zucchini, raspberries, strawberries (a few), a single cherry (we got bugs). Yet to come: tomatoes (if the weather improves), apples and pears (if the bugs don't get them). We aren't yielding much in the way of quantity, but it's enough.  That's enough about fruits and veggies.

The size of the double chaise makes a wonderful, comfortable and safe place for Ainsley to play outside. She's really into playing with her dolls lately.

 

And wants to take them everywhere with her, even to bed. Sweet!

We added a 5th chair to our outdoor dining set so Ainsley officially has a place to sit with the family when we eat outside.....But this is what she likes to do in it. Check out that look on her face! She knows she's not supposed to do that.

I love to see my man using power tools!

Steve built a ladder. The kids have access to the tree house again. Our neighbor was upset by the kids walking on the hillside that borders our properties. So this summer we had to derail plans to finish the tree house and build a fence instead. And that meant removing the original ladder. Of course that didn't stop the kids from climbing the trees to get into it. Nor did it stop the neighbors kids from doing the same thing. I feel much better now knowing they have a safe real ladder. It's looking like the tree house won't get finished this summer. Next year, right?

I really do love that Ainsley doesn't have to sit on the stone and has a comfy place to play. Last week she got the circle shape into the shape sorter all by herself! And the triangle with a little help.

After so many inflatable pools were punctured (by raccoons last year) we finally decided to get the metal frame type. It's a little ghetto and takes up the whole patio but the kids sure love it! They can actually swim in it.

Of course Ainsley likes to get up close and watch. Darn that girl. This is her new "Oh NO, I'm busted!" face. I'm seeing a lot of it lately.

She really is getting to be quite a monkey!

We made a zen fountain. The kids placed river rock in the bowl. Looking at the water running over the Buddha's head is calming. I need that.

Now the only problem is we need some better weather (it's been cool and rainy) and some time to enjoy it. We've started some new therapies and have been shopping for wheelchairs. More about that later.

I hope you all are enjoying these final weeks of summer.