Aug 20, 2010

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. 

Aug 10, 2010

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.