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.

UNBELIEVABLE!

I couldn't wait to share this one. Last night I was on the computer and Steve calls me urgently "Ainsley climbed up the stairs!" I jump out of my chair and peak around the corner. Sure enough she's on the 4th stair.

 WOW!

She's pretty impressed with herself.

But then what to do?....

It took every bit of my self-control not to rescue her from that spot. Worst-case-scenarios flashed through my mind. But instead we cheered her on. I figure if she was able to get up 4 by herself then she just might be able to get up the last 7.

 With a lot of effort and determination she takes them one at a time.

 Don't look DOWN!

 For a moment I thought she wouldn't be able to continue.

But then she does it! The final stair!

 Big congratulations were in order for such an awesome achievement!

She points to the stairs as if to say "Look what I did!"

The cheers and applause were deafening! YOU GO GIRL! Show us what you've got! This night we taught the meaning of the word PROUD!

To Camp and Back Again Giggety Jog

The savvy bloggers out there will probably notice that I backdated some posts. Sorry to do that, but things have been crazy busy with no time for blogging lately.

Sunday July 18th was Adrian's 7th birthday and we shipped him off to Harry Potter camp with his sister for a week. (It was the only week that Camp Colman does "Harry Potter camp" so I had no choice about it being on his birthday.) We celebrated by opening presents the day before so he could open and play the LEGO Harry Potter Wii game before he left.

Yes that's Harry on the cake.

Ainsley inspected and considered the ice cream cake.

I helped her say "I love you Adrian" using her AAC device.

Look at my cutie! So growin' up goin' off to sleepover camp for a whole week. Wah!

We drove them, and were late. If you ever send your kids off to camp do NOT underestimate the time it takes to tag EVERY single item they take with them. Do NOT listen to your husband who at 1am says oh don't worry, let's go to bed, it won't take that long. It'll be FINE.  In fact if your husband says It'll be finnnne, in "that" tone, you know it most certainly will NOT BE FINE. Anyway.....

On the way...it's a lonnnng drive. Ainsley discovered a peppermint in her booster seat. The kids (E&A) kept asking "What'd she find?" "What is it?" Their jealousy enthusiasm must have sparked her interest because she tried it. And tried it again, and again. So now we might have finally found something that she likes the taste of, though she rejected the candy cane from Santa for the past 3 years, so it's probably too much to hope for.

Gingerly at first.

Showing Evie and Adrian what SHE was lucky enough to find in HER seat. Oh man, sometimes I wish she could speak just to know what would come out of her mouth.

Mmm. Yeah, this is pretty good.

The kids were sorted into houses. My kids were both in Slytherin. Booooo!

The camp map, it's a huge place on some beautiful land.

A view across the lake, with the camp lodge in sight on the hillside.

The beach where they had campfires. And nighttime duals with death-eaters?! Who let these kids go to this camp?!

A cool out building.

The color on these trees was just amazing.

But alas, no beautiful scenery for us. Steve took the week off so we could repair our kitchen floor. Ainsley had, not once, but twice got a splinter shoved all the way up her big toenail. Poor girl has such a pain tolerance she really didn't complain (until I pulled them out of course).  Obviously this was unacceptable and since the floor is fir and badly damaged, and so old and thin it can't be refinished we opted to paint.

 

A couple boards had to be replaced which took some time and special tools. Plus 3 coats floor paint and 2 coats clear floor finish. It took us the entire week, and we got little else done. Well, okay Steve finished the backyard fence, we cleaned the basement carpets and cleaned behind the 200lb range for the first time in 10 years. Yu-ucccck! 

Our nurse picked up an extra shift, so that helped but when she wasn't here we put Ainsley to work to keep her busy. Just kidding. That paintbrush is dry, though she thought it was fun to pretend. One kid while you're working is still easier than 3. It wasn't fun but it's a huge relief to have a safe floor and it looks really good, but then I like the look of a painted floor.  The furniture is not quite back in place. Maybe toward the end of the week when the floor's had a chance to harden.

We picked up the kids Saturday morning.

Ainsley is so loved. She did fine in their absence, but I think she was excited to see them.  They are entertaining, for sure.

And the goofiness begins before they're even in the car.

My grubby little campers. I was working so hard I barely had a chance to miss them. And they were having so much fun I think they barely had a chance to miss us. They immediately said they want to go back next year. If they do I hope we get a REAL vacation.  Cross your fingers that Adrian forgets that I didn't throw him a birthday party.

Another Great Speech Therapy Session

We had a great second session with Pam today. I feel so fortunate that she agreed to see Ainsley. One wonderful thing about Ainsley is that she learns quickly and remembers. It was clear right away that she remembered the games we played with Pam the week before.

One game/activity was to say the animal sound for each animal on the pages of a book. Ainsley can't even come close to making animal sounds so past efforts trying to to get her to do so were completely unsuccessful. Basically she wouldn't even respond so I stopped trying because I knew it was hopeless. Pam noted that she would verbally "shut down" when asked to make sounds/say words she knows she can't. With Pam the goal (for now) is just to make the sound she can, which is kind of an "Ahhhh. " Ainsley knew that is was okay to make the sound "her way" and so she did, OVER AND OVER and OVER AGAIN. Pam would clap every time. It's goes like this:

Pam: "What does the cat say?" (pointing to the picture)
Ainsley: "Ahhhh"
Pam: "Yea!" (with clapping)
Pam: "What does the dog say?" (pointing to the picture)
Ainsley: "Ahhhh"
Pam: "Yea! (with clapping)

This repeats through the 10 or so pages and then she starts the book over again as many times as Ainsley maintains interest.

Pam had her listening to her own voice using a tube and stethoscope and suggested making a whisper phone using PVC pipe, which we did and Ainsley LOVES. The idea is that listening to the voice draws attention to what the child is saying. And it's fun and encourages a kid to use her voice. Great ideas, huh?! 

The other activity she did was have Ainsley call toy animal figures to her. Each time Ainsley called them with her voice the animal would come a little closer until it eventually reached her. Then Ainsley gets the animal, and gives it to me and into a pile it goes. She loved this game and again the goal is increase vocalization and use of the voice. The activity makes using the voice fun and therefore encourages more use of the voice. Such a simple idea, yet it works. I think we've made more progress in the weeks we've been working with Pam than years of traditional therapy. Although to be fair, Ainsley didn't have use of her vocal cords for her first two years.

It's amazing to watch Ainsley be so incredibly vocal during the hour that we are there. And it has carried over at home. In addition it seems like all the practice is paying off. She's starting to make some consonant sounds. She can't make them on demand, but it's great to see the beginning of her using her lips and tongue to change sound. Even though she uses her vocal cords to produce intonation, she's never used her lips and tongue.  Pam observed her eating. She gave the suggetion of allowing her to dip a tube into her "tastes" of food in order to get her chewing because it's during chewing that kids make sound and figure out that moving the jaw changes sound. Ainsley isn't ready to chew real food, but she can chew on toys. So we're going to be pushing the chew toys. And we've actually seen Ainsley start to close her mouth rather well around a spoon over the last few weeks so we're going to try to push feeding a little harder again.

Of course the progress toward true speech will likely be slow. Ainsley does have a malformation of her cerebellum and a trach. I'm under no illusion that it will be easy. But I have more hope than I've had in a long time. We will still be working on sign language and using an AAC device. It may be years before she can be understood by the average person. But honestly I'd be happy if she could verbally answer yes and no questions and say a few words. At least for now.