Jan 26, 2010

Anatomy Lesson

With a sister like Ainsley we have a lot of medical jargon flying around in conversations at our house. What's a brother to do?

Actually I'm kidding, I can't take credit for this other than he's my kid and I filmed the performance. Adrian's Kindergarten teacher (who is an amazing song writer and educator) wrote this song and taught it to the kids last year. Although during their studies of human anatomy I did participate by visiting the class (both with and without Ainsley) to talk about how not every body works in exactly the same way. It was great. We talked about ways that people's bodies might be, look or work differently, such as how it is common that some people need glasses to see, a hearing aid to hear, or a cane to walk, less common differences such as people that are deaf, blind, in a wheelchair, use a walker, are born with different body parts or just look different, people that use a tube to eat or a tube to breathe, like Ainsley. I could go on. There are too many types of human differences to list.

Last week when kids on the school playground were staring at Ainsley a friend said to me that kids "in this demographic" aren't exposed to or have children like Ainsley. What the hell does that mean?! It is ignorance that people think that birth defects happen to a certain type of person. In fact 1 in 33 kids is born with a birth defect. Yes that's right, click the link! And birth defects happen in every race and class of people. 1 in 625 people are born with a balanced chromosome translocation, the chromosome difference that Ainsley has that is likely the cause of her birth defects. Incidence of craniosynostosis are actually relatively common at 1 in 2,000 births. Again, I could go on, but hopefully I've made my point. To have birth defects is not an uncommon as some people think.

At one time we had only planned on having 2 children. If we had stopped there we would be among the smug who count themselves as producing genetically perfect children. The reality is that if you find yourself in that group you are just LUCKY. Now that I have a child who is not "typical" I know that I am STILL LUCKY because having a child like Ainsley teaches you a lot about people, about what is important in life and that ultimately we are all different and all the same and that all human life is valuable. AND that...by the way....it's not nice to stare at people who look different. But actually, you really don't have to have "special child" to know that one.

Jan 15, 2010

Pucker Up

I'm sure one day she will hate me for sharing that one, but for now I thought it was too dang funny to pass up.......

.....but this is the real thing I wanted to share.....

My baby girl (yes I know she's 3) learned how to kiss with her lips together yesterday. This is a new skill (Thanks to Adrian for noticing before he left for school in the morning.) I'm sure we'll still be the recipients of a few sloppy wet open-mouthed kisses yet but she's on her way to figuring it out. I think she also says uh-uh in the video. Although I've heard what kind of sounds like up (uuuuuu for weeks), and I think she's come pretty close to saying "uh-huh" (yes) and uh-uh (no), all in context. Wha-da-ya think? Does this count as her official first word?

Jan 12, 2010

She's Back to School - Life Returns to Normal

She went off on the bus at about 8:20. The house feels weird when she's not home. I can't get used to the quiet of no trach breathing and no worry over whether she needs suctioning. Then the big kids leave for school and it's QUIET. I can hear the ticking of the clock and time seems to stand still. I hope we can get back into the groove after such a long break and she can get in some good quality school and therapy time before she heads into the next surgery on February 8th. She seems to be really picking up on a lot lately and is doing more physically I'm excited to see what school does for her. Thanks everyone for your support during this time! It means a lot to know how much you all care. And we appreciate the comments.

Jan 11, 2010

Giving New Meaning To "Bad Hair Day"

I guess this means her head doesn't hurt. I bought this little hammer today. I thought this would be a good toy for her for increasing her grip strength and to encourage pounding, it lights up and makes sound. She likes it and is pounding everything. Being silly I hit myself on the head with it and then she decided to copy me. Yikes! She had no pain meds today. Not even Advil. She didn't even complain when I washed her hair later. She's over it and moving on!

But I didn't send her to school because I kept her up late shampooing her hair again. I tried Joy. Shampoo, rinse lather repeat, rinse lather repeat, rinse lather repeat.... but it didn't work and her hair was as greasy as ever. But I had to try. Besides, I wasn't sure our nurse would feel comfortable showing up at 8:15 and jumping on a bus with her given that it wouldn't have even been 4 days since the surgery. I think it was a good call. She had a great day at home with Carmela and was super busy and happy. Plus, something HAS to be done about that hair.

Tonight I gave her yet another bath. Have I mentioned how much she loves baths? She can hear the bath water running from any room in the house and will come "runnin" to see if she can get in. Or that aside from taking baths her favorite thing to do is throw the bath toys that we keep in a tray under the clawfoot into the tub? Tonight she was so excited she was standing on tiptoe and even lifting her leg to stand one legged for a second. If she gets much taller she might fall in (don't worry we'll keep an eye on her).

This is what I was trying to fix:

Gives a whole new meaning to the term "bad hair day" doesn't it? Again, this is Bacitracin the hair is not wet and has already been shampooed 10 times. And seriously, it was like she grew a Brillo pad on the back of her head.

I went to the store for Dawn. My friend Janis says this is the dish soap they use to wash birds that get stuck in oil spills so I figure it's my best shot. I agonized over the 7+ different formulas, opted against "with odor eater", "with bleach alternative" three scents to choose from, hand soap (why is Dawn making hand soap disguised as dish soap?) two scents to choose from, or Dawn with Oil of Olay two scents to choose from. I wanted to scream. Although I questioned the decision we went with the original bright blue formula. I figure massive amounts of dye are better than bleach or whatever chemical eats odors and who knows if the hand soap variety is up to the job. And I suspected the Oil of Olay version might add oil, not worth the risk. If the security people were watching me I'm sure they wondered why it was taking me so freakin' long to pick dish soap.

Rather than wet the hair I put massive quantities of soap directly into her dry hair and scrubbed and scrubbed, combed and repeated, being very careful not to let it get in her eyes. And it mostly came out. The area where the drain was is a bit swollen so I didn't want to rub too hard and that area is still a bit greasy but it's good enough that she can go to school tomorrow without shame. And luckily all that dye did not turn her incision blue.

Jan 10, 2010

Day Two/Three

My girl has been through SO much. The only thing I can figure is that it's given her super-human strength. If it weren't for the hospital gown and headscarf would you know that this child had just been cut across the top of her head from ear to ear and had her forehead peeled back to reveal her skull and then had plastic parts screwed to it?!

How about this kid? Pulling up to a stand repeatedly to throw toys over the arm?

Or lifting an empty beer bottle to swig it and at the same time tasting a lolli-pop (which she never does)?

After months of not attempting to crawl up stairs she managed to get up one by herself.

She decided to take up playing the tambourine and lifted and banged it with amazing ease. Notice Adrian asleep in the background.

She made it clear that she wanted to climb the stairs like we do most nights. Surgery, smurgery!

Despite her apparent super-human strength I had to kind of draw the line when she wanted to fall back on the bed repeatedly. I just couldn't watch that head fall on the bed. But she didn't want to take no for an answer and decided she'd get herself up and fall back by herself.

Then she sat in bed and read books and we had to MAKE her go to sleep. I was wiped and went to sleep at 10:45 and fell asleep to the sound of Ainsley playing with her pal Voilet in the crib.

Super-human I tell you. I think she was SO excited to be home she was more energetic than normal last night. She had a great night's sleep and is as happy as can be today. No pain meds.

Today I spent the better part of an hour trying to shampoo anti-biotic ointment out of her hair. After the 6th shampoo, comb through and rinse she started to complain but I don't think there was any pain, she was just annoyed. Who could blame her. But this is what her hair looked like before the bath. Her hair is not wet, it's all GOOP which is why she was wearing the scarf.

And now that I'm done she still has Jheri-curls, I tell you. In this next picture her hair is dry and this is AFTER shampooing.

HELLLLP! If you know how to get grease out of hair (keeping in mind nothing that would sting 11 inches of incisions) tell me quick! I gotta get her ready for school tomorrow 'cause she's ready!

Jan 9, 2010

We're Home

As soon as we put her in the stroller she sat erect and was ready to go. You could tell she knew we were leaving and she was excited. By the time we got to the car she was smiling and kicking her legs and really perking up. She batted the balloon all the way home. I can't believe how much energy she has.

Adrian made us a welcome home sign. We're glad to be home. But oops, in our haste to get out of there we forgot to stop at the pharmacy for the pain meds. Although she doesn't seem to be in any pain. I expected her to need to stay in bed all weekend but she wanted to sit at the table in the kitchen with Evie and Adrian and build Harry Potter Legos. And she's still at it. Except for the incision that goes from ear to ear you wouldn't know she had surgery less than 48 hours ago. At this rate she might be able to go back to school on Monday.

My girl. She is amazing! Here she is checking out her new look for the first time.

Ready To Go

It was another night of constant waking. I think Ainsley has been napping so much it's affected her sleep. At 7:30 the resident came in and removed the drain. I don't know how I missed it the first 2 surgeries but that's something I hope I don't ever have to see again - 8" of tube pulled out of my child's head. Eeeew!

And it appeared to be very painful. Poor baby. Afterward there was a large amount of blood on the bed and it was all over her hair, neck and gown as well. So we cleaned it up as best we could with washcloths but you can't get it all out. And her hair is caked in anti-biotic ointment. I can't wait to wash it, they say I can tomorrow morning.

Ainsley started signing "all done", one handed, as she often does. I'm ready to get you outta here baby! The meds are ready and paperwork is done. We're waiting for Steve and the kids to come get us and she has to have her IV pulled and then we'll be headed home!

Jan 8, 2010

Late Update Sorry

Sorry for the late update, hospital time flies by. You wouldn't think it would but it does. And I'm having trouble with the hospital internet connection. I will have to insert pictures later.

Ainsley woke frequently last night needing suctioning and was still on morphine as needed but was able to switch to oxycodone this afternoon. She is much more lucid now that the morphine has worn off and she seems much happier and I think her eyes are starting to open more.

We were able to sit together for about an hour earlier today and she was able to identify words by name and point to them in her word book. So that's a sign her eyes are opening enough to see. Grandma Micki sent some picture frames and she was really looking at those too.

Half way through the day I was able to switch rooms to one where not only does the door close, but it's private and plenty large. A night and day difference. I guess being the squeaky wheel paid off.

We were able to start feeding. Since we are in the hospital we are feeding her Pediasure and we just bumped her up to her full-feed going home rate of 50ml per hour. That is the second criteria for going home.

The drain, however is still putting out blood and fluid so they want to keep an eye on that and would like there to be drainage of under 60cc per day. So unless something changes they will likely take it out at rounds tomorrow at 7:00am. And we'll be headed home some time after that.

The kids are coming for a visit and dinner in the cafeteria. I always miss them when I'm away from home. They were a little afraid to see her but I think it's going to be no problem. I think she's looking pretty good: there still isn't much swelling, no bruising yet, and the hair really helps disguise the incision a lot. Over all I've been really pleased with how things are going. What a trooper!

Jan 7, 2010

She Made It To Her Room.

It's 11:30 and I'm just getting settled in. Ainsley finally showed up at the room about 9:00pm. She is still pretty out of it. Her 7:30 dose of Morphine hasn't worn of yet so she's doing okay as long as you don't touch her head. Duh. But when she came back from Recovery her trach tie was about 1 1/2 inches too loose and we had to tighten it up. Then getting the trach mask around her neck was a trick but we should be able to leave her alone now.

The change in her appearance is so subtle that I'd almost forgotten they'd done it. I think that's good, we don't want her to have a heavy brow. The surgeon said to wait about 3 weeks to allow the swelling to go completely away before judging her "final" appearance. Due to my concern about the swelling affecting the ptosis they injected steroids into the eye area to reduce swelling. And at this point I see very little swelling and no bruising. And her incision looks really good, they didn't shave too much hair. And he cleaned up her scar, removing the excess scar tissue so the hair meets up closer at the incision point. I think her hair isn't going to look too bad.

We were excited to hear that the surgeon is hoping this is Ainsley's last cranial surgery. Although we'll be keeping an eye on her mid-face and he will continue to see her in clinic to evaluate how she's doing.

I'm ready for rest. Tomorrow is likely to be harder as she wakes up and we try to keep her happy. I was rather annoyed to find that the couch (that doubles as a fold out bed) in my room prevents the door from closing! Seriously people?! Isn't it someone job to measure the couches before they buy them? Has no one else noticed the door doesn't close? So I've got it pulled away from the wall about a foot and it still brushes it slightly but we can close the door so I can sleep. It's awkward to say the least. And the nurse is going to be coming in every hour checking her vitals so who knows how many times it's going to get bumped and wake me up. I've asked to move rooms tomorrow, to one where the door can close. Sheesh. I have other places to put my energy.

It's Done!

We got the page at 6:15 that they are finished. We met with the surgeon. He's SO GREAT. All went well. She is in Recovery and is being transferred to Giraffe Room 3020 as we speak. We have a 14 year old roommate. Should be interesting. We haven't seen her yet. I'll post later with more details and pictures but for now we can all breath a sigh of relief that she did well and it's over. Let the healing begin.

First Prothetic About to Be Placed

We called the OR and they were just about to place the first implant. Her vitals are good and all is going well. They started at 4:15 so as I suspected, it will be a late night. Will keep you posted...


We are waiting for the pager to ring.......

Ainsley was a champ waiting with her Lamby to go back. I was able to go with her into the surgery room (gowned up) to be with her when they put her to sleep with the gas. She cried. And she has no idea what she's in store for. This is the last time you'll she her look like this.

They said they'd page us when they started.....

But we've been waiting and no page. This hotdog is for you Karin. Another bad thing about a late surgery time....the cafeteria is in between lunch and dinner so the pickings are slim.

I'm sure they must have started, right, and just forgot to page us?! It's almost 5:00! It's going to be a long night......I'll need lots of Starbuck's.

Jan 6, 2010

Day Before Surgery

It's the day before Ainsley's surgery and I can think of nothing else. So I keep myself busy by cleaning, organizing and doing laundry. That's just what I do. When I come back home from being at the hospital for days the last thing I'm going to want to do is clean or do laundry. And the house has been a bit of a disaster since we were "on vacation". The kids need clean clothes. So I see this as surgery prep. Maybe that's weird, I don't know.

We got the call I've been waiting for about a half an hour ago and I'm afraid the news is not good. Our check in time, while I am glad it's not 6:00am, is 1:45. That's check-in. They could easily be running late by that time in the day or even bump us. They have to go through all the pre-op stuff where you meet with the anesthesiologists, doctors, nurses, go over medical history, get height and weight, gown up etc. Then she goes back and gets the IV and sedation. So who knows what time it'll actually be when they start. And it's a 3 hour surgery. So it's going to be a LONG day because IF they start on time they likely won't be done until 6:00pm then they have to get a room ready and that takes time too. I bet we won't be in a room until 8:00pm.

And that surgery time means she'll get her last food at 7:00 am so she has an empty stomach for the surgery. So that means she'll be cranky in the afternoon. Great. And it gives me lots of time to sit around at home and worry. And it means that Steve won't be back home to the kids until late. The upside: At least I get to sleep in. And I'm NOT a morning person! But I really would have preferred to get up and get on with it.

Jan 4, 2010

Pre-Op Brow Prosthetic Surgery

After having to reschedule Ainsley's T&A surgery twice (sb in Feb) I was very nervous that something would go wrong with our date for the brow prosthetics surgery on Thursday. After weeks of good health she got a runny nose and with a runny nose lately comes an ear infection. Last Tuesday night she didn't sleep well and sure enough she had a 100.5 temperature the next day so I rushed in to see the doctor. We got Augmentin and thankfully the fever was gone later that night. Her eardrums were pink, not badly infected, so we caught it in the nick of time. She's been doing great since and today we had our pre-op appointment so things look good to go for Thursday.

The surgeon sent me home with pictures. Yea! I always tell the doctors "THANK YOU! I LOVE pictures!" (BTW did no one think my New Year's post was funny?) It might sound weird but it's true, I'm always excited to come home with printouts of the CT's. IMO a picture is worth a thousand words or more. Especially when you're talking about complex medical stuff. Having these pictures I can show you what they'll be doing ahead of time. Remember click on the picture to see it larger. So what you see above is Ainsley's skull on the left and her skull with her new snazzy custom fitted eyebrow prosthetics on the right. Same thing with the lower pictures. She is missing a bit of bone from the last reconstruction so they ordered a prosthetic for that too, which you can also see on the picture to the right. How amazing is that?

We will get a call tomorrow or the next day with the surgery time for Thursday. Likely it will be morning. The (big) kids'll go off to school and I'll take Ainsley to Children's and Steve will meet us there. The surgery will last about 3 hours and we're expected to stay two nights there (on the surgical floor), more or less, depending on how she does. They will do a zig-zag incision from ear to ear just like her previous 2 cranio-facial surgeries. This will give them access to the area. The prosthetics will be attached with titanium. Post surgery there will be swelling, bruising, lots of stitches and bad hair for awhile.

The surgeon does not expect the surgery to help with the ptosis. If it did that would be a bonus. After discussing things further today he thinks that her ptosis was worsened by the forehead reconstruction because they moved the bone that is connected to the levator and tarsus and that it was the repositioning of that bone to which the tendons attach that was the problem, rather than the opthalmologist's opinion that the muscle was stretched or damaged due to swelling. He does not believe that there is any chance of this surgery making the ptosis worse, which has lately been a concern surfacing in my mind. Regardless of whether the ptosis improves, her appearance will change because her brow area will look different. It will be hard to get used to a new look even if it looks great to others. Mommy's always love the way their babies look and it is startling to have your child's appearance change overnight even when the surgery is considered a "success".

Why are we doing this? This surgery provides the foundation of "bone" needed to do the tarsal switch surgery where they remove some of the upper lid muscle and use it to reposition the lower lid. Please pray that 1) nothing happens to mess up our surgery date 2) that the results look good 3) that it does in fact restore her lids to a better position so her eyes appear more as they did prior to the July 07 surgery. 4) that she fares well during the surgery and has a speedy recovery. I will update the blog as it unfolds. As always thanks so much for your support!

Jan 1, 2010

Welcome 2010!

The last moments of 2009, may 2010 be a better year and the beginning of a fantastic decade for everyone!


I stopped making New Year's resolutions a long time ago.... lose the last 10 (now 15) baby pounds, fix up the house, be a new and improved better me. I have come to realize that we are who we are. Our imperfections are part of what make us unique individuals. The world would be boring if we were all the same.

But...what if we could make up other people's resolutions. Now THAT would be cool!

Last night as we were bringing in the new year in our usual boring way, watching for fireworks out the window of our bedroom with them on the TV for backup in case we can't see them out the window. As we waited for the countdown we were discussing resolutions with the kids and they decided mine should be to take less pictures. Not be more patient? Yell less? Play with them more? Be more fun? Hmmmmm. Could I consider giving up taking pictures of my kids? That would be like a meat and potatoes guy making a New Year's resolution to be a vegetarian. AND they want to limit me to 100 per year. You're killin' me kids! You may as well ask me to stop breathing.

Ok, so I know I take a lot of pictures and it's always on my list to get them organized and into albums like the days before digital. If I had one resolution that would probably be it. And if I took less pictures it would be easier to do that and leave time for some of those other things that I'd like to improve on but won't admit to being actual resolutions. But 100 PER YEAR?! Then you wouldn't get to see thing like this:

Look, this is how we passed New Year's Eve. The kids are teaching Ainsley to be a wizard!

Or look at how cute this is?! You're asking me to give this up? If I could only take 100 what would they be? OMG I'm having a panic attack just thinking of it.

But when even your child that doesn't speak learns the sign for stop so she can ask you to PLEASE STOP TAKING PICTURES! I guess you have to consider it....for a few minutes at least.

.....So I considered it and sorry.....NOT A CHANCE!

What resolution would your loved ones make for you? Tee Hee. Something to think about.