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.

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?

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.

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.

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!

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!