Oct 31, 2009


Here are the Halloween pictures. Evie is always really excited about Halloween and starts planning costumes months before. This year she was inspired by our Disney trip and the Peter Pan hat that Adrian got there. It became the catalyst for this year's costume theme. Of course if Adrian was going to be Peter Pan then Ainsley would be Tinkerbell and Evie would be Wendy. Easy, right? Well not. Unless you are an adult and want a "sexy Wendy" costume. Weirrrrd. So in the end I had to order the dress and found this great lady who makes them to custom sizes for no additional cost. Here's the link for those who are interested: http://www.magicalattic.com/ She did a fabulous job don't you think? Adrian and Ainsley's costumes I was able to purchase new with tags off E-bay. No making costumes for me. Although I did screw up and accidentally ordered a pair of shoes were listed as a 1 in the title but in the fine print were actually a 13. Arrrrgh! One size smaller is okay, two is not so I got to spend hours cutting them apart and sewing them back together so she could wear them. When I should have been preparing for the party. Yep, I said party.....

I told them we would have a Halloween party. Then I had a brief moment of sanity when I realized that was a bad idea with all that had been going on: Steve working 16 hour days and weekend, me being sick, the house being painted (yes exterior, long story, so that interfered with our usual outdoor Halloween decorations) Ainsley turning 3 and starting a new school the week before. But they'd told all their friends. And were sad. So of course I start to feel guilty and decide a week before to do it after all. My plan was to keep it simple. Okay, so I'm not really capable of that. Denial. It was a little bit of trouble but boy did the kids have a blast!

This time I got the dry ice for the witches cauldron. Yea! Thanks to my sister Sheryl who picked it up for me. Word of warning: It makes the punch undrinkable. We had popcorn balls, spider crackers (the kids made them), mummy dogs, bug pasta, "poison" apples, roasted pumpkin seeds, gummy body parts and a wee bit of candy. Ghost cupcakes and pumpkin ice cream finished things off.

Ainsley did not know what to think of all the activity and just sat there on the floor taking it all in. Maybe she was dazed by the disco ball and loud music. Or maybe she just couldn't move with those giant wings on. Maybe she's just not a party girl.....yet.

We played one round of pin the tail on the black cat. And that was it for games. Other than chase the louse around the house (seriously one of the girls' costume was a louse, it was actually quite clever). None of them really danced but they all seemed to have fun doing whatever kids do!

Auntie Sheryl came and helped out. Thank you Sheryl for saving the day!

After a nap Ainsley was spunky, hitting Adrian with her wand, and ready for trick-or-treating. Dressed with extra layers they were warm enough. Amazingly there was no RAIN this year! I stayed to pass out candy so I didn't get to see them trick-or-treat but I was a bit tired anyway and happy not to be walking the hills and stairs in my witch's heels.
After a little while they came back for a potty break and we asked Ainsley if she wanted to stay home with Mommy and she was most emphatic, NO! It is so great that she is now able to answer yes and no questions!!! I was surprised that she wanted to go back out for more trick-or-treating since last year she wasn't too sure about the whole thing. This year she LOVED it!
After they got back they spread out all their loot!

Ainsley was so excited!

The past two years we've bake chicken soup in a pumpkin, the recipe came from one of our Halloween picture books. I'd hoped the kids would agree to skipping it this year since the thing has to bake for 90 minutes. Sheesh. But of course I already had the pumpkin cleaned and ready to go and Sheryl had picked up some of the ingredients for us on her way over so we ended up doing it anyway and eating after they got back from trick-or-treating with bread and salad, yum! But still, it might be time to retire this "tradition" for something simpler.
The biggest surprise of the day? Guess who decided, after three years of trying it, that candy was not Yuck! Yep. Time after time she put this lemon sucker into her mouth. Wow!

I hope everyone had a Happy Halloween!!!

Oct 30, 2009

Pumpkin Carving

We usually go to a friend's for her annual pumpkin carving party which is always a lot of fun but this year opted to do it at home. We still had fun doing it at home and listened to Halloween music in the kitchen while we worked.

Ainsley had a blast.

I thought maybe she could scoop out the guts. Nah!

I did make her touch it though. Yuck!

Ainsley looks just like her pumpkin! It was just a coincidence, she was yawning.

The finished results.

Have a Happy Halloween everyone!

Oct 26, 2009

We Have A New Surgery Date!

Yea! After about 24 phone calls to the cranio-facial surgery scheduler over the past 2 months I finally got the call back with a date! JANUARY 7th! The kids will be on winter break until the 4th and that's Ainsley's pre-op appointment date. I think there is a pretty good chance of keeping her well if we are all away from school for 2 weeks prior. And I'll keep her home from school that week. I'm hoping nothing else goes wrong with this date.

I feel a little weird about being so excited when I know she's going to be going through something so awful. But that's life when you have a child with a lot of medical issues. I'm not sure at what point I stopped being heartbroken when she needed a surgery. But this is a better place to be, mentally, since it has to be done.

My hope is that putting in eyebrow prosthetics will raise her eyelids back more in line with where they were at prior to her second cranial reconstruction back in July 2007. Even though the ophthalmologist says she has good acuity (sight) despite the ptosis but I'm pretty sure having your eyes mostly covered for the majority of the hours of the day must have some effect on how much one can see. This surgery may not work but the brows need to be reconstructed before she has the next eye surgery. I'm hoping it will increase her field of vision in addition to the cosmetic changes.

So Ainsley will be sporting a shaved head again come January. Good thing it's hat season don't you think?

Oct 22, 2009

First Week At Her New School

It's been non-stop around here. The day after Ainsley's 3rd birthday she started at her new preschool. It is a developmental preschool inside an elementary school that has greater expertise with the medically "fragile". We toured it several times over the last year and felt that it would be the best fit for Ainsley. It's a little slower paced than say the EEU. We finished up her IEP last Friday. I was pretty surprised they had a spot for her right away so she didn't miss any school. Since she's eligible for transportation we decided to give that a try. Otherwise I'd have been trying to get her to school prior to running carpool for the other kids. Now I have to get her up much earlier to be ready to meet her nurse at 8:15 and on the bus at 8:24. I hope it gets easier once I'm feeling better. But we did it and weren't late. She made it through an entire week and seems to be LOVING it! She goes off in the morning without a complaint. I knew she'd be okay. She's a pretty independent one, this girl.

Monday was exciting. The bus didn't show up so I had to call in at 8:30 when it still wasn't here. They said she'd come in 5 minutes. A few minutes later I hear the bus and go out to the porch just to see her turn around and leave. Then I call back. See her go around the block and head the other direction down the street. Well they told her the wrong cross street. Then she came back but was convinced she couldn't get down the street. She could but had to drive on the sidewalk. We live on a narrow street, the other houses across the street are down below with a divider between the drop-off. It got so late that Evie and Adrian were up and got to come say goodbye. So after 3 phone calls and all this we headed not to school but to pick up more kids in the opposite direction! We were running 20 minutes late and all the other parents on the route were mad. I actually felt bad for the bus driver. Apparently they didn't tell her she had a new student.

What is going on?! Why am I up so early?

Finally getting on the bus.

Not sure what she thinks about this.

A lot of new faces. Daddy beat us here after driving carpool.

Music time. My favorite time of the day.

Putting up her picture for the first time.

Attempting to put her chair away. Pushing and walking at the same time is tricky!

Mixing red and yellow to make orange paper for a pumpkin project.

Fun in the ball box.

Back on the bus so soon? It was the worlds bumpiest bus (no wheelchairs to weigh it down) but she thought it was a blast. It was good I went with them to make sure they got home okay for the first day. She did great and seemed to enjoy it. The teachers were very nice and attentive.

We'll be getting to know her new therapists. They need to spend a little time getting to know Ainsley. They're already recommending AFO's on the first day. Sheesh. And I hope they don't underestimate her. It's easy to do. And I won't be there to set them straight but I'm trying to have faith that it'll all be fine.

Tuesday the school nurse went with our nurse for a day of training. Then he took her Wednesday and Thursday. It feels a little weird to see my "baby" with a trach go off without me but I'm sure I'll get used to it. It is nice to have a few hours of quiet to take care of business around the house. It's a whole new routine. Maybe next week I'll dare venture out of the house while she's at school. We've entered a new chapter in our lives. I get to watch and see what little miss can do without me by her side. She's showing what she's made of and doing great. It's our Friday. We made it through an entire school week. The best thing is when she gets off the bus and sees me and I get the biggest smile you've ever seen.

Oct 18, 2009

Ainsley's 3rd Birthday!

I've been sick. No H1N1 (that I know of), just a bad lingering cold that made me lose my voice and left me with a hacking cough. This is the same cold that gave Ainsley the ear infection. Steve has been working late every night in preparation for the game deadline so I haven't been able to rest like I should. As a result things have gone quickly from fairly well managed to totally out of control. The house is a mess, I've got papers piled up everywhere and laundry, laundry, laundry. I knew Ainsley would most enjoy being at home with her family for her birthday. I made Steve work late Saturday night so he could have Sunday off. He needs at least one day off after working all these 16 hour days. My intention was to just play with her all day. Unfortunately we were out of clothes and laundry had to be squeezed into the day. About 10 loads. I didn't sit all day. Of course I feel guilty. Luckily she was happy enough to play with her brother and sister.

She put the balls on the balance board for Adrian.

Like a good little sister she even tried to retrieve them from under the dresser.

The kids decorated the play-yard special just for Ainsley. They went to quite a lot of trouble. They are the best big brother and sister ever!

They are ingenious at using what resources they have at their disposal. They wrote Happy Birthday out of bristle blocks.

Did I ever mention Evie is an ace at tying things? Drives me crazy a lot of the time when I find things all knotted up. But the way they tied up all the play silks to decorate this huge chunk of plastic sure was cute. We got it recently to try to help teach Ainsley to walk (the intent is to pull up on it and cruise around it holding on to the top) and I sure will be glad when it's out of my living room.

I wish I knew what she was thinking.

Yes, I made her wear the birthday hat just for a minute.

We had a nice dinner. She always eats with us even though she doesn't eat. She plays with the food. Sometimes she "tastes" it. We combined celebrations. She was born at 11:27 PM just minutes from being born on the 19th which is Steve and I's wedding anniversary. It's 13 years this year (Yes we spent our 10th with a baby in the NICU.). So we toasted to Ainsley's birthday and our anniversary.

That crazy Evie. I had to share this photo. Is that the biggest "bite" you've ever seen?!

We blew bubbles for Ainsley and thought of our dear friend Tommy who was about Ainsley's age and also loved bubbles when he was alive.

We finally opened presents.

The kids each made their own special presents for her.

This was from Adrian. He made her a crown out of beads and gave her some of his treasures.

Evie worked for days on a special book titled "All You Need to Know About Ainsley's Life". It starts out.....Hi my name's Ainsley and my life is sweet. My favorit teether would probily be my favorit toy car.....then it goes on to say....My life isn't just fun its hard to. I have a trake to breth. .......If I could I would probly walk around the house all day yelling and laghfing.....It goes on for 6 pages talking all about what Ainsley likes and then it finishes by saying....Those things may be inportent but the most inportent thing about me is that I'm loved. (Sniff.) Seriously, I didn't help her at all and you can tell by the spelling.)

Ainsley needs some help to open her presents.

Oh I know what to do with this!

This is TOO BIG!

Help me. (Yes this is her "help" in sign language.) She is really starting to communicate.

Of course she hates the doll that I specially ordered for her (It can sit, stand and go in the water. You can even shampoo the hair.). She pushes it away and like a vulture Evie tries to swoop in and claim it as hers "since Ainsley doesn't like it". The doll is VERY cute!

Cake for the girl who doesn't eat.

Needs "help" to blow out the candles.

And still at age 3 thinks frosting is YUCK! - But now she's able to wipe it out of her mouth by herself. Maybe next year she'll enjoy the cake. But for now it was enough that she enjoyed her day.