Walgreens Story

My friend Crystal sent me this link that I wanted to share with my readers; it's a great story about Walgreens and people with disabilities!

Pony Tail Girl

Kennedy likes me to do her hair in a pony tail once in a while (which she usually leaves in all of five minutes before she's "finished" and wants it out). Her hair is getting quite long as of late and I thought this bouncy pony tail was so cute, I had to take some pictures.

Left Profile:


Right Profile (you can see her BAHA implant fairly well in this one also):

The "Bush":

Countdown Is ON!

The big countdown until the CHARGE syndrome conference in California has been added to the top of the blog. I am excited to be finally having Ms. Kennedy accompany me to one of the conferences; she is going to have a ball. Kyle will also be coming to help his poor old mother and enjoy some southern California sun (and girls as well, no doubt!) Ryan & Graeme will be working so they won't be able to come unfortunately. I can't believe it's only 23 days!

Night Parties

Any of you fellow parents of a child with CHARGE, and most of you with children who do not have CHARGE, know what it's like to go without sleep. Sometimes, Kennedy wakes up at unbelievable hours and is clapping, singing, and just rarin' to go for the day; at 3 or 4 am, however, we are not. Even at 6 am some mornings (weekends, e.g.), it's just not happening. We decided on a new plan of attack this summer so we wouldn't be awake each day at the crack of dawn: a visual.

Kennedy is an excellent reader and LOVES signs, especially "rules signs" - she's the only kid I know who goes to the McDonald's Play Place to read the rules over and over and NOT get on the play equipment. She even likes to sit by them. There's just something she finds so appealing about those signs with a line through them representing "no smoking" or "no shoes" for example. If she isn't familiar with one, she has to know what it means.

Last night, she was up really late (and tonight again as well with the Canada Day fireworks), so I strung some tape across the top of the stairs with a note about when she could come up and get us. Tonight, when I was reminding her verbally and with sign, "don't come up until 8:30", she said, "I know, mama, we can put a string across the stairs with the sign again." Yep, she asked ME for a sign. What a girl!

So, Graeme and I made two loops in a string and put it across the top of the railing (which she can easily crawl under no problem) and put a sign on the middle telling her what time she can come up and to remember to close her door (that way, when she does want to get up and have a night party, put DVDs on, watch TV, play video games, etc...she doesn't wake up the whole house). She's very independent and doesn't get into anything, she just needs reminders when she wakes up and is super excited that everyone else doesn't wake up with quite the same "joie-de-vivre" as she does (to put it mildly). Here's our latest "Kennedy Visual" - the when-can-I-go-jump-on-mommy-and-daddy sign:

Happy Canada Day

We spent the day giving my brother a hand moving and Kennedy was a complete angel the whole time. She had fun running through all of Uncle Scott's empty rooms and playing hide & seek with mom. We brought our walkie talkies and she would take one and I would take one and we would give each other clues about where we were. She was pretty cute. We had a nice BBQ afterwards and now Graeme & I are just trying to stay awake long enough to take Kennedy to the fireworks.

Here is Ms. Kennedy enjoying some chocolate frosting off of a Canada Day Chocolate Cupcake: