Tuesday, March 31, 2009

I have a teenager-wanna-be on my hands

Austin was so grumpy and cranky this morning, for no reason I could tell, so I asked him what was going on, for pete's sake and he said, " I didn't go to sleep until one-something."

Me: "Why?" (Trying very hard not to say it too forcefully or loudly)

Austin: "I was listening to Lord of the Rings" (We have audio cd's for all 3 and hobbit- yard sale for $5- I love good deals)

Aaaaarrrrggghhhh. He's been obsessed with lord of the rings since he started playing with a new neighbor boy who likes it (and as Austin informs me the new boy gets to watch the movies-- peer pressure already??), and is constantly asking me questions or wanting to tell me things. I guess its good- a junior book discussion, but he has been a pill all day (he burst into tears when I told him he would have to butter and syrup his own waffle), and he has soccer practice at 5:30 unless he crashes before then.

I let the kids watch a movie early today (1:00, usually they have to wait until 3:00) so he would lay on my bed and rest (I hoped he would go to sleep, though realistically I knew he would probably just watch the movie), instead he's lying in the front room listening to lord of the rings some more!! and as a result he is having to wrestle with jolie to keep her away from the cd player.

Sunday, March 29, 2009

Jolie & Dade - Best Friends

Jolie absolutely LOVES Dade!! Whenever she is in the living room she makes a beeline for Dade, who is usually laying out in the sun. He licks her face, she licks his, she pulls his ears or tail, he snaps at her as a warning, she bites him or pinches his fur.

She likes to slip away from the rest of us into the laundry room, where Dade's crate is kept. She dives into his food and water, much to my disgust- cleaning dog food out of a 10-month-old's mouth is not fun, especially with those teeth.

She likes to do many of the same things Dade does- pull all the toilet paper off the roll and eat it, pull things out of the trash can, play "fetch" with her siblings (they really do throw things for her and she goes and get thems), pick up toys in her mouth and carry them around, they both like to chew on books, and well, pretty much chew on anything they can get in their mouths. I think Dade is a little jealous Jolie can reach the water in the toilet bowl.

Eating with out using her hands-

Learning new tricks- she started climbing onto her bike, and anything else that isn't too high, like the dishwasher, boxes, stools, etc.

Slipping her best friend snacks-

Friday, March 27, 2009

Adorable Kids

Olivia turns into a chef whenever its time to make dinnner. She asks for a towel to be tied around her waist for an apron, and then she gets out this roasting pot. I'm not sure what the toothbrush was for or why she's only wearing one sock.

She puts the pan on one of our chairs and then grabs the hot pad. This is her oven and she's always careful to not get burned.
Yesterday she also felt like dancing in the living room before asking me to "help" change the color of her apron to the red towel.
The kids talked me into getting them new coloring books, so they spent most of the afternoon busy with them. Nyah is telling me about the pictures she has colored.
Austin's came with stickers and of course they had to all go on his shirt.
Busy! Busy!
The hot pad is a hot item with all the kids. I find it everywhere- in bathrooms, bedrooms, toy baskets, on bookshelves- it amazes me.

Tuesday, March 24, 2009

Tracy Aviary & Swinging at the Park

Here are the girls when we first arrive at Tracy Aviary. Olivia was hungry and wanted an apple, but I think that contributed to her hands getting really cold. "Cold hands" is pretty much the only thing she said while we were here.
Jo had fun playing with all the chains, but that of course made her hands cold too.
These birds are pelicans and ducks. I enjoyed watching the pelicans trying to dive under water after the ducks to try and get whatever the ducks were after.
Click on this picture to make it bigger and you can see the mouse this Laughing kookaburra has in his beak. We arrived in time to see him wacking it against the log he is sitting on. When I got to close, he flew off still carrying it in his beak.
Our peacock encounters:
Shortly after I took this picture the peacock puffed out all his feathers and freaked Olivia out. She's very sensitive to loud noises so when he started calling she cried even louder.
We saw a lot of other birds- golden eagles, bald eagles, flamingoes, an emu, condors, etc. but Olivia wasn't very interested in them, her main focus being her "cold hands" and it was hard for me to be excited without anyone to share it with.
After the aviary, with Jolie asleep in the car (car was kept in sight and not far from us at all times, door locked, windows cracked), Olivia and I headed for the playground where she had to swing on every swing. If you look closely at the pictures showing her eyes, they are puffy and her pupils are very big, this is from the eye drops. But she also does have a bit of a black eye on her left eye she hit the corner by her temple on something yesterday and there is a bruise today.

She wasn't very excited about the tire swing, but I made her sit long enough for me to get a picture.
Didn't like this one very much either.
Her favorite type of swing.

"Cold hands" finally drove us back to the car to look for somewhere to eat lunch- drive-in at Arctic Circle, eating while watching a movie in the car. Aside from the hospital and doctors, it was a great day for Olivia, Jolie and I.

Update on Olivia's NF1

Neurofibromatosis, NF1

Kurt stayed home with Austin and Nyah, and I headed for Primary Children's bright and early with Olivia and Jolie. Our first appointment was with her pediatric opthamalogist (eye doctor), Dr. Dries. On previous visits there was no evidence of NF1, but in today's visit he was able to confirm lisch (pronounced leash) nodules, tiny tan bumps on her iris, but no evidence of any optic gliomas (tumor on optic nerve). So, good results. They put eye drops in her eyes to dilate the pupils so she looked weird all day, and she's sensitive to light. I have a movie character in mind with completely black eyes, pale face, black hood that I just can't place, but her eyes remind me of him.

Then we had a few hours before her next appointment so we drove over to the Tracy Aviary to check it out. I've never been (at least I don't remember) so I wanted to see what is was like, and it would have been lots more fun with Austin, Nyah, and Kurt top be excited about all the birds I saw, but it ended up being a short visit for us because Olivia was too cold, so I figured Jolie was probably too cold as well. Then while Jolie napped in the car Olivia and I played on the playground. Pictures to follow.

After grabbing lunch we headed back to the hospital. Her next appointment was with Dr. Viskochil. The link is for the Genetics page, because I couldn't find a profile for Dr. Viskochil. Anyways, good restuls here too, as in nothing major. He found several surface neurofibromas, basically places where her skin is raised, but they aren't itching or causing pain so they just keep an eye on them at her yearly visits. I tried to find a good picture of neurofibromas, but they were all really scary looking and not at all like Olivia's, so if you look it up just know her's aren't like that at all. Her's just look like a bump under the skin, maybe the size of a few rice grains.

He found a depression on her skalp, and says its common for bone density problems, but ther eis bone all the way through so its not something to worry about. He also felt like she has slightly low muscle tone. When she stand, her belly pokes out and her back curves forward, mostly like someone standing with bad posture, but in her case its low muscle tone that is common in kids with NF1. He talked about a future study of putting kids with NF1 on an exercise program, because exercise would help, but it won't start for a year or so, and she's probably too young, etc. Finally, something I can do about this whole thing- more exercise!! With spring here and summer on the way Olivia will probably love exercising (playing) more. She already likes to walk on the treadmill we'll just kick it up a notch. (I'm kidding and I'm not-- I just thought how he talked about an exercise regime for kids was hilarious- all serious and doctor-like!! But really I can make sure she's being more active).

He was a little concerned with her blood pressure reading- 110/57. The 110 is a little high for her age (95th percentile), especially as she wasn't reacting in any way to the blood pressure cuff. She sat very still in my arms and didn't cry or fuss at all. Also while he was examining her he noticed her heart was beating very fast. We watched it through her ribs. So over the next year whenever we go to her regular doctor's office he wants us to get her blood pressure taken so they can plot it, keep an eye on it, etc. He said there is a rare complication where a neurofibroma can be on the blood vessels leading to the kidneys, that cause the kidney to release a hormone, give her high blood pressure, and need further medical attention, etc.. Yes, thank you doctor for taking the time to explain the worse case scenario, I really wanted to NOT know.

Kids with NF1 tend to be less coordinated, have speech delays, and can have learning disabilities. Right now I would say she's a normal 2 year old-- lots of tripping, falling, and banging her head on things, lots of mispronounced words and guessing at what she's saying, so there isn't any way of knowing what, if anything, is NF1 related.

We talked a little about doing the blood test to get absolute confirmation, but where she now has 4 of the 7 signs there isn't any point in spending $1500 to do it. A good listing of the 7 signs can be found here, Olivia has #1 cafe au lait spots (nicknamed Spot/Dot by Kurt), #2 surface neurofibromas found today, #3 freckling where the sun doesn't shine, and #5 lisch nodules on irises.
Aside from noting new freckles and cafe au lait spots, that was the bulk of the visit. And I guess the bulk of it was good news. Yuck, I hate that. Yes it was good news, but a small part of me wants to curl up in a ball and cry. Its real. She really has NF1- today's visits only further confirmed it. This will always be a part of her life. I will always have this worry when she complains something hurts that its more than just a banged knee, or if she falls a lot in one day its more than natural clumsiness, or that someting more serious is around the corner.

Yuck. Well, aside from that little part of my brain that makes a note of things to discuss at our next visits, the rest of me can just forget about it until next year, and focus on letting Olivia be the beautiful, sweet, terrible 2 she is.

Sunday, March 22, 2009

No More Oatmeal Kisses

From Rose Cottage:

This is an excerpt from an old Erma Bombeck column published on January 29, 1969.

A young mother writes: “I know you’ve written before about the empty-nest syndrome, that lonely period after the children are grown and gone. Right now I’m up to my eyeballs in laundry and muddy boots. The baby is teething; the boys are fighting. My husband just called and said to eat without him, and I fell off my diet. Lay it on me again, will you?”

OK. One of these days. . .
You’ll straighten up the boys’ bedroom neat and tidy: bumper stickers discarded, bedspread tucked and smooth, toys displayed on the shelves. Hangers in the closet. Animals caged. And you’ll say out loud, “Now I want it to stay this way.” And it will. . .


Think about it. No more Christmas presents out of toothpicks and library paste. No more sloppy oatmeal kisses. No more tooth fairy. No giggles in the dark. No knees to heal, no responsibility.

Only a voice crying, “Why don’t you grow up?” and the silence echoing, “I did.”

What a reminder!! With everyone being sick for sooo long, and Jolie getting sick again (poor thing!), I needed a reminder that this is just one moment, and it will end, and we'll keep moving on to the next moments.

A favorite scripture from my teen years that comes to mind, and is still as meaningful as ever:

Psalm 103:15-17

"As for man, his days are as grass: as a flower of the field, so he flourisheth.

"For the wind passeth over it, and it is gone; and the place thereof shall know it no more.

"But the mercy of the Lord is from everlasting to everlasting . . ."

Nyah & Olivia

Olivia is usually treated as the annoying little tag-along sister, a sad but true fact of life for the 3rd child, but today she was treated better than a queen-- like a sister and friend by her big sister, Nyah. This was due to Austin being preoccupied with listening to The Hobbit and Return of the King in his bedroom and so he was unavailable to play with Nyah, but hey, we'll take it for whatever reason.

Nyah orchestrated the whole morning-- They played a game on the computer side-by-side with Nyah asking for Olivia to pick some of the things they did. Nyah made toast and grabbed cups of water with straws for a "water tea party" under the kitchen table, and they also read books and colored pictures under there together. Nyah put Olivia's shoes on and took her for a walk in the backyard. They played hide-and-seek, ring-around-the-rosies, and chased each other around the house (waking up Jolie, but what am I going to do? can't win every time). They also both decided to come to church with me (Kurt & Jo are still sick). It was wonderful to watch and listen!!

Saturday, March 21, 2009

Some pictures . . .

Wrestling with Dad is always fun when he's out-numbered.
Happy, cheesy Jo
We all want in the picture!!
How do they sleep that way?

With spring arriving we are getting into the business of finishing our yard. We went looking at trees the other day.


They love to hide, run through, around, & in-between the rows of trees.

Thursday, March 19, 2009

I feel like blogging . . .

So, I'll update everyone on how things are going today!


What would a day be like without tantrums? And Jo is one dramatic gal, her tantrums are something to watch. Well, I finally feel like I am getting better. There were a couple days when I thought "I'm going to be sick like this forever and that stinks." But St. Patrick's day I actually emerged from by sick-brain-fog to remember it was holiday in time to make our delicious dinner of corned beef and veggies (a family favorite--everyone eats it!!). Unfortunately, earlier in the day I was at the store wondering why everyone was wearing green a day early. Seriously, how dorky is that?

Yesterday I started catching up on housework (dirty floors and mountains of laundry- yuck), but I made sure I wasn't feeling well enough to work hard all day! Today my little girls are also finally acting like they are starting to feel better. That sentence didn't sound too definitive did it? Well, I'm still seeing plenty of above pictured emotions, but thankfully, we are getting some of the smiles back, as shown below.

To prove she is feeling better, Jolie has just emptied the bookshelves and trash can by my computer, all in the few mintues I have been typing. What a lucky mom I am :) I'm glad she can't reach all the folded laundry on the table, otherwise I'm sure it would be strewn all over the house. Olivia is napping, she went down without a fuss, which is still proof she's not feeling great, but she had a good morning. And Austin and Nyah are playing outside with their new friend, Ethan, who moved into the neighborhood a few weeks ago.
With the nice spring weather the kids are showing how much they enjoy being able to run and play again by eating us out of our house. They are always hungry!!! and I think they are eating twice as much food as a couple weeks ago. So if they've grown a few feet when we see you next, that's why. But it is sooo nice to have healthy, happy kids back.

Jo isn't walking yet. She's cruising along furniture, darting back-and-forth between couch and coffee table, and pushing things around, like the bike above, but someday soon she'll just take off!

Saturday, March 7, 2009

Kids at Hutchings Museum

We had a great time at the museum. We were able to do so many fun things, so I can't believe I forgot to take pictures of us doing them!! The kids were able to hang out in jail, play around with the morse code and telegraph machines, try on period hats, grind indian corn with rocks, handle indian pottery, examine rocks and minerals and fossils up close. I was very impressed with the size of the collections and all the activities for the kids. Here are the few pictures of the kids I did take:

Nyah lifting Jolie to look inside this slot.
Inside there was a black light on and you
could see some flourescent, glowing rocks.
Hanging with someone's femur
Playing with a mold of a T-rex tooth Mold of Allosaurus claw

Friday, March 6, 2009

Goblins & Trolls

While we were discussing our Hobbit & Elf names last night, the kids decided we all need to have Goblin & Troll names too, so they happily came up with some for all of us.

Goblin
Kurt- Punisher
Kelsey- Claws
Austin- Boo
Nyah- Attacker
Olivia- Menace
Jolie- Stinky

Troll
Kurt- Man-Smasher
Kelsey- Tree-Slinger
Austin- Man-Eater
Nyah- Rock-Slinger
Olivia- Eye-Slinger
Jolie- Mud-Slinger

Happy Birthday Mom!!

Its Grandma's birthday and we don't get to be with her?
Happy Birthday Grandma!!

Austin's:
Nyah's:
Naptime
Working on the poster
We love you Grandma!! We miss you!! Have a wonderful, fabulous, stupendous, exciting, great, happening, tremendous day!!