Been A While

So , I have lost ten pounds since started my diet two weeks ago yay. We are going to Maryland Dec. 14 for my daughter and I school started and I am doing well in my classes and Kylie is doing really good in her new classes.
Shayla walks and is talking :( I wish they would stay little haha but I know it's all part of life!!

Kylie's NIH Video

This is the video we made for the National Institute of Health's Undiagnosed Diseases Program. They are reviewing Kylie's case and asked for a video of Kylie to help in their decision making.







Rachael came over and helped make it. Ashlin wanted to help too, if you listen you can hear her a couple of times in the background.

Whaaa Diets :(

So, I started a diet yesterday and I am sooooo hungry! Actually it's not so bad except I do feel like me and hubby are the commercial where the guy loses all the weight and the lady doesn't, haha. Of course he can eat whatever he wants and while i am trying to be good he is eating an ice-cream cone (which I just happened to buy before my brilliant diet idea) Grrr men. But I will be strong and soon enough I will be healthier for it.

HAPPY BIRTHDAY SHAYLA!!

Today is my Shayla's 1st birthday!! She is the sweetest baby on earth and I love her more everyday! She was born in July about 2 months after Kylie first got sick, so it was hard and when she was only 6 weeks old she had to stay with friends in Las Vegas so we could go to Stanford to get Kylie treatment (they don't allow children AT ALL grr)Then the friends couldn't watch her after 2 weeks and I drove half way to Vegas to meet them and drive back to Palo Alto. I got to keep her two days by having Steven sneak her into the hospital at 3am lol but they caught us and I flew her to Boise,Id where my Aunt took great care of her for almost three months. The first time I ever cried in front of my uncle or cousin's was when I had to leave my sweet baby. I was scared we wouldn't have a bond with each other.

The day we got out of the hospital in Oct I picked up Ashlin and we drove to Boise to get our baby Shayla who by then was almost 4 months. She seemed soooo big to me. But we cuddled and bonded and I let her sleep in bed with us for a week. Until Steven said "oh no not this again." (Yep Kylie slept with us until she was about 3 and still tries to come snuggle once in awhile hehe, and Ashlin comes to bed around 11 almost every nite but they are my girls and I love to snuggle)

Now my baby girl is almost walking,talking is one and has 3 teeth and two coming in and I am so proud to be Shayla's mommy!!

Postage due

I am just posting this because I really like swapping and in trying to be nice and let the person who sent this to me know,that person seemed like she thought I was not being truthful about postage being due. Anyway that's why I am posting this. You can see where it says postage due and I paid for it on the 29th of June. I could be completely wrong because I sometimes read more into things then I should :) I hope that is the case.

One Glimmer Of Light In our Tunnel....

Today we got a letter saying Kylie has been excepted for an appt at the N.I.H in Bethesda Maryland. That's the National Institute of Health. For the undiagnosed diseases program. Hopefully we will hear soon when we go but we are soooo happy I can't even verbalize it.

My Little Scottie Dog

So I really love doing ATC's and recently joined a swap series for different dogs and I have decided that the one I keep for myself I am going to hand paint. Not in a cute painted dog way but in like a 60's art two colored way.

I am posting my first painted doggy. He is a Scottie and I love him :)

T.V reality shows

I have to say I am not big on t.v except what I watch with the girls. But I am sad about the whole jon and Kate thing. I like Kate! I think jon is a jerk and anyone who's says "shes crazy run jon run" I think its b.s. Maybe shes a Bitch, well hello did he not know she was a control freak before??? I am sick of it always being the mean woman who hurt the wittle mans ego. Boo freaking who. You know what he acts the way he does because he's a jerk Period. No one knows what goes on at home, maybe he treats her like crap and ignores her and whines about needing his own time and space when she is always with 8 kids!! I only have 3 (unless he counts as one then 4 lol) but I am home with them all day which I love but it's nice when I do get a little break. He never complains about needing his own time. He works hes gone during the day and if it was reversed where I worked and he was home he definitely wouldn't use that as an excuse to go out with woman at 2 am!!!!

Anyway just wanted to vent that out, even on the little episode last night she was sad honestly truly sad about what was happening and his dumb butt is sitting there saying its exciting and a new chapter. Please I hope she gets it all and finds a dude who isn't BALD!!!!

Somedays....

So I am not usually sappy, well I guess it depends on who you ask actually. Ha ha. And I really don't expect many people to read blogs and profiles and click on the little links that are there to lead them around to the little bits of my personal life that I feel like sharing. But every once in awhile (here lately more often then I expected) someone reaches out, someone who doesn't know me and has nothing vested in my life, family anything really, someone who just wants to let you know they care even if they will never meet you, they just want to say "I don't know what your going through, but I care...." and I am happy for those people.
What we go through with the girls, even my family doesn't get it. They say things like It'll work out or I'm sure it will be fine. And I can't put in words what I want (or need) people to say but that's not it.
So anyway the point of my drawn out story is this...when a stranger asks about Kylie at a store or for no reason other then us passing by says "you can do it.." to Kylie as she struggles to walk or someone sends an email because they read our story that I guess restores my faith in people. Its so easy to hate, that its good to be reminded that you can love too.

Sunday Lazy Sunday....

Not such a lazy Sunday actually. I was in swap for a dragon painting on swap-bot and here is the finished product. I am mailing it out today.
We decided to get touristy and go to Virginia City this morning. On the way up the hill we stopped at one of the scenic turnouts where there was walking trails (not the best day to wear flip-flops) and we took lots of pictures. Then we went to the Silver Terrace cemetery in Old Virginia City and took pictures there. The headstones were beautiful and made out of marble. It was sad to see family's buried together with some of the children being only a few days or months old when they passed.

2 Sketches 4 you Card Challenge

I made this card and envelope for a card challenge at 2 Sketches 4 You. In honor of their 1st anniversary the "1st Annual 2 Sketches 4 You Ultimate Card Showdown" will be a multi-week challenge. The challenge didn't require the envie but I thought it would be fun to use the card after I submit it. It is prettier in real life (like most things) and you can't tell from the pic but the colors are green and purple. And it says love on the tag. I used paper from a mixed media paper pack, and a strip of vellum with mulberry paper that I painted with acrylic paint (upside down) which left the leaves of the paper white. To make the envie I used the corresponding paper in the paper pack from the background of the card.

Schools Out....

So I am happy that Kylie got to do her first semester of school. Even more happy that she is in a traditional school, I don't like the idea of year round. i truly am forgetful and she would miss more school ha ha. She gets to start a summer program for pre-k to help her keep the skills she does have, although she is pretty smart and her issues are mainly physical so i think the teachers have a kind of why are you here attitude (guess its hard when a 5yr old is smarter then you) lol I kid I kid. But seriously....
I did some more carpet cleaning this morning, I don't know how to empty the stupid thing so when hubby gets home we will continue our quest for non painted carpet

Okay so me and my hubby decided to start painting (more I decided to learn and he decided to get back on the horse so to speak) and some how between the two of us we left the acrylic paints with screw lid jars (see where this is going hmm....)on the coffee table in the living room. Needless to say I was greeted in the am by Ashlin (my 2yr) who had decided to paint herself a wonderfully bright shade of orange and her baby sis (Shayla 1) a wonderful mixture of green and red. Delightful eh? So now it is almost 9pm and we are still shampooing with the steam-vac. Life......gotta laugh sometimes :)

Painting

These are two pics we painted last night, using acrylic paints on a canvas 8x10.
They were both made for a swap, but I chose to send the graveyard one and it is titled "Black Dusk"

Making jewelry

So, I am in a swap that requires two necklaces to be made. And I joined although I have never actually made jewelery before. So, here are my first necklaces and I even got brave and made a bracelet yay. I only hope my partners will like them!!

crafting

I made this card for my sister using chalk pastels. My printer seems to make things brighter for some reason but it's a really pretty card in real life haha.
I like to make cards,but I have a problem with over crowding my stuff. But I am learning to just stop when it looks good.

Verve Stamps Challenge

I have always loved the altered altoid tins and have been wanting to make an accordian one for a while, especially since my sister mass cut a bunch of the bases and the plates. I will have to have her post a picture of all the stuff she has to make these that she never uses. anyway I took some so that I could make a mini album for our mom. I am going to put pictures in it just don't know which ones yet. Verve Stamps is doing a project challenge so hopefully I will win!

Happy Mother's Day first and foremost. yay another year without going totally bonkers haha. Although it's pretty much another day, I really enjoy Mother's Day. It makes me feel a bit closer to the girls then usual. I got extra cuddles and I love you's this morning (and I love my cuddle time!)
Steven made me breakfast in bed and my favorite homemade quesadillas for dinner. Today was a great day!!

My Birthday

Today is my 26th birthday!! Last Friday was Kylie's 5th birthday and Ashlin turned 2 on April 10th. I can't help but feel old. But I am very happy and lucky to be where I am at in life. The only thing I am really unhappy with is my weight and like I said before I'll be starting my new diet....tomorrow!! Sunday is Mother's Day so we are planning on going to Six Flags in Vallejo, but usually our plans don't go the way we want so we will see what happens.

Swapping

I recently joined swap-bot, an online swapping site. It is pretty neat so far. My sister got me into atc's which i really love its like a scrap book page with out the pressure haha. I already have gotten some really interesting atc's from theswaps I have been in!!
I have put Kylie's site as a link on my swap bot page and its really amazing that people have actually been going on it and reading about her. For the longest time I think I have had a slight depression and I know i definitely have a case of the why me's? no one cares blah blah blues. But having complete strangers tell me "hey I read about your daughter I feel for you" is really cool to me sometimes that's all it takes to make me smile a stranger saying I dont know you but I care.
Anyway thats my sappy minute for the day haha.

ARTchix Studio "Art Blast" ATC Swap

I decided to enter an ATC swap at ARTchix Studio. The requirements are to create 6 ATCs inspired by two of their playing cards, using images from a selection of their collage sheets. I used images from the "Spring Blossom" and "Fly Little Bird" sheets.

The green print paper is from one of my large slabs; we aged some music sheets for the other part of the background; all the images are from ARTchix, and I used rub-ons from SU.

Something with Flowers or Showers Challenge

Over at the Stamp Something Challenge Blog, this week's theme is 'Something with Flowers or Showers'. I love all the blossoms and blooms I have collected and decided to make two cards with a variety of flowers on each. I am glad I found the Stamp Something blog-it gives me a valid excuse to make more stuff!

Monday Monday

So, today I decided I am going to lose weight FORREAL starting..........tomorrow. This weekend I went to visit my nieces and nephew at the park which was a blast! Then I got to look at the pictures from our day. Yikes! I asked my sister (always the diplomat I probably totally misused that word but oh well ) why she hadn't told me I looked like a marshmallow and she said "you really don't look that bad." yeah okay!
So that's my plan, I'M going set a goal and everything and then I can update here and check my progress too. I want to lose a total of 100 pounds but I know to be successful I need to set small goals so I will keep that in mind.....

Penguin Pants Challenge

I finally unpacked some of my crafting and scrapbooking supplies. One of the first things I made is this ATC (Artist Trading Card) for a challenge at Penguin Pants Stamping & Scrapbooking Supplies. The challenge was to create a project using only black, white & one other color. I love how easy it is to create these flowers with my scallop punch!

Kylie, the oldest one.

Kylie is 5 years old (well in a week she will be 5!). She is the brightest, most loving child I have ever met.

Until she was 3 1/2, everything about her was perfect & above average. Then in November of 2007 she was diagnosed with Type 1 diabetes. We were devastated for her, but now we would be thankful if that was the only medical problem she had. In April of 2008, just days before her 4th birthday she had a seizure and was put on Depakote which made her violent. We were told she had a behavioral problem not a medical problem and they took her off her medication. Within a few weeks Kylie developed a facial tick, then a month after her first seizure she had 9 more in a 24 hour period. Nobody seemed to think she had a problem, one doctor told us kids just have seizures.

We took her to an ear-nose-throat doctor who sent us to Stanford, and spent much of June-August going back and forth between home & Stanford. We spent August-October in California at Stanford without returning home. The doctors at Stanford put Kylie on plasmapheresis, steroids & an ivig treatment but instead of making her better she got worse.

They released us earlier than planned and we returned home to be admitted to the local hospital a few weeks later. Kylie had dropped from 33 pounds in June to 25 pounds in October. They installed a feeding tube directly into her stomach. She is about 35 pounds finally, but that is still below average for a 5 year old so the g-tube has to stay in for now.

Ashlin, the middle one.

Ashlin is 2 years old and has the most adorable laugh. I love to watch her play, she has the greatest imagination and comes up with the funniest remarks.

Shayla, the youngest.

Shayla has huge blue eyes and a beautiful smile. She is just under 10 months old and growing so fast!

New to you, and to me too!

I am fairly new to the blog world. Until now, I have used Caring Bridge to keep everyone updated on Kylie's status. I decided to create this blog so that I can update everyone on Kylie still as well as the rest of the family and so that I can share craft projects I have created, talk about stuff that bugs me, and whatever else I want!