lil' swimmer

Today has been up & down. Driving to my aunts this morning (where im baby/house sitting until monday) almost every song that came on the radio made me cry as i sang it.. every song that made me think of connor and his parents.

it was a rough morning. I cant begin to imagine what the Jones' are going through.

Once we got to the house, unpacked, got lunch and a nap.. we went for a dip in the pool. Im having a hard time trying to figure out how to teach cookie to swim without using a public pool.. seeing as we dont have one of our own, im trying to teach her every chance i get. She has started trying to go underwater on her own now.. its a bit scary.

All i know is that i will be hugging cookie extra tight tonight. a cuddle & a kiss. well be praying for the jones'

+ Connor +

Late last night, a little boy named Connor Reed Jones, lost his battle to CF. 7 years old. I can tell you as a mother that... its not nearly long enough. How is it that a 7 year old is ready to pass on? We need to cure this disease and it needs to be done NOW.

Connor will live on through us and our memories. Love and prayers to his family.

Breathe easy Connor man, breathe easy

+ Play date day *

We had a play date/family meet up today! Memorial day in the back yard, the grill cooking burgers and hot dogs, drinks all around, babies playing on the groung.. it was a blissful day!

Laura and family came down from Colorado for a socal vacation! They stopped by for the day to spend some time with us. We got the BBQ fired up and played some ping pong in the front yard. Naturaly we both took a thousand pictures LOL. We are so happy the could stop by for some time with us! Thank you guys for the beautiful day!! xoxo

the way it is

Some times you feel down. Some times you look at your life and wonder.. where did you hit that fork in the road that changed everything? Some time you think that you have been let down.

Christopher is away in AZ on a business trip tonight.. im here, alone, awake, and exhausted, wondering why? why?? why do i have to deal with this? why does MY child have CF? why not my neighbor? why not my friend? well.... a little bit of knowledge was bestowed upon me tonight...

"she is here for u, not u for her"

Ive been doing everything, earthly possible, to help my daughter. to keep her going strong and living healthy. Eveerything in my power to keep her here a day longer with me. Then i read that.. BAM. it hits me. it hits me that its true. shes here for me. She is here to change me, to mold my life into something amazing, to make me who i am meant to be.

She is my love, my life, my everything. I wouldnt be with out her. shes my world. my baby girl.

CHLA update +

Today we had our CHLA visit. I must say, it was THE best visit we have ever had. Aside from the constant scream coming from cookie, today was a pleasant day. We went in expecting the typical: need to gain more weight, keep the meds up, add more calories to her meals, increase meal frequency, etc.. well she some how managed to reach her goal of 50% for weight! They gave us the go ahead to add some veggies and fruit to her diet and we can start to sigh a little bit of relief as far as her weight is concerned.

I couldnt be more pleased. My mom came with me today to give Christopher some work time. He ends up missing a full day of work for these visits. I think she loved having her grandma there today, i know i did. So all in all, everything is good. lungs clear, they did a throat swab, gave us some refills for creon 6k, they asked me to write down a few recipes that have helped cookie gain her weight so she can pass them on to other new CF parents, and her o2 sat is 100% like always!

the picture ...

... ive been trying over a year for :)

may sound silly to a few of you.. but with cookie being in the NICU for her first month of life i never got the newborn baby photo shoot that a lot of moms got.. i got in a couple cute ones when i waws first learning on my point and shoot camera but now that i got a nice one and quite a bit more skill behind me.. ive been trying for that shot i never got and as she got older it got farther and farther away..

I think its how shes curled up in a little bundle.. im not quite sure but i feel like shes a new born again in this photo. makes me feel warm and fuzzy :)

anyways.. that was cheesey.. boy oh boy.. i gotta go now *blush*

bows for a cure +

love bows? fancy the color purple? looking for a cure for CF?

we got everything you need right here!

starting soon the Pink is fun bowtique will be selling these fabulous bows to help raise money to find a cure for CF! If you love someone who has Cystic Fibrosis and you want to help raise money to find them a cure then all you need to do is stop on over to the Pink is fun Bowtique and pick up a few bows! There are lots to go around and many cute styles!

Please join us for the month of May [CF month] to help spread awareness of this life threatning disease and everyone buy a bow for a CURE!