she is one tough cookie

pumpkin pumpkin

2011-07-30T13:04:00.000-07:00

big and round,
I'm glad you grow
upon the ground.
I'm glad you don't
grow in a tree
for then you might
fall down on me

ive started growing some pumpkins or this falls harvest!

got some JBLs growing in a kiddie pool in the front yard (yea i know :\) so the dog wont eat them... and got a medium jack growing in the grass.. lol its the only spots we have with full sun and no dog.

mini model

2011-07-30T12:58:00.001-07:00

here she is! my mini model cookie

its been ages

2011-06-15T14:03:00.000-07:00

since ive posted!! sorry about that :\ i should have a lot more to post after this weekend though so that should be something!

heres a little bit of what to expect

just a few

2011-02-16T21:44:00.000-08:00

more pictures of cookies birthday shoot! got a new banner and layout going on, figure i should give it a nice post with lotsa pictures too!

birthday shoot

2011-02-12T21:31:00.000-08:00

did cookies 2nd birthday photo shoot today! shes having a disney princess party and is going as the lovely snow white

happy + new year

2011-01-01T10:00:00.000-08:00

its been a while! Not much has been going on for Cookie. A family as a whole though, we got a puppy, started the renovation on the backyard, had a wonderful christmas, and are happy to start a new year with many new things to come.

Our new german shep puppy is just a doll! We named her Ginger. Shes 4-5 months old and already 40 pounds!

Happy + Halloween

2010-11-01T10:49:00.000-07:00

cookie had a BLAST! halloween was fantastic this year. Cookie was a witch, Christopher was Dadcula, and i was Hecate!

We started out the night at my moms for dinner with Shelby and Judy joining us. Had a lovely dinner and then hit the streets!

http://www.youtube.com/watch?v=fyuSOsvyUqo

by the end of the night she had so much candy she couldnt even drag her pumpkin bag. we got home a little after 7pm and got our house all lit up and ready for trick or treaters

i made these cute little ghost luminaries out of old baby food jars and white craft paint. hung them on little yard hooks with wire. they lit the path up to our door.

we didnt have many kids this year but we did hand out all the candy we had! It was a great year!

witchy ways

2010-10-18T11:41:00.001-07:00

[ A dark cave. In the middle, a cauldron boiling. Thunder. ]

Fire burn and cauldron bubble.

Scale of dragon; tooth of wolf;

Witches' mummy; maw and gulf.

I was planning on cookie being a bumble bee this year. i had most everything ready to go but of course i couldnt find a plain black shirt.. a mom friend [ http://pinkisfunbowtique.com/ ] of mine made this shirt for cookie and i loved it so much i just tailored a new costume around it. you cant see in the pic but it has the cutest stitched pumpkin on the front. so that is how cookie became a witch for halloween this year. im very pleased. her photos came out perfect and shse loves wearing the hat and tutu.

i cant wait to take her out trick or treating this year. She will have a blast!

the patch

2010-10-13T13:41:00.000-07:00

so we went to the pumpkin patch on our 3 year wedding anniversary. we all had a blast! we took the wagon which was a big help for holding all our bounty. we spent a good 30 minutes lost in the corn maze and cookie had fun picking out her pumpkin.

end of summer

2010-09-06T16:44:00.000-07:00

the end of summer is my favorite time of year. the time of year that gives us Halloween! halloween, my birthday, thanks giving and then of course winter time!! eeek! i love this time of year!

of course im starting early.. its no secret, im a halloween nut and cant really help myself :) so for sake of driving myself insane trying to wait until the PC time to set up decorations.. i am just setting them up as i make them. this year i made my first halloween tree. cost me about $8 [for moss and pot] had some black spray paint and the branches from my birch tree.

i cant wait until i can throw in some white pumpkins and spider webs. its going to be beautiful

getting some air

2010-09-06T16:36:00.001-07:00

lets jump!

2010-09-06T16:32:00.000-07:00

THE TRAMPOLINE IS UP!

its huge and takes up most of the yard LOL

but we love it! the whole family does! we are so blessed to have friends and family to help us win it for cookie. thank you again!

2 days time +

2010-08-23T13:11:00.001-07:00

in just two days time we should have our brand new trampoline!

thanks to every single one of you that voted for us and helped cookie win. This is going to bring her years of fun and safe exercise! Anything we can do to add years to her life is the best gift.

We are putting together ideas for a backyard over haul for cookie and other future children. we have an all cement back yard and no place to play and have safe fun. So christopher and i ripped up the fountain this past weekend and made some mental plans on where to put some grass and get the place ready for some fun!

baby pools and slip n slides here we come!

so for now we got the fountain down and out and the trampoline will go on top of that spot.. and once we get that thrown out we can start to rip up all the cement and planters we are removing. add some grass (and my hopes of a water fall/pond) then we are done! wish us some major luck!

th VEST

2010-07-13T21:19:00.001-07:00

Today cookie had her first treatment with the vest! She loved it! She did so well with it! singing and chatting away as the machine made her voice vibrate. She would giggle and laugh at how she sounded. We have it set to run for 20 minutes at a time at 2 times a day.

lil' swimmer

2010-06-25T19:18:00.000-07:00

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 +

2010-06-25T08:51:00.000-07:00

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 *

2010-06-01T09:58:00.000-07:00

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

2010-05-26T23:05:00.000-07:00

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 +

2010-05-13T18:13:00.001-07:00

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 ...

2010-04-22T17:21:00.001-07:00

... 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 +

2010-04-20T12:05:00.001-07:00

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!

packs a punch

2010-03-23T09:37:00.001-07:00

So i just invented what i call "power pasta".. it packs a punch with calories! Its going to make a lot of CF babies very very chunky!

let me start you out..

2 Lbs dry pasta (i use penne noodles)
2 C veggy oil
water

[ using a large pot, add your 2 Lbs of dry pasta, 2 C of veggy oil, then add enough water to boil the noodles. boil until noodles break apart with a fork. strain and let cool]

1 can crisco
1 jar baby pureed beef [or whatever flavor your child prefers (fruits, veggy, whatever)]
1 Qrt heavy whipping cream

[ After the noodles have cooled you need to puree them... we use a food proccessor but you can use a blender just the same. Add in noodles, slowly start adding water, then blend, add more water until you get the consitancy you/your child prefers (cookie eats her pasta thick) once the pasta is blended up i use ice cube trays to fill and put in the freezer. each cube is about 1oz of food. once frozen pop the cubes out of the tray and into a freezer bag and store in the freezer]

now come the time to feed baby.. get out a bowl, fill with 5 frozen cubes of puree pasta, in our microwave i put it in for 33 seconds (yours may vary) once its done, using a spoon break up the cubes left solid, add a spoonful of puree beef (of whatever you choose for flavor) then, 1 Tbsp of crisco and 1 Tbsp of heavy whipping cream. put back in microwave for 12 seconds. stir and serve.

it packs quite the punch of calories!

Paddy's Day

2010-03-18T10:30:00.000-07:00

happy St. Patrick's Day! Wear green and shamrocks and all that.. i took the above picture in my garden. Very fitting for the day i believe. As for the below picture.. this is a before and after. a picture spaced 365 days apart. This day last year cookie was recovering from surgery and had yet to come home since birth.. Her *Aunty* Jenn got her this onesie. As you can se its a bit big and only a 0-3 month size.. 1 year later Cookie is sporting the same onesie only much tighter. Look how much shes grown and changed.. she even poses for the camera now LOL

first steps

2010-03-18T10:00:00.000-07:00

We have for you a video of our sweet baby cookie taking her first unasisted steps! Please take a minute to watch the whole thing. You will see how truely amazing she is :)

http://www.youtube.com/watch?v=qd5vgXz3OFA

spring has sprung

2010-03-18T09:51:00.000-07:00

Its a GORGEOUS day out.. today is one of the first days where its hot enough to have a naked baby! We went to target and picked up a $10 bubble blower. This thing is great! We had a lot of fun playing out back.

1 year

2010-03-18T09:10:00.000-07:00

Cookie turned 1 year old today! She is an entire year old. 365. Ugh the time goes by way too fast....

We had plans to have everyone over at my moms house for a nice mid-day garden party on saturday [feb 27th] and the whole week before predicted rain just on that day.. i was hoping the storm... or the weatherman.. would be off by a day.. no such luck.

Rain hit saturday morning and people started saying they wouldnt be able to make it (road closures and hard rain) so we had a small party at our house. Joining us was, my mom & Don, grandma Shanks, Tim & his GF Gi, my BFF Jenn and of course the birthday girl.

Ordered up some pizzaa, got some cupcakes and had some gifts. We had a great time.

Now sunday rolls around and its perfectly gorgeous outside, bright sun and no clouds, 75 degrees. We get the day rolling and get the party set up for outdoors. Those joining us were: Great Grandma Zeller, Great uncle george & Pam, Grandma Hughes and & Don [of course it was their house] BFF Jenn, and her mom Lisa, Judy, and Chuck dropped by for a bit.. we had a lot of good friends and family.

Cookie had a fun time eating her smash cake, we had a lot of fun watching her :)

She also got a lot of wonderful gifts! a potty chair, a fairy statue, a talk and play game, a cabbage patch doll, a ballerina doll, a fabulous dress, book ends, lots of books, a ball pit and big purple flops bunny pillow.

All in all we had a wonderful birthday weekend! We couldnt be happier.
Happy 1st birthday my sweet baby girl!

will you be mine?

2010-03-18T08:56:00.001-07:00

It had been raining off and on all week.. cookie and i went to the store and picked up a few craft items so we could make valentines together. I made a big one for daddy and she made a little one. Shes such a sweetheart. Had a lovely dinner and of course desert, drinks and a movie after baby went to bed.

bit of a hiatus

2010-03-18T08:51:00.000-07:00

but im back now.. :) lets fill ya in on what youve missed!

lots of things have gone down since i updated last. i would like to touch on some of the more interesting and exciting points: first birthday, first steps, dr. apt's, and teeth.

maybe i should just do this thing up right and in orders. what do you think ?

walker, texas cookie

2010-02-01T15:39:00.000-08:00

cookie is walking! with help :) She got up and started pushing her high chair around the living room today like shes been doing it for weeks! She growing up so quick

http://www.youtube.com/watch?v=XR5dBGoYZQA

1 month away

2010-01-27T16:53:00.000-08:00

well cookie is 11 months old today! . Time is going bye so fast. Im looking forward to her 1st birthday but at the same time i want to freeze her at this age forever. bitter-sweet.

We took a trip to the park today and she had her first ride on the swing (without a blanket for protection) it was a big step for me and my hatered for germs. we both had much fun. Once we were done at the park we sat in the shade of a tree and played together. Every day with her is a true blessing. To make it to one year is a big milestone for us!

the new year

2010-01-18T21:20:00.000-08:00

Well its been a while since ive posted. Nothing really new to report. cookie is doing well. Had some bad coughing a couple weeks ago but has since gone away on its own. Might have been a cold she caught from daddy. She got her first tooth in on jan 2nd! the second one has since popped in too. We are thrilled to see them! Weve been waiting for months lol

Were still holding hope for our friends Lisa and Harrison.

christmas eve +

2009-12-24T21:24:00.001-08:00

Well its christmas eve here and cookie is tucked away in her crib. Shes dreaming of all the fun to be had in the morning.

We carried on a tradition that i had as a child of opening 1 gift on christmas eve. She got a glowworm! She loves it :D it lights up and plays music. She gives it kisses every time it lights up.

We started a new family tradtions tonight. We are going to read "the night before christmas" every christmas eve from now on. We had to use a printed out version this year but plan on going after the holidays to get a nice hardcover copy of the book.

Hope you all have a wonderful night and a perfect tomorrow. Merry christmas to all and to all a good night!

lisa....

2009-12-19T21:15:00.000-08:00

ive been thinking about my friend lisa lately.. she just had her baby boy and hes off in the NICU. Those are the hardest days. I struggle silently for her. I know her pain... watching her baby.. having limited times to hold and bond.. watching the staff follow orders not to feed him....

your going to get through this momma. you have to. i am here when you need

Brrrr

2009-12-11T20:06:00.000-08:00

One cold day in december..... we decided to get out and go have dinner with my mom and Don. Had a great time!

12.10.09 CHLA

2009-12-10T22:58:00.000-08:00

So we had out CHLA (childrens hospital of Los Angeles) apt today.

It was our best apt yet! Cookie has been such a trooper and doing so well day to day with all her meds and feedings. As soon as she seems the dropper with her meds she opens her mouth for them and takes every drop. Shes been eating like such a champ too!

CHLA told us today that this is the best they have ever seen her.... which coming from them is mind blowing! Even at her best times we got the "yea.. shes alright" kind of responce. Today they cheered for her and praised us. It was very nice to hear!

She is 17.4lbs (in the 25th%) for weight. She was 17.3lbs at her pediatric apt on november 24th.. but we are used to that by now. CHLA has super stingy scales. They are still impressed by her weight gain which is a first. Just a couple apts ago they threatened us with a feeding tube.

So her weight is great. Her lungs sound perfect and she got 100% saturation on her o2 levels!

All is well in cookie-ville. For today anyway

tis the season

2009-12-04T23:06:00.001-08:00

Well, the lights are up! we got the house lit and done up right and proper.

I love this time of year! nothing better than having baby's first christmas on top of it! Im so excited! She could care less im sure but im excited enough for the both of us :D

We have cookies CF apt coming up here next week... so i will update on that when the time comes. For now its time for fun, lights, holly, sweets, and gifts!

and on top of it all, i have a new video to post! we have a crawler!

http://www.youtube.com/watch?v=7hJX6gOrvVg

thanksgiving

2009-11-26T17:58:00.000-08:00

Happy turkey day!

We had a fabulous day! Lunch started at 1pm. We had turkey, ham, and goose with green beans, stuffing and mashed potatoes!

Lots a friends and family were there to help us celebrate and give thanks. Ihope yall had a great day too! Were in for a busy next few weeks until christmas comes.

Gobble till you wobble!

my BIG girl

2009-11-24T11:11:00.000-08:00

cookie had her 9mo apt today (she goes monthly) so today was 3 days before her 9mo birthday... she got her hep B shot and her first RSV vax. she will get that vax monthly for the next 5 months. so anyways ....the reason im posting is because cookie managed to go from the 10th% (which shes been in nearly all her life) to the freaking 25th!!! can you belive it?! she was projected to be 16.4lbs today (if she were to stay at her typical 10th%) but today she was 17.3lbs!!! ive got a semi fat baby!!! im effing excited for sure!!!

tough cookie

2009-11-19T21:17:00.000-08:00

We all know she is... and now she has a shirt to prove it! One of my fellow march mommaa found this and sent it our way as a gift for cookie!

Thank you Emily!!

i love this onesie so much! it came in 12-18mo size so she will have plenty of time to spend in it too...

cooKie g0ne craZy

2009-11-14T20:26:00.003-08:00

Ive never seen her do this before. It had me ROFL for sure! Check it out :D

http://www.youtube.com/watch?v=sI5ubQqlWr0

pepper + kitty

2009-11-14T12:17:00.000-08:00

Our middle kitty, Pepper, had a trip to the vet today. She was seen a year and 1/2 ago for grand mal seizures. She was put on medication and were told to stop the medication after her pills ran out to see if she would seize again. If she did they would confirm "grand mal seizure disorder". So we took her off after 2 months. She was seizure free for over a year.

A few weeks ago she had the biggest, longest, most violent seizure we have witnessed. It lasted about 1-2 minutes. We decided that if she had another that she would go to the vet. She had another one a few night ago. We called the vet the next day and we got her in to be seen this morning.

She will be back on her medication "from here on out". Please keep her in your thoughts. She needs all the love and good health she can get.

around the corner

2009-11-11T16:22:00.001-08:00

With Christmas just around the corner i decided to make my first ever tutu! I made this one thinking it would make for some super cute holiday photos.

thought maybe i would get her a cute green onesies to wear with it.

What do you think? i LOVE it! It was so easy to make i was really shocked. If you can cut and tie a know then you can make one :D

hippies & chicken nuggets

2009-11-11T10:38:00.000-08:00

So cookie was showing off her tie-dye threads today! I believe thats a 'thumbs up' i see ;)

Shes got her polka dot baby legs on and shes nice and cozy warm!

We had our morning round of solids. I notice she eats more if im eating breakfast at the same time. Maybe she thinks shes eating what im eating? So anyways... i had some chicken nuggets for breakfast.. yea i know.. but hey, they were good! so whatever!

So im eating my nuggets and i know she totally wants one.. so i gave her one. A T-rex nugget to be exact. She love it. A little too much hahah

ventura # harbor

2009-11-09T20:58:00.001-08:00

So we spent the day at Ventura Harbor today! It was a gorgeous day. Nice clean air, mid 70's with just the perfect amount of clouds. Took some beautiful pictures with my new camera, tripod and remote! *If you couldnt tell from the picture*

It was nice to get out. I spent most of my birthday indoors here at home and then had dinner at my moms house. She cooked shepherds pie! Very delish!

So after a nice birthday at home, we decided to get out. i got some pretty awsome shots :D

the day before #

2009-11-07T16:24:00.000-08:00

Well... its the day before my birthday. yea.. another year gone by.. but on a lighter note, i had the most kick ass birthday ever!

* Check out this shot!*

Christopher (the best hubby in the world) got me an awsome new camera. a Nikon D40. A tripod and camera remote to go with it! Im totally stoked :D

So on top of all the cool early birthday gifts, we went shopping today and picked up some plain white onesies for cookie and i had my first tie dye today! I think they came out pretty great ;)

So here they are!

The big one is obviously Christophers. I doubt cookie would fit in that one *hehe* and the 3 small ones are hers. i love the heart one in the middle. i think its my favorite!

Here is the second shirt i did for Christopher. I think this one came out best. Looks like its store bought (well to me anyways) so imagine my suprise when it came out looking so good when it was the messiest one i made. Had quite some trouble doing this one. Dye everywhere.

All in all, it was a great day! Tomorrow im off to my moms for a home made meal and cake with the family. Life is grand!

ear bling

2009-11-06T14:10:00.001-08:00

well cookie took a trip to the pedi today for some ear piercing! we got some super cute pink flowers in medical grade plastic. the doctor said that using plastic helps reduce the chances of developing a metal allergy later in life!

She cryed when she got them but the second you pick her up, she is just the happiest girl in the world. She turns her head to the side now when the camera is on just so you can get a nice shot of her ear bling. We have to clean them with hydrogen peroxide 2 times a day (morning and night) which work out perfectly with her lung treatments. So while shes getting her lungs done and taking her naps, i can get her ears clean without her even noticing!

She also got her swine vax today. She cryed with that one as well. poor little girl is just getting holes poked in her left and right. So far shes doing well! no bad reaction to either so far.

magnanimous +

2009-11-05T16:49:00.000-08:00

If anyone fits the word, its Charlotte Poe! She is the woman behind the bucks. The $4300 that will be going to the CF fund.

Charlotte has the kind of bashes that everyone wants to attend! This year she hosted her annual Halloween party and asked that people donate to the CF fund. She made a donation box with pictures of my little girl lining the outside. She raised over $4000 that night, all going to research for Cystic Fibrosis.

I cant thank her enough! If cookie could talk im sure she would be at a loss for words as well :D

Your the woman of the year here on 1TC.

Please everyone, join me, in giving thanks to Charlotte and all her friends and family that donated to the CF fund!

Cookie is very blessed to have the very best. Thank you Charlotte for everything! your an amazing woman

{ i want to see thank you comments on this post! From everyone of you, so hop to it! }

Great Strides%

2009-11-04T22:31:00.000-08:00

sorry all this info is coming through so late.. it happens when you start a blog 7 months after your baby is born ;)

so we had a great strides CF walk on October 17th, 2009 on the beach of beautiful Santa Barbara, Ca.

well if you cant tell from the photo, it was a gorgeous day. Cool temps and clear skies.

We arrived at around 9am. got signed in and got the team Gwendolynn base camp set up. we had the best team turn out there! i believe it was around 20 people!

i must say, we were the best dressed team there. THANK YOU CHARLOTTE! she was the woman behind the look! We looked fabulous! Although i may be biased! lol.
So the time draws near. The time to walk is here! Cookie and i hold down the fort at base camp while the teams makes off on their journey. I decided to stay behind mostly because of cookies schedule. we needed to feed a bottle at 9am and then solid foods at 10am then a morning nap at 11am. So we stayed behind and has some food, some nap & somr play time.

She just lights up my world! She has touched so many people. All our friends and family that made the dedication to walk for her and all the other CF babies, kids, teens & adults. We raised over $2000 for CF research!

Thank you every one on Team Gwendolynn that made it out to walk and everyone that donated to help find a cure! You are truely amazing people.

when you have too much down time during nap time

2009-11-03T14:08:00.000-08:00

you end up playing around in paint... LOL

oh well. i think it came out cute :D

she truely is a tough cookie.

happy halloween!

2009-11-02T21:59:00.001-08:00

a couple days late but whatever i was busy! lol... we had a great time! little photo shoot and some trick or treating! cookie got loads of candy (not like she could eat it) and everyone loved her costume.

so here is a little peek of her photo shoot! its my fav pic ;)

if you couldnt guess.. she was a flower fairy! shes such a doll. she got this costume from her aunty jenn! who she misses very much :D

so... then we let her decorate her pumpkin for halloween. no worries, she didnt carve, we gave her some festive paint colors and she did all the rest. she loved it. had a great time

so then we got down to business. the night came! trick or treating!

she really did enjoy herself. she got to go around grandmas neighborhood and show off her pretty smile. we decided that we wanted to do a family theme.. too bad this idea came after she had her costume. i just couldnt think of a theme that involved a fairy and a man that didnt wear a fairy costume LOL so we went with "mythical creatures" theme. christopher was a vampire, i was medusa.

baby on the move!

2009-10-13T13:35:00.000-07:00

cookie has started the rock and lunge. shes not quite crawling but shes almost there. she gets to where she wants to go now

my mom just ordered the foam play mat for the play room. couldnt have been a better time!

watch my little girl GO

http://www.youtube.com/watch?v=6okWG2btNSo

a day in the life

2009-10-11T11:47:00.000-07:00

so i wanted to create a post called "a day in the life" so that everyone can see what cookie and us, as her care givers, have to go through every day.

we wake up at 8:30am (yes she sleeps in that late and yes i know I’m lucky :D) and she has 30 minutes of play time. at 9am she gets her creon (before every feed) served up on a spoon of baby food. it takes 3-4 spoons to give her all her creon. she gets her first dose of erythamycin and her oral antibiotics. she gets a 7oz bottle of formula. her formula is made so that it has a higher caloric density than typical bottles. instead of the typical 20 calories an oz, she gets 27 calories an oz. her bottle is a lot thicker than most.

every 4 days i have to wash her bottle/feed dishes and remake the next round. it takes about an hour. while i do this i wash, disinfect, boil, and dry her nebulizers.

then at 10am she gets her first round of solid foods . (i do not give her creon for this feed since they are still active from her 9am feed.) we give her 3oz of pureed penne pasta at aprox. 200 calories per oz. and 1oz of pureed apples and a spoon of butter. *sounds yummy huh? LOL*

at 11:30am she gets her first round of lung treatments. this too takes about an hour.

we give her 2 different drugs that are inhaled through a nebulizer. she starts of with albuterol then she received pulmozyme.

the albuterol helps to open up her airways so that the thick mucus in her lungs can be expelled easier. the second, pulmozyme, helps break down the mucus. immediately after her inhaled treatments, we give her CPT. this stands for Chest Physio Therapy. we use a small percussion cup to tap on her chest (front and back) to help vibrate the mucus from her lungs. when she gets old enough she will be able to wear what’s called a "vest".

it's a vest that you wear while inhaling your medications that vibrates your abdomen and loosens the mucus instead of doing it by hand.

she usually sleeps through most or all of her morning lung treatments. its nice for her to take her morning nap and its nice for us that she doesn’t mind getting her treatment. i imagine this could be a very big battle for some parents who have children that don’t like their therapy.

after her morning chest therapy ends around 12:30 then she gets another 30 minutes of play time to sharpen her developmental skills.

at 1pm she gets another round of creon and her second bottle of the day. another 7oz of high calorie formula.

when she finishes her bottle she goes down for her nap at around 1:30pm. she will usually sleep until around 4pm. this would be the time i clean and do chores :P

at 4pm she gets her once daily meds. this would include her ADEK vitamins and previcid. she is also on erythamicyn 3 times a day to help stomach motility (to prevent acid reflux) so she would be getting her second does now. its also time for her second round of solids. 2oz pureed penne pasta mixed with 2oz pureed sweet potatoes. we also add butter to this for extra calories.

after her solids, she gets about 30-45 minutes of play time until 5pm. at 5pm she gets her third bottle. like the rest, this is high calorie. 7oz at 27 calories an oz.

after her bottle i get time to make dinner in preparation for Christopher coming home from work. we usually sit down to eat around 7pm. cookie sits with us in her high chair at the table. she gets to munch on a shortbread cookie and drink juice. at 7:30 we give her creon again. she gets her third serving of solids. this serving is usually between 5-6oz of food. we mix 2oz of pureed bananas, 2oz pureed apples with 1-2oz of oatmeal.

at 8:30pm she gets her last lung treatment of the day. this treatment lasts about 30 minutes as it is only 1 inhaled med instead of 2. she done right around 9pm at which time she gets her last round of medication and another 7oz bottle. when she’s done, then its off to bed.

she is a very good sleeper, for that i am thankful. its quite a busy day with her and its nice to sleep through the night.

so a bit more history...

2009-10-10T22:51:00.000-07:00

so anyways... where was i? oh yes..

once we got our baby girl home from the NICU we started to get used to life with a new baby in the house. we had lots of new doctor appointments and a ton of info to take in. we were started on a list of meds. lung treatments, vitamins, creon (enzymes) before every meal, etc etc.

at one of her cf clinic appointment's we learned that she had contracted MRSA at some point. not good for a CF'r.. its resistant to most antibiotics. it wasn’t a problem until the end of July. we went in for a routine apt. and got a chest x-ray and showed a lot of infection in her lungs. we were admitted to CHLA the next day for a 2 week stay. she was put under for a bronchoscopy & lavage then put out again 3 days later to place her PICC line. she would receive IV antibiotics every 8 hours for 2 weeks.

the hospital stay was very draining. while she had a roommate, only one of us could stay with her over night at a time. we had to sleep in a chair. no in room bathroom or shower. we had to use a communal shower that the patients all shared.

after her roommate left we got the room to ourselves and we were both able to stay in room with her day and night. once morning Christopher woke up sick (sore throat, cough etc) and the next day i woke with the same. CHLA contacted their infectious health manager and we were both sent home for a minimum 3 day stay to rule out swine flu. it was very hard to leave our baby girl for 3 days while we got well. the last thing we need is to pass this illness to her. so we stayed home. after we got better and were able to rule our swine flu, we returned.

we had some very amazing things happen while we were there. some very special women made our life a little brighter during our dark hour. we received a very large and delicious basket of get well cookies :D an adorable little elephant with a big bunch of balloons just for cookie.

we received a precious onsie for cookie and a few books to help pass the time. we were also very blessed to have the help from one woman that just.. I don’t have words for. she’s truly amazing.

in our time of need, she gave us the help to get our daughter a crib wedge to help relieve her painful and dangerous reflux.

she’s just so brave. she’s happy even through the worst of it. she has taught me a lot. she makes my world go round.

oh and she was released from CHLA on august 6th with a clean bill of health. we haven’t been back since!

new project

2009-10-10T22:39:00.000-07:00

im working on a new project that im looking forward to posting here. still have a few more pictures to gather but it will be titled "A day in the life" and will detail cookies day and her struggles with CF. please keep an eye for it!

watch her grow!

2009-10-10T21:06:00.001-07:00

just look at her! melts your heart. I might be biased ;) she has changed so much in 7 months and I’m looking forward to the next 7. every month we have with her is a month my world is whole. please help us keep her healthy and prolong her life. help us find a cure for CF.

we have an upcoming CF walk to help raise money towards research. please donate if and what you can. every bit goes to helping beautiful kids like my daughter cookie :D

http://www.cff.org/great_strides/MarshaHughes

the begining

2009-10-10T07:25:00.001-07:00

so i guess i should start from the beginning for all of you that are new here or maybe for some who never knew or might have forget..

Christopher (my husband) and I (Elisa) were very pleased to see the pregnancy test show up positive. our precious baby was growing. the pregnancy was breezy for the most part. nothing too scary. 8 months into the pregnancy I started pre term labor. I was admitted to L&D at the hospital 8 times before cookie arrived. i was on full bed rest and meds to stop the contractions... once I was 37 weeks and deemed full term I went off the meds and bed rest so that nature could take its course.. and figures, at that time she didn’t want to come out :D

we waited and waited with tough and painful contractions and she still wasn’t coming. at 39 weeks the dr scheduled an induction. "come in to L&D at 6am on Friday morning and we will induce"... Thursday night i packed my bags and took a shower. 10 minutes after the shower my water broke. the water was greenish yellow which i read could happen is the baby was meconium stained (baby pooped in utero) so we get to the hospital just hours before I was supposed to go in for my induction. funny things work out that way huh?

so the contractions are coming now. painful. I’m screaming and I’m the only one in the ward and the 3 nurses on staff keep telling me" you’re not dilated enough for an epidural. you will just have to wait" well come 1am these nurses are so tired of me screaming in pain that they call the doctor and order the epidural just to shut me up. I’m sure that wasn’t my strongest moment. i get the epidural and i fall asleep just a few minutes after getting it. slept till 6am when the doctor comes in and informs me that we will be doing an "emergent" c-section. it’s not an emergency but if i were to labor any further the baby could distress and cause an emergency. because the baby was meconium stained and her heart rate was dipping with each contraction (usually due to the cord wrapped around the neck) it was causing the doctor to worry.

i was prepped and wheeled into the OR. at 8:07am February, 27th, 2009 our baby girl Gwendolynn May was born. she was green and covered in meconium. they took her into the NICU for an 8 hour stay to make sure that she was not harmed by the meconium. I finally got to hold my baby girl that night at around 6pm. she was perfect. everything i could have dreamed of.

the first night went grand. the second and the third. all was well in our eyes. she ate and slept and cooed and we were overjoyed.

the doctor came in and said "we notice she hasn’t been pooping as often as she should be.." so i thought nothing of it. ok, so maybe she’s constipated? the doctor wanted to do an enema and see if it helps... 1 try.. nothing.. 2nd, same. third... they finally decide that this is a growing urgent concern. we were transferred to los Robles NICU for a barium enema (enema with radioactive material that they can watch with an x-ray) and we get there and Christopher and i have to leave her. it was hard. harder than anything I’ve had to do. leave my baby.

we expected them to have her back to health in a couple days... they start to feed her, she doesn’t poop, so they stop the feeding. my poor baby girl was 4 days old and not allowed to eat anything. they put a tube into her tummy with a cup on the end to suck out all her stomach juice so she doesn’t get more backed up. her stomach was hard and distended. it hurt her to have a shirt on. they told us it could be 1 of 3 things:

1. meconium plug syndrome (best case)- just really super constipated. meconium is thick like tar and could get stuck for whatever reason

2. herschprungs disease (second best case)- a disease that causes the colon not to work and would have to be removed with a "pull through" surgery later in life to connect the 2 ends while having a colostomy in the mean time.

3. cystic fibrosis (worst case)- a disease of the mucus that causes lung disease and poor weight gain.

after 2 weeks in the NICU with no real progress they decide that the enemas were not going to work and that they would need to remove her bowel obstruction surgically.

[ i just want to say that I’m sorry if this is not the emotional read you might have expected it to be, although it was a very emotional time for my husband and i its quite hard to relive in my mind so I’m trying to keep things as clinical as i can to avoid breaking down in tears ]

we went home. did some research and looked at our options. CF was by far the worst. life threatening diseases are never good. one of the old ways to test for CF was to kiss/lick your baby’s forehead (since most cf kids are extra salty) so I went to my daughter, picked her up and kissed her.

she was saltier than a potato chip. i broke down. i knew in my heart what the blood tests had yet to confirm. she was still in immediate danger though, we had to get the block out.

so.. 2 weeks into our daughters life, they wheel her into the OR for abdominal surgery. after a couple hours of waiting the doctors finally come back out and talk with us.. I’m looking for answers. she doing well and they pulled a solid 2 foot mass from her lower intestine. i asked if it was CF and the doctor told me "I’ve never removed a block like that from someone without CF." my head was spinning.

while she was waiting in the NICU recovering, we got the DNA results. it was CF. we had given our precious baby girl this disease that she will struggle with her entire life, a life that no one can forecast a length for.

in recovery they start to allow her to feed again (she had gone nearly 6 days total without food) and she is happy. she is the happiest starved baby I’ve ever seen. they tell me that I must breast feed to give her my immunities. my milk came and went since it has been 3 weeks post-pregnancy, at this point.

i get a hospital pump and was able to bring it back to some degree. it was enough for her at the start. she had a G-tube placed that they just pushed the fluids in and went straight to her tummy. she didn’t eat very well. they would try to get her to "nipple' as they call it (drink from the bottle/breast) and she would but not for long. they would tube feed her the rest.

with 3 days left before we could be discharged, they moved us into a pediatric room so that Christopher and i could stay with her night and day instead of driving home and coming back twice a day like we did. it was nice to hold her at night. wake up and feed her. things like that people took for granted. they would not let her leave until one of us knew how to place her NG-tube. I had to learn on my baby girl. I felt horrible. I had to pull her current tube, get a new one, measure it out and then cram this tube as fast as I could up her nose and down the back of her throat into her stomach as she screams and gags. once was not enough. I had to PROVE I knew how. I had to do it several more times before they let us leave. I felt like the worst parent doing that to my baby.

Monday we were discharged. the 23rd of march. almost spent the first full month of her life in a hospital.

we drove her home so quick hoping they wouldn’t change their minds and make us bring her back. it was weird having her home. not used to it I guess. we were on strict orders to feed every 3 hours. she still had her NG-tube. she would eat fine for us and after 1 day I pulled the tube out (I was supposed to let her pediatrician do it days later) she was more than excited after that. she still had some eating trouble. we had to bounce her in our arms to get her to drink anything at all, but she would eat it all.

not really sure what im doing..

2009-10-09T20:42:00.000-07:00

I’ve been thinking about setting up a blog for cookie so that everyone can follow her amazing life. She’s an amazing little girl that takes your breath away.. ironically that is just the reason why we’re here. my daughter, Gwendolynn may, has cystic fibrosis. she inherited a gene from both my husband and myself that caused her to be born with this disease, which has yet to be cured. every day is a struggle. every day is also a blessing. every day we get to spend with her is a day that I cherish.

the average age of a CF'r is climbing but still not high enough. in the 80's doctors were telling parents not to expect their child to make it to teen years. now they are projecting that the average age today is 42. that’s a huge step up in just 2 decades.

still, 42 is not nearly enough for a mother and farther to see their first born child off. we are of course praying for a cure.

I guess I will try and keep medical updates and everything here as we go along.

thanks for working with me as i figure all this "bloggy" stuff out :D