Raygen's 2 Year old Pictures...

 

 

 

 

How I love the many faces of Raygen. 

Party!!!

Raygen having a good birthday morning.  I can't believe she is TWO!!

We decided to stay home on her birthday.  Zoie and I made her a cake and I really think if Raygen had a say she would have wanted to stay home.  Where she is most comfy. 

She wasn't that impressed with it.  

She would just slap it and then look at her hands.

Nothing got in her mouth, but maybe next year.  We made the cake just so she had one on her birthday and for the sole purpose to let her make a mess.

 

Sunday we had a small party for her at my moms.  She had to wear her "Birthday Princess" Shirt. 

Toy Story Cake!!

My Mom and Dad gave Raygen this wonderful ball pit for her birthday.  She loves it and it's really good therapy. 

 

Singing "Happy Birthday" to our girl.

The best part about the ball pit is that it travels.  This is Raygen playing in at work.

 

I should be getting her 2nd birthday pictures today and I'm so excited to show them to you guys.  Raygen took some wonderful pictures.

 

Thank you to everyone for all the great Birthday wishes.  I can't wait till Raygen understands how many wonderful people love her and pray for her.

 

God Bless!!

Happy 2nd Birthday Raygen!!!!!

March 23, 2011 at 12:01am.  Your birthday!!

March 23, 2012.  Your 1!!!!

March 23, 2013.  I can't believe your TWO!!!  Time is just flying by.

Raygen I can't say it enough you truly are the joy of our house.  You bring some many smiles and make us laugh.  You bring such a light where ever you go and you inspire us all.  Your courage, your strength, your braveness takes my breath away.  You make me want to be better, do more, help others.  

You are two years old today!!  What a battle you have had to fight to get here, but a battle you have won.  You are about 24lbs, learning how to travel your own way, learning how to eat, talk and so much more.  You are stubborn and you let us know when you want something and if you don't.  You can throw some fits and you can make us laugh till we cry.  You are my girl.  You only like mommy putting you to bed, giving you a bath and feeding you.  

Today your big sister is making you a cake and whether you eat it or not it will be so much fun watching you make a mess.

Raygen I am so lucky to be your mom.  I love you to moon and back and so much more.  I had no idea what would happen after you were born, if I would ever get a chance to know you, bond with you, but Thank you GOD, I have.  I hope more then anything this year brings you happiness and another year with no surgery.  

Happy Birthday my sweet girl!

We love you soooo much!

I made it through...

Yesterday was my first public speaking event to help raise money for Seattle Children's.  I want to thank Lyndsay Walker for the opportunity to share Raygen's story and give back some way.  It was a wonderful event.  There were 3 members from the Guild Association Trustees and Staff from Seattle Children's and several local guilds from Lewis County.  It was an honor to attend and be part of such a wonderful group of women who do so many amazing things for Childrens.

In Lewis County:

There are 81 Guild Members

567 Patients served from Lewis County at Childrens (it's about double that if you count multi visits.)

$1,110,278 of uncompensated care provided to our County last year.

$25,954 raised by our County's guilds went to Childrens.

So Amazing when you see the facts, isn't it? 

Thanks to this beautiful little girl I went totally outside my comfort level yesterday.  Raygen makes me want to be a better person.  She makes me want to make a difference.  Bring awareness in our community.   

I'm so proud to be the mom to this wonderful little girl.  Words don't describe how she has changed me heart and soul. 

I can not believe you are TWO tomorrow!!  We love you sooooo much and we are so lucky to be blessed by you Raygen.  You truly are our miracle and we are forever changed by you.

Raygen Is Turning 2!

Raygen is Turning 2, please leave her your Birthday Wishes, just click on the word "comment" below :-)

Blended diet, Birthdays, Pictures, oh my...

Here is everything I need to make Raygen's formula for the night.  She gets two full cans of Peptamen Junior + 100 extra ml's from the 3rd can, 1 scoop beneprotein mix, and 150 ml's of pedialyte.  She gets a total of 550ml's of this.  So right now since were trying the blended diet she is on her feeding pump from 8pm to 7am approx 11 hours.  I gotta do something to reduce the time on the pump.  

Here is what is used to make the blended diet.  The recipe is:

12 oz 1% milk

213 grams strained chicken or 3-71g jars

1 small jar of peas (113g)

1 small jar of carrots (113g)

3.5oz strained peaches

1/4 cup sugar

2 tbsp of Canola oil

1/4 tsp salt.

Blend it all together and that's what I'm feeding my girl.  Sounds yummy, right? 

This is what it looks like.  She gets 6 bolus of 65ml (a little more then one of these) 6 times a day with a 10ml water flush.  So pretty much, I'm feeding her every two hours.  This isn't the best system yet.

This is what the final product looks like.  I'm not too crazy yet with this diet.  I can't see how this is going to work.  The whole goal is to get Raygen to eat by mouth, but with this diet I'm feeding her more and she is on the pump longer, how in the world do you teach a child to eat if she is never hungry.  Would you be hungry if every two hours you were getting fed? 

Yesterday we took Raygen to get her 2nd birthday pictures done.  She did great.  I got some wonderful pictures of both the girls.  I can't wait to share them with you. 

I can not believe Raygen is almost 2!!!

 Since tomorrow is my birthday we went to Red Robin for dinner after the pictures.  It was an experience to say the least.  I have to remember Raygen is quick and thank goodness dad was close by to catch my dinner before she tossed the whole thing on the floor.  There is a reason we don't go to restaurants yet, lol and I remembered it yesterday. 

Zoie is such a great girl!!!

Happy Saint Patricks Day!!!