Monday, January 16, 2017

How we start our day....

We start our day  the same way every day.  It doesn't matter if it's a Monday or Friday the one thing that doesn't change in this house hold is our breakfast.  Raygen is completely fed through a g-tube with a home made blend that I make everyday.  Zoie starts her day with a bacon sandwich and myself, a PB&J smoothie.  

Let's start with Raygen.  Her diet is a little more strict and I would say the healthiest, well balanced diet of any 5 year old I know.  Most kids her age are enjoying their fair share of McDonald's nuggets and french fries and of course what kid doesn't love pizza?  Don't get me wrong I'd do anything to feed these things to Raygen.  The urge to order her a Happy Meal sometimes is a little overwhelming.  Just for the plain fact I've never bought her one.  To be honest I'm not a huge fan of fast food and we hardly ever eat out.  I am lucky and my family loves eating at home, but when you know you can't do something isn't it the one thing you truly want to do?

Raygen's blend recipe is made specially for Raygen.  Raygen has a dietitian that I work closely with to make sure we meet all her needs.  This isn't a blend for every g-tube fed child, but I thought I would share Raygen's to give some parents some idea's.  I know I get ideas and tips from our best friends (Christina and Gabby) for increasing calories etc. 
Looks like a lot?  Well it is.  This is a process:
We start with 12oz Organic Whole Milk
1/3 cup coconut milk
one banana
1 cup mixed fruit
4oz chicken
2 cups mixed veggies
3tbs powdered dry milk
1tbs flaxseed
3tbs Gerber dry cereal
1tbs Karo syrup
2tbs olive oil
1 slice of bread
1 carnation breakfast
pinch of salt
1 Flintstone vitamin

This makes enough to feed Raygen for one day.  All of this gets blended into a smoothie and fed throughout the day  through her g-tube.  This gives her 1,224 calories give or take and with this she gets around 500ml of water with flushes and meds.  I feed Raygen around 5 times a day that is around every 2 1/2 to 3 hours.   

Maybe now it's easier to understand why teaching kids who are g-tube fed how to eat can be so difficult.  They probably never feel "hungry" and if they do, I don't believe Raygen would understand that putting something in her mouth would make her feel better. 

Me on the other hand, my smoothie is a lot easier and a million times tastier then Raygen's :0)
After my morning work out (I usually get his done before I wake the kids.) I really enjoy my new favorite smoothie recipe.  It's the Ideal Lean PB&J smoothie.  It's so simple.


8oz Almond Milk
2TBS PBfit powder
2TBS Sugar Free Jam
Ice
Blend and Enjoy!

Do you count your Macro's?  I do.  If you do this smoothie looks like this:
27P 6C 7F 195Calories

To save me time in the morning I do a lot of prep in the evening before bed.  It does take a lot of work to make sure your family is healthy and fed.  I think some how I am starting to get the hang of it, but tomorrow could be a total different story.  Raygen's cardiologist appointment is February 2nd and I am terrified.  I know she looks good, but what does her heart look like?  What will her blood work show? 

Email me with any questions.  I am always happy to hear from you and help whenever I can.

XOXOX

Erin & Raygen





Friday, January 13, 2017

Breaking Free...


It's been a long two weeks, but I can finally say I think we are at the tail end of this cold.
We've had to come up with new toys to keep Raygen entertained so we rediscovered Zoie's old Barbie's.  Raygen was pretty impressed.  When Raygen is sick we do not take her outside or out in public.  First off we do not want to expose anyone to her in case she spreads any germs, but we also don't want to expose her to anything that could cause her cold become something bigger.
The weather has been nothing but snow or very cold and it's been a little disappointing that Raygen hasn't felt well since she hasn't experienced the snow yet.  I know 5 years old and she hasn't made a snowman???  It is a price we pay to keep her healthy.  I hope someday we can take her out in the snow I think she would truly enjoy it.  I see snowball fights in her future.
What is so impressive about this girl is even when she feels horrible she is happy.  I know what your thinking.  She does have her melt downs and we do have tears and our frustrations, but she still has those moments where she gives her little smiles and looks and I know she is going to be okay.
This girl.....I just love her.  It is so hard to wake this sleeping girl in the morning to head to work.  I could snuggle with her all day.
She is still enjoying her big girl bed!!  I can not believe she is almost 6 years old.

So I have some new goals for this blog this year and I really hope I am able to achieve them.  You won't believe how fast my days fly by.  I always say "I'm going to blog today." Then before I know it, it's 10 and I need to get to bed.  :0)

Wednesday Raygen is going to receive her new IPad that will be used specifically for communication.  My girl is going to get a voice!!!  I am so excited and yet so nervous.  It isn't going to happen overnight, but hopefully through ABA therapy and dedication from us at home Raygen will be less frustrated and we will be able to know her wants and needs. 

My goal is blog at least 3 times a week during this process and update you on how Raygen is doing learning her IPad, ABA, and learning how to eat. I also want to touch basis on things that help me personally.  As you may know I am a full time working mom of two and to keep myself sane I have fell in love with fitness, running,  and IdealFit

To get started I want to introduce you to my go to products to help me stay on track. 
IdealFit Toning Stack on sale for $79.99 a savings of  $84.97!  That's huge.  I ordered this today.  I choose Mint Chocolate Protein Powder, and the new Strawberry Kiwi BCAA.  I have been using the CLA and Night Time Probiotic for a couple weeks now and I really love them.  I feel no awful side effects.  I love that IdealFit is especially for women.   I am excited that I  found a product that keeps up with my hectic schedule and keeps me full of energy to the best I can be.  Being a special needs mom can be hard.  We don't always have the time to go to a gym, the money for a professional, but with the right supplements and support even a stay at home mom can be a fit and happy mom.  If I can do it.  So can you. #ad

I hope you stay on this roller coaster and join me.

Erin






















Sunday, January 8, 2017

The Never Ending Cold


So this is us since Thursday. This nasty cold or flu has taken over our home. We have all been coughing, snotty messes. I know a lovely picture I paint, lol. But it's our life. It takes Raygen twice as long to recover from a cold then a healthy child. While pumping her full of food, Tylenol and ibuprofen I also monitor her temperature, o2, and listen to her lungs. Something as minor as the common cold can become very serious very quickly for Raygen. Now I'm just trying to take care of everybody without reinfecting Raygen. It's been an exhausting few days. Praying tomorrow we will all feel a little closer to normal

XOXO

Erin

Wednesday, January 4, 2017

Colds Suck

Raygen has been fighting an awful cold for almost a week now.  She feels good when the Tylenol kicks in, but when it's done working its magic she is all about the cuddles.
She has a horrible cough and when she starts coughing it last for about two minutes and continues on with sneezing.  She coughs so hard that tears come to her eyes.  It's the saddest thing.
These little smiles are with Tylenol. :)

Randy and I took her to the doctor yesterday just to make sure her lungs were clear and that she didn't have an ear infection.  Thank goodness lungs sounded good and so far (Knock on wood) no ear infections.  Just a nasty cough and runny nose.  Raygen's o2 was around 90 which is lower then it has been and I'm hoping this is due to the cold and nothing else.  She usually runs around 95.  I am going to start monitoring it again at home just to make sure she isn't having a downward trend.  We are seeing Dr. Park at the end of this month and I am ready.  I am needing to know that Raygen is okay.  On the outside she looks good to me, but it is what is inside that scares me the most. 

XOXO


Erin







Wednesday, December 28, 2016

Christmas 2016


Christmas was so exciting this year.  This was the first year that Raygen actually opened presents and enjoyed it. 
Zoie was wonderful Christmas morning helping her sister open all her presents. 
She loves her Pete the Cat game. 
She also got a new Minnie Mouse. 
Zoie, Aiden, and Trooper. 
Raygen enjoyed playing at her Grandma Dorothy's house. 
Grandma Dorothy had a Christmas Village set up and Raygen loved playing in the fake snow. 
She made it snow all night, lol!  Lets say I did a lot of sweeping. 
Overall Christmas was amazing.  I always have feel this sense of sadness of when it's over because I love all the decorations and the just the family bonding.  With that being said there is something about looking forward to the New Year that pulls me through.  My girls are growing up so fast.  Both continue to amaze me with their strong will, strength, and courage.  I look forward to 2017 with excitement.  I can't wait to see what my girls do.

Hope everyone had as wonderful of a Christmas as we did.

xoxo

Tuesday, December 13, 2016

Flu Shots and Check Ups

It's that time of year again.  Flu season....  So we took Raygen last week to get her flu shot.  She was fascinated with the painting on the wall at the doctor's office and the floor.  I think maybe we should work this into our home? 
Raygen found the Christmas bows for the tree and decided they would look better in her hair :)  I think I agree. 
Raygen's hair is always a struggle, lol!  It is beautiful and curly and very long and in a constant state of disaster.  Finally after a lot of conditioner and determination I was able to braid in in pig tails.  She was impressed when she got out of the tub.  She continued to play with them and check herself out in the mirror.   
We moved Raygen into a twin size bed.  Granted the bed is in our room, but the fact that she is no longer in a toddler bed is huge.  I can not believe my baby has outgrown her baby bed.  My crib life is over :(  But I have decided to take this in stride.  Twin bed bedding is really cute and with a new bed she needs new bedding :0).  The Winnie the Pooh bedding that she has now was my niece's lol.  She is now 21 and a Senior in college.  My family and I tend to keep things for awhile, lol!
Raygen hanging out at the doctor office before the flu shot.  Zoie came with us and the poor girl had to get four shots.  She was so brave and didn't cry one time.  I was so proud of Zoie.  Raygen watched her sister take all four shots like it was no big deal, so when it was Raygen's turn she whined a little bit and then was good to go.  I don't think the shot bothered Raygen as much as being held down. 
Raygen's picture at the Mary Bridge Hospital in Tacoma, WA.  She is in the bottom right corner.  This is next to their Christmas Tree.  This was about 7 days after her Norwood.  I know this because her chest was left open for 7 days after her surgery because of the swelling.  I look back on this picture and then look at her running around today and my heart wants to explode.  I don't know back then if I let myself imagine my life today.  I lived moment by moment, minute by minute.  After each heart surgery there are so many up and downs that you can't think straight.  I am so grateful that we are here today.  I am so grateful for this life. 

Raygen also had a GI check up and saw a speech pathologist in Seattle.  GI went good and she managed to gain a little weight.  I'm increasing her calories a little to see if I can keep her going up more so then just staying the same.  It is a tricky cycle with her.  I don't want her to gain too fast or too much because that isn't necessarily good on her heart to be overweight, but at the same time it's not good to be under.  I guess when you think about it, it's not too different for any us.  There is a fine balance that we will be working on always.  

The speech pathologist at Seattle Children's agrees with Raygen's Autism diagnoses.  We have a list of recommendations and are currently looking into an App for the IPad that will help Raygen communicate with us.  The therapist gave us so much information that I am still in the process of reading it and deciding how to take it all in.  

Raygen continues to grow and excel in everything she does.  I can not wait till Christmas this year and see how she reacts to all the excitement.

Thank you for your continued prayers and good wishes.

XOXO

Erin











Wednesday, November 30, 2016

Birthdays and Goodbyes


November was busy.  We celebrated my Dad's birthday.  This is my favorite picture of us.  I'm a total Daddy's girl. 
I can't believe these pictures were taken 3 years ago.  I love looking back and comparing how much the girls have changed each Christmas.  This was Raygen's big "bubble" faze.  Thankfully we have out grown that for now.
We said goodbye to my Grandpa.  He will be truly missed.  Those kids in that picture (including me,) now have kids.  He was my last living Grandfather so there is a permanent  void in that part of my life.  I am so grateful my girls got to know him and see him.  I know Raygen will not remember him, but he will remember her and watch over her.  Zoie has tons of beautiful memories of time she spent with him. 

Were still going to dance on Tuesday's and Raygen loves it.  I especially love it as well.  I love watching Raygen experience life.  I love watching her run around class and watch the other kids.  She loves music and watching herself in the mirrored walls.  I wish it was more then one night a week and a little closer to home.  She loves to wear her dance clothes and I know she looks forward it to it as much as I do.

Monday, November 14, 2016

Where does the time go...


Halloween has came and went.  Zoie was a cute puppy and Raygen was a little witch for about 10 minutes, lol!  We didn't go out trick or treating.  The weather was horrible and we were all pretty tired, but we dressed up anyway. 
Raygen discovered rubber boots and puddles with Grandpa. 
Zoie turned 13!!!  I can't believe this beautiful teenager is my daughter. 
I ran my second half marathon. 
I also got to meet someone who I adore.  Sarah from "Another Mother Runner." 
Raygen is still loving every minute of dance. 
Raygen went to ENT last week and had both her ear tubes taking out and is now on two allergy meds.  I'm hoping we can make it through this winter with no cold because I really don't want to put her through another set of ear tubes.  

Sorry for not being better at keeping my blog updated.  If you have facebook I do post more there just because I can quickly do it from my phone.  My world has been so busy lately I can barely keep up.  I hope soon I can find some R&R time, but now that were close to the holidays it may be next year.