Friday, May 26, 2017

We've been busy...

I just can't believe how time flies being Raygen's mom.  I just love looking back and seeing how far she has come.  She used to love to wear my sunglasses.
Raygen had her first trip to Build a Bear and she loved it.  The last month or so she has been watching video's of girls going to Build a Bear and so I finally decided I would take her and see what happens.  When we walked passed the store she immediately pointed in that direction and wanted to go in.  She went it and looked at all the bears and picked out the Belle Bear.  It's the cutest $60.00 bear I have ever seen, lol!  I thought for sure she would change her mind a million times before I finally just told her I was deciding for her, but no that wasn't the case at all.  Once Raygen picked her bear she was in love.  Belle travels everywhere with us the last week so I think it was a wise investment.  I can't wait to take her back again someday.

Her BFF gave her a doll house.  She loves it.  
Nothing better then a nap and I just love watching her sleep.  I can't get enough of this kid.
Wow!!  Raygen's hair has always been crazy.  I am so glad we have lost the kangaroo pump.  

I think I want to put this on a huge build board somewhere or a T-Shirt.  Just remember this next time your in Walmart or any public location and see children not behaving "Good" or "Well" they may not be the brat you think they are????

XOXO

Erin&Raygen



Monday, May 1, 2017

She lost her first tooth!!


It's hard to see in the pictures, but Raygen finally lost her first tooth.  It's a top front tooth :0)  Who knew this girl could be even cuter?

I was lucky enough to save it for the tooth fairy.  We have an appointment in Seattle on Friday and since Raygen has been watching Build a Bear video's on U-tube I think we may stop and check one out to celebrate!!!

XOXO

Erin&Raygen




I've been having a lot of tummy trouble lately so I've been cleaning up my diet.  Most of you know I'm a huge fan of IdealFit and Ideal Shape products and they just introduced Idealraw.  I ordered my on Friday and can not wait to test it out. 

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  • Sunday, April 23, 2017

    Hard to Look Back


    Did you know it's not uncommon for parents of CHD children to suffer PTSD?  I often believe that is something that has affected me lately.  I don't believe I allowed myself to "feel" too much at the beginning of Raygen's life because everyday was so overwhelming I don't think I could have made it through.  I lived minute to minute and that is all I could handle.  I was a complete mess during the first year.  I hardly spoke to anyone besides my husband and parents, never left Raygen's side, and the rare moments we were home hardly left the confinement of my four walls.  This was mostly by choice, but made a lot out of fear.  Fear of something happening if I looked away, went to the store, or even took a nap?  I would never forgive myself if I wasn't there. 

    I look at this picture with a huge feeling of love.  Nothing warms my heart more then my Dad holding my children, but look closely.  Raygen was barely a month old.  She's weak, slightly purple and hours away from almost poisoning herself to death.  This picture shoots fear through my entire body.  I tense and feel like breaking down because this is the day I almost lost her.  She had survived the hardest open heart surgery that anyone could ever have and yet came out with paralyzed vocal cords.  Her poor body could not blow off the CO2 her body was producing and she was almost literally killing herself with each breathe.  If you could hear her during this time she sounded like a little humming bird.  If you think that is a good sound? You'd be wrong. 

    Hours after this picture was taken we were watching 10 or more doctors try to save Raygen's life.  First they stressed her out because they couldn't get an iv and being poked so many times and screaming she lost all of her reserve.  Before I knew it she was purple and being bagged and I was screaming.  I cry now.  Typing this.  I don't like to relive these moments, but they are part of her life and part of what makes her so special.  I thought I lost her.  Seeing your daughter bagged is a sight no parent should ever witness and if you do, you will never forget.  I had to leave.  I couldn't watch.  I couldn't.  I ran out and got my Dad.  My Dad and Randy watched as I cried in my Mom's lap.  Begging, pleading with God not to let her go. 

    She didn't go.  She fought.  She fought hard.  That baby had way more strength and courage then her Mom did.  Raygen has not had an easy road.  After this night she spent weeks on a ventilator to see if her paralyzed vocal cords would start to work again.  Unfortunately, for her, they didn't.  The doctors gave us two choices.  One: We continue letting her live on a ventilator or Two: We do a tracheostomy.  This was a very painful decision for Randy and I.  Living on a ventilator was not living.  I couldn't hold her.  She had to be on higher doses of medicine so she could handle the discomfort  of a tube down her throat and the chances of her getting an infection on a ventilator was higher the longer she was on it.  But, there are a lot of negatives when it came to a tracheostomy too.  We moved forward with the trach.  So the early part of May my daughter received her tracheostomy.  By June we were able to spend some time at home.  We went through trach training, choosing home care nursing, getting all of our supplies, setting up our home, getting special equipment to travel and so much more.  These were hard days, but at the same time amazing days.  My daughter is a survivor. 

    This is only part of her story.  I hope it makes you realize that there are so many scars that go unseen and each child and parent has to find a way to deal and embrace them.  Part of what helps me get through the hard times is sharing her story and hoping that someday it will help another child or mother that is going down a similar path.

    XOXOX

    Erin&Raygen

    Monday, April 17, 2017

    Birthday's and Easter 2017


    HAPPY FIRST BIRTHDAY BABY BUCK!!!!

    EASTER 2017








    Hope everyone had a wonderful Easter!  Raygen was such a blast this year.  She loved it all.

    XOXO

    Erin&Raygen








    Sunday, April 9, 2017

    I'm not going to be a Fitness Model....

    So one of the things I love most about my life is that I am a Mom.  A Mom to two total different, unique, amazing girls.  I always wanted girls. 

    So what has been stopping me from living my dream life?  Why have I been slacking on the most precious part of my life.  Why have I been struggling to become something I am NEVER going to be?  Could I blame Instagram? Yes.  Could I blame Facebook? Yes. Could I blame our society? Yes.  But most of all I blame myself.  I have fallen victim to what so many us of do on a daily basis.  I have set these unrealistic goals for myself and I really need to have a shot of reality thrown in my face before its too late.
      I am not going to be a Fitness Model Mom. 


    I know what your thinking.....Really????? but it's so true.  Somewhere in my head I thought I could look like everyone I see on TV and on Instagram and all the groups I follow on Facebook.  Why couldn't I?  Everywhere you look it says it's possible, Right???  I mean the world is full of helpful tools, apps, websites, books, and webinars.  Why do I know all of this?  Because I'm the one paying for them and lapping them up like I just found the gold at the end of the rainbow.

    Reality did hit me this week and it hit me hard.  I've been down and out since Wednesday fighting the worse headache I have ever experienced in my life.  I actually slept two full days only waking to take more Nyquil and a quick bite to eat and out again I went.  So why does being sick make me have life changing realizations, you ask? Good question.  Because as I sit here unable to workout or care what I am eating I'm still looking at everyone I'm following and realize:

    FITNESS ISN'T MY JOB.  WOW!!! 

    Everyone I follow is getting paid to Instagram or Facebook.  They all have some sort of career based on what they post and I don't.  I work full time as my Dad's personal assistant/office secretary (We should ask him how he does when I'm sick.) Full time mom, wife, and fitness is only a part of my life.  Fitness isn't my WHOLE life.  I look on how I have been the last few months and I shake my head.  I've been miserable to tell you the truth because when I'm failing at being that "six pack mom" I see on Instagram it reflects on how I am as a mom, daughter and wife.  I am so focused on my "Macro's" for the day that if I slip and fall off track I become so upset and talk down to myself that I am not the most pleasant person to be around.  It changes how I am as a parent.  Too the point I am ashamed to admit. 

    For all thing things I HAVE to be grateful for why do I let something as pointless as my weight affect everything.  I share this only because I can't help but feel I am not alone.  I remember there was a time in my life where working out was fun, running was fun, and testing my limits with fitness was just something I did when I had the time.  I used to be able to miss workouts and still enjoy life.  I used to go out to Mexican food with my husband and have margarita's and burrito's and not give a dang.  Those are what I miss.

    If I say it doesn't hurt my pride a little to say I'm never going to be what I see in the magazines or on Instagram I'd be lying.  I am not one to throw in the towel or raise my hand in surrender but....this time I'm going to look beyond what I see in the mirror and what I want to see in my husband's face, my girl's faces.  What I see in their faces mean the world to me.  I don't want to miss any of Zoie's barrel races she has coming up in the Junior Rodeo, I don't want to miss taking Raygen out to experience life on these beautiful sunny days and I don't want to miss out on having dates with my husband.  I want to be done with hating myself for what "I can't be" and start loving myself for everything that "I am."  I know that admitting you have issues is the first step in a long process to changing, but I see hope that I do want to change.  I may not hit 120, but what if I stay at 130 and my family is happy and maybe, just maybe I'll be happy too.  I have so much to be thankful for.  I have an amazing barrel racer who is going to buy me a Saint Bernard someday or maybe two :0)  I have my half a heart daughter who I need to love and cherish every single second of everyday because God gave me two gifts that I have been taking for granted way too long.  Today is day one for me and day one is going to be a good day.

    XOXOXO

    Erin

    Tuesday, April 4, 2017

    Thoughts...

    So we have been pretty busy lately.  It seems like Raygen's appointments come in waves.  We can go weeks with nothing then all the sudden I'm driving to Seattle twice a week.  We recently went and saw the developmental specialist and speech therapist at Children's.  It's very interesting to get their perspective on Raygen because they see unique cases all the time.  In our area Raygen is the only child, that I am aware, that has HLHS.  Beyond her heart Raygen has the daily struggles and a big one for us is the communication link.  She is improving everyday, but I want to make sure she always has the tools she needs.  Someday my dream is to have a conversation with her.  To know what things she likes and dislikes.  I can't wait till she is yelling at me because she's mad or just telling me crazy stories because she has a wonderful imagination.  I can see it when she plays.  I believe this is possible. 
    The developmental specialist was very please with Raygen's progress.  It has been 6 months since we had our last check up and Raygen has come a long way.  The doctor recommended that I just keep doing what were doing, but she thought I should:

    a. Work on feeding more
    b. Enroll Raygen in preschool
    c. Find a speech/ot therapist
    d. Tips on potty training
    e. Tips on brushing teeth
    f. Find a social environment for Raygen.

    I love tips and advice.  Sometimes their tips actually work out and help us conquer milestones, but sometimes I leave an appointment feeling like what ever I do just isn't enough.  I know every parent must feel this way, but it just isn't possible to do EVERYTHING they think I should do.  Unless I quit my job, which isn't a possibility, there is no way I stand a chance. 
    We live in a very rural area.  There are more doctors that haven't seen a child with HLHS then there is that have.  Our local hospital, which is 30 minutes away, won't even take Raygen.  Olympia hospitals, an hour away, are also a no so that leaves Tacoma and then Seattle.  So finding a therapist to help a medically challenged child is impossible unless I head North.  There is a possibility I could find someone in Olympia, but that's a big maybe.  Many doctors and therapist are scared of Raygen because of her condition. 
    The speech specialist also was impressed with Raygen.  She gave us some great tips on how to use Raygen's Ipad in a more conversation manner then for just "wants" and "needs."
    Example: 
    Me: "I like this game."
    Raygen: "I like this game too."

    Compared to:
    Raygen: "I want this game." or "I need this game."

    It is really hard to explain, but I recommend watching a you tube video on "Language Modeling."  It really puts it all in perspective.

    Along with tips on how to use the device she also recommends:
    a. Work on feeding more to help the oral muscles.
    b. Enroll Raygen in preschool.
    c. Find a speech/ot therapist.
    d. Find a social environment for Raygen.

    Do they forget about GERMS!!! 

    Our preschool in our area isn't prepared to handle a medically fragile child like Raygen.  The preschool is not set up for developmental education.  It's nothing against our preschool, but they just are not capable of handling her.  I can't leave her alone there.  She is completely tube fed, she isn't potty trained, could easily choke, and she can't communicate. 

    I'd have to be off my rocker to leave her somewhere. 

    I just leave doctor appointments deflated.  On one hand I am so extremely proud of Raygen and everything she has accomplished so far, but on the other I am full of self doubt and I struggle if I'm doing everything I can for her.
    Let's not forget Raygen has ABA therapy everyday from 8:30 to 11:30am.  So that only leaves the afternoon for other appointments.  Working full time, making time for my daughter Zoie and her barrel races, ABA, and everything else life may throw at me at any given day can really feel overwhelming. 

    I don't always know if I do enough, but I do know that I do my best.  I know at some point I have to just know that is okay.  It's okay to not always run on overdrive.  My day starts at 4am and usually ends around 10pm.  I forgot what its like to sit down and watch a movie or read a book.  I wonder if I am the only Mom that goes to bed wondering "Did I do enough?" 
    XOXO
    Erin&Raygen



    15-day Ready. Set. Run. Challenge
    I know that my exercise routine really helps me stay sane.  I just signed up for the 15 day Ready. Set. Run. Challenge through IdealFit.  I love running and I am so excited to complete this program. 
    Are you in with me?
    It's FREE!!!!!

    Saturday, April 1, 2017

    6 Years Ago...


    6 years ago I sat by Raygen's bed rubbing her hand watching her heart beat through the yellow bandage. She spent 7 days like this till her swelling went down enough to close her chest. I believe in miracles because any parent who watches their child's heart beat and then 6 years later watch them run, smile, and laugh knows there is something bigger then ourselves in control.

    XOXO

    Erin&Raygen


    Friday, March 31, 2017


    Update coming soon.  We've been busy with doctor appointments and I'll hopefully have time this weekend to fill everyone in on what we've been up to and learning lately about this special little miracle girl!

    Wednesday, March 22, 2017

    Midnight She is 6!!!!!!!!!!!!!



    Midnight tonight this amazing girl will be 6 years old!!! I am truly blessed. I know I say that all the time, but I have watched my daughter go through so much in her six years that I fully understand how lucky I am that she is here with me, laughing, smiling, and dancing. Everyone always asks what’s next? More surgeries? or people believe she is "Fixed." One thing is for sure she will never be "fixed." She will always live with half of her heart or someone else's whole heart. I know how hard the thought of organ donation is, but I am one. I believe I cannot ask of others of which I would not do myself. I pray that Raygen can live the fullest of life with her special job, but there is always that thought in my mind that someday we may be looking at transplant. Remember we are asking a two-chamber heart to do the job of what is meant to be a four-chamber heart. Her half a heart does double duty 24/7. I am always so emotional on her birthday because I remember how it felt to have her taking away from me and rushed to Children's hospital directly after her birth. That wave of emotion is unlike any I have ever felt or wish to feel again. The one thing, if you want to do anything for Raygen on her birthday, is to become an organ donor. I know it is the greatest gift a person can offer to someone else and the hardest. Thank you to everyone who loves my daughter and prays for her. I can't wait to see what she does in her next 6 years. I have a feeling it will be amazing, just like her.

    XOXO

    Erin





    Sunday, March 12, 2017

    GI and Strep Throat

    Tuesday night was ballet and we had a great time.  Raygen is a social butterfly.  She may not follow directions, but she runs around the room happy and watching everything.  Raygen loves music.  Music makes her very happy and with mirrors on the wall so she can watch herself dance is the best!
    Thursday was GI in Tacoma.  Everything checked out great.  Raygen gained weight and now is 38lbs and growing!  Some minor changes were made to her blend to add more grain, but  otherwise, we replaced her g-tube and were off. 
    On the GI floor there is a beautiful mural and Raygen is always fascinated by it. 
    It's wonderful the mural wall is there because it kept Raygen occupied so she wasn't running around being exposed to germs etc.  Raygen has a weak immune system so the littlest strand of anything picks up and it can turn serious fast.  A cold or strep throat, like Raygen is battling now is a lot harder for her then a normal, healthy child.

    Raygen woke up Friday morning screaming and acting very unusual.  She would cry then do a weird jerking movement and it continued to get worse.  I was so scared and knew something was wrong.  So I immediately started to get her dressed with one hand while the other was calling the doctor's office.  I was able to get her in at 9am so I rushed her out to the car and headed out.  I knew she had a temperature because she was hot to the touch and even her feet were hot and Raygen never has warm feet.  The doctor took one look at her and agreed Raygen looked like she didn't feel well.  She had a temperature of 101.6 and one look in her throat the doctor said "Yep, it's strep."  Raygen's tonsils and the back of her throat were red and swollen.  Raygen was prescribed a antibiotic and then we headed home and loaded up on Tylenol and Ibuprofen.  Today she is doing good as long as I stay up on the medicine.  Her fever did come back last night and so far today she's been pretty happy.  Hopefully by tomorrow she will be over the hump and back to feeling better. 
    Before the IPad she loved her little TV.  Here she fell asleep watching Sesame Street. 
    Raygen's first trip to church. 
    Our chunky little baby.  Where did she go? 
    Her first picture outfit.

    Raygen's birthday is fast approaching....March 23rd and this girl will be 6!!!!

    XOXOX

    Erin&Raygen

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