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.

Sunday, October 23, 2016

Randoms..


I love flash back pictures of Raygen especially when she shows us her beautiful smile.

Last night Raygen was trying out her "sweet" face.  I think it's a keeper. 
Finger painting ourselves when it's suppose to go on the pumpkin :0)  Straight to the tub after this. 
Modeling our new pj's. 
Finger painting big sister, Zoie, instead of the pumpkin, lol!!! 
and more modeling pj's :0)  She is still wearing them today.  She refuses to wear anything else.  I hope I can get them off of her later today so I can wash them. 
Two years ago she was fresh out of the hospital from the Fontan.  I can not believe the jumps and strides this girl has made in two years.  She continues to amaze us in her ABA therapy and she is finally starting to show interest in eating again.  She loves her dance class and she really loves books and being read to.  She is so much fun.  I wake up every morning excited to see what surprises this girl has in store for me, even if it's taking every piece of clothing I own out of my dresser :0) 

Wednesday, October 12, 2016

Ballet and flash backs..



I can't believe this was two years ago.  How amazing my girls are.  

Raygen had another awesome ballet class last night.  This is something that she loves. 

My girls.  Another flash back :0)  If you don't have the time hop at on your phone.  It's a must.  It's a wonderful way to help you remember where you have been and how far you have came.  These two are my everything.

XOXO

Erin

Wednesday, September 28, 2016

Ballet Part 2


Last night was another successful Ballet class.  Both girls I think really enjoyed class.
Raygen was very independent this class.  She was so social and running around and watching all the little girls.  My mama heart just melts when I see her enjoying herself.  She loved class till...
it came time to put away the scarfs and shakers.  It was the cutest thing.  She was crying so hard and was so upset that we had to put the scarfs and shakers back, but while crying she went and gave both to the dance teacher.  I can tell that ABA is making such a HUGE impact on her.  Even though she didn't want to do it, Raygen did what was asked and followed direction.  That is a major deal.
We were able to draw her out of her sadness by a swing in the sheet.  I think it was so funny as were taking both girls to the car that they were both upset.  I think they were both upset because the didn't want to go.  Or maybe Raygen just didn't want to leave without the scarf and shaker, lol!  I can't wait to see how they do next week.

Thank you so very much Christina for finding this class.  I look forward to our Starbucks chats on the way end and our venting sessions on the way home :0)

XOXO

Erin

Wednesday, September 21, 2016

Ballet Class


There are so many things that I did with Zoie when she was around Raygen's age that I never imagined I'd be able to do with Raygen, but like many things, Raygen has proven me wrong once again.
Our BFF's found a "Move with Me" dance class and last night and we took the girls.  It was a fun, short class and I thought the girls did great!  I'm not sure what the other parents thought of our special girls, but I could have let myself cry.  Cry with pure joy.  These two beautiful, amazing, strong little girls were running around a ballet class???  To me these little moments never seemed possible to me.  I never thought we'd be here.  That Raygen would be able to do something a "normal," "healthy," little girl her age could do.
Granted there were a few things that the girls were not comfortable with doing like the obstacle course tunnel or things they couldn't do so well like...follow direction, but they did the best they could do and enjoyed themselves.  
Raygen and Gabby were laughing and smiling and to me that is what matters most.  Christina and I were able for a short time focus on having fun with our girls and not get caught up in the daily worry of everything that comes with being a special needs mom.  To see our girls in there little ballet outfits melted my heart.  I don't think I have smiled so much in a very long time.  I was a proud Mommy.
Beautiful Gabby!
Raygen enjoyed watching herself and all the other girls in the mirrors that lined the wall.
What surprised me the most was at the end of class the kids took turns lying in a sheet and being swung and I thought there was no way Raygen would like that, but she ran up to the sheet and plopped down.  LOL!!!  Proven wrong once again.  She liked being swung in the sheet.  I don't know if that is a good thing or bad?  I guess I will know what she wants if she starts bringing me sheets now :0)
                               
I can't get over what a big girl she is starting to be :0)

I think we decided we would take the girls again.  I think it will take a couple classes to see if this is something we should continue with the girls.  I know that just spending time with Christina and Gabby is good for my heart.  It is nice to have a special needs mom friend because we truly understand and can relate to so many of the same things.  I don't feel so alone when I spend time with my two favorite girls.

XOXO

Erin

Sunday, September 4, 2016

GI and Witches...


This week Raygen had her GI appointment.  Everything went good :)
She even got a new tube!  She weighs 35lbs which is lower then last time so I am increasing her calories a little and adding more grain.  I don't want her to gain weight, but I definitely don't want her loosing.  A slow increasing gain or maintaining is our goal for night.
Afterward we headed over to Costco and Raygen discovered the Halloween section.  She wanted this costume because the witches broom that came attached to it was a pom pom!!  Raygen even slept with it for two nights in a row.  I was impressed she wanted the dress on.  I ended up having to cut the sleeves off to make it easier to take on and off, but it still looks cute.  She has brought me the dress a few times since and has worn it for about five minutes and then she's done.  I had no plans on doing any trick or treating this year because Zoie has out grown the tradition and really Raygen has no interest, but now that we have a costume we may have to rethink that?
This is how were spending our Sunday.  A nice relaxing day and the grey sky is now blue.  I can not believe the summer is over. 
Where did the time go?

Raygen's Zio heart monitor was delivered Thursday so hopefully in two weeks we will have some results of where Raygen's heart rhythm stands and how often she is having PVC's.

XOXO

Erin

Friday, August 26, 2016

Zio Patch





Yesterday we took Raygen to Seattle Children's and she had her Zio Heart Monitor placed.  It could either be placed on her chest or her back and we opt'd for her back since it would be harder to access.  This is such an amazing little machine.  It started to monitor Raygen's heart rhythm as soon as it was placed.  The process of placing the machine was not pleasant, but I think it was worth it.  This is so much nicer then a bunch of leads and a big heavy box for her to pack around.  They first had to clean her skin with alcohol and then they took a small piece of sand paper to rough up her skin and then they placed the monitor and lots of lots of tape to hold it down.  
The monitor can stay on up to 14 days and if it doesn't fall off on it own then I can take it off.  Raygen has really sensitive skin so if I see any breakdown or redness the monitor will have to come off sooner.  She can not take baths or soak in any water till the monitor is off so it will be sponge baths for awhile.  The longer the monitor stays on the more data we have.  
It will be two weeks after the monitor comes off before we have any results so this isn't a quick test, but necessary.

XOXO

Erin

Thursday, August 18, 2016

My Inspiration.


So after watching the movie "The Wild" with Reese Witherspoon walking the Pacific Crest Trail I really wanted to see the Bridge of the Gods.  So last year Randy and I went to Cascade Locks, Oregon and stayed the night and explored the area.
When we were there I discovered that every year they do a half marathon and you start at the Bridge of the Gods.  In my crazy head I was like "I have to do that."  I have been running for about a year and knew I could run 10 miles, but wasn't sure if I could complete a half marathon and by the time I discovered it, it was too late to run last year.
So as soon as we got home I watched online and when they announced the race date for 2016 I signed up.  I even signed up my husband!  I was able to book us a room for the night before and we were good to go.  I had a whole year to either get ready or talk myself out of it and before I knew it the 8 week countdown to race day was here.
I trained everyday for 8 weeks.  I either was running or lifting.  I cleaned up my diet and was dedicated to doing everything I could to finish 13.1 miles.  I wasn't planning on winning or placing.  I just wanted to finish.  To prove to myself that I could push myself.  I could do hard things.  I had the ability to sacrifice for a goal.  That I could show my girls that when you set your mind to something and work hard you can do anything.
If you would have asked me 5 years ago if I would ever run 13.1 for fun or even better, pay to run 13.1 for fun, I would have told you you were nuts.  I hated running.  I hated everything about running, except maybe the cute work out clothes :0).  Then I had Raygen.
I watched my newborn daughter go through the hardest, most invasive, lowest survival rate heart surgery and survive.  I watched my baby not only survive one, but three open heart surgeries.  I watched my daughter go through hundreds of pokes, echo's, ekg's, x-rays, ear tubes, g-tube, trach, and so much more and continue to fight.  I watched this little human who knew pain minutes after her birth fight a huge battle with grace.  Raygen inspires me to be better, do more and never tell myself "I can't."  
My first run was a small 3k race to raise money for the Hand's on Children's Museum where Raygen's lite brite wall was going to be displayed.  My love for running started because of Raygen.  I discovered this sense of empowerment of accomplishing a hard thing.  That amazing feeling after a long run.  
I never imagined I would be the mother of my hero.  It is such a blessing to see miracles happen.  They always say "Seeing is Believing."  I truly have "Seen" miracles happen.  I see a miracle everyday when I wake my daughter up in the morning.  I hear a miracle when I hear her giggle and chit chat to herself.  Raygen leaves me speechless.  She is a wonderful, amazing, loving little girl and you would never know from how happy she is that she ever went through everything she did.  You can't meet Raygen and not feel a burst of love surge for her.  You can not walk away from Raygen without thinking how lovely she is.  
Raygen is the reason I ran 13.1 miles in two hours and finished 199 out of 934.  Raygen and Zoie make me complete.  I watch Raygen learn everyday through her ABA therapy and struggle but fight through it.  I watch my daughter Zoie ride horses like she was made for it.  I watch them both do hard things and win.  
It is possible to do hard things.  It is possible to set a goal and if you work hard enough achieve it.  
In the early days I would always wonder "why" God had chosen my daughter to have half a heart.  Why did he think I was strong enough to handle it?  To care for her?  To be the mother she needed to go through everything she had along the way.  I still wonder if I will be able to handle the bumps in the road were bond to cross in her future.  I have quit thinking "why us" and choose to look at it like "why not us."  God put me in situation for it to change me.  To make me the person he wants me to be and he knew I would would become.  I feel so very blessed that he thinks so highly of me to bless me with not only one amazing daughter, but two.
Thank you Raygen and Zoie for being such an inspiration to me.  I love you two so very much.
I have already signed up for my second 13.1 race in November!!!

We can do hard things and survive.  God will not give us more then we can handle and I trust in that.

XOXO

Erin