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

Friday, August 12, 2016

Cardio Update..





Yesterday Raygen had her 6 month cardiologist check up.  I look forward and dread the cardiologist appointments.  I need to be reassured her heart is okay especially since she can not tell me if she "feels" different or if she is more "tired" then normal.  I'd like to think that I would notice quickly if something was off, but there is always a chance I wouldn't. 
Good News to report though.  Raygen's heart looks great.  She screamed through the EKG, like normal, and the pulse ox so it was showing that she had a lot of pvc's and her oxygen level was 85.  Her normal oxygen sat is usually 90 to 93 so it was lower, but I think it was because she was crying so much so I'm not going to stress on it.  We know she has the pvc's, which are extra little beats, between the regular beats of her heart and we are just watching them.  We wouldn't treat the pvc's unless they started to affect her quality of life or her heart function and neither is happening now.
Dr. Park is going to call and refer us to Seattle Children's so Raygen can have a wireless heart monitor for a 24 hour day and then we will be able to see more clearly how often she has the extra beats.  This will give us a good base line to compare to future test.
Otherwise Dr. Park was very happy with Raygen.  There was no changes to anything.  She will go back in 6 months for another check up and at this time have labs and an x-ray.  He even mentioned if everything looks good on the next appointment going to once a year check-up.  I don't think I'll do once a year, but he can try to convince me.
Dr. Park did mention that in Raygen's future, usually around the age of 10, she will need to have an MRI of her liver.  This is around the age they start to closely watch her for liver failure or liver cancer.  There is an up side to the Fontan and a downside.  It just proves that Raygen will have some bumps in her future and she will never be "better," but one thing she has proven time and time again, she will always be AMAZING!!!
Thank you to everyone who continues to pray for our family and Miss Raygen.  She truly is an amazing little girl and we are so very lucky.

xoxo

Erin

Wednesday, August 3, 2016

Just Things....


I love the features on Snap Chat.  Raygen makes the perfect little puppy.
We cleaned up Zoie's old power wheels to see if Raygen might like it.  First time out she wasn't too impressed, but we will keep trying.
Long days of ABA therapy and work wears these two out.
Waking up with Yo Gabba Gabba.
Bath time with this girl is always so much fun.  I just love watching all her facial expressions.

Next week is Cardio.  I'm nervous.  It's been almost 7 months since her last check-up.  I am needing some reassurance that everything is okay.

xoxo

Erin

Sunday, July 24, 2016

Parties...


Saturday we celebrated my little cousin's 2nd Birthday!  It was a beautiful day for an outside party and Raygen loved running around.
She has fallen in love with this pink haired mermaid.  She takes her everywhere.  So she wasn't leaving her at home for this party.  Raygen and her mermaid checked the entire place out.  This girl goes 90mph non stop. 
Getting loves from her great grandma.
Raygen loves running up and down hills.  Thankfully there was one at Josee's house because that is where we spent most our time.  Raygen, Mermaid and me running up hills.  I am very grateful this girl helps me do my cardio and I don't even realize it :)

Our first week of ABA Therapy went good.  We discovered that Raygen knows all her ABC's upper and lower case, she can point to cards when asked that say "Mom," "Dad," Raygen," and "Zoie."  She is so smart.  Raygen just amazes me everyday.  I know I say that in every post, but she really does.  She knows so much more then I could have ever realized.  I think she is going to keep surprising me. 

XOXO

Erin

Friday, July 15, 2016

ABA Therapy


Things have been going pretty good around our household.  No news is good news, right?  Raygen has continued to impress me everyday.  Her newest thing is drawing a circle and a square when I ask her.  It's crazy to realize how smart she is because I tend to forget since she doesn't speak, but I think she is a little genius.  I may be bias though :0)
We have gone through the process of starting Raygen in ABA therapy and she will begin on Tuesday.  I am really excited and also unsure.  I have no idea how this will play out or the process.  I do know for sure that it will be 5 days a week for 4 hours a day.  I know we are very lucky to be starting because there is a wait list in our area over 300 kids long.  They are very strict on their rules and I completely understand why.  Thankfully, the therapy will come to us at my office so I can still keep my job. 
I will post theraphy updates and keep everyone informed of the process.  Because ABA is so new there isn't too much out there especially from parents of children doing it.  If so I would have read a ton, but no such luck.
Zoie is keeping us busy with her horses.  As I type she is heading to a barrel race.  Summer is flying by and I'm just trying to live in the moment and not miss anything.  There have been so many horrible things happen in our world lately that it really makes you appreciate life and everything God has blessed you with.

Saturday, July 2, 2016

Summer Time Fun!!

Raygen and her BFF Gabby had fun playing in the pool yesterday.  That was till Raygen decided she needed to go splash crazy.  Gabby wasn't a fan of being splashed and I don't blame her.  This is a big deal for these two.  Sitting this close to each other even for a short time is a huge accomplishment. 
Raygen worked on her bubble skills by dipping the stick and air waving it.  It worked though.  She made bubbles that way :) and I didn't have to blow them so it was a win win. 

Gabby liked the duck.  She even started to love the pool and hot tub by the time we were done.  Were going to do this a lot this summer I think.  It's good for the girls and it's good for us special needs moms to get together and chat about our crazy lives. 

Happy 4th!!!

Tuesday, June 28, 2016

Sunny Days are here!

Raygen's newest talent is amazing.  She can now line out her alphabet forward and backwards without any help.  She is so smart.  There is so much she knows, but since she doesn't speak it's hard to understand HOW much she knows.  Raygen has made huge leaps and bounds the last few months.  She is communicating with us with sign and pointing better then she ever has before.  She is tasting lots of new food and she is such a good listener, when she wants to be ;)
The sun finally came out this weekend in Washington.  The weather Sunday was beautiful for a birthday party.  This was the first time Raygen has ever had the chance to play with a sprinkler.  At first she wasn't too sure about it, but by the end of the party she was soaking wet and loving every minute of it.  I could watch her all day doing this.


Monday was another hot day so Raygen had some pool and bubble time at Grandma's.  She sat in this pool for over an hour and even then didn't really want to get out.  I think tomorrow is suppose to be another sunny day here so she may get a chance to have some more pool time.


Raygen is doing awesome this summer.  Her cardiologist appointment was moved back to August.  This will be the longest stretch we have ever went between visits and I can't help, but be uneasy.  Even though Raygen is doing awesome and looks wonderful I still worry about all the things I can not see.  I just love this kid so much.  She truly feels me full of joy every day and as her mom it's my job to worry, right?  But that worry will not make me miss the joy of the here and now with her. 

This weekend fingers are crossed for a sunny fourth.  Our plan.....Staying Home!  I know not too exciting, but staying home doesn't happen often enough for us so I'm really excited to spend the day enjoying my husband and amazing girls.

More vacation pictures soon.

xoxo

Erin

Thursday, June 23, 2016

Spokane..


Day one of vacation this year started out very early.  So Raygen had a little nap mid morning.  We had a 6 hour drive ahead of us and our first stop was the beautiful Spokane.
We spent the afternoon at the awesome Riverside Park.  Isn't this the greatest slide?
Great views.  The weather was perfect.  Warm.  I noticed the weather at home was pouring down raining so this was an improvement :)
Raygen loved being pushed around the park.  She is such a people watching kid.  She loves being outside.  I think it's her happy place.
We promised Zoie lunch at Red Robin.  I love Red Robin because they hand out balloons on sticks.  It's the greatest thing ever for a mom because we got two and Raygen was entertained the whole time.  It made for a peaceful lunch and I actually got to finish and not dash out of the restaurant with a screaming kid.  It also helped a little that there was a near by Starbucks so we got Wi-Fi ;)
Views from the park.
Of course, Zoie, had to have her picture taking with the totem pole.  Not by her choice, but because I wanted her to ;)

Day one was awesome.  After a couple hours at the park and lunch we all loaded back up in the car and headed toward Idaho.

Silverwood here we come....

xoxo

Erin

Saturday, June 18, 2016

Aiden's Make a Wish

Aiden had his Make A Wish Day this week.

We love Justice Boy!

I think it is a must read for anyone who loves a heart hero.