Friday, July 24, 2015

Not just a limb


Raygen decided on her four wheeler ride with Grandma that picking just a flower wasn't going to cut it for today.
Look at that face.  How can you say "No?"

She needed a limb.  Grandma tried to give her a smaller one, but with no success.

She needed the whole branch.  There is Lyons' blood in this girl.  She is already logging.

Thursday, July 23, 2015

First Born


Last year I was able to share part of my experience of being a mother to a special needs child and how it affected my older daughter.

Thought I would share...







Tuesday, July 21, 2015

Friends..


Raygen fell asleep on my lap the other night holding her Ipad.  She is so funny.  She wasn't going to share with her sister till she had to.  Thank goodness she didn't wake up when I took it from her to take her to bed.

Here is Raygen's best friend Gabby.  Her wonderful, amazing mother takes beautiful photographs.  I love this one of the girls with their "Super Women" shirts on.  Gabby is a miracle baby like Raygen.  How often can you say you have witnessed two miracles together?  Not often, but trust me these two girls are truly that.  Christina and I know that we are very blessed Mama's to have these amazing girls.

Here is our last play date.  If you can call it that since neither of them actually play with each other?  They notice each other.  Glance at each other, but no actual playing.  Just getting them to be around each other is all that matters.  Someday they will realize they are best friends. 
I love having friends so close by that knows what it is like to live the unconventional life of having a medically fragile child.  It truly is a blessing that Gabby and her Mama are in the same small town as Raygen and I.
 
xoxo
 
Erin

Wednesday, July 15, 2015

Loving Outside


Raygen loves outside..
she loves picking flowers,
walking,
picking more flowers,
and more flowers,
talking,
more walking,
and more flower picking, lol!

This is how we spend our days.  It's wonderful.

xoxo

Erin

Sunday, July 12, 2015

Lincoln City 2015


Raygen loved the ocean.  She gets that from me :)
It just amazes me how this girl isn't scared of anything.  She lives life to the fullest.  I love watching all her expressions when she tries new things.  The sand was an experience to witness.  At first it didn't look like she liked it, but after awhile she loved standing still long enough for her foot to sink down and then she'd pull it up real fast and repeat :0)
Her energy level is amazing.  This girl can just go and go.  She doesn't like to turn around and walk back at all.  Usually when she finally tires she just sits where she is and expects you to carry her back.  I can't help, but smile and laugh every time.
Zoie is wonderful.  She loves water of any kind.  This girl could swim all day long. 
Sisters...This picture says it all.
Raygen going for one last walk before we head home.  I can't say enough about our weekend get away.  I had so much fun and I know my girls did too.  It went by way too fast, but I certainly have memories to last me a very long time.
 
xoxo
 
Erin

Friday, July 10, 2015

Cardio Checkup



 
Today Raygen had her cardio check up.  It's been 6 months since her last one, so to say I was nervous would be an understatement.  Not that I believed anything was wrong, but you just never know what's going on inside.  The good news is her echo and ekg looked wonderful.  Thank God.  Were not changing a thing.  She will continue to be on her four doses of diuretics and continue with her baby aspirin.  We are so very relived and grateful that Raygen continues to do so well.  We asked Dr. Park about warning signs that we should be aware of and he stated that breathing hard and loss of energy are the major signs.  This has been a constant thing we watch for.  Dr. Park stated that if things change they can change fast.  Dr. Park knowing better than anyone that there are never any guarantee's with half a heart.  We are now on the maintenance cycle of Raygen's care as long as her heart continues to do well we will see Dr. Park every 6 months and once a year have full lab work up and x-ray of her lungs.  Dr. Park stated that when Raygen is around the age of 10 we may start to monitor her liver with ultrasounds and blood work because liver cancer and liver failure is one of the side effects that come along with the Fontan. 
I have to admit I did not sleep well last night worried about Raygen's appointment today.  So tonight I will snuggle with my baby and sleep better knowing that today everything is okay.  Thank you to everyone who continues to keep Raygen in your prayers.  Everyday we have her with us is an incredible day.
 
xoxo
 
Erin

Wednesday, July 8, 2015

Beach 2015


For the 4th this year we headed to Lincoln City.  It was so beautiful.  The weather was amazing.
Most of my family was on a fishing trip in Alaska so my sister was able to come with us.  It was a lot of fun.  The last time I was at the beach with my sister she was in high school and I was in middle school.  Take my word for it.  It was a long time ago :0)
My mom came too!  It was fun to have all of us girls hanging out together.  
We went shopping one day at the outlets.  I love the Lincoln City outlets.  They have all my favorite stores.  I think I could have spent a couple days there just shopping.  But with two girls and a beautiful sunny day at the beach, we only spent the morning shopping.
Raygen made herself comfortable in the grass at the outlets watching people blow bubbles.  There are so many cute pictures to post I have to split them up :0)

More to come.

xoxo

Erin

Monday, July 6, 2015