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

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!!!