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.




Saturday, June 4, 2016

Busy Girl and ABA

We had a busy week.  Besides Raygen being her happy self and not letting mom keep the canned food put away were also are in the process of getting ABA Therapy.  This is such an awesome, exciting step for Raygen.  ABA Therapy is suppose to be the best therapy out there.  It is completely based on Raygen.  It works with her and not against her.  It will not only help Raygen, but it will help us with Raygen.  The therapist will come to us and work with Raygen where she is comfortable.  I am not sure when it will start or how many hours a week Raygen will do, but I am really curious and excited to see how it works.  It's a very new therapy with a very long waiting list so we are very blessed to be starting soon. :0) 
Zoie discovered she can no longer make private forts because her little sister will take them over :0)  I just love this picture.  My babies are no longer babies.  They truly are my inspiration in everything I do. 
You leave Papa outside with Raygen for one minute and you come back to this...... 
in her pool, filling up with water, with all her clothes still one.  Even the shoes :0)
Papa and Raygen together is nothing but trouble, lol! 

Scheduled Raygen's next cardio appointment for July 11th.  I'm nervous, but confident that she is doing good.  The funny thing is, that I never feel confident and that makes me more nervous, lol!  I am known to be a worrier so if I don't have anything to worry about, that makes me worry.  It's a never ending cycle for me :)

Vacation is fast approaching.  I hope Raygen loves Silverwood!!!!

Sunday, May 22, 2016

Rehab Doctor Visit

On our discharge paperwork from our visit to Children's last week I saw that they listed Raygen's surgeries in order.  I am just in awe of what she has went through and conquered.  It's amazing to me that all her surgeries look so small when typed out on paper, but each one was a chance we could have lost her.  Thanks to an amazing God, hospital and an amazing daughter she fought through each one and is certainly a hero in our book.
My little wiggle worm.  This girl no matter how large the bed ends up doing circles in her sleep.  I've learned the safest bet is a mattress on the floor.  She hates blankets on her as well so if you try to cover her up she immediately kicks them off.  She is total opposite of her mom in that category.  I have to have blankets :0)
Raygen did wonderful on her visit to see the Sports Rehab Doctor at Seattle Children's last week.  The reason I wanted to take Raygen was to see if there was anything I needed to be doing to improve Raygen's function on her right side.  The great news is the doctor said "No."  She said that Raygen was doing great.  She said that Raygen won't ever walk completely normal because she did survive a stroke that does affect her right side movement.  The doctor also stated that she is happy to see how Raygen runs and walks and even how she uses her right hand.  Raygen doesn't use her right hand much, but the doctor stated she used it enough not to need any braces :0)  She also stated that Raygen didn't need any bracing for her feet :0)  I am so relieved because when we did try to brace Raygen's hand and feet she refused to use them.  She didn't walk and didn't use her right hand at all.  Basically, Raygen will come up with her "way" of doing things and that's okay.  It may not look "normal," but really what's normal?  Raygen's stroke affected so many areas of her body and now that she is growing and becoming so active we are seeing more and more of it.  Also, where her brain was damaged with the stroke is very close to the language area of the brain and so that may be the reason she is speaking yet?  I also learned that Seattle is doing some studies on CHD children and brain development and they are coming to the conclusion that even full term CHD babies brains when they are born are not developed full term.   Their brains are still that of a preemies??  I am so thankful that we have a wonderful group of doctors that continue to research and discover so many amazing things that will help the lives of our CHD babies here today and ones to come in the future.

XOXO

Erin

Tuesday, May 10, 2016

Mother's Day

I had a wonderful Mother's Day Weekend.  Saturday we had a huge family picnic to celebrate my Grandpa's 82nd Birthday and it was fun to get the whole family together.  It was a beautiful sunny day.   
Sunday we took Zoie saddle shopping and Raygen got a new cowgirl hat.  She loves it.  She looks so cute in it.  
I love these two wonderful girls.  They make my life so much fun.

Tuesday, May 3, 2016

Dressing Up


Raygen has been into trying on my clothes lately :0)
It's the cutest thing ever.  I love how she has to go look in the mirror and see how she looks. 
My girl busy at work. Raygen has decided she likes to sit in the office chairs through out the day.  She's very professional. 
Raygen and her cousin Layton.  There some what playing? at least sitting close to one another.  That's a big deal for Raygen. 
I just love how grown up she looks in this picture.  There are moments when I just look at Raygen and know she is wise beyond her years.   
Trying on Mom's boot socks, lol!  I think Raygen and I have the same taste in clothes, lol!

I just love this girl so much.  There isn't a day that goes by that she doesn't inspire me, make me laugh, or teach  me.