Friday, December 19, 2014

All I want for Christmas is a box....



Raygen is so much fun this year!!!  There isn't a day that goes by that she doesn't have us all laughing and playing.

Wednesday, December 17, 2014

Lets Roar N' Run....

Join us and spread awareness of congenital heart disease with our Roar 'N Run 2015 Virtual Charity Race!

Choose 5K, 10K, 13.1 miles, or 26.2 miles to walk, jog or run during CHD Awareness Week, February 7-14.

 
Get your family and friends to join you to spread more awareness.  We will provide participants with awareness facts and statistics to post during CHD Awareness Week.  Share your stories to raise awareness too.

 
There will even be some live events with our chapters where you can join others to do some of your miles together.       
  
Only $25 to register for ANY DISTANCES!  All participants receive a commemorative medal! 

  • Congenital heart defects (CHD) are the most commonbirth defects in the U.S., affecting about 40,000 babieseach year, but most people do not know this. Participation in this event raises awareness about congenital heart defects--tell everyone what you are doing and why.  Wear CHD t-shirts and sweat shirts while you participate.  Share your story to social media venues.  We will also give you CHD facts to share as well.
  • It is good for your heart.  February is Heart Month.  What better thing to do than to exercise and create awareness at the same time?
  • Funds raised help Mended Little Hearts empower families by providing a caring support network, education and awareness. Our goal is to give 10,000 Bravery Bags to families in the hospital in 2015--help us reach that goal
  • You get a really cool medal and a certificate of completion to hang on your wall.


Monday, December 15, 2014

Raygen likes the tree....




Raygen couldn't get enough of the tree this weekend.  She wanted so badly to lay underneath it.  She settled for just putting her head as close as she could get it :)

xoxo

Erin

Thursday, December 11, 2014

Nero Checkup:





First of all I have to say Raygen did AWESOME!!  She was such a happy girl yesterday.  The only time she cried was when they took her height and weight.  Other then that Raygen did great.  She is 30lbs now and 36 inches long.  She is getting so big.  I was so impressed that Raygen interacted so much with the doctors she saw.  Even giving smiles and she was very happy to wave "bye bye!"  
So basically the outcome was: Yes she can benefit from therapies.  This is a given.  I am not ready to jump into therapies yet, but am checking around at our options.  The therapist stated we should start with one being either physical, oral, or speech and focus on that.  Randy and I are thinking we would like to start our focus on oral since Raygen is showing interest in eating.  We can then move onto other therapies later.  I was thinking about getting her in a preschool environment later on to see if that would help her interact with other children and get her out of her shell.
Also they did see signs of autism.  The doctor said she thought 99% Raygen was autistic.  A few of the signs were: not speaking, not acknowledging when spoken to and some of her play tendencies.  Although she saw signs of autism I think it is a little early to tell.  I am not going to stress about this information, but just give Raygen time to see how she does.  She has come so far lately and with all she has been through time is all she needs.
Tomorrow is our last doctor appointment this month.  Thank goodness it has been a busy, stressful week.

xoxo

Erin

Monday, December 8, 2014

GI and a Mended Heart Tree!!


Raygen at her GI doc appointment today.
She was such a happy girl today.
She did awesome during her tube change.  It wasn't scary at all.
The Mended Little Hearts Tree in Tacoma!!!
Raygen loved to look at it.  She loved all the lights and I thought it was beautiful.

That is Raygen in the bottom right corner.  That is after her chest closure after the Norwood.  I can't beleive how far she has come.
I thought the tube change today was going to be so scary, but it went so smooth.  I am so thankful because I had to go by myself and it was nice how well the day turned out and now Raygen has a new tube.  Were good for 3 months now.  She also gained weight so that's always a plus.
Tomorrow we will be all day at Seattle Children's for Raygen's Nero appointments.

Thank you to everyone who continues to pray for this sweet girl.  

xoxo

Erin

Thursday, December 4, 2014

Cardio Update...


Raygen playing in the waiting room prior to her EKG.


Her cardiologist appointment overall went pretty smoothly.  She cried during the x-ray and ekg, but we were able to get both done so it wasn't too bad.  She also had to have her finger poked to check her i.n.r. level, which was in a good range so no changes with her warafrin (blood thinner.)  Her x-ray looked so good they decided we could finally start to wean some of her diuretics, which is great news because being on such high doses for a long period of time could start to damage her kidneys.  We are weaning very slow and if I notice any changes in her breathing or congestion then we will go back for another chest x-ray.  Raygen was still having pvc's during her ekg so next check up in January she will go home wearing a monitor for 24 hours.  This will help us determine how often Raygen is having them and if we need to talk about a pace maker.
Next week will be so busy.  GI in Tacoma, a nero appointment in Seattle and a wellness check in Centralia.  Lots of traveling and probably a very stressful week for all of us.
I am a little concerned with Raygen's pvs on her ekg because I really do not want my 3 year-old to have a pace maker.  Makes me a little nervous.  I am so thankful that overall she is doing so well.  She walks more then she scoots now and she is such a blessing to have.  

XOXOXO

Erin

Monday, December 1, 2014

Kiss the hand.


My dad asked Raygen for a kiss and this is what he got :)

She was pretty impressed with herself :)

I love that she is so close with my parents.  She loves playing with them.  She loves teasing my dad.

xoxo

Erin

Thursday, November 27, 2014

Tuesday, November 25, 2014

Oral therapy here we come...





Today we start oral therapy again.  I don't think Raygen is too impressed to be going anywhere in our weather, but I would really love if next Thanksgiving my girl was eating.  I think we could get there.  I'm not setting any high expectations but even if Raygen was have tube and half by mouth or hey how about just anything by mouth I will be happy.  It's so scary to teach someone to eat.  The choking and gagging, probably tmi, but it's part of the process is so scary.

I will let you know how it goes.  Fingers crossed.

xoxo

Erin