Happy Monday...

How can this face not make you smile?

Yes, Raygen was having a crazy hair day, lol!  It didn't help that I was playing with it and spiking it also, lol! 

She thought it was great, she just kept laughing. 

We went for a family drive yesterday and my sweet girl took a nap. 

She had a grip on her new favorite toy.  An old house phone I found and now she doesn't seem to let it get too far away from her.  Zoie tried to take it from her when she fell asleep and she woke up crying till Zoie gave it back and then she went back to sleep, lol!  It was so funny.  It's like she woke up and yelled at Zoie for taking her phone, lol!  Pretty soon they will always be yelling at each other, just like my sister and I did when we were young.  Cant Wait :0)

So my new favorite show is Downton Abbey.  Has anyone else jumped on this bag wagon?  I love it and I think it's one of the best shows out right now.  I love that its entertaining but classy.  This is something that if Zoie walked in the room while I was watching it I wouldn't have to turn the channel and there isn't much of that on right now.  I recommend watching this show if you haven't.  Let me know what you think.  I'm hooked.

Cheering on Big Sis..

 Last week Zoie did mini-cheer camp and performed during the boys basketball game on Wednesday night.  We decided we would all go and support her.  Randy and I stood on the side lines and watched and made sure we didn't get around a group of people just in case anyone was sick.  Raygen looked supper cute in her hat and I really think she enjoyed watching all the excitement.

My pictures are a little dark for some reason, but Zoie did a cheer and a dance routine and she did awesome!!  I see a cheer leader in our family in the future. 

Were so proud of you Zoie!!!! 

On a Raygen note I changed her diet up this week with help from our dietitian because Raygen has become so much more active then she was 3 months ago that she has started to loose weight.  I have been really nervous about taking Raygen of her formula recipe because I just want to make sure she is getting everything she needs from a nutrition perspective.  Since she really isn't eating too much by mouth all of her nutrition comes from her tube feeding.  It scares me to change things when they are working so well and Raygen is doing so good, but I think it was time.  Raygen is now on a mixture of beneprotein with peptum jr and pedialite.  Making her formula now is so easy and takes me seconds instead of about 10mintues as it used too.  The mixture also can hang longer in the bag so I don't have to get up anymore in the middle of night to refill it.  I could possibly sleep a whole night without having to get up, if Raygen lets me one night, lol!  We will check her weight in a week or two to make sure she is gaining a little or at least maintaining.  Wish us luck.  Hope everyone has a great weekend.  We have a busy week ahead of us.  Two big appointments, ENT and the Blood doc one in Bellevue and one in Seattle so we will be on the road alot.  I'll keep you posted.

Cardio Update...

So were finally home :0)

The cardio appointment went pretty good overall.  Raygen had an echo and ekg and a chest x-ray.  Dr. Park thought everything looked great so we don't have to go back for 3 months, whoo hoo!!! Thank you Jesus.  So next week we head to Seattle to see the Blood doctor and Bellevue to see ENT a follow up for her ear tube surgery so we will have a busy week.  I promise to post pictures soon, but I forgot to take any today.  Raygen gets herself very worked up at doctor appointments so my focus is on keeping her calm so we can get actual test results, lol!

Thank you for all your prayers today.

God is good all the time!!!

Cardio Doc Today

So were off to Tacoma now to see Dr. Park, Raygen's cardiologist.  Her appointment is at noon today.  I'm not sure what test we will have done for sure, but most likely an echo and ekg.  Wish us luck and I will post tonight how it goes.
Thank you to everyone for all your love and support and especially all the nice emails regarding Raygen's story in the paper.  We love you all so much.

Sending lots of big heart hugs your way.

Sharing Raygen's Story with The Chronicle

Onalaska Parents Pour Their Hearts Into Baby Born With Only Half of Hers

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Last Wednesday we were interviewed by our local paper and we were able to share Raygen's Story and hopefully bring awareness to CHD.  The Link below will take you to our paper.

http://www.chronline.com

I want to give a huge thanks to Lisa Broadt for writing a wonderful story and Pete for the great pictures.  It was such a pleasure working with both of you.

I also want to take the time to thank Dr Park for all his hard work at NW Children's Heart Care, he is truly an amazing doctor.  A HUGE thank you to NW Pediatric, Dr Polly, Lynn, Tara, and the whole staff, without you as a life line we would be lost.  Darcie at Mended Little hearts, we love all your hard work that you do for heart families.  A huge thanks to all our family, friends, and prayer warriors.  We love all of you.

We have a long road still to travel, but with God, Family, and Friends we won't be alone.

Facing Forward

Today Raygen rode in Dad's Truck facing forward for the first time.  I know it doesn't seem like a big deal, but for Raygen change is huge.  I really think she enjoyed herself and looking outside.  I know I enjoyed watching her facial expressions as we took Zoie to school. 

She is growing up so fast.  I didn't think this time last year that we would be where we are today and I am so blessed and grateful.  We have so many people that love Raygen as their own and that take the time everyday to pray for her and I thank you so very much without all the love and support we have received I don't know where we would be.

And my other beautiful daughter.  Zoie was so happy it's Friday, a half day and I'm making her favorite dinner.

Next Wednesday we head to the Cardio doc.  I always get so nervous when these appointments approach.  They can be the best or worst days of your life.  I'm going to try not to stress till I have to.

 

I hope everyone has a great weekend!!!

Feet are better then hands....

Raygen as you know does everything with her feet.  She tends to use her feet more then her hands for the most part.  She loves to play with her tv as you can see.  The tv is not only for watching Elmo, but her kick toy as well, lol!

Raygen loves keys and glasses.  I think those are her two favorite toys at the moment and as you can see she loves to hang the keys off her toes and kick her tv, lol!

 

"Elmo what do you think of my keys?"

She even rolls with the keys on her toes, lol!!

 

 

I mentioned earlier how Raygen loves to play with doors and she hates when they close and she can't open them, so here is my door stopper at work, lol!  A toy cow and alot of tape, lol!  It works!

Raygen with her glasses.

 

 

I want to get a video of how she is getting around these days and I promise to and I'll post it soon.  You won't believe how she can get EVERYWHERE just by rolling.  There is nothing stopping this girl now!!  She's a mover.

I finally got some appointments scheduled to get us ready for Raygen's MRI.  We will be going to Seattle twice, Bellevue once and we also have a couple appointment in Olympia.  This will all be happening in the next 3 weeks.  Needless to say, I also have my full time job and Zoie, and a house and husband to care for as well so saying I'm going to be a busy women is an understatement.  Thank God for my Mom!!  I will keep you posted on our appointments. 

I also have some big news to share in the next few days so stay tuned.

Nero Update

So I don't know if what we found out was good news or bad news.  Her Nero doctor thought that her right side weakness (in her arm and leg) was more brain related then clot related.  She also noticed that Raygen has some right side weakness in her face.  Raygen has blood clots in her right arm and right leg.  The doctor stated that if the weakness was clot related Raygen's arm and leg would be smaller then her left and would be weaker.  In Raygen's case her right arm and leg are bigger then her left and she has less muscle tone because she favors to do everything with her left arm and leg.  I hope that makes sense.  So the next steps are setting up more appointments.  Nero wants us to see a blood doc to make sure she doesn't have any blood disease and have a pt exam.  After these appointments we will see Nero again and then schedule and MRI.  Raygen will have to be sedated for the MRI so as you know we are not looking forward to it, but at the same time we really need to make sure we are not missing anything that could become or could be serious.  So I left the Nero appointment sad and nervous.  So many "ifs" and unanswered questions to whether Raygen has had a stroke sometime in her life or if she has something like a tumor in her brain.  Both so scary.
Today Raygen also had her second synagise shot.  I felt so bad for her because the shot was very painful and she cried for such a long time.  Now my girl is happy and laughing at Sesame Street so although we had a tough stressful couple days the weekend it starting out good.  There is no better sound then my girls laughing.

How I love drawers...

I don't know if I have ever told you how much Raygen loves to open and close doors and drawers.

It is way better then any toy you could ever buy her, she loves it.

 

 

 

She gets herself very worked up when the doors or drawers are closed and she can't open them.  She is always playing with our bathroom door at home and has discovered she can open our kitchen cabinets as well.  I guess it's time to start baby proofing.

 

I know the picture is kind blurry, but I just ordered her this Fisher Price Playset that has a door.  I hope this will entertain her more then the bathroom door at home, lol!

 

We head to Seattle tomorrow for her Nero Appt.  Wish us luck.

Trial and Error...

My sweet girl before heading to work.

 

 

So Sunday Randy and I decided to see what would happen if we didn't feed Raygen through her g-tube in morning.  We wanted to see if we could get to eat and drink more by mouth.  Raygen is starting to eat more baby food, but the drinking is moving a little slower.

We turned her feed off at 6am and finally around 10am Randy was able to get her to start eating.  I had to take a picture from behind because I didn't want to distract her from eating.  Raygen eats best in her saucer with Sesame Street on, no joke, it works for her.  It took her about an hour to eat a whole jar of pears and she never really did start taking any liquid from her bottles.

We decided around noon to start giving her water and food through her tube again.  I don't think it was a complete failure but I think we still have a long way to go before we are off the tube.  I heard through Sisters by Heart website about a website called notube.com and have been talking with them and hopefully we can sign up and they can help us wean her.  It is a four week program that is web based since the doctors are in Europe but they have a 96% success rate.  How can you beat that?  Raygen did have a hard time sleeping last night so I am wondering if her system got out of wack with us changing up her routine.  I have no idea how to wean her off the tube, but I do know that somehow we have to let her feel hungry so she knows that eating helps take care of that and so far no doctors have helped us figure out a plan on how to do that.  The notube.com netcoaching program is about $6000.00 so we have emailed her doctors and I have been talking with the insurance company and hopefully they will help pay. 

We go see Nero on Thursday so wish us luck.  Please say a prayer for my girl.

Erin