Seaside...

We had our family get away last weekend to Seaside.  It was fun.  The weather was horrible, but we made the best of it anyway.  Our first stop was the Maritime Museum in Astoria, Oregon.  It was very interesting and had a lot of info and exhibits.  It was worth stopping for and a good break for the girls from the car. 

One of the exhibits. 

The museum had a lot of hands on for Zoie.  Here she got to pretend to drive a boat.  She thought it was very cool. 

Raygen and dad hanging out. 

Finally in our room at Seaside.  I love this shirt.  I think it fits Raygen perfectly.  It says "I'm kind of a big deal!" 

Raygen pulling on her feeding tube, lol!  She almost pulled it over, but I keep a close eye on her.  Her tube lately has been one of her favorite toys, lol!  I guess because it's always there to play with, lol! 

Raygen did very well.  The weather was way to nasty to take her outside so we pretty much hung out in the room, but we did have a nice view to look at. 

Zoie and my niece, Taylor, carving pumpkins.  They also got to play in the game room, air hokey, mostly and got lots of pool time. 

Overall we had a good weekend.  I can't wait for another trip.

 

Happy Halloween tomorrow!!

ENT Update:

 I just love this outfit.  This is what we started the day out wearing.  But in true toddler form we usually go through a couple outfits.

 The whole reason for going to ENT.  Raygen going for her ears.

 We got to the doctor a little early so Raygen got some peek-a-boo barn time.

 Outfit number two, lol!  She was wearing the cutest Halloween pants.

She loves to kiss the animals, lol!

So the doctor agrees that Raygen needs tubes in her ears.  Not the news that we wanted, but I figured he would say so.  He said any normal baby at her age with fluid in their ears as long as Raygen he would do tubes.  He thinks that this could be holding her back with talking and walking and over all development.  He also wants to scope her airway since she will be sedated for tubes.  Anything that affects her airway scares me.  I really don't ever want to her to have a trach again and with one paralyzed vocal cord any swelling or irritation in her airway is just terrifying.  He wants us to schedule her lung perfussion test first.  Both test require an iv with some form of sedation.  The two procedures can't be done at the same time or same day.  Now I have no idea on what I should do.  Do I try to schedule them so we can do both with one iv or do I just space them out a little.  I hate going to the hospital.  It scares me.  The doctor said that he would want her to stay at least one night after the tubes, but I know the last lung perfussion test we went home the same day.  So I'm not doing anything today.  I thought I would take the weekend and let everything set in and start making my calls on Monday.  I hate putting Raygen through anything.  Especially when she is doing so good. I wish I could go through all this for her.  The iv's, surgeries, all of it.  I would do anything to make it possible.  

Something to make you Smile

Raygen is so funny she is the light of our lives.  I had to share a video that truly shows how she brightens our days and always makes us smile.

Tomorrow we head to Seattle ENT.  I will post an update when we get back.  I just pray that she doesn't have to have surgery.

Weekend Recap

Raygen playing at work.  Gosh this girl is just too cute!

Grandma Lori bought Raygen a new toy.  She loves it.  She is still a little short to reach the ground, but she is so close.  I have a feeling once she figures the walker out she will be all over the place.

The girls got their pictures taken this weekend in their Halloween costumes and matching snoopy pj's.  Zoie wouldn't let me take her picture.  The picture taking experience with a 18 month old is hard, lol!  Raygen fell alseep on the way there and I had to wake her up for the pictures and that is never good.  She cried the whole time till we were done and then decided to be happy and smile, lol.  I don't care though.  I know we got a couple good pictures and I'm happy with that. 

Raygen thinking she may like this better then a bottle???

Cute pj's

We also got our pumpkins. (excuse my messy kitchen we are remolding our laundry room which is behind the girls) 

My two beautiful daughters. 

Zoie is getting so big.  This year she carved an entire pumpkin all by herself.  No help from mom or dad at all.  The best part was that she made it for her sister.  It has a heart and the word love on it.  Zoie is so sweet.  I just love this girl.  I just love both my girls.

I hope you all had a great weekend.  We have a busy week ahead of us.  We head to Seattle on Wednesday for ENT appointment which I am so nervous about.  I just don't want tubes or Raygen's tonsils out.  I will if its the best for Raygen, but the idea of putting her another procedure with an iv and sedation scares me.  Plus, now Raygen is so much more aware of everything that I'm sure the whole experience would be so traumatic for her.

Friday we head for a much needed mini vacation with our family.  I'm so excited to get away to the beach with my girls.  Even if we spend the whole time inside I'm just excited to get away.

Sisterly Love..

Couldn't help but share...

Halloween Sneak Peak

 We decided to try on the girls costumes a little early to see what we thought and they looked soooo

 Cute!!!!!

 Zoie picked them out and she did an awesome job!

 I'm am taking the girls on Saturday to get their pictures taken in their costumes.  I'm so excited.

 Papa Brad and his girls!

We purchased Raygen's costume from Carters.  It is so nice.  Zoie's I found online.  I am also having the girls get their pictures taken in matching pj's.  I am horrible  but I love to see my two girls matching, lol!  Hey as long as Zoie lets me.  I will match, lol!

I am also taking Raygen to get her tonsils and ears checked Friday morning.  I hope they are better.

Tonight an Angel has her wings

"Let not your hearts be troubled. Believe in God; believe also in me. In my Father's house are many rooms. If it were not so, would I have told you that I go to prepare a place for you? And if I go prepare a place for you, I will come again and will take you to myself, that where I am you may be also"

Sadly I am coming to tell you, after a long hard fight Addison went to live with the Lord tonight. She was the most Amazing blessing I have ever witnessed and know she made a huge impact in every persons life she came in contact with. I know the Scott family appreciates all the ongoing love and support. At this point in time the family is holding tight to each other and are not going to be accepting phone calls. However I just ask you all to continue to hold them up in prayer, that god comfort them in this time of need.

How my heart aches.  Please pray for Addison's family.  I can't help but cry.  I know God has a plan, but at times like these it is always so hard to understand.  Although I have never met Addison, she was an amazing little girl who touched my heart completely.  May Addison find peace and comfort with the Lord and may her family find comfort that she is no longer in pain.

Please say a prayer tonight for all the heart babies, heart angels, and families.

Addison needs your prayers...

Here is the latest update on Addison:
Once again this is Lacey updating while Danny and Angela are at Addison's bedside. Where to even start?... Last night Addison had seizures and coded. It took the team of doctors 3 hours or more to get her back and she was put on ECMO and complete life support. The doctors and everyone are at a complete loss as to why and don't have many answers. They are doing all they can for her and running many tests to try to figure out why and exactly what went wrong. Today she remains on ECMO. They are doing testing to see if or what brain function she has, they are giving it a full 24 hours. The doctors have said they think Addi can stay on ECMO for 3 or 4 days at best. Past that they don't think she will survive. Between the numerous infections and now rejection her heart function is depleted and now the seizures the doctors are just at a loss. Thank you for the continued support and prayers during this time.
Please pass Addison's story on.  Addison and her family need all our support.

Please pray for Addison

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Please Pray

Posted 36 minutes ago

Hello, this is Lacey helping Danny and Angela send an update. Addison has had a very rough few days. She is now back in the CICU. Addi has tested positive for EBV-virus and a Cdiff infection. On top of that she is now showing severe decrease in cardiac function and rejection. They started her on Milrinone to try to help her heart function. This as you can tell is an extremely hard time and the Scott family has been told once again that their miracle child may not make it. I am just asking everyone to please please please Pray! Please keep prayer chains going and lift up Addison and her family in prayer, may God be with them and comfort them. Thank You all for your on going support and prayers!!!

Please pray.

ENT Seattle, here we come...

Raygen has another ear infection and her tonsils are still swollen. 

And she is teething.  She is chewing on everything, lol! 

She is kissing Peek-a-boo barn in this picture though, lol! 

This little app she just loves.  She gets the biggest smile as soon as she hears the music play. 

Good therapy.  She is using both her hands and 

starting to put weight on her legs. 

I love this pretty little face.  Such joy!

Raygen has had fluid in her ears since her first ear infection in June.  So we decided it's time to head north and see what Childrens think and talk about the possibility for tubes. 

I do not want tubes.  I don't want to put Raygen through a procedure with sedation and an iv unless we have to, but I think were at the that point.  I don't want her hearing to be affected and I do not want her to have to fight them all winter long.  We head to Childrens on October 25th.  Maybe if were lucky, we can have her tubes placed when she is already under sedation for her lung perfusion scan.  Then maybe we can do both with one iv. 

OOOH, how Raygen loves Elmo!

We did call Dr. Park, her heart doctor, about her high heart rate and he said that it's okay for her to be up in 180's if she is active or upset.  It can go as low as 70 in a deep sleep.  So with this information I feel better about her 120 heart rate that worried me.  Although I am still on edge. 

Elmo is so funny.....

Sitting up like such a big girl.

Playing with her favorite car toy.  Her g-tube, lol!

Also, I wanted to answer Bonnie's question about her O2.  (Bonnie, I love your blog and your girls are too cute for words.)  Raygen still has one more heart surgery to go and she will always have half a heart so Raygen will never be above 90 for her O2.  Before her second surgery Raygen's O2 was never higher then 75, now since the glen she is normally around 82 to 83.  I hope and pray with all my heart that after the fontan Raygen will be around 90.  Some kids are after the fontan and some kids are not.  We hope that her third surgery will be the summer of 2014.
As of right now Raygen is on 10 day of antibiotics for her ear infection and I'm watching her very closely.  We should hear back from Dr. Park next week of when he has scheduled her lung scan.  I'm just ready for my baby girl to feel better.  She still gives us her amazing smiles and laughs, but I can tell she doesn't feel that great yet.  I'm gonna go cuddle with her now.  

Update On Addison.  Please pray for her and her family.

Fever

Posted 1 day ago

Please Keep praying or start up prayer chains!!!! Addison had a rough few days, she started running a lowgrade fever and this morning they went in for her clinics and has a fever of 103.6! They are there at Childrens trying to figure out what is going on but we need lots of prayers that it is not something very serious and that the fever goes away!! Thank you all again for your support and prayers!!!