First I want to say a MILLION thank your to Rachael Earl for taking these WONDERFUL photos. You captured the day beautifully!
To everyone else who joined us. Thank you for being with us on such a special day. Making it to 1 year old is a HUGE accomplishment. Lily has been through so much over the last year she deserved a big party for a princess, which is what she looked like.
She is just showing how tough she truly is
I call her eyes Angel Eyes...they are so beautiful to look at
One of our family Photos...I have to say this is my favorite
This is Chris's favorite family photo.JPG)
.JPG)
Lily with Great Grandma Betty
Lily, momm, and Grandma Julie(mommies mom)
Lily and Bela...not only are they both Leapers...but they both have a special heart. Both warrior princesses
The birthday cake I made....not fond of it...but everyone else liked it!
Lily didn't like it
Lily saying hi to our neighbor Nicholas
She was quite the social butterfly that day
She was quite the social butterfly that day
There were a million other pics...ok well only 283 of them that I would love to show you but this has taken me over 3 hours to upload these photos...they are such good quality...the files are large...lol...Blogspot didn't like them.
I will post in the next day or so how Lily has been. she is sick once again and I think she is having some sleep apnea problems....so... I have my eye on her...and I am calling the doctors on Monday.
Love and Blessings
Jenna
I will post in the next day or so how Lily has been. she is sick once again and I think she is having some sleep apnea problems....so... I have my eye on her...and I am calling the doctors on Monday.
Love and Blessings
Jenna
2 comments:
The pictures are amazing!! Both family pictures are very sweet. I like the second one the best.
(when I have pics that won't upload fast in blogger, I will upload them to photobucket (free) or Flickr and then just paste the code in blogger.)
I go crazy waiting for blogger to upload... seriously... we don't have any extra time to wait on blogger.
We have gone through Phoenix Children's for Owen's first two surgeries. We have Dr. Pearl and adore him. He's actually a heart transplant surgeon, and I hope that someday he will get the transplant center up and running at the new PCH (that won't be ready for years). A heart only lasts 7-10 yr average and kiddos with previous CHD's are HIGH RISK for rejection and retransplant. They said.. just be prepared!!
We had the choice of most any transplant center. We went to LA (for distance) and we met with UCLA and CHLA. UCLA is organized, amazing and they did 95 transplants last year and 18 of those were pediatrics. They were organized and amazing. Downside... it's just outside of Beverly Hills and they don't have housing assistance (RMH)... so we have no idea how we'll do it yet.
CHLA was less than impressive. They were disorganized and their ICU was blah. Then they only did 5 transplants last year. The decision was simple.
Now, we have to choose another transplant center in another region as a second choice. That way Owen will be listed in two seperate regions (which opens up the donor pool).
I never expected antibodies to be an issue.. but of course.. it is. Lily may very well come across this issue in her future. Due to all their blood transfusion and any donor tissues used for patching, antibodies build up in their bodies. Then they can't accept a heart from someone that they have antibodies against. Owen's are in the 90's. So he can't accept a heart from 90 percent of donors... awesome.
So now we are doing chemo to try to lower his antibodies (kill them) and hopefully they wont' come back and reject his heart.
Such a rollercoaster ride. But like you... we do it!! We get through it, we enjoy every moment we have, and we are grateful that they are home and not living in ICU.
Lily impresses us with her eating, her ability to crawl and stand up... she's NOT letting her heart interfere!!
Andrea
Post a Comment