Comments

Stu and Angie Milne said…
ah precious! ps i am SO sore right now.
May 19, 2009 at 10:26 PM
The Simmons Family said…
She looks so great Avery!!!

BTW.. I figured out all the AZLTC and DDD stuff. He won't qualify for AZLTC without DDD because the evaluation is totally different. Growl. Now he has nothing, but we are fighting it and he WILL get it... eventually. Thanks for everything! I used what you told me about Bela's eval and that's how I found out so much. Otherwise, it was just "decline". You're awesome.

Andrea ;)
May 20, 2009 at 1:06 PM
grandma debi said…
the sweetest angel child! I can't wait to see her and spend time with her and her big brother and their mommy! maezinha
May 20, 2009 at 1:20 PM
Sally Jensen Interiors said…
Seriously...she looked so big on Sunday! Like a kid...
May 20, 2009 at 3:01 PM
emcghee said…
That is a great picture of her, love the flower in her hair.
May 20, 2009 at 10:47 PM
Carol Fighr said…
Ave, she is so big and so cute!!!
May 21, 2009 at 6:30 AM
Anonymous said…
She looks oh so cute!!!
May 23, 2009 at 12:16 PM
Evie's Story said…
What a beautiful Miracle Baby!
May 27, 2009 at 7:39 PM
annelise said…
ah, que bonitinha...Ela parece muito feliz e com saude...
abracos...
June 3, 2009 at 8:45 PM
The McBrides said…
Your daughter is so stinkin cute! My name is shelley and I need your advice for my Ellery. She lost her suck and she will eat baby food and swallow some formula, but not near the volume she needs. Is it really worth it to get the G-Tube? I figure the NG bothers her, but I just have a hard time choosing what to do...please let me know your opinions on it since you have obvioulsy been through it!
June 16, 2009 at 9:33 AM
Post a Comment

Popular posts from this blog

Transplant 2- Honoring her donor, and her Aunt Ju

Image
Early in the morning on October 23rd, Tanner got a phone call that his sister, Julie, just a year and half older than him, had passed away. My sweet mother in law had to receive this devastating news from Bela's hospital room. Although Bela was unaware of all of it, at the same time they were helping my mother in law just outside her room in the hall, Bela's heart rate shot up to 180 and her rhythm went crazy for about 3 hours until they finally got it under control. We still don't really know why, most likely her heart telling us it was nearing its end. In the late hours of that very same day we got the call we had waited for for 11 months. A match had been found for Bela. Tanner had already decided he wanted to sleep there with Bela that night.  As hard as this hospital stay was becoming, there was a tangible peace being there with her in that room.  When he was woken up with the news that night, he stood in the hallway outside her room and wept as the flood of emotions o...
Read more

3 weeks out and doing great!

Image
Bela has been doing pretty darn good. I'm amazed by her.. as usual. She dosn't want to be held back any longer! She begs me to go to the park, got to the store, get back to anything normal. We're taking it slow, but she's been out to the park a couple times when it's been not too busy and she's so happy to be sitting in the sand with her shovel in hand. Sometimes it's like she didn't skip a beat. She has times still though where she seems tired, or grumpy, or like something bothers her but she just can't quite tell what it is. But overall, oh my gosh! 3 weeks post-op and she's a rockstar! I'm just so darn proud of her, for doing something so hard and for coming out of it so well. She tells everyone that she just got her heart fixed and sometimes even shows them. I'm never quite sure how to react when she pulls her shirt right up. It's like she's actually almost proud of it, as she should be, but I cannot understand how...
Read more

First transplant post

Image
This space used to be very healing for me. I wish I never would've stopped documenting here...I love knowing the first 5 or so years of Bela's life were well documented. But as I sit here with the familiar view of her hospital bed and sounds of beeping monitors, it feels almost necessary for me to write here again. Bela has had 12 incredible years of living life since my last post on here.  We were getting really comfortable with our cardiology appointments every 4-6 months, endocrinology every 3-4,  bloodwork every couple months, and occasional MRIs, procedures, or trips to the cath lab. Life has been full and so good. She's traveled a ton, ate a lot of good food, hung with friends, participated in theater, and found so much joy in her simple but rich life. We also had two more kids in that time.. more chaos and more love.  I don't know if anyone will still look for and find this blog looking for hope for HLHS, but I hope so.  We've now been inpatient listed for he...
Read more