Avery UPDATES

 

Most of Avery's updates and entries are written by her mother, Marissa.

Organ Donation March 14, 2006

GREAT NEWS!!!!!!!!!!!!!!!

We found out on Friday that Raul and I are both perfect matches to donate a kidney to Avery.  We have decided that I will be the one to donate a kidney.  I'm very happy and excited about giving Avery life and a promising future. 

This is such a blessing from above.  Thank you for all of your prayers and support.  We have a couple more months left.  We need to fatten Miss Avery up.  She has about 5 more pounds to go.  It seems like this last few pounds is taking a long time. 

This has been such an eye opening journey this past 11 months and we couldn not have done it without the love and support we receive.  I want to thank Rema for being my rock.  I admire the wonderful kind person you are.  You are such an awesome friend, I hope I'm half the friend to you that you are to me (does that make sense, lol).  Thank you for loving not only me but my girls and even my husband (although he lectures you like he's your dad).  You are very special to all of us and we hope you know that we'd do anything for you like you'd do for us.

She's crawling March 04, 2006
Avery started crawling today!  Yippy!
10 months old February 25, 2006

Our little angel is 10 months old now.  She had a check up with Dr. Kalia this week.  They said she looks great.  She's growing and gaining weight as she should.  She had her blood taken for test and thank God all of her numbers were perfect.

This is part of an email we received from Avery's head nurse:

Marissa and Raul,

Hey guys just wanted to first give you’ll a lot of praise for doing such a wonderful job with Avery.  She looks wonderful and healthy and is progressing according to our plan. I did not get to see her in January so she has changed a lot to me, she is beautiful and so active.  All of her labs were normal and she grew in height, weight & head circumference.   I will let you know if we decide to change anything.  Jeanene T.

Avery Nicole February 17, 2006

Avery is weighing in at 15.5 lbs. and she's doing great.  She is sitting up by herself, holding her own bottle and she's even getting up on all fours and rocking. 

Another favorite of mine is when Avery sneezes she'll look at you and smile real big.  She waits for you to say, "Bless You".  So CUTE!

Lexi and Avery have an amazing bond.  They love each other so much.  I love to be home with them and see them interact.  Avery watches every move her big sissy makes.  Lexi adores Avery, she is so sweet to her.  When she wakes up in the morning the first thing she wants to do is kiss Avery and tell her Good Morning.  She is very protective of Avery, if Avery grabs her catheter she'll gently take it from Avery and say, "no no Avery that will hurt you."

I have the most amazing little girls.  Every day Raul and I are amazed by them.  We are very blessed.

Insurance NOT APPROVED February 14, 2006

Well I once again called to find out a status on the "finance approval".  I am told that our insurance did not approve the transplant because the hospital is not in their transplant network.  So I'm very upset right now. 

The Transplant Coordinator (TC) says that this has happened in the past so they will call and explain that Avery has been under UTMBs care since she was born and hope they will approve it.  So I asked well what if they don't approve it?  Once again I'm not getting a straight answer, she says that we are hoping that it will get approved.  They are working on it now.  Ok well what if doesn't get approved?  She said they will keep submitting the application over and over and over.  No, that is not happening.  I'm not going to keep submitting an application over and over after it continually gets denied.  This is our baby and we NEED to at least know if one of us will be a perfect match for her.  This is killing me.  If we would have been informed that this could possibly take this long, then we could have turned in all the applications and paperwork a long time ago.  I'm the one that had to keep calling her and asking when we can do it and reminding them to send me the applications in the mail.   

I asked again if I can just get an idea how long this will take now that they have to submit paperwork informing the insurance that Avery's been under UTMBs care since birth.  She says she isn't sure.  I told her ok well if this has happened in the past then someone in her office knows how long this normally takes, so I asked her if she can ask around and find out.  She said, "oh, ok I guess I can do that if you want me to".  Oh my goodness.  This is very stressful.