Avery UPDATES

 

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

Poor Avery... 2010-03-24 08:14:21.0

Avery is doing well.  She hasn't been sick with a cough or running nose for 2 weeks!!!  Woo Hoo.  She loves day care and learning! 

I always have to have a cute story because Avery is so funny and cute...
On Monday, when I came home from work my I laid down in bed because I had a bad headache.  I asked Raul to let rest for an hour and to keep the girls out.  Yea right, that's not possible at our house.  Well 20 minutes into my resting I hear the door open and giggles.  When I looked up the door was closed.  As soon as I closed my eyes, I head "boooo... booooo" followed by giggles.  I looked and Avery was on the floor holding a piece of paper over the bed that she drew a ghost on and cut out.  It was the cutest thing ever.  Of course I couldn't rest because I kept thinking about it.  She was cracking up forever and saying how she scared me and that she knows I was scared.  I'll post the picture!  I kept the little ghost drawing to always remember how funny and what a little character she is.  LOVE her!

On a sad note, it was beautiful in Houston this past weekend.  On Friday, we were sitting on the back patio painting.  I had the back door open and Avery RAN inside to get something and tripped.  When she tripped she hit her face on the kitchen table.  It is very swollen and bruised.  She was in a lot of pain.  I feel so bad because it looks horrible :(  Poor baby!

Results 2010-03-11 11:48:51.0

Raul took Avery in for blood work yesterday to see if her creatinine level was better.  I called and called and emailed yesterday.... Jenny, Avery's transplant cordinator, never called me back or replied to my email.  Mama is on a mission... you can't leave me hanging like this.  I've been worried all week and praying that she doesn't have to get admitted into the hospital.  They always say, no news is good news.... well not in my book.

I finally called the sweet ladies in the Transplant Center who check us in.  They know us very well and love Miss Avery.  I explained that I haven't heard back from Jenny and if they could please get someone on the phone who could tell me her creatinine level.  She put me on hold and 1 minute later comes back on to say yesterday it was down to 1.8.  Last week it was 2.2.  It's still up by .4 so I don't know if they will want to admit her or have her come back in another week.  I'll keep you posted.  Keep on praying for Avery and for Mama not to go looney ;)

God Bless

Crazy Avery 2010-03-08 18:11:55.0
Tonight at dinner when we went around the table and said what our best part of the day was Avery said, "when I was sleeping" and for her worst part of the day she said, "when Daddy made me mad" awww! She looked at Raul & said as she was shaking her head with attitude, "wanna know why? (why) because you wouldn't give me more waffles" LOL. love being a mom!!
March Madness... 2010-03-05 12:23:44.0

** I have decided to close Avery's current website and switch over to a blog starting in April.  I will inform everyone when this transition takes place.  Her blog will help her sweet followers know when I have posted an update.  My goal is to add an update weekly or monthly.  Thank you for following her progress over the past almost 5 years! ** 

The only negative thing with switching to a blog is that her last 5 years of updates will not be on the blog. I get emails from other parents who have sat and read the many updates I’ve posted over the past several years. This has lifted their spirits and gives them hope because their child or loved one is going through pediatric kidney failure. I am torn about the website and blog situation because I feel that Avery’s story has helped families with their baby being on dialysis and having a kidney transplant.
 
Avery will be FIVE years old next month.  We couldn't be more excited about her upcoming milestone.  Avery is a vibrant and free spirited child.  She is our wild child and keeps us on our toes all of the time.  She's very smart and knows it, lol.  She just started preschool at a daycare in January and she is excited about going to the big school next year with her sister.  Avery can spell her own name, tell you her phone number (my cell phone #) and knows who the President of the United States is, lol.  She's a hoot. She loves ballet and tap. Avery want us to put her in cheer and gymnastics. She is very flexible and can do the front splits (we haven’t figured out where she got that flexibility from).  She is so beautiful and has killer blue eyes that make you melt.  She is super hyper and always up to no good.  Everyday she is “caught red handed”.  Example... yesterday, my Dad was over at our house while I was away on a business trip and found Avery rubbing / smearing GLUE all over our brand new refrigerator. Or she’ll sneak into the pantry and eat an ENTIRE box of Girl Scout cookies and love every minute of it. She’s been known to hide Alexa’s iPod from her if Alexa doesn’t let her listen to it or hide the remote to the TV. Raul and I spend more time laughing about all of the things she says and comes up with. We are blessed to have our sweet girls.
 
Avery continues to have monthly doctor visits and has her blood drawn at Memorial Hermann Hospital with Dr. Azam.  We were told today that she is very anemic and may require daily shots :( We were also told that her kidney function is only 50%.  The doctor just called Raul and inform us that Avery's creatinine level is 2.2 which is up from 1.4 last month, which means her kidney function has dropped.  Avery has to go back to the hospital for more testing on Monday.  If her kidney function has not improved by Monday, she will be admitted into the hospital.  Please pray for Avery! 
 
This is so frustrating for me.  I feel so bad that she has to go through this and will continue to go through this for the rest of her life.  All I can do is pray that she continues to be strong and God takes care of her.  People say that I'm strong for all we go through with Avery on a daily, weekly and monthly basis since she was born but it is hard.  I try really hard not to talk about it too much because it makes me sad and breaks my heart.
 
As many of you know, Avery has the EBV virus.  EBV virus infects many people and causes little to no damage.  However, the EBV virus turns into lymphoma cancer  in some people.  Some people meaning Avery who had a kidney transplant.  Most people can fight off the EBV virus naturally but Avery's immune system is compromised with anti rejection medication because of the transplant.   Once a transplant patient is infected with this EBV virus they will ALWAYS have this virus and require close monitoring.  Two years ago, the EBV virus was out of control and Avery was taken off 90% of her immune suppressant medicine so that her little body can fight off the EBV virus before it gave her lymphoma cancer. It was a double edge sword because either she can develop cancer or lose her Daddy’s kidney. The doctors opted to save our child from cancer and chemotheraphy. The treatment took over a year and was a constant roller coaster emotionally and physically. During this time, she had 2 acute kidney rejections in March 2009 and July 2009. Luckily, with the help of wonderful doctors, steroids, medicine and prayers we were able to save her kidney.
 
Today her EBV virus is not active and I feel that we can increase her medicine to restore the kidney function. I’m not a doctor so I will wait for her treatment plan. Again, we appreciate our family and friends who pray for Avery daily and follow her progress. Keep the prayers coming! God Bless you all.
Our growing pain... :) 2009-09-21 08:11:11.0

We had a great weekend!  We took the girls out to the mall to "bungee jump" and they love that!  We also took them to the carnival.  Avery had a blast!  She wanted to ride every ride and was not scared at all.  We would put the girls on  a ride and watch them from the side.  Avery was so funny, every time they the ride went past us Avery was making faces and cracking up at herself.  Raul and I had a great time watching our girls enjoy themselves.

Avery went to the doctor last week for blood work.  The results are not in yet but when they get in I will post another update!  Thanks for the continued love and prayers for our family.