Avery UPDATES

 

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

Today's Dr. Visit 2008-03-26 14:06:56.0

I took Avery to the doctor today.  Dr. Azam examined her and she didn't find any lumps (thank God).  She still has an ear infection in both of her ears but the antibiotics should be taken care of that soon.  I told her that there are some days that Avery has been moody, whinny, irritable and clingy.  She said that her body is use to the steriods so the days that she is not getting a dose (she's on a low, every other day dose) Avery's body can feel it.  Just like any person's body reacts when getting on steriods, the body reacts when taken off or reduced in steroids.  She said Avery can be feeling weak and just not feeling well.  So we are going to monitor her behavior closely on the days she does not take the steroids.  Dr. Azam may have to change her dose to every day in order for Avery to feel better.

Good news... even though she is off all immune suppressant medicine (just on steroids and the virus medicine), Avery's creatinine is 0.4 today!!!!!!!!!!!!!!!!!!!!!! The creatinine level in your blood determines your kidney function.  The lower the number, the better.  0.4 is her healthy normal level. It is so awesome that her body is not fighting off her Daddy's kidney.  What a blessing to have such a perfect match from Raul.  He is a proud Daddy and I'm a happy wife and mother!

Please keep praying for Avery!!!

Our little lady 2008-03-24 14:42:38.0

Well Avery was sick then got better but now she is sick again.  She is on antibiotics so she is getting better.  Last week she had 2 pink eyes and 2 ear infections plus more of other issues that come with being sick (cough, runny nose, fever, etc.).

She is still fighting the Cancerous Virus that will not go away.  It's up and down but has not ever fully gone away.  I just found out today that her last blood test show that the Virus went back up.  She is to almost no medicine for her kidney.  We are very worried and do not want her to lose her kidney and of course we don't want her to get cancer either.  We just don't know what to do anymore. 

On a positive note.... Avery is the light of our lives.  She is so funny and very charming.  She is known as the bully and likes to pick on the older kids.  With babies and her younger friends, she is so sweet and gentle.  But when her sister and cousins come around Avery thinks it's time to show them who's boss.  It's really funny because you wouldn't think it would come out of this cute little body. 

Her hair is getting long and almost to her waist.  She can't leave the house without a bow or she'll cry and cry until she gets one.... even if she doesn't have one to match she wants it in her hair anyway.  When she is asked how old she is, she'll say with pride, "I'm FIVE" and show her 5 little fingers.  I'll tell her that she is 2 and she says, "no mommy, I'm not 2, I'm 5".  Sometimes her name is Avery (she'll say A-ri or A-v) and other days its Colie (her middle name is Nicole).  She talks so much and loves to hang out with Alexa.  When Avery is not hitting her or throwing something at her they really have so much fun together and laugh and tickle one another. 

We are very blessed to have 2 beautiful and happy little girls!  Please say a prayer for Avery!  We really need a miracle to get this Virus to go away!!!!

Avery Update! 2008-02-07 14:33:25.0

Avery is sick right now (again).  She is coughing, sneezing, 2 ear infections, running nose, etc.  She is taking medicine and we hope she starts feeling better again very soon.  

She still has the virus that causes cancer.  The doctors have tried for the past 4 months to get rid of it but it's still there.  She has dropped a lot of her immune suppressant medicine.  Her body goes through ups and downs.  Some weeks the virus level is way up and then it will come down and shoot back up.  Take one step forward and two steps back.  

Every week for the past 4 months we have been at  Hermann Hospital for weekly check ups.  They check to see if any lumps have developed and to draw her blood to see where the virus level is at.  People ask if Avery is healthy..... so to say she's healthy, I'd say no not really.  This is a major health issue because Avery has a chance that she can get cancer and since they dropped a lot of her medicine there is now a possibility of her body rejecting her new kidney.   

This is very stressful.  Physically she looks ok and acts fine at times but it's the bigger picture that we are worried about.   

I don't think people realize the severity of all of this.  I have a good front and so does Raul but this is very very hard on us.  I thank God for Raul's strength because he tries so hard to be strong for me but this has been heartbreaking for him and has taken a toll.  As for me, I have my good days and I have more bad days.  It helps that I have my wonderful father who probably worries more than I do (if it's possible) and calls me every day to check on us.  I also have my 2nd mom, Dora, who also has been there for us from day one.   Between her and my Dad it is so nice to have their love and support.  Ahhhh and my sweet ALEXA!!!!  We are so proud of her.  She is such a strong and sweet little girl.  She has handled Avery being sick and what our family has gone through so well.  She prays for Avery EVERY night and it's such an awesome feeling to know how much love she has in her little heart.  

Please keep Avery and our family in your prayers.   

xoxo, Marissa

Avery's doing well 2007-12-11 09:53:19.0

Thanks for the continued prayers for our little angel.  Your prayers are working!!!  Avery is doing well.  I continue to take her to Hermann Hospital every week for blood work.  We sit up there for 6-8 hours, it's a long day but she loves going to see Dr. Azam and Ms. Jenny (her transplant cordinator). 

She is still off of most of her anti rejection medication until we get her EBV virus under control.  Since she has a chance of rejecting her new kidney without her full dose of medication, Dr. Azam is really keeping a close eye on her blood levels.  As much as we don't want Avery to lose kidney, they'd rather her lose her kidney then risk her life to cancer which is what this virus that she has causes.

Avery is soooooooooooooooooo hyper!!!!  She rarely sits in one spot  for more than 15 seconds.  Since I've been home with her, she is very attached to me and I LOVE it!!!  She loves coloring, singing and watching "BABY" Shrek and Strawberry Shortcake.  She thinks its the funniest thing to dump all of Alexa's toys out of the box after she has cleaned her room. 

Cute Story: If you know me, you know I do not like ANY kind of bugs, insects, rodants, etc.  I am extremely scared and honestly have a REAL fear.  Well my poor Alexa is the same way.  Yesterday I was in our room and I looked over at my clock and there was a LIZARD chilling on top.  So of course the chicken I am was freaking out because I didn't know what to do because Raul was working.  I didn't want to leave it there because then I wouldn't know where it would go, etc.  Well after I calmed down, I decided to call Raul but I knew he would laugh at me like he always does and wouldn't believe me so I took a picture with my camera phone.  The girls walked in the room and I was on top of my bed talking to Raul.  Alexa started screaming and asking for her Dadd to just come home and get it.  Avery got on the bed with me and was looking at the lizard.  Avery started saying.... "wait, wait, I want to touch the big DINOSAUR" lol.  It was the funniest thing.  Now, every time I see a lizard I will always remember my sweet brave little 2 year old thinking it was a DINOSAUR!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

I'll try to make this short 2007-11-04 22:02:06.0

A lot has happened in the past 2.5 months.

Avery was doing good for 10 months after her transplant. However, the past 2-3 months have been CRAZY.  Avery has been in the hospital 3 times in the past 2 months.  She had chronic diarrhea for about 2.5 months which was throwing her creatine levels off and her medicine made her blood toxic.  She had 2 urinary tract infections which we are sure it was from the diarrhea. 
 
Our latest issue is Avery's EVV virus level.  It got over the range of 70,000 which means the possibility of her getting cancer.  What a horrible feeling for us.  Her doctor pretty much cut back all of her anti rejection medicines in order for her body to fight this virus off (expect .3 of prograf which is nothing compared to what she was on and her steroid) BUT now we have a risk of her losing her kidney.  Avery is back going for weekly blood labs and doctor visits and is being watched over very carefully.
 
The ONLY good thing is that we transferred Avery's care over to Dr. Azam at Children's Memorial Hermann Hospital in the medical center in October.  We are very picky and things have not been the same at UTMB since Dr. Kalia and Dr. Azam left.  We really like Hermann, what a difference from UTMB.  We couldn't be any happier.  Of course we love and miss all of the nurses at UTMB but we are happy to be in a nice, CLEAN, CLEAN hospital especially with Dr. Azam.  She is so smart and has cared for Avery since the day she was transferred over to UTMB at 4 days old.  Avery also has a fantastic Transplant Coordinator who is very helpful.
 
Prayers :)  Prayers  :)  Prayers :)  Prayers :)
 
Avery needs a miracle to fight off this virus, prevent cancer and to save her kidney!
 
xoxo,
Marissa