Alexa & Avery are officially Deer Park girls...

The girls and I have started moving out of our Pearland house.  Unfortunately, for our children Raul and I are getting a divorce.  We will continue to provide the most love and support for Alexa and Avery during this difficult time and transition in our lives.

The girls start at their new school, Deer Park Elem, tomorrow. They are super excited but I'm nervous.... I'm sad to leave Pearland because I love it out here but at least we'll be closer to family and friends who can help me.

Avery: "I want to meet God!"
Alexa: "No because we'd never see you again"
Avery: "I'll go to heaven in a space ship and then come back home".

Priceless

 It’s been a while since I’ve updated Avery’s website.  Life gets so busy.  Between working full time, Alexa’s activities, Avery’s weekly hospital visits, both girls in cheer 2 days a week and the list goes on a mile long like everyone else.  I find my evenings very tiring from our busy life.  Raul says I’m always tired and I am but my job is stressful and hard so I juggle being a good employee and boss and at the same time I’m the patient coordinator and advocate for Avery.  I schedule all of her appointments, I call the doctor when crisis’ come up, I call to check her blood results because my stomach can’t wait another minute for them to call me, I call in her prescriptions and then argue with the insurance when they refuse to pay for a medication, I go back and forth with the Transplant Coordinator who isn’t the easiest person to get in touch with.  It can get overwhelming for me because Avery’s my baby.  Honestly, it’s very hard to update her website as much because most of the time I cry and can’t finish.  It doesn’t get easier for me, in fact each day is harder.  I try to be strong and I don’t cry in front of the girls because I don’t want them to worry.  So when I’m all alone and writing on her website, it brings up all of the emotions I shield from my girls.  The few times the girls have seen me cry they were so sad and kept comforting me and I felt horrible about that.  I will stop now because I’ve been crying for the past 5 minutes, lol.
 
We appreciate the love and support that everyone shows for Avery and our little family.  She’s lucky to have many people who love her and pray for her daily.  It means a lot that you all care and want to be informed of her health.  Please continue to be patient with my less than frequent updates.
 
On with the show…
 
Our sweet little girl turned 5 on April 22^nd!  Since she was in the hospital in mid April we postponed her birthday party to May 1^st.  Her party turned out so cute and she had a great time.  I know I say this often, but Avery is so funny.  She is a clown and loves to have fun and make people laugh.  I just love that little girl.  She has a little “best friend” at day care and when Avery walks in they start singing… “The party don’t start til I walk in….  She is so so so smart… she definitely takes after her Daddy in the smart department.
 
A lot has happened since the last time I posted an update.  Here is a little recap (some copied from my Facebook page, lol).
 
May 8^th
“I’m spending Mothers Day Weekend in the hospital with Avery :( Being without Alexa makes me sad on top of worrying about Avery. She's been very sick running HIGH fevers in 104s and can't keep anything down.  Her creatinine level has risen indicating her kidney function is too low.  She'll be in the hospital on IV fluids and kidney function monitored closely.”
 
May 9^th
“Praying that Avery's blood work shows more improvement in the morning!! Creatinine: Saturday- 3.6, Sunday- 3.1..... We need this to keep going down.  No fever,  no vomit and her appetite is back! God is good. Keep praying, He's listening to us.”
 
May 11^th
“Just wanted to let everyone know that Avery is so much better! She got to go home yesterday and is back to normal for the most part. We appreciate your prayers and concern for our sweetie!”
 
May 20^th
“Avery’s doctor called and her white blood count is extremely low.  They want her to come back into the hospital for more testing.”
 
May 27^th
“My sweet Avery is having a tough time. Her body had a reaction to the meds. Her immune system is too low to be around anyone sick & she wears a mask in public. She's having too many other health issues to have any hope for her kidney. Her doctors said to start preparing for her to be back on dialysis and wait for another transplant :( “
 
May 27^th
“Avery graduated from preschool today.  She was so cute in her cap and gown.  She won a certificate for Most Compassionate.  She is such a clown and is always making her friends laugh.”
 
June 4^th
“Avery is doing a little better. Physically she looks fine but internally she has issues. I pray for God to give her doctors wisdom. She hasn't been eating and complains of headaches.  Dr thinks she has high blood pressure so we have to order a blood pressure machine and check blood pressure 3x daily. More blood work on Wednesday.”
 
Today-
“Avery went back to the hospital for blood work last week.  All I want to do is cry thinking about it.  Nothing is improving.  In fact, the doctor put her on 4 more new medicines and she’s on a restricted diet.  Her main doctor is out of the country for a couple more weeks.  They are waiting for her to come back to make the final decision on when to start dialysis.  There is no hope for her kidney.  She will have another surgery soon to insert the catheter.  She will have to be on dialysis for one year before she can have another transplant.”

We finally got to talk with Avery’s kidney specialist today.  There isn’t any new information; just confirmation that we prayed wouldn’t be true. 

 

Dr. Azam looked at her biopsy and she doesn’t think it looks that bad but the tests show it’s not an acute rejection, which means it’s a slow progression to kidney failure.  Avery will hopefully go home on Tuesday or Wednesday with a stronger immunosuppressive medicine to slow the rejection process down.  We will have to come back weekly to test for the cancer virus in her blood.  If there is any increase detected we will have to stop all immunosuppressive meds.  We don’t know if the new medicine will trigger the EBV virus or help with the kidney rejection.  The doctor said Avery is walking a tight rope and will be monitored closely.

 

I can tell it breaks Dr. Azam’s heart as it does ours that Avery will lose this kidney.  Dr. Azam has been with her since UTMB at the very beginning, so Avery is special to her.  She says her kidney function is 25%.  Right now, Avery’s creatinine level is a tiny bit down to 2.4 which is good but nothing to be excited about because now we are worried about the EBV level.  She is getting that test done tomorrow but it takes several days for the results to come in. 

 

When and if Avery’s kidney function drops below 20% she will be placed on the organ donation list for a kidney.  She will be required to be back on dialysis when her kidney function is 15%.  I do continue to pray for a miracle and beg for one! 

 

I know there is a lot of questions people may have and we welcome them!  There may be questions that we didn’t think to ask so questions are good, ask away.  Please feel free to leave a comment and I’ll answer the question as soon as possible!

 

FAQ:

Q: Will they remove Raul’s kidney when she loses function?

A: No, unless there is an infection issue or problems with the kidney.

 

Q: How long will Avery be on dialysis this time?  Hours?  Months?

A:  We don’t know until that time arises.  They will test different hours and then pull blood and keep repeating until they find the right time.  She will be on dialysis until the EBV virus is completely gone and a new donor is found.  Avery has a rare blood type so this will be a challenge.

 

Q: I want to donate my kidney to Avery!  What do I need to do to get tested?

A: How awesome!.  Avery has amazing family and friends who have come forward to offer to help her.  The main and first thing is to go to your doctor and get your blood drawn to find out your blood type.  Just to give you an idea, her doctor said the donor needs to be fit, healthy and in shape, good blood pressure, no protein in the urine, non smoker, non alcoholic and drug free.  Of course there are other medical tests and cat scans that happen but that comes later.  Again, the first thing to do is to find out your blood type and she said we’ll go from there.

 

Q:  How can I help?  Will Avery have a fundraiser?

A:  Prayers will help!  At this time, we don’t have any fundraisers planned.  We are very busy with Avery and trying to get her healthy so our free time is limited.

 

Q:  Can we add Avery and your family to my church’s prayer list?

A:  Absolutely!  The more prayers, the better.  Thank you!

 

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