Avery UPDATES

 

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

Texas Children's Hospital 2006-06-13 19:38:47.0

We visited Texas Children's Hospital (TCH) today because our insurance does not cover a Pediatric Transplant at UTMB and the insurance covers more at TCH since they are in network and have a contract with them.

 We met with one of their nephrologist, Dr. Goldstein.  He was very nice and answered my prepared list of 23 questions, lol.  He has no idea what he's getting himself into with me, jj, lol.  Dr. Goldstein did say that the weight requirement for Avery to have her transplant is 10 kilos (which is 22 pounds and she weighs 18.5 at home but on TCH scale it was 17.12) and he said most dialysis babies do not reach 22 pounds until the age of 2.  He did tell me that when I donate my kidney I will be in an operating room next door to Avery and I will stay in recovery at TCH, which is awesome!!

 We also met the social worker, Jorge, who very extremely helpful and very knowledgeable.  He definitely is the reason we decided to consult with TCH, he helped me over the phone and was very patient with my questions.  We also got to visit with two of the Dialysis Nurses who changed Avery's dressing on her catheter.  They were also nice and provided helpful information.  They said Avery would be the youngest they have right now.  They do things and procedure a lot different than UTMB so we are going to have to adjust everything to TCH way.  The hospital and dialysis unit is so nice and very clean. 

 Of course, this is a difficult decision that we have to make because we have an incredible bond with the Dialysis Nurses and Dr. Kalia at UTMB.  Everyone at UTMB is very attached to Avery and care for her as their own.  As I've said many times before they do not treat Avery like another patient you can tell she’s special to them.

 We of course have not made a decision as of yet.  We aren’t in a rush because our insurance is covering the dialysis at UTMB.  We want to make the best decision for Avery’s health and our finances.  There are pros and cons with both hospitals that we are trying to figure out.  We don’t want to make a “wrong” decision but whatever decision we make we are taking a chance. 

Dr. Kalia 2006-06-01 19:59:03.0

During our last visit Dr. Kalia who is Avery's nephrologist told us that he will retire and his last day is July 28th. I of course started to tear up, panic and asked a million questions.  We love Dr. Kalia and he has loved Avery and our family for the past year.  We have always felt such a special bond with him and his team.  We never felt like Avery was just another patient.  Avery is very special to every single one of them, it is very obvious.  They say she gets "boutique care".  Raul and I are very upset and disapointed that he is leaving our sweet Avery.  We are happy for him at the same time. 

We will miss Dr. Kalia so much, he will ALWAYS hold a special place in our hearts.  He hugged us before he walked out of the room and said how great of parents we are (how sweet) and if he ever writes a book (which he wants to) he is going to include us in it.  He is just so supportive, smart, respectful, honest.... the list can go on.  We have so much respect for him.

2006-06-01 19:39:24.0

Miss Avery is doing wonderful.  Her and Alexa keep us very busy and entertained.  I love taking them shopping with me.  Alexa is the biggest cheese ball who is so fake (she has a fake laugh now) and has an opinion on everything, she is very dramatic.  Alexa has so much love in her little heart, she amazes us everyday.  Raul is always laughing saying that her and I are so much alike. 

Avery is just calm, goes with the flow and always smiles at everyone she sees.  All I have to do is give Avery Kix cereal and she's good to go.  She never gives us problems.  She is very sweet and happy. 

Avery is always crawling around.  As soon as we take her out of her crib and put her down on the ground the first thing she does is crawl very fast into Alexa's room looking for her.  They have an amazing bond.  Avery gets so excited when she see's Alexa, she starts SCREAMING with joy.  She is getting tough, she doesn't let Alexa bully her around.  If Alexa takes a toy away that Avery's playing with she will start screaming at her.  I didn't think she had that in her but she's like her Daddy, very cool until someone makes him upset. 

Avery loves to waive bye bye, jump on demand (it's cute, we'll say Avery jump jump and she'll start laughing and bouncing up and down), eat her Kix cereal, loves her soft blankies, smiling, loves to be outside and more.

Avery weighs 17.10 pounds.  She will come down with a cold once or twice a month and then not eat or vomit everything she does eat.  It seems every time Avery gets back on track she gets sick again.  5 steps forward, 2 steps back.

Thanks for the continued prayers

UTMB 2006-05-28 19:50:05.0

Her doctors and nurses at UTMB are very pleased with Avery and her growth.  She is right on target for being 10 weeks premature.  Her blood work was great on her last visit.  One of the lab results indicated that her liver #s were high.  She was sick at the time of her visit so I had to take Avery this week for more blood work to make sure everything is back to normal.  Keep her in her prayers.

We are having insurance difficulties with UTMB.  They have denied full coverage of Avery's transplant.  The insurance agreed to pay only a portion because UTMB is out of network.  However, Texas Children's Hospital is in our insurance network so we are meeting with them in a couple of weeks.  We aren't sure what we will do until we meet their team and get a lot of questions answered.  They come highly recommended from Dr. Kalia and his dialysis nurses.  We've heard they have their children on dialysis until they are 3 years old.  Of course we want her transplant done ASAP when she reaches 20 pounds.  So we will do what is best for our family.  We want Avery to grow and live a normal life.

Avery's 1st Birthday !!!! 2006-04-27 20:00:19.0

Our miracle from Above turned ONE on the 22nd!!  We had a magical Tinkerbell Birthday Party for her!  So many of Avery's close friends and family came out and joined in the celebration.  She received so many warm sweet hugs and great company.

Avery is SLOWLY gaining weight.  She is weighing 17 pounds and is stuck.  She looks bigger, longer and chubby but the scaled is still sitting on 17 pounds.  So here's to ANOTHER more couple of months.  I'm sure the transplant will not be until July now.   We are so ready for this to hurry and come.  As you can imagine we are getting burnt out now.  It's been such a rollercoaster this past year.  I've done all of my testing and everything is good.  I do have a few more to go but that will come like the weeks leading up to the transplant.  So all we are waiting for is the insurance's denials to hopefully be overturned and Avery's weight gain, please keep us in your prayers.

I'm very thankful for Raul's love and support, he is my ROCK.  I couldn't do any of this without him or Lexi (she's my little helper and keeps me laughing).  I'm so blessed to have him! 

Ahhhh and how can I leave out my sweet Avery!  She is such an inspiration to everyone who knows her.  She is the best baby in the entire world.  She never gives us problems, she goes with the flow.   She goes to bed with a smile and wakes up with a smile.  I love that little girl more than anything!  We are blessed.  Always count your blessings, God bless you!!! 

Ps... I will add pictures as soon as I get my camera back.  It was taken by a dear friend on accident after the party.