Procedure on Thursday

Addi will be having a procedure done on Thursday to have a difibulator implanted. Because of our family history, the doctors feel like she should have this done to play it "safe" while we wait for her new heart. She has worn a halter monitor twice and it has not picked up any arithmias.

We won't know all of the particulars of the procedure until Wednesday. We do know that she could be in the hospital for up to a week. We'll be at Texas Children's.

We appreciate all of your prayers and ask that you keep them coming. The power of prayer is amazing. I'll be sure to update all of you after the procedure to let you know how she is doing.

Thanksgiving

***So, I just realized that I never "published" this post after I wrote it!  Here it is now written right after Thanksgiving...I'm losing my mind!!

Well, this Thanksgiving was a HUGE first for our family to get through.  This year when I sit back and think about all of the things I am thankful for, it truly amazes me how wonderful our family and friends are.

I am thankful for a loving God who loves no matter what.  A God who wraps his arms around us to give us the strength and comfort we need. 

I am thankful for a wonderful husband who continues to be my rock.  I'm so thankful that God brought us together to do life with. 

I am SO thankful for the four and a half years that God gave us with Cade.  Our little man brought us so much happiness and a lot of who I am is because of him.  I think about him everyday (all of the time) and think about how special he was and how much joy he brought me!  Caderader I love you right up to the moon and back!

I am SO thankful for our precious Addi.  Her personality is truly starting to shine and she makes me smile on a regular basis.  She enjoys life and loves to laugh and be silly.  She has taught me how to live in the moment.

I am thankful for my family and friends.  The past seven months have been the hardest of our lives and because of them each day is a little easier to get through.  All of you have been so supportive and comforting to both Darrell and myself.

I am thankful that we live in Houston and are so close to Texas Children's Hospital where some of the best pediatric cardiologists in the world work.  I am thankful that they love Addi and will do anything to fix her heart.  They make Darrell and I feel comfortable and make our visits easy.

Our family has a long road ahead of us, but we have a strong faith and we believe that God is going to take care of us!  Addi is a strong little girl and we look forward to her having a new strong heart!!

A New Year

Well, I have to say that I am SO glad 2012 is finally here.  I was definitely ready for 2011 to be over.  We had a wonderful Christmas with our families.  It was the last "first" we had to overcome and I have to say it was probably the most difficult.  God is so amazing!  Because of Him we have felt comforted and loved in this season of our life.

This year is going to be a big year for Addi and our family.  We are so glad that there is a "fix" for her condition and we pray every night for patience as we wait for a new heart for her.  We know that we have a long road ahead of us, but it is SO worth it!

She is growing up so fast and changing every day.  She is so funny and LOVES to sing and dance.  The two of us jam in the car and she starts to dance EVERY time she hears music.  I can't even explain the joy she has brought to our lives.  It's hard to believe that she is already 19 months old.  I love watching her play with her babies.  She's such a little mommy!

As the new year begins, Darrell and I can't thank our family and friends enough for the continued support and prayers.  The power of prayer is amazing!  It has made our journey from the last several months so much easier!!   As life happens, I'll keep everyone up-to-date.

Disney World

Back in January we planned a trip to Disney World during the Christmas break.  We wanted it to be a surprise for Cade, so we never told him about it.  After Cade passed away, we went back and forth whether or not we should still go.  Then with Addi being on the heart transplant list, again, we went back and forth on whether or not to go.  We ultimately decided that we should go.  Cade would have wanted us to and with Addi's procedure we don't have any idea when we will be able to travel again.  She did really well on the flight there and back.  I was really nervous about her ears bothering her.

On the plane headed to Disney!

Addi loved it, as long as she didn't have to get too close to the characters.  I am in EVERY single picture, except for the one of her crawling away from Mickey Mouse.  She would latch onto my hip and would not let me put her down.  Her favorite part was after the pictures were taken and she could say good bye!  She seemed to do a little better with the princesses.  After a few days she got warmed up to them and would actually sit with them by herself for a picture.

The fam with Mickey...love his outfit!

Addi was quite fond of Mary Poppins...we had to see her twice!

Me and Addi with Daisy...no way was she letting me let her down!

Yes, that is Addi trying to escape Mickey...so sad!

Addi and Cinderella

The fam with Goofy and Pluto...she HATED those dogs!!

We had a great time with MawMaw and PawPaw and Uncle Brandon and Aunt Brandi and Brody.  It was a bitter sweet trip, but we really enjoyed it.  On the 20th (8 months since we lost Cade), we all got Mickey Mouse balloons and sent them off to Heaven for Cade.  There was a sweet man who was a photographer for Disney who captured the moment for us.  I told him our story and he was wonderful!

Addi with her first Mickey ears!

Addi and Brody wearing their new shades down Main Street

Here we all are at the hotel.

Me, Darrell, Brandi, and Brandon

I think one of our favorite parts was getting to eat with the princesses in Cinderella's castle.  It was beautiful inside.  Dinner was wonderful and we got pictures with several of the princesses (those didn't turn out to great).  Addi was quite the princess herself!!

Here is our little princess dressed like Belle...Darrell gave her a new nickname "Addibelle"

Me and Addi with Snow White

We took so many pictures it is hard to choose which ones to put up on the blog.  Here are a few!

Me and my sweet girl!



My precious family in front of a Christmas tree in our hotel

Addi and Brody at the hotel...waiting to leave



It's Official

Last night, November 8th, we got the call from our transplant coordinator that Addi has officially been put on the heart transplant list.  We are so excited and ready!  We have no idea about the timeline.  We were told that they could call in two weeks or it could be a year...that's going to be the hardest part.  Please continue to keep us in your thoughts and prayers.

What's Next

I wanted to keep all of our family and friends updated with Addi.  After Cade passed away, our next step was take Addi to Texas Children's to get her heart checked.  At the beginning of June we took her to TCH and had an echo and ECG done.  The tests came back showing that she had hypertrophic cardiomyopathy (HCM) with restrictive physiology.  The HCM means that she has a little thickening of her heart and the restrictive physiology means that her heart never rests.  Because of the restrictive physiology we were told that she would need to have a heart transplant.  The problem would lead to high pressures in her lungs and then we would be in a situation where she would need a heart and lung transplant.

Darrell and I have talked to several doctors and we truly feel good about what lies ahead.  The truth of the matter is, we don't have another choice either.  The odds are REALLY good with the heart transplant.  One of the surgeons told us that 95 out of 100 children do "remarkably" well.  We have prayed a lot about this and we believe that Cade is saving his little sister's life. 

Where we are now--yesterday Addi's case went to the medical board for approval (we should be approved) and then it will go to our insurance.  Once the insurance clears it she will officially be put on the heart transplant list.  Then we wait for the call.

Addi is amazing!  You would never know that she needs a new heart.  She acts, plays, talks, and carries on like a "normal" 17 month old and we are so blessed for that. 

I am going to try really hard to keep this blog updated with what we're doing and especially when it is time for transplant.  That way all of y'all can be informed with what is going on and how she is doing.  I have actually been following two blogs of families whose little girls have just gone through a heart transplant.  I loved the idea of keeping people informed this way.  I find myself checking their blog every day awaiting for news.  Both of them have been doing really well.

I know so many of y'all have had us in your thoughts and prayers and I just ask that you continue to pray for Addi.  God is in control and I know that he has great things in store for us.  Thank you so much for your love and support.  Please feel free to send our blog address to anyone who you feel would like to know what's going on with us!

In October Addi had a heart cath done to check the pressures in her lungs to see where they were at.  At that time, her pressures were normal (YEAH!).  Here are a few pics of her at the hospital while they were monitoring her.

Taking a quick nap with Mr. G.  We don't go anywhere without him!!

Up from her nap eating a little snack.

Addi Turns One!!

May 27, 2010

May 28, 2011

So, I had some issues with uploading pictures so this is why this post is so late.  Sorry!  I'm going to try and get better about keeping it up to date (I know I've said that before).

We just celebrated Addi's first birthday.  Man, time flies.  It seems like yesterday we were bringing her home.  We had several friends and family over to celebrate.  I decided to go with a hot pink, black, and white cupcake theme.  Aunt Lala gave her the birthday outfit and there wasn't one piece missing.  It was perfect.  My friend, Andrea, and I made the cookies that I used for party favors.  I got really creative and made the birthday banner on her high chair.

Her birthday hat that she kept on!

Addi didn't want to have anything to do with the cake.  It was a little disappointing, but I guess the little princess didn't want to get her outfit dirty (haha).  She loved playing with all of her friends and really didn't care much about the presents either.  Oh well, I know that won't last long.  It was great having everyone over!

Please get this icing off my fingers!