Saturday, July 14, 2012

1 1/2 years old!

Ahhhhh it's been a while hasn't it?!?  Life kind of sneaks up on you every now and then :)

Violet has been doing absolutely wonderful and amazing us more and more every day. She continues to prove the Drs wrong time and time again.

Her speech is coming along very well. She can now say mama, dada, pup, ball, baby, book, kitty kitty, cat, nana, papa, go...and a couple other words that I'm forgetting at the moment. She doesn't say them all regularly, she usually gets stuck on a couple words at one time. Right now she is stuck on mama, dada and baby.

Her sensory issues are better in certain areas. She is still scared to death of laughter but she is doing much better around larger crowds. Her sensory issue with her hands and feet are SLOWLY getting better. It's a labor of love. The other day she put her feet down on the carpet and kept them there for over a minute. That is HUGE for her. This is a picture of her during sensory/physical therapy with her feet down, sitting up all by herself and reaching for a toy all at the same time...

Her nystagmus is almost nonexistent unless she is extremely tired or really upset. Her Patikia is getting better with time too. During her meltdowns not as many blood vessels burst as they used to. So all in all we are very happy with this. She still has bilateral cataracts and bad vision so we will see what the vision specialist has to say about it on our next appointment. He had wanted us to get glasses for Violet at a year old but I know my child...she will NOT keep anything on her face right now so there is no point in getting them just yet. We will wait until she is 2 or 2.5 before getting her glasses.

A couple months ago we traveled up to UAB to get clearance from her cardiologist for her to have surgery on her stoma.

 I knew her heart was doing well but I never could have guessed HOW well it was. The hole had almost completely closed on its own. The coarctation of her aorta was no longer able to be found and her LV to RA shunt was very very tiny. We got the news we never thought we would hear...there would be NO MORE OPEN HEART SURGERIES (and she was clear for her stoma surgery)! I was absolutely beside myself with joy. The first surgery tore me apart with grief...I couldn't imagine going through it all over again. For everything to have closed on it's own and healed on its own is an absolute miracle and we praise God for it every day.

While in Birmingham we made it in to a small vacation and went to the Desoto Caverns (we were not impressed).  Violet had more fun at the mall shopping lol.

Shortly after returning to Mobile we scheduled her stoma surgery. The problem with her stoma was that too much granulated tissue was forming around her Mic-Key (this is her Mic-Key)
Her Mic-key button is where her food goes through directly to her stomach. Anyway...the tissue was swelling up and around her Mic-key and getting infected all of the time and causing her a lot of pain. So we prepared for surgery where they would stretch her stoma to fit a larger Mic-key and then remove the excess skin. This is us the morning of the surgery. She was loving on the baby doll the volunteers made for her and gave her at the hospital (it is now her favorite baby doll).

You would think after surgeries like her open heart surgery and chest tube surgery and the original gtube surgery that this surgery would be a walk in the least I thought it would be. Boy I couldn't have been more wrong. I cried like a baby when they took her away. I cried till the minute they told me she was fine. Then I got to see her and I cried some more. I just hate seeing her so helpless and in pain. I didn't think my heart could break any more than it already has in the past, but seeing her screaming in pain after the killed me. I tear up now just thinking about it. But it true Violet fashion, she was fine in a couple of days. She was tender for about a week or so and then she was back to pulling on her extension tube like the rip cord for a parachute lol.

She had an MRI and an EEG  around the same time because of some severe regression that she was going through. They still dont really know what the problem is so we just take it one day at a time. For months she will go backwards. Not showing affection, severely banging her head, forgetting how to roll over, forgetting how to clap or even wave and say certain words. Then out of nowhere months later it all comes back to her all at once.

She had to relearn how to roll over and she still struggles with it every now and then but I think it is more because her stoma hurts when she rolls on to it. She has just begun trying to crawl/scooch herself over our laps when we are sitting on the couch so it shows that she is wanting to use her legs now...she just doesn't know how.

In February we had Violet's heart birthday. The one year celebration of her heart being fixed. A celebration of one more year God has granted us to spend with her. I think her heart birthday was more emotional for me than her actual birthday.


Random Pictures...

Talking to her Facebook friends

 Playing at Bellingrath Gardens

 Visiting Nana

 Playing on her Ipad

 She LOVES books!

Just a wee bit Irish :)

Violet at an arts and crafts show with the Azalea Trail Maids

 Violet playing a song for mommy. She prefers to use objects to hit the keys :)

 Violet and mommy at a birthday party

 Violet swinging for the first time

 Violet with her Nana

 Violet plays peek a boo by putting her hands behind her head...she thinks you can't see her :)

 Practicing for her future Facebook profile picture LOL

Smiling in her sleep

 Waving at the camera

 I call her my Nala because she has the heart of a Lion (her favorite movie is The Lion King)

 Already rolling her eyes at me :)

Having fun with mommy on the sofa


  1. Amber, she is doing so well won't be long now before she is crawling away from you. I love reading her story and keeping up to date with all the things she is doing. A very special little girl with an amazing Mum and Dad.

  2. love it! She has done so good! Way to go girl prove the doctors wrong! Elizabeth loves books too!our little book worms!

  3. Thanks for the updates! She's just beautiful and you and Scott are amazing parents. I do wish she had some cute clothes, though! LOL, Mommy has such very good taste!
    Fodorite Carol

  4. I love all the pictures! What a ham! She is doing great but never negate the fact that she has amazing parents!!!!! Joanne

  5. Such awesome progress! Thanks so much for sharing darling Violet's story! XXXOOO

  6. Amber,

    I have not read the blog for awhile because my laptop died and I forgot I had the bookmark on my phone. I am glad to hear that Violet is doing well. I got a mood lift just looking at those adorable pictures. Take care and stay cool!

    Xxxooo Mary, Seahag from Fodors

  7. Just came across your blog. What a precious, precious little one! Violet is adorable.

    My heart kiddo goes to UAB cardiology too!