Friday, November 23, 2012

Guess who is STANDING!

So a few days ago Violet decided she was going to use the mirror to pull herself up to stand! 22 months old but she finally stood up all on her own! And mommy got it on video lol (please ignore the mess, we've been sick for two weeks now)

We've been battling a bug around our house for the past three weeks. First my husband got it, then I got it two weeks ago and then Violet got it.

Now since she got sick she has started having night terrors which absolutely breaks my heart. The first night it happened we thought it might be her medication. We had no clue what was going on. But she has since had them almost every single night :(

We are now FINALLY over the bug. The night terrors continue but hopefully they will start easing off now that she is feeling better.

Tuesday, October 23, 2012

Making HUGE strides!

Wow, so much has changed in such a short amount of time. I have a full blown mobile toddler on my heard me correctly. MOBILE! Violet has learned to scoot and mastered it in a day lol. She has also started saying a few small sentences like "I love dada", "hey there dada" and "it night night" when she is ready to take a nap. She has currently claimed mommy as her personal jungle gym (I have the bruises to prove it lol). Of course she is still a little diva and we are ok with that :) We are planning our first big family vacation down to Disney World for a week in around a month where we will be visiting with one of my long time girlfriends.

Here are a few videos....

This is Violet standing while leaning for the first time. 

Violet scooting for the very first time

 Violet showing her signing till the end :)

 Violet cracking up

 Violet shaking her bootie


Violet's first sentence...I love dada...toward the end...

Here are a few pictures I have taken of Violet over the last couple of months :)

She was NOT giving up her pumpkin!!!

Tuesday, August 14, 2012

People First Language

What is people first language you might ask? It's putting the person first and their disability second. Showing the person as an individual first and foremost and not defining them by their condition.

My daughter is not a Downs child. She is not a Down syndrome kid nor a Downs baby. She is a baby that happens to have a medical condition called Down syndrome. She has Down syndrome...Down syndrome does NOT have her.

You would not refer to a child with leukemia as a leukemia kid or a cancer kid...then why do it with Down syndrome? There are so many things that show who my child really is....she is funny, loving, mischievous, precocious, energetic, goofy, tough, a fighter, inspiring. All of which have nothing to do with her disability but simply who she is as a person. She is a child. She is my child. She has a third copy of her 21st chromosome but that does not define her as a human.

By calling a child by their condition first, you devalue them. You separate them from their peers. You shove them aside as "different" and it leaves the person to feel "less than".

So please, when referring to an individual with any disability, refer to them as a person before you characterize them as just a disability.


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

Wednesday, May 2, 2012


Regression is an evil word. A word that is stealing my child away from me. My beautiful baby girl no longer wants to be held. No longer gives love. No longer plays peek a boo. No longer hugs. No longer waves. No longer.....just keep the list going because this is what Autism has taken from us and keeps taking from us. Regression is the term the Dr.s use to describe what she is dealing with. We are being scheduled for an MRI to check for a brain tumor or brain damage just to be on the safe side...but this is common for Autism.

I miss my baby girl's arms wrapped around my neck. I miss her snuggles. I hate seeing her work so hard to learn something only to have it stolen away from her memory. I'm holding on the best I can but sometimes the threads holding me together seem so weak.

Of all the things I miss....I miss this the most.

Sunday, April 15, 2012

Sucker Punched

Once again I feel like I've been punched in the gut...

On Wednesday we met with our neurologist, (our fourth opinion) to have the words I was dreading said to me. Your daughter is on the spectrum, she has Autism. We saw the diagnosis coming for months and it was very evident that she has it....but it's so much worse to actually hear the words said to you in that official voice.

It's one of the main things I have always feared. I have seen the children that have been stolen away at to young of an age. Not able to show emotion. Trapped within themselves. And my heart breaks. My heart breaks wondering if Violet will ever hug me again. It's been months. I wonder if she will ever give me a kiss which she has never done. Will she tell me she loves me? Will she want to hold my hand when she is scared? Or will my heart continue to break if her condition closes her up away from us. These are my fears.

I'm in the beginning stages...anger. Lots and lots and lots of anger. I don't want to hear the niceties that everyone is throwing at me. I don't want to hear the "it's just a label", "everything will be ok", "God has a reason for everything"...because while people mean to be nice and give hope by saying these things it diminishes the emotions and very realness of the situation my family is facing. Tell me it is just a label when it is your child banging their head so hard you are afraid they will have a concussion. Tell me it is what God intended when your child looks through you with no affection. Don't tell me everything will be ok as I sit at night crying because my child has been put through more crap than any child should ever have to go through. Yes there are children much worse off....but this...this is MY child and damn it I am angry.

All I want right now is to crawl in to a hole and cry. But I can't do that. I have a child that needs me to be strong and to be her way out of the darkness. I dont know how I will achieve it but you can bet your ass I will find a way. God as my witness I will find a way to help her.

Saturday, March 3, 2012

One more year...

The 28th of February was one year since Violet's open heart surgery. It is amazing to see how far she has come and how wonderful she is doing! Please leave your well wishes and encouragement for her in the comments section. It will be great for her to look back on one day!

There once was a little girl that had so much love in her heart that it was spilling out. So the Drs had to go in and put a patch on her heart to hold all the love inside. 

Mommy and Daddy love you Violet

And look at her now...