Sunday, April 2, 2017

Forget Picasso, Watch Out for Violet!

I started painting with Violet as a way to let her be creative and have some fun indoors. She is quickly approaching her next open heart surgery and we have to limit contact with outsiders in a reasonable manner. So most of her activities are here at the house. Painting seemed like a great fit and boy did I hit the nail on the head with this one. She adores it. Every single day she asks to paint...which gets expensive lol.

The first few weeks was us basically finding out which mixtures and paints worked best for the types of paintings she was doing. We mix several things in with the paint and if you get the wrong consistency the painting will crack...and all that money just went down the drain 😉 We finally figured out the correct ratios for her paints and she hasn't slowed down since.

I guess the apple didn't fall far from the tree in the artistic department 💞 Violet has such a passion for the arts and I love that she can show her paintings off to everyone.

Here are a few of her paintings. She actually has a website set up to sell her paintings and all profit from the paintings will be going toward expenses for her open heart surgery. More paintings will be added very soon, we are just waiting for the varnish to dry before I can photograph them for her....and lord knows with her painting every day that there will be a ton more here soon, so keep checking back on her website to see what else she creates!

Here is her website: Ma Petite Fleur Violet

Saree Sold
Parisian Flare 
Purple Haze
Purple Cascade

Grand Canyon
Acidic Pool

Raspberry Melt

Pink Swirl (1)

Pink Swirl (2)

How Has Having A Child With Down Syndrome Changed My Life? The Good & The Bad?

Recently On Twitter I started sharing information about my life with Violet and encouraged my 
very few followers to feel free to ask me questions about our life to be able to open discussion to education everyone. One of the questions was.

"@trueBreview How has having a child with down syndrome changed your life? in both good and bad ways? <3"

And this really got me thinking...there are so many ways my life has changed and I listed out a few of the key points on twitter and was like wow, this needs a blog post to even begin to touch on some of the ways my life has changed in the good, the bad and the in between.

Let's start with the good. Because all too often, you hear of the bad. The negative that surrounds having a child with special needs, and yes, there is a lot of horrible things that you go through but there are also so many amazingly wonderful things.

*I think the biggest thing for me was just how much I have grown as a person. That's not me tooting my own horn...ok maybe it is and I haven't grown as much as I thought I have lol. But no, truly, I had to grow a backbone. Before I had my daughter I was a complete and utter push over. Everyone used me as a door mat and I allowed them to walk all over me. I was so intimidated by authority figures. Now, I have absolutely no qualms with going head to head with a team of Drs and surgeons. I will go in to a board meeting with an advocacy group and lay out exactly what I think is wrong and how it needs to be handled. If I don't agree with something, I say it. And it's all because of Violet. She unleashed my inner bi&ch. Excuse the language but it is what it is. The mama bear came out the day she was born and it is a force to be reckoned with. I embraced it and channeled it and use it when it's needed. Because there were many times in our journey where the only thing that got me through the hard times was my anger. Otherwise the tears would have taken over. I don't have time for tears. Anger I can handle. Anger I can channel in to results. I'm always respectful with Drs. Always polite. But it gives me courage to stand up and have a voice. Just because you have an inner bi&ch....doesn't mean you need to be an OUTTER bi&ch. But Violet gave me my voice. And for that I will be eternally grateful to her for. But it's a necessity. Because she cannot speak for herself. If I do not fight for her, no one else will. This is my job. I am her advocate.

*Another great thing that has changed in my life with Violet is the online support system that I gained when I found out I was pregnant and also when I found out she would have Down syndrome. I had joined an online WTE mommy group and then met several parents on Facebook that have children with Down syndrome. These families have been my rock through the years. They are my crown jewels. They are priceless. It's a virtual Encyclopedia of knowledge that I can tap in to at any given moment all over the world any time I have questions or doubts. If I'm going through something with Violet...chances are one of my friends have went through something quite similar. And even if they haven't they will commiserate with me. Because they know and understand how lonely and frustrating it can be when you just need someone to "listen". We are family. We have gone through pregnancies, births, loss of our children, loss of spouses, divorces, adoptions...we've literally been through it all together. And we stand strong together. Violet brought us together. I've met so many of them in real life and many of them have become some of my best friends in the world.

*I've learned to cherish even the tiniest milestone. Something as simple as when Violet took 2 CC of liquid by mouth the first time. Or when she allowed the tip of my pinky to be put on her lips because she had such a horrible oral aversion due to having tubes down her throat from being in the NICU for so long. When she was able to sit up for the first time at well over a year old. When she walked for the first time at over 2 1/2 years old. When she learned to suck from a straw for the first time at 3 1/2 years old. It takes her so much longer to learn to do things and she puts SO much work in to learning to do something so when she DOES finally do something, the victory is that much sweeter. I cry at every single milestone. Huge horrible ugly sobs. And I'm not even embarrassed about it. The pride I feel when she accomplishes something is so overwhelming, you would think she just won a gold medal in the Olympics. I'm on the phone calling all the family, I'm on Facebook blasting it to the world. Because it's HUGE. We spend years working on these tiny little milestones. And she finally reached it. I never expected to get excited over something so simple and so tiny. 

*So this is the "in between" I was talking about...I don't know that Violet having Down syndrome is what changed my life for the better. I can't say if I would be this way if she had been a "typical" child or if it's because she has Down syndrome. I tried for 8 years to have a child and I wanted a child more than anything in this world. She would have been loved no matter what. I wasn't supposed to be able to have children. We found out three days before a major surgery to remove tumors on my uterus that I was pregnant. She was a "WOW, you're pregnant" baby. I'm not going to sugar coat our lives. Because our lives are likely different than a lot of lives of other families with kids with Down syndrome. Many children with Ds are born with no medical issues. Many kids with Down syndrome are born with heart issues, have the surgery and have no further heart issues...or medical issues. That is not the case with Violet. So please keep in mind, that Violet, while her case is severe for medical issues, is not the norm for all children with Down syndrome. This is really not Good or's just something that needs to be stated before we get in to the less happier sections of life.


*I think that one of the absolute hardest things for me to honestly deal with, is watching the children from our birth club that were all born the same month and year as Violet grow up. They are all the same exact age as her. And I see them running and playing and talking and going through life with such ease....and my heart physically hurts. I can't count how many times I have seen videos on Facebook or read updates from friends and cried in front of my computer. And don't get me wrong, I am so unbelievably happy for each and every single one of my friends and I love them all dearly. But it's hard. It's hard to watch those children move further and further past your own child. Then for those same friends to have more babies....and now their two and three years olds are moving past your 6 year old. It's a constant reminder of the delays that I am still working on with Violet. Things we still haven't achieved. Things we are no where close to achieving. And yes, we will get there in her time. But that doesn't make it any easier.

*As a mother, you want to make things easier for your child. You want to give them the world and every opportunity in it. And then the reality sinks in that it just took you 3.5 years to teach her to suck from a straw and you're so're happy...but man you're tired. You're tired of having to work a thousand times harder on every simple little thing that most parents would never think to even have to teach their child. Things that would normally come natural to children.

*The medical issues that come along with Down syndrome. I was prepared for "Down syndrome"...however I was not prepared for the medical issues that came along with it. As I mentioned before, many kids with Ds are "healthy" other than having Ds...then there are kids like Violet. She is what they call "medically fragile".  Months in an out of the hospital, heart caths, open heart surgery, tonsil and adenoid surgery at a very young age because of obstruction, gtube surgery, revision of on the list is multiple open heart surgeries one of which we are preparing for. Then there are joint issues that leaves her in a wheelchair for months and us flying across the country trying to find medical care for her. She can't take antibiotics unless we are REALLY worried about something because she risks getting Cdiff which she has had multiple times. She's also highly prone to getting staph/MRSA. All she has to do is look at a hospital and she ends up with staph. So yeah, the medical issues are definitely a downfall of her having Down syndrome.

*Education is another downfall. There is such a lack of funding for the services our children need. Want to fight the school on it? You're going to have to hire a lawyer. Who has the money for that when you're paying out the rear end for medical bills. Oh yeah...the medical bills are also a downfall. It's expensive. It will break your bank account.

With all of this said though, Violet is my everything. She has opened so many people's eyes to what being part of a special needs community is like. We live our life pretty publicly for that reason. We don't sugar coat things for that reason.

I'm not one of those parents that uses catchy phrases like differently abled, more alike than different, human needs instead of special needs. No. My child is different, she's actually very different than most typical kids her age. My child HAS special needs that separates her from typical children's needs. She is disabled. We don't need special "terms" and "phrases" to sugar coat the situation. It is what it is. But we celebrate "different" in our house. We embrace it. Just because you are disabled doesn't mean you are less than. Just because you are different doesn't mean you aren't awesome. Just because you have special needs doesn't mean that you don't deserve to have those needs met with dignity and respect. See...I just went off on a tangent advocating lol. It just bugs me that these days "different" is seen as a bad thing by so many within our own community.

So let's just leave it at this, Violet has enriched many lives going through the good times and educating during the bad times. We are sure to have a lot of ups and downs in our lives but we will get through it together as a family, just as anyone else would.

Friday, August 5, 2016

Murder & Suicide Hidden in Children's Sing Alongs

I was scrolling through Facebook one day and a dear friend happened to post a video that had gone viral. A mother was absolutely distraught after finding a video on her daughter's Youtube Kids app that was a sing along video of the popular kid's song "Daddy Finger, Daddy Finger" that depicted Mickey Mouse and his family killing each other and committing suicide. The clip was hidden in the video. What seemed like a completely innocent children's sing along had turned in to something completely horrific. And I froze. My heart skipped out of my chest and tears welled in my eyes. I was now facing the same exact horror that the mother in the video was facing. I didn't even need to see the video she was describing, I could hear it. I new the voice on the video likely better than anyone's voice in my own family. My daughter, Violet watches that particular Youtube channel each and every single day and sings along with it. It's an easy song with simply drawn characters and is fun for her to follow along with. But how could these clips be in these videos? I had personally inspected at least 5 or 6 of these videos months ago to make sure the channel was safe for her to watch. That's where the channel got us...they inserted the clips a few months ago...after we had already started watching the channel. This is a VERY popular channel. Many of the videos have over 4,000,000 views so they often come up as suggested videos for children to watch. They pop up without your child even looking for them. They're there, over in the side bar just waiting for your child to click on them. And it's disgusting. They were labeled as "educational" and "sing alongs" until the owner of the channel got wind of my petition to have them banned and removed the labels and now just have them labeled as "lyrics". But they will still pop up because of the key words like "Mickey" and the character names that your children love so much.

While I was typing up this blog post they were removed off of the Youtube Kids app thanks to the petition. But are still on the Youtube app and suggested among all the other children's videos. The owner of the channel has been removing the videos that I post to the petition so I took videos OF the videos to prove that the violence was hidden in them. To prove to Youtube that it was there. So the proof will be posted here on this blog. Youtube, we want this Youtuber banned from Youtube Kids permanently, please don't just remove their videos for now. Please ban them for good. We want a BLOCK feature for channels on Youtube Kids. We deserve this as parents. Please, we beg of you. For the safety of our children, put a block feature on the app. Our kids have seen enough...this needs to end HERE.

So this is why we have the petition. We want to get this Youtube channel banned permanently from Youtube Kids. We also want Youtube to enable a BLOCK channel feature for Youtube Kids for instances like this. It's not enough to just flag a video. We need to be able to protect our kids. We shouldn't have to start petitions, contact senators, contact media etc. We should simply be able to "block" the channel so our children don't have to be subjected to the violence. There is enough hatred and darkness in the world, our kids don't need to have it fed to them in something as innocent as a sing along from their favorite Disney characters.

Below this photo you will find a link where you can watch clips from each of the videos from this Youtuber which is Superkidz Finger Family. The link is on my personal business website, due to the size of the files they wouldn't load here on my blog. I took video with my phone since the youtuber was deleting each of the videos when I was posting them to the petition to have them banned trying to cover their tracks. This is to show WHY we need to have a block feature on the Youtube Kids app. 

Click here to view the videos

Thursday, August 4, 2016

My daughter often watches the Youtube KIDS app on her tablet. She loves the sign language videos, nursery rhymes and sing alongs. It's helped amazingly with her enunciation and vocabulary and sign language skills. Yesterday I found out that one of the channels she watches ALL of the time has hidden in their sing along clips of the characters murdering their families and committing suicide. Yes, you heard me, on a children's video. On a children's app. I watched several videos from this channel on my own before allowing her to watch them. I thought they were safe. They only put them in to a few videos so they are well hidden and it just happened that the videos I had watched didn't have them in it. I'm horrified.

My sweet Violet watches this channel and sings to these videos each and every day. She has watched all of these videos. She has watched them murder their families and commit suicide while singing along to the songs. And now as a parent to a child with special needs...I'm not even sure how to even begin to explain to her that what she not OK. That it's a horrible thing that she saw. Did she even understand what she saw...I just don't know. I have no idea what is going on inside that head of hers and that is ripping me apart. She was targeted as a child. Fed these images. And I am angry.

These videos are specifically labeled as "educational" by the creator and hidden inside of seemingly innocent videos so they will be allowed on the Youtube Kids app. Unfortunately with the app you cannot block the channel. Reports to Youtube have gone unheard. I have started a petition on to try to get the channel banned from the app. PLEASE, share and sign the petition. Our children should never be allowed to be targeted like this.

Tuesday, April 12, 2016

There's so much to say...

I don't even know where to start. This year so far has been hell and we're just trying to stand on both feet at this point.

It all started back in March on my birthday (the 12th). Violet was standing in front of the TV watching cartoons when I heard a pop and she collapsed on the floor screaming like I have never heard this child scream before. Urgent care tried to tell us she had a virus that causes inflammation in the joints and sent her home. But you could clearly see there what something wrong with her knee. It looked deformed. So on Monday I called her pediatrician but they don't have xray capabilities so I called her ortho. The ortho she normally sees was between moving offices and out for the entire week. We finally got her in with a different orthopedic dr and they did xrays and discovered that Violet's kneecap is completely dislocated and on the side of her leg. They sent us home saying there wasn't anything they could do for us. The red arrow is pointing at the white oval. That's her kneecap. The red circle is where her kneecap is supposed to be. This is looking straight down at her leg.

I was a bit miffed for not getting any answers. No hope. No nothing. Just a pat on the back and sent us on our way saying for us to contact the Shriners. 

I contacted the Shriners hospital that we normally go to in Shreveport, LA but they said Violet would need to see a sports medicine Dr and that the Sports Med Dr wouldn't be in until April 18th...over a month away at that point. There was no way I could leave her in pain for that long. So the local Shriners and I started calling every single Shriners orthopedic hospital in the country trying to find SOMEONE that had a Sports Med Dr on staff sooner. We started with Greenville, then Houston, then Chicago, then Tampa,....the list kept going. So I was bouncing between calls at around 12 different hospitals trying to coordinate days that someone would be able to see her. Trying to email over the reports from her orthopedist and the copies of the xrays that I had. It was complete chaos. I would be on the phone from 7 in the morning until around 7 at night and not get a single moment off of the phone. I just switched from one call to the next.

We finally found a sports med dr at the Shriners hospital in Philadelphia that would be able to see her but they needed us to get a sedated MRI first since the Shriners hospital in Philly didn't have the capabilities to do a sedated MRI. If the surgeon in Philly agreed to proceed with surgery, she wanted a very clear look at the knee before hand so it just made sense for us to go ahead and get the MRI before flying all the way to Philly.

So I called the orthopedist that did Violet's xray and left 4 messages for them to call me back and that I needed them to order a STAT MRI with sedation so that we could fly out to Philly. It took days before I could finally get one of them on the phone. By this point I had already called around to different hospitals to see what the wait list is like for a sedated MRI and had been told by the imaging department here locally at the Childrens hospital that they were then booking in to the third week of was March at this time. There was once again no way I was going to make Violet wait that long. She couldn't walk. She couldn't even stand up.

So I started calling children's hospitals in different states trying to find ANY of them that could get us in sooner. I knew Children's in Birmingham, Alabama would be able to since I had spoke to them on the phone. So the orthopedic office finally calls back and I inform them that the surgeon needs a sedated MRI scheduled and could they please send the orders up to Birmingham, Alabama (5 hours away) instead of to the local hospital. Finally got the order through and everything scheduled. Violet and I drove up for the procedure and since she was already going to be under anesthesia I asked if they could do her echo on her heart at the same time since she was due for the test and they agreed.

They sent the results of the echo down to her local cardiologist in Mobile (back home) and we had our completed MRI to bring to the surgeon. We were scheduled with the hospital in Philly on the 7th of April and started making the arrangements for us to fly up to Philadelphia on the 6th.

So the 6th arrives. I've had the flights arranged, rental car, hotel and spoke with TSA to make our screening process as easy as possible. I had all but forgot about the echo results that had been sent to Violet's cardiologist because they honestly weren't even on my radar. We never worry about her echo anymore because for several years we have had nothing but good results and each time they have told us that she should never need another open heart surgery.

We had just made it through TSA screening and I stopped to buy a water in the small cafe before I had to board my flight. I was chatting with the woman behind the counter when my phone started ringing. I saw it was the cardiologist office and figured the nurse was calling to tell me that everything was fine and they would see me in a year...but that didn't happen.

As soon as I answered the phone I knew something was wrong. It wasn't the nurse on the phone but the cardiologist herself. She never calls. The only time a Dr ever calls us directly is with bad news and my heart sank into my stomach. The minor defect with Violet's heart had got worse and she needs another open heart surgery. I'm alone in the airport, having the rug pulled out from under me and I'm trying to keep it together in front of Violet. It didn't work. As her words started sinking in, all the emotions from the first open heart surgery came flooding back in and I crumbled. (to read about her first surgery click HERE)

The sweet lady from the cafe came from behind the counter and was my shoulder to cry on and my support during one of the most "alone" moments of my life. I wanted my husband there with me. I needed him to be strong so I could fall to pieces. But he was working and I was in an airport about to fly halfway across the country in hopes a surgeon could make it so my child could walk again. I had to suck it up and put a happy face on so I didn't stress Violet out and get us on the plane. As we were about to board I heard a voice calling my name. It was a very dear friend's dad. He was on the same flight as me. Talk about a blessing.  A friendly face to keep me grounded and not feel AS alone.

We got to Chicago for our connecting flight but missed it by 5 minutes. So we had to get put on standby for the later flight which we were able to catch with no issues. We arrived in Philly and got to our hotel without a hitch. The next day was our appointment with the sports med surgeon at Shriners.

First let me start off by saying that Shriners hospitals are top notch. The staff is always incredible and treat you like family. I love our Shriner's family and will always be thankful for what they do.

Upon arriving at the Shriners we were informed pretty quickly after they found out about Violet's cardiac issues that they would not be able to perform any surgery (if they were even able to do the surgery) until her heart was fixed.

A bit later we finally were able to see the Sports Med Dr and she informed me of the VERY severe risks of the surgery for Violet. It wasn't good. We would likely have more than a 50% chance that the surgery would fail and it could damage Violet's leg causing loss of mobility. That isn't a gamble that myself or my husband is willing to make. They might "possibly" be able to do the surgery once Violet is over 10 years old and her growing slows down quite a bit but we will have to revisit that option at a later date. So until then, we will be focusing on rehab therapy, physical therapy and we're trying to get her into hydrotherapy and possibly hippotherapy. We now have a loner wheelchair from the Shriners and 2 leg braces that will keep her leg fully extended so that she doesn't use the muscles that tighten around her kneecap. 

We will fly back up to Philadelphia for another leg brace that needed to be custom made. They made a cast of Violet's leg so they can custom fit it for her. We also have to fly back up to get her wheelchair that is being made to fit her with the adjustments that she will need. This will be a long term ordeal for us. She's only 5 now and the option for surgery won't even be available until she is over 10. It's a tough pill to swallow. We worked so hard to get her walking. She started walking shortly before her third birthday. Then just 2 years later she has the ability stripped away from her in the blink of an eye.

I'm honestly thankful that she doesn't understand anything about needing another heart surgery. Right now she just thinks we're going on fun trips where we also stop at hospitals during the trips. I wouldn't know how to explain to her that she needs surgery again. That she might need a follow up open heart surgery to the surgery she's about to have. Because she will likely be receiving an artificial valve...and since the valve doesn't grow with you, they will likely need to replace it in a few years.

After everything was done and we were back home from Philly, I did find out that her left atrium and left ventricle are both dilated. Not severe at this point but it could signify that she is either going back into heart failure...or possibly already there in the beginning stages. She has moderate to severe mitral valve insufficiency so it's pretty definite that the valve will need to be replaced. Two pediatric cardiologists have looked at her report and both have said she needs open heart surgery. We're just waiting to hear from her heart surgeon at this point to see what the game plan is going to be after we do a couple more tests. Then we will be heading back up to Birmingham, armed with all of her information to see the cardiologist (the Director of Cardiology) up at UAB which is in the same practice as her heart surgeon. Then they will make the call. We have an appointment on the 27th with the Director. It's an exhausting process, trying to keep everything organized. Which Drs scheduled which tests. Making appointments with several different Drs that don't overlap other Drs. But not only are we doing this for her heart...but we are having to schedule everything for her legs around everything with her heart. So our flights back and forth to Philly and her getting her wheelchair all depends on when her heart appointments are and if she will be cleared to fly for the appointment.

Now we are trying to sell my SUV so that we can get a more handicap friendly minivan. Her chair is extremely heavy so lifting it up and down out of the back of the SUV is proving to be quite the challenge. We had a rental minivan while we were in Philadelphia and it was so much easier to put all of her equipment in to the vehicle. Then we are building a ramp on the back of the house so she will be able to get her wheelchair in and out of the door easily. There's just so much stuff to do all at once and my brain actually hurts.

I know several have sent me private messages asking about a gofundme site so I will include the link at the bottom of this blog post for everyone to be able to share. And we would greatly appreciate you sharing if you are unable to donate. Like I mentioned on the gofundme page...we never planned on her needing another open heart surgery. We never planned on her needing to be confined to a wheelchair. We sure didn't plan on both happening within 24 hours of each other.

Violet's Medical Fund

Sunday, November 23, 2014

2014 in photos

Violet's birthday was a trip to the Dr to update her shots 

Violet's actual party was a cowgirl theme. The cake was made my my mom and I made the horses for the cake.

violet loves this hair piece

Violet's one and only day in Pre K before we pulled her
from the program

 The photograph was taken by me but edited by a dear friend, Christina Ramsey

 Violet took a sign language class but she enjoyed playing much 
more as she already knew all the signs lol

 She also loved shopping while at sign language class

And playing the piano

Further in the year Violet was diagnosed with C diff yet again. In this photoyou can see the busted blood vessels in her face from screaming so much.

 My beautiful little flower

She loves her mommy :)

 The Easter basket was almost as big as she was lol

 Hanging out with Uncle David

 Took some photos while visiting family in Kansas in May

 Violet supporting one of our home teams

Playing with her ipad

 Early May we were blessed to be sent to the Shriners Childrens Hospital in Louisiana for Violet to receive custom braces
for her legs.

Violet trying to destroy the blanket I had JUST finished making her not 10 seconds before

Violet playing with her new puppy Niko 

Violet playing with her best friend, her older cousin KK

 Violet with her cousins at Easter

Violet with her Papa at Easter

 Violet with her Nana at Easter

 Halloween we decided to make use of Violet loooooooong hair so
she was Rapunzel.

 Daddy's birthday dinner

She wanted a desk like mommy's

Baby girl was sick with RSV

 Mommy got her a desk of her own right next to my own desk so we can "work" together.

 Trying on glasses...she was not impressed LOL

At the Dr for C diff :/

My little goofball

Violet playing with Niko

 Loving on mommy

 First sip from a straw!!

Silly faces

 Sitting on mommy's wedding dress

Opening night of Mommy's art exhibit

 Giving her great grandmother love

 Girls trip to New Orleans