Amazing to me

The day we got Kaitlyn’s diagnosis, my heart broke into a million pieces. I immediately realized that nothing in life mattered more than my family. It changed my entire perspective on what was important and what wasn’t. In our situation, you also quickly find out who is there for you and who isn’t. It is both heart warming and disappointing at the same time.  I’m embarrassed at the things that I once complained about that seem so trivial now. Sometimes it takes just one little girl, my daughter, to change everything.

Kaitlyn with her little brother, Cole 

Kaitlyn is amazing to me. She has taught me so many things already and I know that she will continue to teach me more about myself and about life. Not a day goes by that I don’t wish I could trade places with her and not have her experience this horrific disease. I don’t understand why things happen the way they do but someday maybe I’ll find out. As for now, we will continue to love her passionately with every bit of our hearts and souls.  

A beautiful voice

Since Kaitlyn decided to bring back "all done" the other day after we thought she lost the ability to say words, I thought it would be fitting to share the history of the words we caught on video so all of you could hear what she sounded like. Soo cute!

Ohhhhhhhhhh @ 2 Months Old




Mama @ 10 months old




Dada @ 15 months old (and some all done too)



All Done @ 15 months old

All Done!

When Kaitlyn was 8 months old, she said her first word- "Mama". A few months later, she stopped saying "Mama" and started saying "Dada". We knew that with Niemann-Pick Disease, she would eventually lose her ability to speak so although I was disappointed that she stopped saying Mama, we were happy that she was at least saying something! She eventually stopped saying "Dada". Around a year old, she started saying "All Done". After every meal or bottle I would always use sign language and also say "All Done". She got really good at saying "All Done". It's been months since we have heard her say anything resembling a word. Niemann-Pick has taken a toll on Kaitlyn in the past number of months, effecting her physically and mentally but today we got a treat!

This morning I was giving Kaitlyn a bath. Chip usually gives her a bath everyday but since he is out of town for work, it was my job! Apparently I was taking WAY too long washing her hair cause she yelled "All Done"! My Mom was in the other room with Cole and heard her too. Just those two small words from her mouth were AMAZING. It completely made my day and she never ceases to amaze me.

Photos we will cherish forever

Before Kaitlyn had her surgery, Chip reached out to a photographer named Faith Massey. Faith is an amazing woman who does portrait art but is also part of a group of photographers with the Now I Lay Me Down To Sleep Organization, who donate their services to families faced with the loss of a baby. Faith goes to the hospital and photographs the precious moments the families have with their baby, who they know will not leave the hospital alive. 

http://www.nowilaymedowntosleep.org

 

Although our situation is a little different we really wanted to have photos taken prior to Kaitlyn's G-Tube surgery. We weren't sure how the surgery would effect her spirit. Hearing our story, Faith offered her services at no cost so that we could capture these special moments with Kaitlyn. 

The first time I saw just a few of the pictures, I immediately started to cry. They are so beautiful and I feel so lucky that she was there for us when we needed it. We will forever cherish these photos. 

Faith also wrote an article about Kaitlyn on her blog:  http://imagesbyfaith.com/blog

Faith's website:  

http://www.imagesbyfaith.com

Cajun Canvas Fundraiser and Silent Auction Night!

The fundraiser for Kaitlyn was a huge success! The painting at Cajun Canvas was a blast as always and the silent auction was a huge hit. If you are in the Charlotte area and haven't been to Cajun Canvas, you definitely need to go. It is a very cool place! www.cajuncanvas.com

We had people bidding up until the clock struck 9:30pm that night thanks to Chip's laptop setup for online bidding onsite!

 It is amazing that in less than a month, this fundraiser was created. We couldn't have done it without the help of our wonderful friends and family. A HUGE THANK YOU to everyone who helped put this together! One of the best parts of the night was seeing all of our friends and family and feeling the support from them for Kaitlyn.

We have been touched by the generosity and sincere concern of those we know and also those we don't. Kaitlyn is such a special little girl and I am so thankful that she has touched so many hearts.

She slept for the first half of the event in a pack n play in the back room

Kaitlyn's little brother, Cole

        

Some of the items up for bid

I am so glad that both Kaitlyn and Cole were able to be at the event, despite being way past their bedtime.

 

Kaitlyn's cousin, Dane, is quite the Picasso!

Happier girl!

Wow, I can’t believe it’s almost been a month since Kaitlyn had her surgery! So much has been happening lately that time has really flown by. Kaitlyn continues to be recovering well. 

We took her back to have the surgeon take a look at her yesterday. We had noticed that you could hear a little bit of air coming out from her belly, where the tube meets the body and we were concerned. The surgeon said that it’s fairly common for that to happen. Upon exertion, like crying or using her belly muscles, some air and stomach contents can get pushed out around the tube. He did notice that there were a few hidden stitches that went unnoticed when they switched her from her original tube to the one she has now. He said that the stitches may have been causing some irritation as well so he removed those. 

You can see that the 3 small incisions and one in her belly button are healing up great! You will notice that Kaitlyn's belly is very big. The reason is because her liver and spleen are severely enlarged due to Niemann-Pick. Her belly will just keep getting larger over time as more sphyngomyelin is stored in her organs.

We have been closely monitoring how much she has been eating by mouth/bottle as it seems like she’s not as interested in bottles now. It takes a lot of time and encouragement just to get her to drink a fraction of what she used to eat. We don’t know if that’s because she gets tube fed at night and her appetite is less during the day, whether she has some discomfort from the tube, or whether she is losing some of her ability to suck on the bottle. We have a notebook where we keep track of everything she eats so she doesn’t end up losing weight. 

We have also been really busy with our fundraiser  to raise funds to help with Kaitlyn’s medical bills, and getting her the equipment she needs for daily living, like a medical stroller and supportive seating. We are really excited about the fundraiser. Many people donated items and services for the silent auction and it’s really become bigger than we ever imagined. Here is the link to the fundraiser.  http://niemannpicksilentauction.blogspot.com If you can’t make it to the event, you can still place bids online for the auction! We will be updating the site with bids the night of the auction too up until 9:30pm ET.  

We have been able to borrow a Tumble Form Seat for Kaitlyn through her Physical Therapist until we get our own. It is amazing to see how much move she moves her arms and legs when her body is supported. It is much better than just laying on the floor.

It doesn’t come with a tray so Chip custom built her a tray! I do have to say that his building skills are amazing! It is awesome and allows for her to play with her toys in an upright, supported position. Just this small change has allowed for a better quality of life for her, which is what we are focused on right now. 

We know that we can’t change the outcome of her disease, but we can change how she lives the life she has and we want her to be comfortable and happy for as long as possible.