World Rare Disease Day

Today is World Rare Disease Day. Kaitlyn is 1 of 5 in the United States that has Niemann-Pick Disease, Type A. I'd say that's pretty rare. February 29th, 2012 marks the 5th International Rare Disease Day. On this day hundreds of patient organizations from more than 50 countries worldwide are organizing awareness-raising activities converging around the slogan "Rare but strong together". Please join me in saying a prayer and sending warm thoughts to anyone who has been effected by a rare disease.

Here is a video promoting World Rare Disease Day:

For more information, visit the World Rare Disease website at:  http://www.rarediseaseday.org

Goodness

Hint of a smile in there :-)

Kaitlyn has been doing quite a bit better since she's been on Ceftin (antibiotic). She doesn't have as much respiratory distress and breathes much quieter, with less junk in there. There is still congestion in her lungs but that may never go away. She has been more stable though, which is really awesome!

A new bow!

Over the weekend I got to sneak away for a few minutes to our neighborhood's design center where there was a display for the Scentsy and Thirty-One online fundraiser for Kaitlyn's Fund. It was really great to meet Pamela and Michelle in person, who have really gone out of their way to help out. REMINDER: The fundraiser ends tomorrow (Wednesday, Feb. 29th) so make sure you put your online orders in if you are wanting to participate!

Click here to check out the Scentsy Online Fundraising Site.

Click here to check out the Thirty-One Online Fundraising Site.

Pamela and Michelle

Sweet girls brought a popular 7 week old guest!

So in the past year, I've probably had my hair cut like twice and that was before when Kaitlyn's disease hadn't progressed to the stage that it is now. I reached out to Joy Dietz of Comfort and Joy Salon. She had donated a few haircuts for a fundraiser in the past and I asked her if there was "anyway possible she could come out to the house and cut/color my hair, since I don't want to leave Kaitlyn". She graciously came out here and did my hair right next to where Kaitlyn was sleeping soundly! There are so many great people out there and the goodness in their hearts is evident in these simple, yet kind gestures.

Blonder- like I used to have it!

Our neighbors are still bringing us food a few days a week, which is so incredibly nice. It helps out so much, especially since I don't leave Kaitlyn's side much. We do have a new mini-fridge that one of our neighbors was going to sell and another neighbor bought it for us! Now we can store Kaitlyn's refrigerated medicines up in our room and also have some soda and snacks so I'm not completely isolated. Of course we had to "Kaitlyn-ify" the fridge with decals from one of her favorite movies, Tangled! :-) Thank you Leah and Michael!  

Our Tangled Mini-Fridge!

We are praying that the rest of the week goes well and that the Ceftin continues to help Kailtyn and that we can manage any pain that she may have. We still have her on pain patches, which gives her continuous pain meds. We have hardly had to use the morphine or other pain meds since she's been on the patch, so we feel that we are doing the right thing for her.

This morning.

Thank you again to everyone for your continued prayers, uplifting messages and even surprise sweet gifts for Kaitlyn left on our porch! You guys are so awesome!

Sleep, sleep and more sleep

Sleeping beauty

It is so hard to explain what I feel right now. Part of me is happy that Kaitlyn is still with us and a part of me is sad and misses her smiles and giggles and even eye contact. One of the hardest parts of being a parent is making decisions that effect your child's health and well being. Kaitlyn isn't in any pain (or at least any that we are aware of) due to the pain patch she wears and other medications she is on, but the trade off is that she sleeps almost all day and all night and can't even focus or see us for the short amount of time that she is awake. The vision part is most likely the disease itself but it really hurts my heart knowing that she probably can't see me, her dad or her little brother. I know it's best for her to not be in pain, but I would give anything just to have her old happy, smiley self back for just a minute... anything.

I am by her side in our master bedroom pretty much 24 hrs a day. It's quiet in here... too quiet. You would think that I would take advantage of the time and do things like organize or clean, which I did for the first week or so but now I'm at the point where I feel frozen. I am 110% on Kaitlyn's schedule for medications, etc. and don't even nap when she's sleeping because I feel like I need to be ready for anything that may happen and I also don't want to miss any of her meds or times when she is awake. She is really quiet now when she wakes up, you may not even notice it unless you were looking at her eyes.

When she's awake, we listen to music and I sing songs to her. I read books and show her the pages, even though I know she probably can't see them. I talk to her and put videos on that she is familiar with. Cole will come in and sit next to her and watch the videos. The other day he tried brushing her hair, it was too cute!

Watching a video together

Meanwhile, Cole is growing and learning so fast that I sometimes feel like an outsider looking in and am missing parts of his life. I know I am doing what is best for our family, but it doesn't always feel good when I am told the new words he is saying or what his latest antic is. Cole plays downstairs most of the day and comes up to see Kaitlyn and me when Kaitlyn is awake and even when she's asleep but it's not for long. I miss Cole too.

So sweet!

I pray that while Kaitlyn is asleep she is dreaming of heaven or of anything that makes her happy. I hope that in her dreams she isn't confined by her disease and is able to smile and laugh and play with toys like she used to. 

Thank you to everyone for your prayers for Kaitlyn and our family. Reading your messages and comments really helps to lift us up and know that Kaitlyn is making a difference.

She recently finished her antibiotic, azithromycin, for her lung congestion with high fever and then a few days later her lungs sounded "bubbly" again. She is now on Ceftin, an antibiotic that was recommended to us by another NPA family who had success with it in the past. Hopefully it will help kick any bacteria out of her system, although the congestion could simply be disease progression of fluid in her lungs.

Every day we have to make so many decisions. Through our entire journey, I think that right now has been the most difficult. Knowing that so much of her is gone but she is still here. Wanting to be happy and enjoy every moment with her but grieving the rapid loss of her abilities and awareness.  

I think about what she must be feeling inside and I can't even begin to describe the pain my heart feels for her. I feel selfish for feeling sad when it must be miniscule compared to what she is going through.

May God give us the strength to make the difficult decisions and to focus on the fact that Kaitlyn is still with us and is still making a difference in both our hearts and others'. 

Books and Bows

Kaitlyn has been doing fairly well this week. Her pain seems to be managed well, which is really great! That is the last thing we want for her. She did spike a fever again and was crying when she would urinate, so she was put on Trimet, an antibiotic in case of an urinary tract infection, which she has had a few in the past. At this point, we know that if she is crying while on the pain patch, she must be hurting! So we started the antibiotic and she seems more comfortable and has been sleeping most of the day and night.

When she is awake, we've been listening to Disney's Princess Songs CD, which she seems to LOVE. She even falls asleep to them. We also read books, especially the ones that rhyme, like Dr. Seuss. Great Day for Up! is my personal favorite. :-)

So speaking of books. I decided awhile ago that I am going to write a book about Niemann-Pick Disease, Type A. There is so little information out there, whether it be from medical professionals or the internet, on what to truly expect and what day-to-day life actually looks like with a child with NPA, that it is really something that needs to be done.

I have asked Dr. Melissa Wasserstein, an expert on NPD, of Mount Sinai Medical School if she would be willing to help and she said she would help out in any way possible. I envision the book to be half medical knowledge/fact (that is where Dr. Wasserstein comes in as the expert) and the other half about what families have experienced and the advice they have to give to those who may have a child who was recently diagnosed.

I think so many people could benefit from a book like this, not only the family but medical professionals, genetic counselors, friends and family who want to understand more about the disease and what the family is going through. I don't see this as some small book or small undertaking. It will require a lot of research, time and working together with other families who have or have had a child with NPA who are willing to share their stories with me.

Right now, Kaitlyn is my main priority and I hardly leave her side, but I will make sure this happens one day and that we can help those who feel lost when their child gets diagnosed with NPA, like we were. We had to find out for ourselves, through our own research and talking to other families, and pushing for answers, etc. Not everyone has that in them or even knows where to start. If there was a book that could help them, I am going to write it. If it's meant to be, it's up to me.... and God. :-)

A Ray of Sunshine

Must be dreaming of something awesome!

Kaitlyn is doing much better today and we are so grateful! She is breathing and sleeping better. We also got an unexpected treat the other day when Dr. David Hufford Jr. MD, Kaitlyn's Pulmonologist at Levine Children's Hospital in Charlotte, NC drove out to Indian Trail in rush hour traffic to come check on Kaitlyn. It took him at least an hour to get here, if not more! This wasn't even our idea, it was his. What an amazing guy!

It was great getting reassurance from him that her lungs were sounding better and that in the course of 2 days on the antibiotics, the difference in her breathing is so significantly better. She still has some fluid in her lungs but not as bad as it was.

Daddy kisses!

Wednesday, Cole went to the doctor and we found out that he has strep throat! That is probably what Kaitlyn had and it developed into a respiratory infection. Having put her on antibiotics as a precaution on Friday, she hasn't been feverish and is in much better shape.

This again, just goes to show how fragile children with NPD are when it comes to common illnesses. Something as simple as strep throat (although it was never confirmed that Kaitlyn had it) can turn into a life-threatening situation. The bacteria from a strep infection can and probably did get into Kaitlyn's lungs and cause her to struggle to breathe.

We are so thankful for everyone who is thinking and praying for Kaitlyn. You have all made such a difference in our lives. Thank you!

My cousin Dana's, hands- so pretty!

 The whole point of this life

is the healing of the heart's eye through which God is seen. 

~ St. Augustine

Peace, Love and Monkeys

I don't know why, but lately I have been at a loss for words. Maybe because so much has happened since Friday or maybe I'm just exhausted! Either way, I apologize if you have been checking for an update and there hasn't been one. There are so many of you that are praying for Kaitlyn and I want you to know that we appreciate every one of those prayers!

Sunday was a rough day

Kaitlyn had a rough weekend with her lungs sounding junky and her body struggling to breathe. At one point we were doing breathing treatments every 4 hours and they weren't making anything better. It actually seemed to make it worse so we stopped them. We also decreased her fluid intake in case her lungs are getting too much water/formula that her body may not be processing well. We took her off the humidified air (there is a humidifier bottle attached to the top of the oxygen machine) this may help to dry her lungs a bit, so now she is getting straight oxygen. Hospice also started her on an antibiotic in case of infection since she has had on and off fevers and the congestion hadn't gotten any better.

Yes- I made sure we had coordinating outfits!

And then there have been times where she is fast asleep and her breathing sounds completely normal! It's such a mix of emotions when things are up and then they are down and then back up again. I guess that is why I've had such a hard time in writing a new post. I don't know whether things are good or not? Overall they are better than good, they are GREAT considering that Kaitlyn is still here with us and still making an impact! 

I don't know what to expect anymore for each day is truly unpredictable in how she is going to be doing.

Feeling a bit better today (Tuesday)

We have received so many thoughtful cards, emails, donations, meals, gifts and artwork in the mail that it really gives us such hope that although we know that she will pass away, she continues to touch others' hearts.

Here is a video of Kaitlyn's distressed breathing over the weekend.

 It's funny, we have received a few packages of drawings from schools in NC, TN and VA. The teachers are telling their students about Kaitlyn and showing a few pictures of her from the blog. In one of the sets of drawings, the teacher showed the class a the picture of Kaitlyn and her Big Monkey (now named Paulie- a gift from our friend Paul and Karen). There were A LOT of monkeys in the drawings for Kaitlyn but one that made me smile and laugh was a drawing that said "Peace, Love and Monkeys". Ha ha ha... I couldn't help but chuckle. Kids really are amazing. The thoughtfulness in their artwork and what they write to Kaitlyn is so sweet and so honest. It has really meant so much to us just knowing that there are so many, even children, who are taking time to think about someone else who is in need of prayers and lifting them up and drawing pictures of monkeys for them! I'm hoping that I will be able to make a link on the blog of all the artwork that we have received. You would be amazed at what some of these children write.

More snuggle time with Paulie

I think I'm done now.... I don't know what else to say. There is so much else going on but it would be a really really long post so I think I'll wait until later for more.

I know that we have asked for prayers for Kaitlyn but please keep the Robbins family in your thoughts and prayers as well. Riley Robbins, who also has NPA had a cousin that just passed away at 3 months old. The cause of death is still uncertain. The cousin passed away on 2/12/12, the same day that Riley's older sister, Faith (who also had NPA) passed away. This family really needs our prayers. I can't imagine what they are going through right now. This is their blog if you want to learn more about the Robbins family: Click here  

http://faithandriley.blogspot.com

Happy Valentine's Day!

Kaitlyn wants to wish everyone a Happy Valentine's Day!

Two new Valentine snuggle buddies from Gigi

We thought we would share our Valentine's Day card to Kaitlyn with all of you as it seems to capture exactly how we feel. So here it is...

Our Beautiful Daughter

Where other people would fail,

you rise to the occasion, 

and where other people would see a problem, you see a possibility.

You understand hard times happen

but you don't stand back, you step in.

You help, soothe, and inspire - 

and probably don't even realize how amazing you are. 

And we wanted to make sure you knew.

Happy Valentine's Day sweet girl!

Cole wishes everyone a Happy Valentine's Day too! 

A Mom's Musings

Our neighborhood held a second candlelight vigil outside our home last night for Kaitlyn. One of our neighbor's friend has a blog and posted the following after the vigil last night. Her blog is http://michellespahr.blogspot.com

This is what she wrote:

Thursday, February 9, 2012

The Light No Darkness Can Overcome

 

 There is a little girl named Kaitlyn.

She lives only a few miles from us.

She is beautiful.

She has captured the heart of so many.

She is sick, very sick.

You can read all about her story if you click the link under her picture.

Kaitlyn's Korner

 Tonight her neighborhood had 

a second candle vigil for her.

I attended the first one with a friend 

who lives down the street 

from Kaitlyn and her family.

It was silent, prayerful, tearful.

This time, I took my kids with me 

since Brian was out of town.

Earlier today I showed Zachary 

Kaitlyn's website and picture.

I told him about her and asked if 

he would like to go to the vigil.

He said,"Yes!"

Then he asked, 

"Will the candles make her feel better?

Can I sing; 'Jesus please help Kaitlyn?'"

I held him tight and said, 

"Yes, Zachary, all those things 

would be wonderful and will help

Kaitlyn feel better."

So on our way to the vigil, 

I talked with Zachary about what it would be like.

I talked with him about standing quietly, 

saying prayers and sending Kaitlyn loving thoughts.

And that is what happened, at first.

Then there was the cat.

Our friend's cat, actually.

All the kids wanted to pet him and chase him.

They started talking and playing with the cat.

Then Kaitlyn's dad came out 

with her little brother, Cole.

Cole loved seeing the other kids,

and the kids loved Cole. 

Then the laughter started,

and the running,

and the chasing of the cat.

At first, I kept trying to get Zachary 

to stop and settle.

And then I heard the whisper in my ear.

It told me to let them be,

to let them laugh and play and smile.

It was the most amazing vigil I have ever been to.

Amidst the sadness and heartbreak,

I heard Jesus whispering,

"Don't forget that I am here.

I am holding Kaitlyn in my hands.

I will not let her go.

Allow yourselves to grieve and be sad,

but remember that I am the Light of the world,

The light that no darkness can overcome.

So don't forget to smile and laugh and feel joy.

For I make all things new.

And Kaitlyn will be made new,

she will laugh and play and smile and chase cats.

Find hope, find peace and find joy in me,

for I am here."

I heard it so loud and clear.

The kids were living it right in front of us.

Joy.

"Rejoice in the Lord always. I will say it again; Rejoice! 

Let your gentleness be evident to all.  

The Lord is near.

do not be anxious about anything,

but in every situation,

by prayer and petition, 

with thanksgiving,

present your requests to God.

And the peace of God,

which transcends all understanding,

will guard your hearts and minds in Christ Jesus."

-Philippians 4:1-7

And I can't stop thinking about it.

The vigil was not what I thought it would be tonight,

Instead, it was exactly how it was supposed to be.

Kaitlyn's Candle in her window

 Dear Kaitlyn, Deanna, Chip and Cole,

may you know that Jesus is with you,

holding you, grieving with you 
and promising you new life.

You are so loved.

A Sleepy Great Day

Before her bath and her nap

Sweet Kaitlyn Kay was Sleeping Beauty ALL day Thursday. Her fever broke, or at least it went down from 104 and she slept peacefully all day. Her breathing didn't even seem as labored. It was everything I could ask for her at that moment- peaceful rest and free from pain. It is amazing how different one day can be from the next. I credit God and all of you and your prayers. Thank you! Today is a new day, hopefully it will be as peaceful as yesterday but we are prepared for whatever the day may bring. Thank you to everyone who came out last night for the second candle light vigil for Kaitlyn. Chip told me that the kids had a lot of fun and a cat even came to the vigil too! More about that later.

For those of you who may be interested, there is a fundraiser to help Kaitlyn's Fund going on now through the end of February.

It is an ONLINE fundraiser with Scentsy and Thirty-One 

so ANYONE can participate!

Click here to browse Scentsy and place an order! 

February special: 10% off entire catalog except licensed warmers

 

Click here to browse Thirty-One and place an order!

February special: Spend $31 and get your next item 31% off

Just a friendly reminder: Easter and Mother's Day are coming up! These are awesome products, I have a Scentsy and love it and have ordered from Thirty-One before for gifts. Their products are really great quality. I promise I'm not just saying this cause it's Kaitlyn's Fundraiser. Please check it out and share with others!   

Click here for the page dedicated to the fundraiser on the blog that has more information.

Extra Doses of Prayers and Meds Needed

Over the course of the day, Kaitlyn's pain has intensified and gotten to a point where we are doing everything and anything we can to help make her feel better.

Late afternoon we noticed that her hands and feet were really cold and her body was really warm. A sign that her heart isn't circulating throughout the entire body like it should. Her heart rate has been on the rise and was over 150 a few times earlier this evening.



We checked her temperature and it was 104 degrees! A cool bath and more pain medicine and she is resting somewhat comfortably now. I say "somewhat" because she occasionally cries out in pain.



We are not asking for a miracle, we know that this disease will take her life, we just don't want her to be in any pain. Please keep her in your thoughts and prayers. She needs them!

Breathtaking

Kaitlyn is still having ups and downs with her breathing. When she is sleeping, she seems to breathe fairly easily. But when she is awake it is very labored breathing and sounds pretty bad.

This morning while she was napping, she stopped breathing twice. The alarm on her pulse/ox went off and she started breathing again within a few seconds.

It is scary to hear your child's labored breathing and then it just stop... silence. She didn't wake up from any of the episodes, which is good. I don't want her to be in any pain or awareness of the fact that she had stopped breathing.

Right now she is still napping and I'm by her side listening to her breathe.

On a lighter note, we had a wonderful photo session with Faith the other day. She volunteers with Now I Lay Me Down To Sleep, an organization that takes photos of stillborn babies or babies/children who aren't going to leave the hospital alive. They take beautiful photos for the parents to treasure. She is simply amazing and has donated her time and talents to take photos of Kaitlyn and our family throughout our journey. Click here for more information on Images By Faith.

Here are some of the photos:

Faith also entered Kaitlyn and Cole into the Now I Lay Me Down To Sleep Cutest Kid 2012 contest. It is their primary fundraising event for the organization. We aren't sure what the winner gets, we really aren't in it for money or anything, but the photographer ALSO gets a big winning package. Please consider voting for Kaitlyn and/or Cole so that if one of them wins, we can "pay" Faith back for all the good that she has done for us. The photos that she has taken have been breathtaking and we will treasure them forever.

The contest is open to any of the NILMDTS photographers but the kids don't have to be sick to participate. As far as I know, Kaitlyn is the only one that will pass away probably before the contest is over. I just feel it would be so fitting that she win, especially with what this organization does. She will be a NILMDTS child.

Each vote is $1 and you can vote as many times as you want and all at the same time too. So if you wanted to give $3, you could do it in one donation, just click on the + or - signs to increase or decrease the amount you want to donate/vote. Here is the link for the contest. Please consider voting (same as donating) to this organization. It is unbelievable what these photographers do. I couldn't imagine going to a hospital and taking photos for a family with their stillborn child. They must have so much courage, strength and love in their hearts to do this on a regular basis. Please help this organization AND help Kaitlyn and/or Cole win. ;-)

Click here to vote for Kaitlyn

Click here to vote for Cole

The Road to Now

Many people have commented on the blog, Facebook, emails or in letters on how strong we are and how amazed they are at our faith. It wasn't always like that. I want to share with you a little bit of how we have come to be who we are now and how all of you have helped us get here. Trust me when I say, from the day of diagnosis to now, it has been the most difficult time in our lives. 

About a week before being diagnosed

There are many things that happen in our lives and we ask ourselves why? why me? why us? I used to be that person.

When we first got Kaitlyn's diagnosis when she was about 9 months old, I was devastated (She's now 2 1/2). She was our miracle baby. We had three miscarriages between 2007 and 2008 and were one month away from doing IVF, when we got pregnant with Kaitlyn. She was an answer to our prayers; a true miracle and gift from God.

A week old

After everything that we went through with the miscarriages and then being elated to have a "healthy" child. When we got the diagnosis, I was crushed and baffled at the same time. How could this happen? 1 in a million chance?!

Friday we got her diagnosis and Saturday we didn't know what to do, so we went to the zoo

At the zoo- looks like the bird is on my head!

I often found myself wondering, what good could come from three miscarriages and now... our miracle child has an "average age of death between two and four years old". In my mind- NOTHING.

As many of you have read in the past, the day before we got Kaitlyn's diagnosis, we found out that we were pregnant with Cole. Another question was- does our unborn child also have NPA? Will he die "between the age of two and four years old"?  Will both of our children be gone and we will be left in despair? He was tested at birth and does not have NPA but IS a carrier like Chip and I.

October 2010- Kaitlyn sitting on Cole (baby bump)

We used to be very involved in our church in Texas. We were small group leaders for middle school kids and involved in our HomeTeam. With Kaitlyn's diagnosis, it was easy to "not be up for going to church".

Hanging out with our HomeTeam friends before we left Texas

They even had a surprise 1st birthday party for Kaitlyn before we moved!

I was so angry I couldn't even look at a cross or go to church. It just made me angrier. After we moved from Texas to North Carolina, to be closer to family, I wouldn't put up any of our christian home decor. I didn't want to look at the beautiful framed cross or see any positive verses or hear people saying "everything happens for a reason" or "trust in God" or "maybe there will be a cure". How could I? I was beyond furious at God.

I never stopped believing in God but I was beyond angry at Him.

Despite my anger, I treasured every day that I had with Kaitlyn and I still do. Every morning, I would think, "What would make Kaitlyn happy today?" When Cole was born, I saw their interaction and felt love.

Seeing Cole for the first time

Proud Big Sister!

Over time, a quote that I often thought of was... "You never know how strong you are until being strong is the only choice you have." I was strong because Kaitlyn needed me to be and Cole needed me to be.

My faith turned a corner when we started this blog and started sharing Kaitlyn's story on Facebook. I started receiving messages about how Kaitlyn changed their perspective on life or that they are more thankful for their children after reading about Kaitlyn.

I started to realize that God had planned ALL OF THIS. Little things like the fact that I was pre-med in college and took medical terminology, anatomy, physiology, and got my EMT certification hit me that there was a reason for it. I was and am better able to understand the doctors and all of their medical jargon. I can respond in emergency situations like an EMT would and stop being "mom" and think "assess the situation", ABCs (Airway, Breathing, Circulation, etc.). I used to be frustrated that all of my pre-med classes were now considered my "electives" because I decided not to go to medical school. Ugh- organic chemistry, physics! I stayed in the healthcare field because I loved it, but I wanted to have a family and I didn't want to be on call all the time. God was preparing me for Kaitlyn, even over 10 years before she was born.  

June 2011

I was depressed and had anxiety while we were going through our miscarriages and still deal with depression and anxiety every day. I do, however; feel that having gone through three miscarriages made me have the ability and strength to imagine a life different than what I always imagined. I went to a counselor in Texas who had lost one of her twins at birth and learned about "alternate realities". Being able to even fathom or accept that life might be different than what you had always planned or envisioned. Trying to imagine a life without our own biological children and adopting children that need loving parents instead. It really helped us. I feel that it has helped us with Kaitlyn's diagnosis and knowing that she will be gone one day but that it is okay.

August 2011- at the hospital

I kid you not when I say that there were a number of days in the past few months where I received over 200 emails a day from people who were praying for Kaitlyn and their children were praying for Kaitlyn. It opened my eyes to how our precious daughter was changing people's hearts and lives. I know you have probably heard me say this before but even if it's just for a moment while you are reading the blog that Kaitlyn's story is touching your heart or making you feel differently about your life and the way that you lead it or whether it's for a day or a week or forever. She is making and has made a difference. More than I could ever have imagined. This is why she is here... to touch your heart, to make a difference, to make you realize what is most important to you, to see the goodness in others and have faith that there IS a reason, even if we don't understand why or can't see it at the time. 

Christmas 2011- One of my favorite pictures ever!

Don't get me wrong. I am not happy that Kaitlyn has NPA nor do I wish this on anyone. I will be beyond devastated when Kaitlyn passes away. Kaitlyn IS however a blessing from God sent here to touch others' hearts. So many people read our blog and feel so sad and yes it is terrible that she has to go through this but look at ALL the good that she has done! And she is only 2 1/2 years old! Now I feel so thankful that God chose us to be Kaitlyn's parents. To allow us to give her a voice and make such an impact in this world. Kaitlyn is a miracle and was created perfectly in the image of God.

Yesterday with Daddy

Please do not feel sorry for us for we are the lucky ones.