The Miracle Boy

My baby is a miracle. I know it sounds cliche, but it is true. On April 3rd we go the news that he was in the tiny percentage that test positive for Gardner's Syndrome in a tumor and does not have the mutated DNA to match. Without the mutated DNA, by definition, Lincoln cannot have Gardner's Syndrome. Even typing that last sentence out is surreal to me. I feel like this is too good to be true. How did we get so lucky? I feel like we won the lottery. The emotions of everything has been entirely overwhelming. I feel like Bill and I have PTSD. I find myself randomly crying. It is such a range of feelings that I did not expect. I am so overjoyed. I am so sad for the others who do not get as lucky as us. I feel guilt when I experience any frustration with my children lately. I am so, so, so grateful! I haven't blogged about this earlier because it has just been to much to even put into words. I have needed time to come down from cloud 9. Tomorrow we have an appointment with Lincoln's oncologist in Dallas to discuss the future plans for his care. It will likely include continued monitoring for the rest of his life, and regular MRI's and early colon scans. I can live with all of this, as long as he gets to live, which he will. He now has a regular life expectancy and so all is right in our world again. It is truly a miracle. I lived a charmed life.
The most probable cause of Lincoln's tumor, and it testing positive for Gardner's, is a mutated sub gene in his sub DNA. Scientist don't know how to read these smaller than DNA codes but suspect that they are the cause. This basically means that Lincoln will be at risk for everything that goes along with Gardner's but will not show all the signs. In fact, and hopefully, this could be the only symptom Lincoln ever shows. Truly a miracle!  

Easter 2013

We had a pretty great Easter. We had a nice brunch all together, then we all just hung out at home, and did a few chores. Then we all got showered and in our Easter outfits and went outside to take a few pictures. We then went on a walk around the pond, fed the ducks and did a little bit of fishing.

Those last two pictures so sums up our family right now! I love it! Totally chaotic and goofy! We are a fabulous mess and even though it drives me bananas most of the time sometime, I know this is a season of life that I will really, really miss. 

Liam really wanted to take a picture. Sydney was not impressed clearly. 

When we got home from our outside family time we had a really nice dinner together. It was a laid back day and I really enjoyed it. Happy Easter! 

I have no intentions of making this blog all about Lincoln's illness but obviously it has a lions share of my thoughts lately. I spoke with the nurse at the Genetics Clinic at Cooks today. She said that Lincoln's final DNA test should be in sometime this week. I am super nervous. He also has an appointment with his new oncologist. I am so worried that we are about to go down the same road we were just on. I am so hoping that the new bump I see on Lincoln's back is just his muscle healing from his last surgery and not a new tumor. I am a stress crafter. Last month I sat for two days and cut out bunnies when we got the last bit of bad news. I am not sure what I can decorate for this month, but lets just say, I see some major crafting in my future.

Exhibit A:

Please pray for us. 

The Boom

I have been wanting to blog for sometime but haven't really been sure how to talk about this. I don't want to be too dramatic, or too casual. Some part of me is still in denial too. I am holding on to the small hope that Lincoln is going to be totally healthy. By not talking about it, that it somehow isn't real.  The awful truth though, is that doctors think that Lincoln has Gardner's Syndrome. What is that? Exactly. I had never heard of it, and it wasn't even on our radar. Then...BOOM! We were totally unprepared for this. At first we were told that Lincoln likely just had a benign tumor. We weren't happy about this but it was for sure a relief. Then we were told Lincoln likely had fibromatosis. That also wasn't great, but really not a huge deal. The tumor was removed and then BOOM. I guess nobody can be "prepared" for something like this. We weren't sat down in a doctors office and gently told though. Nope, we were told by an ER doctor who had pulled Lincoln's results that we should go home and "google it". She had never heard of it but because she could see that the tumor was benign, she assumed it was good news. She was wrong. Go ahead and google it for yourself. Tumors, colon cancer, and thyroid cancer are the main highlights.
We have done testing on Lincoln's tumor and they are showing genetic markers for Gardner's Syndrome. We asked for a second opinion and the surgeon obliged. The tissue samples were sent to Vanderbilt for testing and they too came back positive. We are now waiting on the DNA blood test to come back as a final result. We have been told to accept the diagnosis as the chance of the DNA being negative is almost zero.
I don't know how we are ever going to live with this. I don't know how I am going to be able to watch my precious son go through this. I am not sure that I will able to be strong enough for him, my other kids, or my husband.
Everything I think to say about this just seems ridiculous after I type it out. Honestly, there just isn't much good that can be said about this. I am just not a "doom and gloom" person. I am not really sure how to spin this into something I can sound positive about though. This is the only life Lincoln is going to have, so I still feel like I have to make this as good as possible for him. When I say something like "We are going to be okay and get through this together "I also feel like that is ridiculous. This is not okay. BUT, I don't want to be negative and say "this is not okay" either. Its confusing, and frankly, exhausting.
Please pray for us. I know that miracles happen, so why not ask for one for my perfectly, innocent little man?! He is a sweet, happy little soul. He deserves to live a full and long life.

Happy Birthday Liam!

A few weeks ago, Liam turned 6! I can't hardly believe that! I have no idea where the time has gone. I feel like it is almost impossible that he is 6, but at the same time, I can hardly remember my life without him. I love him so. Liam is a seriously sweet soul. He is currently living life as though he is in a par core competition (over the back of the couch, jumps on then off the ottoman, walks up the outside of the stair rail) with reckless abandon, but still such a gentle little man. I am so proud of Liam. He has such a compassionate heart. I don't think I have ever met another person who could match Liams sweet heart. Happy 6th birthday Liam!

Sorry for the blurry pictures. I was using my iPhone and the lights were out for the candles. Liam had his party at ASI gymnastics. We also had a baseball cake at home for him. Liams birthday was kind of the birthday that wouldn't end this year. I took advantage of every opportunity to celebrate for him. I know that part of this was because I was afraid Liam would get overshadowed by Lincoln's surgery that took place 2 days before Liam's birthday. I am pretty sure the mission was accomplished. 

I have a lot to say about Lincoln and how his surgery/diagnosis went but I am too tired to open that can of worms right now. Plus, lets not overshadow Liam's big day. I am all about celebrating my babies lives! 

He Stands...

Christmas was great.

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 It snowed in Texas!

We had oh so much fun that day. Phylene was in town for Lincoln's surgery but he ended up with RSV. I had taken Lincoln into the pediatrician for what I suspected was a cold and an ear infection. Within an hour the pediatrician had called an ambulance and we got a "fun" little ride to the hospital. Lincoln was only breathing at 75% but after some scary breathing treatments, we went home that same night! And I thought he had an ear infection...guess I won't be getting that mother of the year award after all. I was so close. Here's to hoping for next year.

Anyways, since Lincoln will have to have a breathing tube during his surgery we have to make sure he is totally healthy for his surgery, which is now going to be Feb. 21st. I am getting more nervous as it is getting closer. Tonight Lincoln decided to put some of my anxiety to rest. I had put Lincoln in his crib to play with some toys while I got Sydie and Liam ready for bed. All of a sudden, I look over to see Lincoln standing up! HE STANDS! Just last week at his 9 month appointment, I was told he should be standing by now. Of course, I was a little concerned about this. WELL, he stands! Milestone nailed. Next up is kicking fibromytosis's butt.