I haven’t posted here in a while. Many of you know that we have had a lot on our mind the past week or so. Aiden has been tentatively diagnosed with a rare bone disorder — to go with the rare kidney disorder. Oh joy! Seriously, can my baby catch a break? If the diagnosis is confirmed, chances are he will need surgery on both legs before he can have his kidney transplant.

To be honest, I wanted to throw my hands in the air and scream at anyone who would listen, God included. But the very same day that we got this “tentative” diagnosis Aiden , once again, taught ME something.

After the long car ride to and from Dallas, he was exhausted and had spent most of the ride there and back crying because his legs hurt after long periods of time in his car seat ( the pain is apparently a side-effect of the bone disorder). He was talking on the phone to my grandmother after we finally made it back home and one of the first things he asked her was, “Is PawPaw doing okay?” Nevermind his pain, nevermind 2 rare diagnoses and surgeries and trials to come…he was concerned about the well-being of those he loves. My heart swelled. Surely God has given me a rare gem of a child. I am blessed.

Later that night, after hooking up to his dialysis machine we said our prayers. “Now I lay me down to sleep…” After the “Amen” at the end, Aiden added “Praise you Jesus.” Again, my heart was full. Full of love for this little blessing that teaches me so much. Instead of dwelling on the difficulties, he opts to Praise You, Jesus. And so….I will too.

I honestly think that my son teaches me more than any adult ever has. I pray that I am teaching him invaluable lessons along the way too.

Pray for Aiden.

Hey friends!

It has been over a week since I updated Tales of the Toot and for that, I’m sorry! We have had a very, very busy week here and are all exhausted. But, it’s a good kind of exhausted, so we’ll take it!

This week, Aiden’s wish was granted by the Make A Wish organization. Aiden wished for his very, own playground and was super excited when the playground was unveiled on Friday! He has spent all weekend playing and keeps telling us how much he loves it. Thanks so much to our Wish team for making the experience so much fun!

In case you missed it, here is the link to the story as covered by our local KLTV News:

KLTV7 Coverage

And, the link to photos takes by Longview News Journal (typo in their story they state Aiden has a rare liver disease, but AHUS is a rare order that effects the kidneys):

Longview News Journal Coverage

And a few pics from Aiden’s “Wish Party” at Chuck-E-Cheese and the playground he wished for:

Thanks so much to all of our friends and family who came out for the celebration–we loved sharing our Toot’s special day with you!

…We now resume our regular blogging schedule…

My goal here at Tales of the Toot is to encourage moms of all backgrounds, but specifically those who are parenting kiddos with “special” needs. It occurred to me that many of you may not have seen Aiden’s website and therefore may not understand his “special needs”. I wanted to take a moment and give you all a little background on Aiden. When you look at his handsome smiling face with those big brown eyes, you probably see just normal. That makes me smile, because we are doing everything we can to be normal. He is our greatest blessing and we are so thankful for him.

In November of 2007, after receiving his standard 4 month-vaccinations, Aiden became critically ill requiring him to be life-flighted to a Dallas hospital and admitted to the PICU for a month. During that month, Aiden faced many emergent situations: he required intubation for 8 days, surgeries, dialysis and multiple blood transfusions. He made what seemed to be a miraculous recovery after 5 weeks and we were able to take him home to live a normal life, dialysis free for almost a year. It was believed that it was a fluke thing that he had gotten sick and that we were “in the clear” so to speak. Aiden lived normally for almost exactly one year before routine lab tests at his nephrologist’s office raised a red flag. Again, we were shipped to Dallas for more time in the hospital, testing, surgery and dialysis. His nephrologist had a grim suspicion which, after a kidney biopsy, proved accurate. Aiden was diagnosed with Atypical Hemolytic Uremic Syndrome (AHUS). AHUS is not just rare, but ultra-rare with an estimated 300-600 cases known, an unclear cause and no cure. Treatment is trial and error. As a registered nurse, I had never heard of it and most doctors and medical professionals are no exception. Because it is so rare, it is virtually unknown. With AHUS, Aiden’s body does not respond normally to infection, viruses and vaccinations. His immune system doesn’t know when to apply the brakes, attacking his kidneys, blood cells and platelets. By the time the diagnosis was made, Aiden’s kidneys had been rendered useless. The damage was too great and kidneys do not have the ability to heal themselves. Aiden has been on daily home dialysis since November of 2008 for 10-12 hours each day. He is on multiple medications for blood pressure, shots for blood cell production and growth and has spent more time in the hospital than I care to talk about. He has had 9 surgical procedures to date, the most recent being a nephrectomy (kidney removal) in September of 2009. He is 2 1/2 years old.  At this point we are awaiting prime conditions for Aiden to be considered eligible to be added to the kidney transplant list. Because AHUS is so rare and is not well-understood, David, myself and all close family are not considered acceptable donors – for fear that a genetic link could increase Aiden’s chances of AHUS attacking his new kidney. A transplant is not a cure for AHUS but will give Aiden a chance at a normal life, dialysis free. We pray that as awareness increases, more research will be done and a cure will be found. We have hope in a drug that is being used in a trial for treatment of AHUS, called Soliris. Many AHUS patients are having success in maintaining kidney function while using Soliris and our hope is that Aiden can begin trial use of Soliris with his kidney transplant for the best chance at “normal” life.

I realize that this is a lot of medical talk thrown your way, but felt it important to give those of you new to our family a brief history of what makes Aiden so special. You can read more about AHUS at Aiden’s site: www.aidenscross.com.

In the meantime, we make the absolute best of the free hours we are given during our day. We live as normally as we can, and Aiden doesn’t know that he is “special needs” at all. He recently remarked to me that Barney had to get hooked up to his “machine” at night, too. So to him, this is everyone’s norm. I pray that there will be a cure before he is old enough to realize but if not, we will do our best to raise him with hope, faith and dignity.

We try not to put him in a bubble, we do fun things and take vacations. He is as smart as a whip and we are truly blessed. Everyday we make the conscious decision to define AHUS, instead of allowing it to define us.

I know that God’s infinite wisdom is much, much greater than what I can see. I cannot pretend to understand why my little man must endure this disease – or why any child must endure illness, for that matter — but, I have faith that He is in control. The picture is bigger than I can see. Maybe, just maybe I am helping someone today by sharing Aiden’s story.

I am so honored to have you here at Tales of the Toot. Please continue to visit us, pray with us and help us fight for a cure and a full life. Please ask questions, leave comments and keep in touch. We love hearing from you.

-Christy, David and the Toot

We have spent way more than our fair share of time in the hospital over the past 2 years. Although living in the hospital is NOT my preference, it has allowed us to encounter some of the most wonderful people. Here are the 3 people you meet in the hospital.

1) The Angel — aka the nurse. This is not any or every nurse, but the one who reaches out to you. The one who loves and takes care of your child as if they were his/her own. The one that cares not only for your child, but for you. Some of the wisest words ever spoken to me were from the mouths of these angels. They are truly heaven-sent and I thank God for them. (We love you Grandma A and Debbie!)

2) The Other Mother – This is the one that has been there as long (or longer) than you. The one who REALLY knows what it’s like to live with a sick child…the one that you can hear say “Just trust God” and believe that they know what they are talking about. The only one that can get away with telling you “It will be okay”…because they know it will be okay, they have been there, they are there and they are invaluable as a source of inspiration and comfort. (Much love to you, Heidi!)

3)The Dr – I pray that you are as fortunate as we have been. We are blessed to have been surrounded by doctors who not only are excellent at what they do, but have a real heart and love for the kids they treat. Our doctors have been encouraging while remaining honest; have never given us false hope but have never given up and have laughed and cried with us. They love Aiden, they love what they do…and it shows. (Many thanks to the ICU staff of Medical City Children’s Hospital in Dallas, the surgeons and the ARCH group…and of course Dr. Q )

If we have learned anything, it is that God is always present. On days when I just couldn’t quite feel his presence and didn’t quite know what to say God always had someone ready to minister to me in the way that I needed. I thank Him for that and feel so very blessed to call the “people you meet in the hospital” friends and family.