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.

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

I ran across a new blog that I really like this week, called The Girl Next Door Grows Up. When I saw that she had a fun link-up called “Feel Good Friday”, I decided to join in the fun. It’s just a little bit ironic (don’t you think) that I am participating in my very first “Feel Good Friday”  the day after having all 4 of my wisdom teeth cut out—so I don’t actually feel very good at all! LOL! Just goes to show you that I’m a fun gal—always up for something new–even if I’m not feeling 100%.

 Here are a few things that made me feel good this week:

1. My hubby taking off work to take care of me after my surgery.
2. My little man rubbing my face and telling Daddy, “I need some medicine, daddy! Mama’s got a headache!”
3.  Good friends and family checking on me.
4. Feeling loved.
5. Loving.
6. Lortab….haha, couldn’t resist throwing that one in there. Thank the Lord for modern medicine!

Have a great weekend-

Christy

"Aiden's Cross" designed by Sterling Grace Jewelry

I am so happy announce my very first giveaway!! This giveaway is awesome for several reasons: 

1.  A beautiful sterling silver pendant that retails for $58.
2.   The pendant, “Aiden’s Cross” is a specialty item designed for and named after my son, Aiden to help promote awareness of the rare medical disorder he suffers from: AHUS (Atypical Hemolytic Uremic Syndrome).
3.  Proceeds from the sale of “Aiden’s Cross” are distributed to the University of Iowa to help fund research for AHUS.

For more information about Aiden and AHUS visit the Aiden’s Cross Website. You can buy your Aiden’s Cross at the Sterling Grace Jewelry Website. 

[youtube=http://www.youtube.com/watch?v=BxvSBqQ5mIQ] 

Entering to win is easy! 

• First, become a Tales of the Toot follower by email and then visit www.aidenscross.com . Leave me a comment (on this blog: Tales of the Toot) telling me how you would help spread the word about this ultra-rare disorder and/or what you learned about AHUS. If you are already a follower, let me know that in your comment! This is required to enter-1 entry.

Extra Entries 

• Follow me on Twitter @AidensCross. (Please leave a comment letting me know you are a new follower or if you are already following). – 1 entry
• Tweet about this giveaway. – 2 entries/1 Tweet per day max credit
• Follow Tales of the Toot on FB’s Networked Blogs. Leave me a separate comment letting me know you did this. -1 entry
• Visit the Sterling Grace Website and let me know what your favorite piece is. -1 entry
• Post my giveaway on your blog. (Leave me a comment with the link) -3 entries!!
• Visit one other post at Tales of the Toot and leave a comment. -1 entry

 To receive credit for all entries please leave a separate comment/associated link for each task you complete.  

The winner will be selected by Random.org on Monday, February 1st at 2:00p.m. CST and will be notifed by email. If you are the winner, you will be given 48 hours to claim your prize before a new winner is selected. 

Thanks so much!  

Good luck! 

~Christy~

….welcome back to where it all started….. Tales of the Toot was my very first blogging experience and it was such an important outlet for me as well as a great way to keep others informed of what was going on with Aiden (our little Toot) while we were spending so much time in the hospital.

 But I have missed having somewhere to share my musings, my thoughts, my experiences. I try to keep Aiden’s site (www.aidenscross.com) and his associated blog, pretty much just about Aiden and keep my personal thoughts/feelings out of it. I miss having that! So here I am!! Back to blog as I wish and decided to keep the name: Tales of the Toot. As much of my day revolves around my little man I am sure there will be many tales of the Tootster here, but this will also be my place: to share my thoughts, prayers, feelings, opinions, etc. 

Of course we always think we have important things to share…but I truly believe God has given me Aiden, and the trials in my life for a reason. If not to share, to make a difference somewhere for some other mama, then what for? Surely God can and will make good of everything. Even the incurable and “ultra” rare disease can be used for good.

I have a heart for mothers. All mothers, but especially those dealing with an ill child. I also have a heart for the mother-less. I know what it is like to feel like you have no one to mother you; what it’s like to be afraid that you will not know how to mother as a result of your upbringing. I also know that God has given us everything we need to overcome those fears and I know first hand that God provides us with “spiritual” mothers when our natural mothers will not or cannot fullfil their roles. I pray that one day God will use me as a spiritual mother to someone who needs it and I thank Him for my own spiritual family. They were and are so very important to me.

All of that to say this….I’m not sure exactly where this blog may go. But it is mine! For those of you interested only in Toot news, please continue to follow his progress at www.aidenscross.com. There will be a great mix of Aiden here but also personal stuff on me and my journey as his mother.

Can’t wait to see where this blog takes us……

In Him,

Christy

Okay, I keep forgetting about this thing..but since I’m spending way to much time on the internet right now while my 10month old is sleeping in his highchair (guess those yogurt melts wore him out ) I thought I’d drop in a post.

Being a SAHM is a great job..but it’s definitely hard to be your own boss. So easy to be lazy all day and not get anything done because HEY there’s nobody here to tell me to do it! And Aiden couldn’t care less. That’s something I truly have to work on….Keeping myself motivate and not letting myself get sucked into the internet, tv, etc.

I wonder if anyone else has this SAME problem???