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

Check your emails ladies to see if you have won the Sterling Silver “Aiden’s Cross” Pendant!!!

Thanks so much to all of you who entered, and a special shout-out to all my JJB Mama’s who have supported me and Aiden with love and prayers since Day 1 of this diagnosis.

Spread the word about AHUS. Awareness is key. We need a cure!!

"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~

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.

Happy New Year!!

Praying blessings for each of you for the new year!

We have been so blessed in so many ways this holiday season. First off, it was Aiden’s first full Holiday season spent at home with no hospital stays! We have so enjoyed being home and enjoying friends and family this holiday season!

Many of you know that I have a cousin who was critically ill. The doctors gave absolutely no hope and were actually waiting on him to pass. He was in severe liver and kidney failure and they believed that his brain was effected and had possibly already herniated from increased pressures. The DNR had been signed and transplant teams called to harvest his heart upon his passing…..and then a miracle happened. He opened his eyes, began following commands and now 4 days later is sitting up in bed, playing his IPOD and talking! It is truly a miracle–no other explanation. Dr’s and medical staff from surrounding hospitals in ATX have been coming to see this miracle for themselves. To God be ALL the GlORY!! I know that God has a great plan for Alex and cannot wait to see what he will do with his new chance at life!

In 2010 I will be adding blogs on at least a weekly basis and will be having periodic contests for give-aways, etc. Please join our mailing list for updates!

Have a wonderful but safe New Year’s Eve!!!

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

YAY!! It’s been a great week for Aiden and for us too! First off, Aiden’s bloodwork looked absolutely wonderful on Monday evening when we checked into the hospital. His blood count was actually in normal range–something I have NEVER seen, even before his diagnosis! His electrolytes looked great and his kidney function tests, while not normal, were an improvement from last week. Maybe pheresis twice per week is going to do the trick?! I’m praying for another great lab report when we check in this coming Monday. Aiden is running around having a great time UNcleaning the house as I desperately try to clean faster than he UNcleans…ha, guess who’s winning that race?

Aiden and I are meeting with Sterling Grace owner, Deborah Harter tomorrow to make more plans for “Aiden’s Cross” She has already completed the design and I cannot wait to see it! I am absolutely thrilled that she has not only agreed to do this but has taken it on whole-heartedly and is working through her many, many contacts to spread the awareness about Aiden and Atypical HUS. She is truly a God-send. More on that after our meeting tomorrow!

I am encouraged. For the past week and a half I’ve felt the peace of God finally return to me and I can see a change in David, too. I still don’t understand the why’s, but I truly believe that God has a plan. Thanks to whoever it was who prayed specifically for that “peace that passes understanding”–Ha, I know YOU are out there–just don’t know which one of you it is. It is now our goal to not only live each day to the fullest and with Aiden-like zeal but to spread the word about Atypical HUS to all who will listen. Look out Oprah–here we come!

A very special thanks to ALL of our wonderful friends and as always to Mimi! We have a wealth of love and support from great friends and it lifts us up to know you care.

Please continue to be in prayer for more good news for Aiden and for the “Aiden’s Cross” project. Also–please say a special prayer for the family of Caden White (www.cadenwhite.com) and for the family of Mellissa Ybarra and specifically, Ian their sweet son.

Love to all,

Christy, David and Toot