Tales of the Toot

'Cuz special needs kids need special mamas!

Tales of the Toot has moved…. February 12, 2010

Aiden's CrossHey Y’all!
You may have noticed that I’ve had no new posts this week…. (I hope you’ve noticed!)… I have been working on moving Tales of the Toot to it’s very own domain and am finally up and running over at the new site!!

Please go over to: http://www.talesofthetoot.com  and reconnect/follow/subscribe over there. I love all my bloggy friends and don’t want to lose anyone in the transition.

Now that all the hard work of moving content, figuring out codes, plug-ins and widgets is done, I am excited to return to regular posting as well as visiting your blogs!

Come see me @ http://talesofthetoot.com

Thanks so much!

Christy

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and the winner is….. February 1, 2010

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!!

 

Sterling Silver “Aiden’s Cross” Pendant Giveaway!!! January 25, 2010

"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

 

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~

 

3 people you meet in the hospital… January 7, 2010

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.

 

December 31, 2009

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

 

A Good Week! January 15, 2009

Filed under: AHUS,Atypical HUS,kidney failure in children — christycross77 @ 9:55 pm

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

 

Revolving Doors January 9, 2009

Filed under: AHUS,Atypical HUS,kidney failure in children — christycross77 @ 10:19 pm


..yep, that’s what we feel like the hospital(s) are right now…just a revolving door for us. I haven’t updated in a while because we’ve been on the go between hospitals so much. We spent last weekend in the local hospital because poor toot got a stomach bug and couldn’t keep anything down. The dialysis pulls a certain amount of fluid whether there is any extra or not, so we were afraid of dehydration during dialysis without IV fluids. We literally checked out of the local hospital Monday at 9:30 a.m. went home to pack and were on the road by 11:30 headed to the hospital in Dallas where we were for pheresis until Wednesday. They have Aiden up to 2x per week on the pheresis now because his dr. didn’t feel like once a week was enough. Basically we check in on Monday evening for lab work, stay the night and have pheresis Tuesday morning stay another night, have pheresis Wednesday morning and then are released and come home. I am so thankful for great friends supporting me through this and a few awesome family members. (THANKS JEN FOR NOT LETTING ME GO TO THE HOSPITAL ALONE THIS WEEK!!)

I’m unsure if the pheresis at 2x per week is changing anything or not. Basically because I don’t feel like Aiden’s lab work is being followed closely enough to know if there is a real difference. I am starting to think it’s not a bad idea to seek a second opinion as far as treatment options are concerned. Aiden’s Dr. is great, but it never hurts to have another brain to pick, especially with something that so little is known about.

Aiden’s spirits are great and he is running around playing right now. He really is awesome. The only thing that really got him down was the stomach bug…poor baby felt so bad.

Still no results from Iowa…looks like they weren’t kidding when they said three months…halfway there.

Great news to report! Aiden’s Cross is a go!!! Deborah Harter, owner of Sterling Grace Jewelry is already working on the design. She is so very sweet and supportive of this idea and of the idea of increasing awareness of AHUS. She is truly awesome and I am honored to be able to work with her on this and so very happy that she has agree to do it! Thanks so much to you ALL for writing in and showing support for Aiden. I will keep you updated on the progress of Aiden’s Cross!! 🙂

I will of course update on any news or changes of Aiden and plan on getting some recent pics up as soon as I have a spare minute.

Love y’all,

Christy, David and Aiden