Tales of the Toot

'Cuz special needs kids need special mamas!

more hospital time on the horizon December 31, 2008

Filed under: AHUS,Atypical HUS,kidney failure in children — christycross77 @ 12:54 am


Hope that everyone had a great Christmas. Mimi (David’s Mom), Aiden and I are back in Dallas today for pheresis…it was SUPPOSED to be done at 1:30! ha..they didn’t even start until after 4 and it is a 3 hour procedure and then a 2- 2.5 hour drive home and then of course we have to hook poor toot-bug up to 12 hours of dialysis. Not a fun day. Aiden’s labs didn’t look good today and Dr. Quan thinks we need more dialysis. He is moving us up to twice per week to see how that affects the labs. Aiden and I will be traveling back to Dallas next Monday for our dialysis appointment at Childrens and then back here (Medical City) to check in for Monday-Wednesday. He will get pheresis on Tuesday/Wednesday and then if all is well we will go home. He is scheduled for lab work on Friday to make sure his blood counts are stable enough to go through the weekend without a transfusion so say a special prayer for him for that and also that he remains infection free. Not looking forward to next week,but will do what it takes to make our little toot better.

On the bright side, Aiden made out like a little bandit for Christmas and can’t decide which toy to play with…so he plays with one for about 60 seconds and then switches to another. He’s really enjoying everything he got.

I have also met some awesome Moms here, that spend even more time here than me. It helps me keep some perspective when I hear their stories. Even though it feels like it, I know we are not alone..and we have it better than some. My heart goes out to these other sweet mamas that are doing what it takes for their little ones. Isn’t that what it’s all about?

I am thinking of approaching a local jewelry company about designing a necklace for Aiden…something in sterling silver that could be made and sold locally and maybe online with some procedes going to the Foundation for Children with Atypical HUS (which is the only foundation I’ve found that is helping fund research for his disease)…if anybody has any pointers or knows anyone that could help me with this please let me know. Here’s what gave me the idea..

http://www.swedeatheart.com/product_info.php?cPath=21&products_id=101

One of the moms here where’s one of these in support for her son and it got me to thinking…I was thinking (and brainstorming with Cheryl) and we thought “Aiden’s Cross” would be awesome…..feedback is appreciated, I’m really serious about awareness and support for Aiden’s condition. Every little bit helps, right?

Thanks for reading and for your prayers and support.

Love,
Christy, Toot and David

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4 Responses to “more hospital time on the horizon”

  1. Anonymous Says:

    The necklace idea is great! Please keep us updated. My prayers are with you guys.Anisa and Aydan

  2. Anonymous Says:

    Christy, you guys are in my prayers! Also wanted to let you know that if you do make the necklace, there will be quite a few people in my family to help you out by ordering (inclduing me!) Caleb sends hugs to Aiden and waves too! Love and best wishes,Karmi and Caleb

  3. Anonymous Says:

    Christy – You are totally in my prayers and praying for a Healthy and Happy 2009! I love the idea of the Necklace and would love to get one – please keep us posted. HUGS! Love Melissa and Libby

  4. Anonymous Says:

    Hey I love this idea…let me know I will definitely buy one!!! Hope all is well, our prayers are still with you! Happy Holidays! Love,Brooke


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