Tuesday, December 30, 2008

more hospital time on the horizon


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

11 comments:

Anonymous said...

I have no pointers about the necklace, but if you figure it out let me know, I would definitly buy one or maybe a couple for friends I know that would support such a cause. I think of you and your little man often and I hope you get some good news from your next round of tests.

Love,
Jamie

Penguinmommy said...

The necklace idea sounds great! Or even a bracelet! Please keep us updated on it, as I would love to buy one! Keeping you in our hearts and prayers! May 2009 be a Blessed one for you!

Melanie Loyd said...

I am still thinking and praying for you all constantly!!! You are such a strong Mama for Aiden! He is a very lucky boy to have you and all those around him to love and care for him so much. The necklace sounds like an awesome idea!

Anonymous said...

Christy,
I just want you to know that your little toot and you and David are never far from our prayers! Your strength through all of this is truly inspiring and there is so much love, support, and prayers floating around for your family!! I love the necklace idea...I would totally rock one to show our support for something that so few are aware of. You're doing an awesome job taking care of Aiden, please remember to take care of you too!

Love,
Loren, Jimmy, and Halo

P.S. You should make the necklaces (or bracelets or whatever you end up deciding on) in kiddo's sizes too. Halo wants to wear "Aiden's Cross" also!

Anonymous said...

Big HUGS to the toot!! I would love a bracelet/neclace or even just a charm. As always, you remain in our prayers.
Amanda & Adam

Anonymous said...

Christy I think the jewelry idea is fantastic, I don't have pointers but would defintely get one. Please keep me updated!

Love ya!
Leah

Anonymous said...

Aiden, you and your family are in my thoughts daily. I hope that everything goes well with his treatments and that they are on time! Praying for good lab results for Aiden (and for mama). Stay strong honey and know you have hundreds of prayers and thoughts with you guys all the time. BTW, The necklace would be amazing! I think everyone that knows you guys (IRL and online) would rock one!

Anna and Soleil- JJB

Anonymous said...

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

Anisa and Aydan

Anonymous said...

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

Anonymous said...

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

Anonymous said...

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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