Correction..oops

just a quick correction to yesterdays post...I said Aiden needed more dialysis and I meant to say he needed more pheresis! Dialysis is going well. Thanks so much for all the support for the "Aiden's Cross" idea. I contacted a local company today called Sterling Grace. www.sterlinggracejewelry.com to see if they would be interested in doing something like this. Fingers crossed!

Love y'all,

Christy, David and Toot

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

Christmas Eve

Just a quick post to let everyone know that the surgery went well when they finally got around to doing it. There was some mix-up with the insurance and they ended up cancelling us when we got here, then admitting us and adding us in as an emergency case...it was so stupid and they didn't even take Aiden into surgery until 10:15 last night. (which means he was NPO for 28 hours! poor baby!!) We were not happy campers but are so glad that the surgery went well. His new line is in place and they are starting pheresis now, so we will see if it looks like it will work better than the old catheter did. The pheresis will last about 3 hours and we have to finish his dialysis...(he didn't get put on until 2 this morning after all the delays)...so hopefully we will get discharged and be on our way home sometime around 3 today. Thanks so much for the prayers and support. I hope everyone has a very Merry Christmas tomorrow.

P.S.

...I was in a hurry earlier, but wanted to come back and add a VERY special shout-out to my cyber-bestie Apryl. Thanks so much for never being more than an IM away.MUAH.

Prayers for Aiden...surgery tomorrow..

Most of you know that we got to come home last Friday. Yay! It has been an adjustment with the dialysis at home but thanks to my wonderful MotherInLaw and great friends we are adjusting! Aiden is doing awesome and is so happy to be home. His urine output was great yesterday and last night..almost like normal! and his blood pressure is so good that I have been holding most of his blood pressure meds. We are still praying that his kidneys will recover and we will be done with dialysis!

Tomorrow we have to go back to Dallas for surgery. Aiden's central line that they use for the plasma pheresis isn't working so they are going to take it out and put in a new (and hopefully better) one. It should be a simple surgery but I ask for y'all to pray that all goes well. Assuming that it does he will have pheresis Tuesday evening or Wednesday morning and we should be home Wednesday late.

I appreciate all of the messages, well wishes, cards, money, gifts...etc. You guys are the best.

A special thanks to Chad and Cheryl for your love and support. We absolutely could NOT do this without y'all or Kathy (mom-in-law from Heaven!)

We love you all!

David, Christy and tha Toot!

Nightmares...

So, I had a nightmare last night....I won't go into the details except to say that it was horrible and in it my worst fears came true. The fear of it lingers with me today even though I know (and knew even as I was dreaming) that Aiden was okay. I could hear him breathing beside me as I was dreaming but the fear remains. It is always there now...under the surface...in the back of my mind. Maybe it has been there since last year or always but it was easier then to push it away, to ignore it. Now I can always feel it and I'm not sure what to do with it; How to make it go away; how to defeat it? Biblically and realistically I know that fear is not of God and I should give it no place in my mind, my heart, our lives...but how? Especially when I feel that I am so distant from Him right now. I don't know how or what to pray for anymore? I don't understand the why's or how's. I know it's cliche' but it's just not fair. Not to Aiden. He doesn't deserve this. Why can't I take it away and make it better for him? Isn't that what Mama is for? Someone once told me that when you can't pray, when you don't know how and when you are angry that it's okay. God understands. They said that it is then that others stand in the gap and pray for you, and you just trust that God knows your heart. I hope they are right. I am holding on to that right now.

what is today's date?

They all run together after a while. Sorry for the lack of updates. We moved to children's medical center of dallas last week and their wifi (among other things) sucks so I can't even get to my blog except from the blackberry. They moved us here strictly for dialysis training for home and we've been here since Wednesday evening and have gotten about 4 hours of training. We have to complete it, be checked off and have a home visit before we can be discharged and they are taking their sweet time... Needless to say we are annoyed. And for the record this hospital sucks and we wish we were back at medical city (if we have to be in a hospital,that is)looks like we are here for at least the rest of this week. From the looks of it once we are done here, we may get to come home and do pheresis about once a week for right now, if aiden's bloodwork stays within the range it is now. He will have dialysis at home for 12 hours each night for now. Praying that his kidney function come back and we don't need dialysis, but for now... Still waiting on test results from Iowa hopefully they will guide is more as far as treatment goes. I apologize for typos. The address for those of you who've asked is:

1935 medical district drive, dallas TX 75235

We are in C5263.
Thank you so much to those of you who have continued to call, email, text is over the past few weeks to check on us and Aiden. You are truly friends and we appreciate you.