Tales of the Toot

'Cuz special needs kids need special mamas!

We are moving….. January 29, 2009

Filed under: Uncategorized — christycross77 @ 4:59 am

…..the blog that is! We have a new website for Aiden! It is http://www.aidenscross.com

we will be posting all new updates, blogs, etc…there…

Be sure to stop by often for updates on fundraising, Aiden’s Cross and on the cute little toot himself!

Be sure to sign our guestbook! 🙂

 

A week at home!!! January 27, 2009

Filed under: Uncategorized — christycross77 @ 4:41 pm

Yay! Most of you probably already know by now (because I could not contain my excitement!) but we don’t have to go to Dallas this week!!! YAY!!! We had Aiden’s labs drawn here in town yesterday and his nephrologist felt that they were good enough that we could skip pheresis this week and stay home for Aiden to continue to recover from the RSV. He is doing great…getting his energy back and is more like his usual happy-go-lucky self! Thanks for all the prayers!

Some very dear friends and 1 awesome family member have been working tirelessly to set up a “non-profit” type account where people could donate “tax-free” to help out with Aiden’s medical expenses. We appreciate them doing this so much and could not ask for better friends than those who would take this on of their own accord and want so much to help out our little toot during these hard times. They have asked that I let everyone who reads the blog know that the account is ready to go–it is at Citizens Bank in Kilgore Texas and any donations can be made there to the Aiden Cross Fund — Tax # 30-0527404. I pray you do not feel that I am pressuring anyone to do this by mentioning it here–We do not expect or ask for anything other than your prayers and thoughts about our little toot, but many have asked if there was such an account..and now there is! 🙂

I’m off to drink some coffee and get started on some housework..YAY–can you believe I’m actually excited about that?! It’s good to be home! 🙂

Much Love,

Christy, David and Toot

 

just an update January 22, 2009

Filed under: Uncategorized — christycross77 @ 6:27 pm

So, it’s Thursday and we are still here. Me and Toot are anyways..David had to go back to stupid work..boo!

Let’s see….where to start???

Aiden’s surgery is being postponed because we found out that the fever that started last week is from….RSV. Right. You have got to be kidding me…..I’m sure he picked it up at one of our many hospital trips. It’s a nasty respiratory virus and takes a few weeks to get completely over. The surgeon wants to make sure he is in the clear before surgery because he will have to be put under for the procedure and we don’t want to risk respiratory complications and ICU and ventilators….you get the picture…Toot also has an ear infection that they think started because of all the pressure from all the coughing. His temp got up to 104.5 on Tuesday. Poor baby. He just feels rotten. He just lays around and sleeps(like he is doing now).

We were going to come home yesterday but Aiden’s blood count was low. (7.8) so he received an additional dose of EPO last night and they rechecked his labs this morning. His blood count is now up to 8.8 but his stinkin’ platelets are 95. Seriously?! I am thinking we will still get to go home, but unsure at this point. Waiting on the Dr. to get here.

Hoping to be home soon,

Christy and Toot

 

and the forecast calls for…more rain January 19, 2009

Filed under: Uncategorized — christycross77 @ 4:59 pm

We are beginning to think that we have a rain cloud following us around. Just think Murphy’s law x100. We had a weekend of “weird” stuff going on with Aiden.

He started looking puffy and fluid overloaded on Friday so we had to up his dialysis concentration to 2% Dextrose in order to try to pull more fluid off. About the same time that the fluid thing happened he developed a cough, which we thought was probably related to the fluid. Saturday night he began to scream like he was in pain and could not sit still. After looking him over I noticed that his testicles looked more swollen than usual and off-color. 10 minutes later they were almost purple and rock hard. I freaked and began making calls to dr.s and making steps to take him off dialysis to get him to the ER. While I was doing this, he fell asleep in Mimi’s arms and when I checked his diaper area again, everything was normal. I pushed on everything and he didn’t react at all. Then only thing off was a little puffy raised area near the top of the testicle. I thought maybe I was crazy at that point! Since he was obviously not in any pain and everything was back to normal we stayed home and he did fine through the night and woke up in a good mood.

During the early afternoon, Sunday, he spiked a temp of 102.1. With Aiden there are so many possibilites for infection with his central line, dialysis site, the cough, etc. that I was not comfortable just medicating him and letting it go. I called Dr. Chaikin (his pediatrician) and she agreed 100%. She talked to Dr. Quan and we all agreed that it made no sense to go to the local hospital when A. they would just want to send us to Dallas because of Aiden’s history and B. we were supposed to leave for Dallas Monday anyway. So Aiden, Mary Lou (thanks Lou!) and I made the trip to Dallas and checked in through the ER here and were admitted to the pediatric floor late last night.

So far his chest Xray and labs look good. From the way it looks so far the cough and temp may be something viral. We have sent blood cultures (peripheral and from his Central Line) and PD (peritoneal dialysis) fluid to make sure there is no infection there. Praying it’s just something simple that has to run it’s course.

When I told Dr. Quan what had happened with the testicles the day before he knew immediatley what was going on. Okay, so I’m not crazy after all. Apparently Aiden has developed a hernia on both sides of his groin. A loop of his bowel has slipped through on both sides. When he gets upset and tenses up it can squeeze the bowel at the opening where it has slipped through..causing the pain, hardness and discoloration, etc. When he relaxes the blood flow returns to normal, the pain is relieved etc….We also noted that he has developed a umbilical hernia.

So of course, this means more surgery. Dr. Quan is contacting the surgeon today to see when they can schedule Aiden–I will let y’all know as soon as I know. It will be a minor surgery. After the surgery we will have to cut down on the volume of dialysis fluid until things have time to heal up.

I don’t even know what to say at this point. I don’t understand why these things keep happening. We just want to deal with one thing, ya know? Please continue to pray for us–it is really hard to understand the why’s and hows at this point. We feel like we are emotionally and physically stretched to our limit already–but as always, we will do whatever it takes to keep our toot healthy and upbeat.

I will update as I know more.

Love y’all–
Christy, David and Tootbug

 

Are the bees happy? September 30, 2008

Filed under: Uncategorized — christycross77 @ 7:26 pm

Because I’m happiest when I’m “bee-like.” I find myself removing things from my plate just to turn around and add something else. For instance, I started a playgroup last winter and it grew to 80 members over the past 8-9 months. Wow! It’s a great success and I enjoyed doing it but when I started back to school I turned over the reins to one of our members because I knew I wouldn’t have time. Smart idea, huh? Except that since I did that I’ve added at least 2 things to my plate in it’s place! I think I thrive on being busy; I’m best under pressure. I do my best work when I know people are counting on me. When no one expects anything of me…I don’t do anything. I become boring and bored. So now I am the happy, busy mommy of a toddler, wife of a sweetheart, part-time nurse, CM consultant, CTMH consultant, student with a full-time load and working on an online playgroup. And I love it! By the way since Aiden looks like this right now:
I’M GOING TO STUDY!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
 

Bowlegged much? September 25, 2008

Filed under: Uncategorized — christycross77 @ 8:42 pm

Here’s my little toot in all his bow-legged glory! He’s proud of the John Deere boots! Lucky for us he should grow out of the bow-leggedness in time to become an awesome athelete and future Dallas Cowboy….or fan anyways!

 

Whatever happened to backbone? September 24, 2008

Filed under: Uncategorized — christycross77 @ 4:28 pm

…seriously. Something is bugging me. Why is it that people can not or will not show a little backbone these days? Stand up for themselves, what they believe in, what they like/dislike. It annoys me to no end. I get so tired of puppet responses, me too-mentality and lack of an opinion/thought of your own. If you agree, fine! If not, SAY SO! and the people that you are trying to impress…..they are not really your friends if they don’t like you for YOU.