Monday, January 26, 2009

OK.. now to be "serious"

Alan is sick! He's been fighting the CMV for awhile. He probably contracted it in December sometime from his heart donor. Its a virus, somewhat related to chicken pox, that is not symptomatic in healthy people - its only a problem in immune suppressed patients and pregnant women.

His tummy is sick - he's having a hard time keeping anything down. And his breathing is heavy from time to time. It looks like he'll need a dose of IVIG probably friday, which is an infusion to help boost immunity. He'll have to skip his feeding assesment that we were really looking forward to.

Poor little guy is so tired. He just wants to sleep.

I guess I'll play today

Not me! Monday!

Welcome to Not Me! Monday! This blog carnival was created by MckMama. You can head over to her blog to read what she and everyone else have not been doing this week.

I am NOT bloggging to avoid getting housework done.

I did NOT need Facebook to remind me that my husband's birthday is coming up.

I did NOT get 6 takers within 24 hours on my free box spring ad, even though I clearly stated it was torn and squeaks. And I didn't roll my eyes when someone asked if they could have pix before deciding.
People will take free anything.

I do NOT feel relieved at seeing symptoms that my son is sick, just because it proves that his other symptoms don't indicate heart failure.

We did NOT have to call radiology to see whether a barium poop diaper would be safe to put in the washing machine.

Saturday, January 24, 2009


My days are SO busy. For one thing, Mommy always needs my help on her homework.

On my own I've been doing a lot of research.

I'm reading up on some species of elephant. Its fascinating stuff.

In my free time I keep myself sharp with Suduko puzzles.

Ah... what a life!

The Kangaroo Joey

It seriously rocks our world. So at the beginning of the year we had an insurance switch and had to switch home care companies for feeding supplies. We were a little nervous because we were switching to a company we have not been so pleased with another type of supply they provide us. Well that was until the day the pump arrived:

OMG.. look how small. An all digital display. A pleasant quiet pumping sound. Adjustable volume to the alarms.
Auto Prime function which means no more quick dumping formula in the bag and clamping it right before it gets to the end of the tube. No more reservoir that gets overfilled and makes it not work. And no more annoying error message every time our busy body boy decides it's fun to knock the pump over by pulling on the tubing.

Awww... just looking at our new one next to the old crappy one. Can't wait to give that one back.

Yep.. this will do.


The trimmer finally came out to take its stand against the cyclo fuzz.

Took care of those baby sideburns:

And trimmed off that rattail in the back

And there's our handsome boy, doing what else?? Watching his Saturday morning cartoons of course.

Monday, January 12, 2009

Not Me! Monday

OK.. haven't done this one in awhile. But here goes. These are all the things I have NOT done lately.

My husband did NOT purchase a dozen grocery store donuts yesterday. And I did not do my fair share in helping to eat them.

I have not spent the last two days off doing absolutely nothing.

I have not restarted my coffee addiction after being clean for 2 months.

I do not let our toddler lie around watching cartoons all day just because he is sick.

So, seeing as how one of his motor skill goals is "Uses mobility skills to go after a toy during playtime", we did not get excited to see Alan use a roll/ pivot movement to get himself into position to reach an object the other day. And even if he did, this object that he grabbed was certainly NOT a bag full of ammo that his father had just purchased.

I do not ever feel a twinge of jealousy when I see photos and stories of "normal kids" getting to do fun things like eat on their own and crawl around getting into trouble.

I did NOT just publicly share my religious disillusionment on my blog.

I am not anxiously waiting for Season 4 Disc 4 of Battlestar Galactica and for Season 4.5 on January 16. That would make me an uber geek.

See the Not Me! button on the left to find where Not Me! all got started.

Sunday, January 11, 2009

Life is Not Beautiful

"Isn't he a miracle?"

Well, no. I’m not okay with chalking up my son’s life to a religious talking point. I do not believe it is a miracle that he was born with a heart doomed for failure. That he suffered for months. It is not a miracle that an O+ child somewhere who would become Alan’s donor lost his/ her life way too early. It is not a miracle that while Alan successfully made it off ECMO support after his transplant while the other half of children in a similar situation do not. It is not a miracle that children die every day from diseases that are not their fault. It is not a miracle that millions die every year from malnutrition while we have plenty.

I don’t dismiss a divine worldview of existence. That is probably what I lean toward being true (although a chaotic and random universe sometimes seems to better match my observations.) I just do not understand how we can attribute only the good events to providence and not the bad. Every lucky break is not because enough people were praying. I don’t think every travesty that occurs is justified because it brings glory to the lord. I don’t think genocide is ever okay and I don’t think I can really say that I respect the god of the Old Testament.

I do not think that everything that happens has some kind of redeeming value. If we are going to acknowledge the miracles that we see, then it is only fair to recognize the non-miracles as well. They happen every day too.


on a day long ago when my buddy Alan liked food. He drank his bottle. He explored new and different tastes and textures and enjoyed the experience.

That image just looks nothing like today. Terror strikes when he sees a bottle or sippy cup get too close. He'll tolerate a few bites of food but anything with an unusual texture and he'll gag it up.
At this point I'm so beyond frustrated. I try all the suggestions and get nowhere.
And I'm so sick of the advice referencing terms that have no relevance on our life, like "dinner time" or "bath time."

It looks like we'll probably go through with getting a g-tube in sometime soon. And we'll be seeing the Eating Disorder clinic at our Children's hospital. That's where I'm putting all my hope at the moment because I don't know what else to do. I think at this point its clearly a behavioral/ emotional issue that we probably continue to contribute too. All the trauma he's experienced probably doesn't help either - poor kid.

He's being tough. He's making progress growing and developing - getting stronger, learning play and do some things on his own. It just feels so agonizingly slow.

Here's my cutie today: I'm so proud of him - I just feel so bad that he has to work so hard to have a normal life

Christmas photos

Checking out the presents ahead of time.

I bet I can guess what's in here!
Christmas Eve - first present.

Checking out the Christmas Day santa stocking spoils.

Christmas Night.. "If I have to open one more present!! And if you guys make me try it on..GRRR"