Thursday, December 30, 2010

Where have I been?!?!

I'm sorry I've been so absent around here lately. To be honest, I've just been completely run-down and not doing so great. I've been battling this weird GI issue on and off for about 8 months and it has finally come to head over the last month. My energy, motivation, and passion has waned with my health.

In the midst of all of this, Ava had her nutritional panel which showed a dangerously low iron level...slight chaos has ensued.

Then, to top it all off, Mike ended up being REALLY sick...I mean REALLY sick...over Christmas. So I cancelled the festivities. Within a few days, I got it too. Fever (that has finally seemed to subside after 5 days), chills, aches, skin pain, and sleepless nights due to hours upon hours of coughing, and just exhaustion...

So I still have alot to say, alot to tell, alot to share. I've just been trying to get through each day without the medics having to drag my limp and lifeless body up the stairs (oh how I loathe a two-story house sometimes!)

Thankfully, my parents took Zoe home with them on Monday. I was pretty much in bed from Sunday afternoon until today. Mike spent half a day on Monday working and came home completely wiped out. So we've both been able to just hang out and rest.

Sweet little Ava just hung out and watched movies in bed with me. We threw a tube feeding her direction now and then (not easy when you're shivering and riddled with a fever) and changed a diaper here and there, but she's pretty low maintenance. She just likes to be with us.

On Tuesday, I loaded up on Tylenol to get my fever down and then had to go get some brewer's yeast for Ava's formula. I also decided to stop by the park so Ava could run around and let out some energy. I told her that I was sick and she needed to play while Mommy sat on the bench. "OK" she muttered as she ran off.

So I sat there with Apollo, feeling so-so and thinking, "Great, maybe this is passing and I'm going to be fine." Then...the shivering started, the body pain started. By the time we got to the car, my teeth were chattering. 

We got home and I had a hard time walking into the house I was shivering so hard. I could barely keep the thermometer in my mouth I was chattering so bad. Sure enough, my temp was climbing.

So I played this cat and mouse game with Tylenol and temperatures for 5 days. I seem to be on the downhill run of this thing. I just took some codeine in hopes of having a coughless night tonight (crossing fingers) and thinking that tomorrow I'm going to feel better.

I will resume my blog activities shortly. I want to add an e-mail subscription option and some pictures and videos. I will also tell you more about Ava's vitamin levels and what's been going on with that as well as my GI issues.

In the meantime...enjoy!

Frosting...if only she'd eat it!

Love Disneyland at Christmas!

That haggard/exhausted/disheveled look is the new chic for mommys everywhere.

Disneyland ferris wheel in mid-December...IN SUN DRESSES!

90 degrees at Disneyland...too hot and crowded...let's go to the pool.

CUPCAKES! Gluten-free of course.

Just being silly.

Thursday, December 2, 2010


It's really strange lately. I feel like this small community of tubie moms are coming together and really trying to help each other out. Lots of blogs have started, awareness sites have been launched, and I'm starting to see some familiar names pop-up on various sites. We're a small group, but we're strong! 

Most of these families have stories that far exceed ours in severity. Many of these children have life-long disabilities and conditions that require, literally, around the clock constant care. I'm also finding that most of these tubie kids have tubes as a result of their primary condition, with the tubes put in as a result of not being ABLE to eat.

But I think what strikes me the most is how STRONG these moms are. I like to think I'm strong and determined, but I'm not sure I would be in some of these more dire situations. 

I CAN say that all of us moms are tired and weary. We trudge on knowing that tomorrow probably isn't going to be much better or fact, for many of us, we know tomorrow might actually be worse. We go to bed exhausted knowing that it will all still be there for us to deal with in the morning. For some moms (I'm thankfully not in this group), the care continues on hour after hour throughout the night as well. Year after year passes and the intensive care continues.

Every parent with a special needs child goes through what I like to call "mental gymnastics". It is a constant balancing act that our brains go through on a daily basis. Each mom's dialog is different. Mine goes something like this:

If I feed Ava 8 ounces now, I can do the next feeding at 1pm, but wait...that will interfere with nap, so...I could do a half feeding before nap and half after nap, but then I'm too close to the mid-afternoon feeding which messes up the before bed feeding and I can't put her down on a full stomach, I even have enough formula to make it through today? gotta make more, do I have enough fat in this blend? did I put in the multi-vitamin yesterday? I need another Omega-3 source, now an orange veggie, a green veggie, OK...more green veggies, is that too much spinach? more Vitamin A, skip the cod liver oil, did I oil my syringe, that tube doesn't look very clean, do I have enough formula while we're out? should I feed her now or wait until we get home? OK...I'll do it now so it can settle a little before nap...OH NO! please don't throw-up! 

For most parents, life eases-up on you as your children grow older. We raise them to be independent productive members of society. We know that they will leave one day and have a life beyond us. Get married, have families, excel in careers. But for some families, this will not be their reality. 

As far as Ava is concerned...we don't have any reason to believe she won't be in the "independent productive member of society" group. However, there is always the constant nagging feeling from not knowing what's "wrong" with her. Does she have some sort of a condition that is going to amplify? Will it be something that will have life-long consequences? We hope that her hunger drive will "wake-up" one day and we can all have a good laugh and some fun jokes about the "tubie years", but I'm not sure I really believe that will happen. I think that something is truly wrong with her, but because she is so young, I'm not sure we've seen the full impact of what it might be. 

At this point, only time will tell how this saga is going to turn out. In the meantime, we love this amazing little kid and it's hard to imagine her being "normal". 

It is what it is...and it's OK.