another twist to the tale

One might be surprised to find out that my plan to be here at home with Lola has changed. My life is so plain and boring and well, predictable. You'd never think by looking at me or the past few years that one minute I would be doing and saying one thing, and the next, those same things would become lies.

Monday I start back at work. It was a bit out of my hands...but probably for the better. I'm not an at home kind of gal. I don't know that I am strong enough...those I know who stay at home with kids...they must be made of steel. Maybe it's because I've never done it for more than a few weeks and never got to get "in the groove" of what SAHM do. Or maybe it's because I don't actually like being by myself all that much.

Whatever the reason...I am full of crazed emotions today with the thought of leaving Lola. Luckily my mom has gone above and beyond...AGAIN...and offered to be with Lola in the morning and then I can take her to daycare in the afternoon. Talk about some serious relief being felt at the Willford Estate.

I would love to have the option to stay home. But...we are a two income home. With a mountain of medical bills pouring in as I type. And more to come...as there doestn' look to be any answer coming our way soon what is exactly wrong with the little Child Who Screams.

And yes...although she has made some VAST improvements in the areas of screaming...she still lets me know I am not allowed to be very far away.

my new day

Yesterday I got a blessing from a most unexpected place. I stopped by work for a few minutes to let everyone see how was Lola is doing and to talk with my boss about making arrangements on a schedule so I can be with Lola as much as possible.

My fear all along has been leaving Lola and not being able to take care of her the way I feel should be done. My other fear is I have NEVER wanted to be a stay at home mom...it just has never fit my personality. So I have been torn between work and family.

I had stopped at the grocery store with Lola and while checking out, the cashier inquired as to what happened to her little arm. I realized she meant the covering over her Pic Line and I sat there for a few seconds trying to think of what to say. Finally I said...she was in the hospital and she has an IV line that has to stay in for future visits. The girls jaw dropped...is...is she gonna be ok?

I walked out with tears in my eyes as it FINALLY slammed me full force that this isn't going away. This isn't the flu or a cold or even strep where she can take medicine and be over it. This is going to be something that for the rest of her life impacts her.

And I was no longer torn. I knew that my companty telling me to stay home with Lola until we know what is going on, to go into work at night for a few hours when Jason can be with her, to comfort her and help her grow strong...are exactly what I need. I need to be putting Lola first. And I need to be here with her.

I only worry I am gonna start to enjoy this a little bit too much.

the fight

I've been trying very hard to keep Lola's CarePage all about positivity and all that I hope will give her and everyone else hope. But I have to be honest...there comes a point where I just feel like breaking down. And since this is the place I rant and rave...here ya go.

I'm exhausted...not so much from the lack of sleep anymore, but more from the fact that I want to know what the hell almost killed my baby. I want to stop feeling like I am being fooled with her insane good mood and willingness to start to try the things she had stopped trying. I hate thinking, was that all a dream, and then seeing her, with her poor arm all bandaged up with the creepiest looking IV kinda thing poking out of her skin, and remembering...this is bad.

I keep being told...you don't know what it is...it could be nothing. And I think we'd all love for it to go that way...so i'll cross my fingers and toes and hope for just that.

A few months back while up in Logan, visiting with friends who had come into town...Jason and I started talking about what our life is like and where it's headed. We had just started to look for a house to buy, I was planning on going back to school...we had so much going on. And I told him...we have to get ready. I've known for a long time that something was going to happen with Lola that was going to test us and push us and almost kill us...something that would make us need to be the strongest couple known. We need to be ready.

Jason brought up that conversation in the hospital. And sure enough...that's where we are. He said...we have become "those people". The ones you look at and think...what would I do if I was in their shoes? The ones people feel bad for and want to do something for...but what honestly can you do more than send balloons and meals and love? Our helplessness is magnified and it's painful to see.

I have to remind myself...we are more than that. We are those people who's daughter is kicking ass and fighting. Fighting harder than most possibly could. She's got some incredible angels who I feel standing next to us as I hold her in my arms and just stare at her in wonder. All the fight and strength from all those who love her, is helping her. I feel bad...that little tiny girl is way tougher than I am. I have to remind myself...she's fighting...she's working to get stronger...I need to do the same.

And I know for a fact...that fight will never leave her beautiful eyes.

Lola update

So...just to let everyone know what is going on...and since I am working off the hospitals computer and have no access to pictures or real way to keep this current yet...here's a general update.

Last Wednesday nite we brought Lola to Primary Children's Hospital in Salt Lake City after having watched her go from a small fever and cold symptoms to an intense difficulty with breathing and total lethargy. Upon walking into the waiting room of the ER we were rushed to the resuscitation room where they immediately found Lola's red blood cell count or hematocrit level was at a 4.2%. Normally...she should have been at a 35-40%. Within minutes, 8-10 doctors and nurses were swarming around her trying to get her temperature up which had also dropped to a very dangerous level and oxygen as she was almost not breathing. She was given a Trauma Blood Transfusion and tests were sent out to see what else was going on in her little body.

She was moved into the Pediatric Intensive Care Unit where we have spent the 2 1/2 days getting a total of 8 blood transfusions, a plasma transfusion, Echo (ultrasounds) of her heart, and medication and after medication to get her stabilized.

Last nite, her stats were stable enough to move her to unit where she her heart is constantly monitored and where they feel she can rest and get her strength back.

So far we have been unable to run any tests, as she has no spare blood to give out. But what the have been able to determine, her body is not producing red blood cells or she has something that is destroying them. Her heart has been fighting this lack of ability to send oxygen through the body by pumping as fast as possible, causing it to become dangerously enlarged. Over the past few days she suffered from heart failure, kidney failure and liver failure...all while her body was trying to relax from the strain it's been put through and start working with new blood and blood cells that can carry oxygen.

Her blood count is up so now the worry is her heart and how it is reacting. Once that is stabilized...the doctors feel we will be able to monitor her while we begin searching for the cause of all this.

Tomorrow, if all goes as scheduled, Lola will be getting a bone marrow aspiration (biopsy) that in the next week or two will start to give us some answers. It will tell us a few things...whether or not this is a disease that is preventing her body from making red blood cells...or a disease that is killing them. And the big scary thing...will tell us if she has Leukemia or not. This happens to be quite a ways down the list of possiblities...but it's still there.

Lola has been up and playing and smiling today. She got to eat some food!! yeah!! and even read a few books. The doctors and nurses here have completely fallen in love with her and are just dying to get to know the baby was has lived through such a low blood count and is up and moving so quickly after. At just 12 1/2 months...the little girl is already famous.

I have a carepages set up for her so you can all keep track of her progress and leave her love notes...just send me an email and I'll send you the invite to find her.

thank you for all your love and prayers.

Lola....she's thrown us for another loop and scaring us to death.

For updates feel free to go to www.carepages.org/lolawillford

I will be updating that with her standings.

can't help myself

Up until recently, I was a bit undecided as to which side to lean on the political party. Each party having gone against the grain and pushed limits...definitely made it hard for me to choose.

Until this week. I have to say, as a woman, I find Palin to be a total joke. She is making a mockery of the presidential election and there is no way I want a woman like that to be a step away from being president.

And this article just made me giggle. Enjoy.

moment of silence

So...let me start off by saying...I'm going to be ok. I realized I have to be. I realized my drama is nothing compared to the fact that I have a brother who is nothing short of an idiot. And he's on my shit-list. He got this crazy notion it would be fun to drive his motorcycle into a cow. A COW. and fly through the air and get stabbed in the neck by something. And then be able to stand up and pick up the bike and get himself to a hospital. That man has more lives than an alley cat.

So...the wake up call that was hearing my mother say "your brother was in a motorcycle accident" has made me realize that my emotional trauma and inability to function normally needs to be dealt with. Cause this weekend I could have lost my brother. And I'm sorta pissed about that.

I'm sitting here holding in the tears thinking about what this weekend consisted of and just thought I would share with you what it is that is making Rachel crazy.

Thursday we almost didn't get our house. Friday morning we finally were told we got the house. Friday afternoon we were told we got the house but might not get everything we were promised. Friday late afternoon I got the keys and everything we had asked for. Saturday we loaded our halfway packed house (and that much was done all due to my own personal angel). We spent the entire day moving into a house that we are still in shock is ours. Sunday my daughter turned One. Sunday morning we cleaned the duplex to never return to it again. Sunday night Lola screamed everytime I walked away. Sunday night I got a phone call that my brother had been in a motorcycle accident and was headed in for surgery. Monday Jason went back to work while my mom came over and I unpacked. Tuesday I am back at work and headed to school in an hour.

I have to admit I have been feeling a bit overwhelmed but it's time I turn that frown upside down and start sharing the excitement and love that I have in my life. Right after I fly to Arizona and kick my brother's ass.

ps...i'll find my camera soon.