The word is...

Our appointment today went. That's it, it went. It was with a developmental pediatrician. She is phenomenal. We didn't walk out knowing more, but with two more test scheduled and the advice to do surgery on her leg as soon as possible.
Soooooooo....we now have until April 5 to raise 10,000 more dollars. We were planning an actual event, that will not be happening at this point. So we need help getting the word out.
And as far as insurance goes I'll do my best to break it down. When the surgery was considered elective in the beginning we decided to go with the surgeon we wanted because he was the best, and it wasn't going to be covered either way. And now, as a result of the rapid growth and high risk of malignancy we are sticking with the best, therefore it still won't be covered. And because it's out of state the hospital won't be covered either.
I am not outraged by this. I am mostly grateful that she has insurance that has covered everything else thus far. Fighting with them would just mean pushing the surgery back and that's not an option.
If you could blog, put her widget on your blog, or post her fundraiser on facebook/twitter we would be extremely grateful. (You can feel free to donate as well, but right now it feels like getting the word out will help that).

Thanks for reading my crazy rantings. :)

Go here to donate, or to get the address to repost.

Oh my goodness!

First of all, NOBODY has entered to win anything. Seriously, you don't like free things sent to your home? You don't have to try to act normal when you see the UPS man pull up even though you already know what he's bringing you? PLEASE enter the giveaway. It's not so hard to do! Go here and leave me a comment or five so you too can win.

And now back to the title. Oh my goodness. I feel like some people out there in the 'I follow your blog' land must think we are making things up. Every few weeks I have to tell you about some crazy event that happened generally involving our daughter and her crazy medical shenanigans. But they are all real. I haven't even changed any names to protect the innocent. And I have yet another story for you.
Friday night I gave Abigail a bath. This never happens. She gets bathed regularly, but it has (for some unknown reason) been a Papa thing for the last year or so. I sit on the couch and play on facebook and listen to the giggles and squeals. I occasionally peak in on them to see what could possibly be that funny.
I have digressed. Anyway, I gave her a bath and put lotion on her and got her ready for bed. Whenever I put lotion on her I always rub the area where her tumor is for a little longer than normal to see if I can feel any changes. I know that it has grown over the last few months, but still nothing too crazy. I did just this on Friday, put Abigail to bed and went on with an awesome girls night while my husband worked hard somewhere doing something.
The next morning was a normal Saturday morning. Around 10:15 I got the lotion out and was getting Abigail dressed. When I took her pajamas off I could visibly see her tumor in her leg. I have always been able to feel it, but it has never been 'noticeable' unless you really know what you are looking for, but this was a disturbing amount of growth that had occurred between 7 p.m. one night and 10 a.m. the next morning.
I called Jason over to look at it just to be certain I wasn't overreacting. Nope. He said it looked 3-4 times bigger than it had the day before. I called to leave a message for the neurologist on call. I felt so much better when the woman who took the message asked me to describe what was going on and then responded with 'Oh my gosh!'
Got the call back and discussed for a few minutes before deciding she should be seen. So Abigail and Mama loaded up in the car (Papa had to work, he's had really weird hours of late) and drove to Indy. We decided that since it was a specific NF issue, and none of the E.R. staff we have had locally have been very familiar with it, that it would be well worth the trip.
So a few hours in the E.R., confusion over some things, and finally a page to HER neurologist later we have....no answers! Okay, we have three possibilities really and are trying to figure out what to do from here. The first possibility (and the one they are treating her for right now) is an infection in the tumor. Although it's rare it can happen I guess. So she is on an intense round of antibiotics. And while it was red and warm yesterday (a sign of infection) it is not today. However the size of it has not gone down. The other two possibilities are that it really is growing that crazy fast. And that it is growing that crazy fast do to malignant changes in it.
We are still trying to decide how we want to proceed. So once again we could use some prayers for decision making, Abigail's leg, and perhaps some extra grace to navigate what lies ahead. It is hard not knowing what is best, and where to go from here, but also knowing that we have a small being counting on us to figure things out.

Taking a sabbath day's rest,
read

Another Giveaway!

All right as you may already know my friend Jill over at Jillian Raye designs has an awesome ring she is selling, with proceeds going to Abigail's surgery fund. I know she has gotten some orders. I received one of these cute rings, and I got to give one away! If you haven't ordered one yet you definitely should. It is a steal for only seven dollars, and it help out the cute kid pictured above.

After this I received an e-mail from an awesome friend who sells thirtyone items. If you have never seen them you should check them out! They are Really cute. I'm thinking I may have to use some Christmas money to get myself something. ;) Anyway she is hosting a party and if you order through it part of the proceeds will go to Abigail's surgery fund. Just click on the words above that say 'hosting a party,' go to the right hand side of the page and click on 'my events' and it will come up with am event titled 'Abigail's fundraiser. Click on the 'shop now' link and anything you purchase through this will help to benefit Abigail's surgery.

Lots of rice bags.

A big one and Abigail's little one (she can make either size).

And lastly (as well as the giveaway part) we have another amazing friend (do you see the theme in our life with friends) who makes rice bags. They are material bags filled with rice (with a removable and washable outside cover) that you heat for a few minutes in the microwave, or keep in the freezer. They are great for neck pain (I have one on my neck as I type), cramps, kids boo-boos, and we use a frozen one to help with Abigail's tumor itchies. Our friend sells them for $10 (plus $6 shipping in the U.S) and is giving all of the money to Abigail's surgery fund! She has also donated one for me to giveaway to some lucky and awesome reader!

The very one someone will win!!!

So you have until next Saturday (whenever I get around to it during the day) to do the following to enter (leave a separate comment for each one):

1.Link to this giveaway on your blog or facebook and then tell me you did.

2.Tell me something about one of your awesome friends.

3.Go to http://www.ctf.org/ and tell me something you learned (or you could cheat by going to the what is neurofibromatosis link at the top).

4.Tell me how long you have been reading my blog (this one is for all of those lurkers I know exist and never leave comments).

5.E-mail me your favorite recipe and leave a comment with the name of it (because I'm tired of our rotation).

On Saturday I will go to random.org and pick a winner. If you don't win, or just want to buy one anyway (because they are awesome) you can send me an e-mail at atohelet@gmail.com and I will get you in touch with our friend Susan.

Loving getting to give things away,

Funny girl.

(In her Purdue cheerleading outfit, getting ready to 'watchupudue' with Papa.)

Last night it was getting close to bedtime and I said what I always say to Abigail, 'You know what we need to do?' I usually follow it up with 'pick up toys.' But I decided to steal a few moments with a little girl who was getting sleepy. So I followed with, 'We need to snuggle.'

She put her thumb in her mouth and laid against my chest and quietly gave me a mmmmhmmmm. I then went through my guess what game for a few minutes with her. It goes something like this:

Mama, 'Guess what? Mama loves you.' (Abigail giggles a little). 'Guess what else? Mama thinks you're beautiful.' (Abigail sits up and looks at me). 'Guess what else? Papa loves you.' I go on and on through people that love her and things I like about her until she responds with this.

Abigail, 'Geuss whayelse? I lub Mamal. And guess whaelse? I lob Gwandpa.' ALWAYS it's grandma and grandpa. Never is it Mama. But it still makes me smile every time.

As I was holding her last night and we were giggling together It was another one of those moments where I could feel time slipping through my fingers. I knew the day would come when she wouldn't say yes to me saying we need to snuggle. So I savored it, and stored it away for when the day comes that I needed that memory.

Lately, Abigail seems to be doing new big girl things by the day. She can now take herself potty ('Mama goyout pwease.') She can put her coat on by herself. She is starting to put her shirts and pants on (mostly) by herself. She can get her socks on by herself. It feels like all of these things are exciting and sorrowful all at the same time. And so I rejoice with her at all the things she is capable of, and mourn my baby growing up so quickly.

At the exact same time though I can't help but be both proud and in awe of how smart she is. I listen to her count, identify letters and tell me the sounds they make, identify numbers, sing along to songs, say Bible verses, and so many other things and am dumbfounded at her memory and intelligence.

I also am blown away by her level of creativity. I know all kids pretend, and that, she does. She mimics whatever her Papa or I are doing all the way from cooking to how she takes care of her babies.

But my very favorite new thing she has acquired (we have no idea where they came from) are her four friends pig, hippo, elephant, and lion. They are imaginary. They go most places with us. Papa had to run upstairs last night to get them before we left. They need their seat belts on. They join us while we eat. I have always been sort of fascinated by children who have imaginary friends. How do they come up with them? Who gave them the idea to make up someone to play with? I don't have answers to those questions, but far be it for me to crush a little girls imagination. So I put lion in my pocket if she asks me to. And sure I look silly buckling an empty seat belt, but just because I don't see her friends doesn't mean they aren't there.

(Playing dress up.)

Each new day brings about loads of fun and laughter (along with frustrations sometimes) that make being Abigail's parent the best job in the world.

Enjoying our funny girl,

...and a win!

So I hope you all enjoyed the post by my handsome and eloquent speaking husband. He has great things to say most of the time...it's just getting him to talk that's the hard part.

I'll start with the journey to Indy last night. Like most larger cities Indy has a loop around it. I was on it last night on my way to our friend's house to stay the night when I started hearing a funny noise. I wondered for about half a second what that noise is before my tire blew. I pulled over to the side of the road trying to figure out exactly how to play out the next step.

We don't have a cell phone. I'm not close enough to an exit to either drive on the shoulder or walk with Abigail. And it's dark. I know how to change a tire but am feeling less than confident in that ability.

I decided to get out and begin the process in hopes that a nice police officer would happen along and at very least stop to help me feel safer as the trucks made the car shake while they passed. I tried to push the visions our of my head of being hit by another car and dying while my daughter sat in her car seat alone not knowing what was going on.

Forty five minutes later I felt pretty awesome as I got back in the car and drove the rest of the way to our friend's house. I was a little shocked that in the 45 minutes it took me to change the tire not a single police officer stopped to make sure everything was okay. None the less everything was back under control.

We hung out with our friend a little and went to bed to awaken early. And as always one of the first things Abigail said was 'hungwy Mama.' And she continued to say it for the next two hours until they put her under for the MRI.

I was doing much better today than I ever have for this procedure. I actually slept in the waiting room instead of fretting about whether she was doing okay and what they would find. We went and ate breakfast afterwards and drove home (very slowly due to the spare tire) for a pretty normal afternoon.

When Jason got home I had him call and attempt to get the results even though same day might be a little much to ask. But a little after five the phone rang and it was our doctor's office. I made Jason answer it because I wasn't sure I would hold it together if the words 'tumor' and 'neck' were made in reference to my daughter.

Turns out it is a pretty enlarged lymph node. We aren't sure why it's enlarged, and it needs some further monitoring. However, when you spend a week wondering if things are headed in the worst possible direction swollen lymph nodes seem completely doable.

So we are rejoicing. This has been by far the most fearful I have ever been about Abigail's NF and what her future looks like. It brought about some great conversations between Jason and I. It, as usual, left me in the place where all I can do is put my hope in the One who breathes life into my little bug's body.

So if you have a few minutes make sure you do a little dance at your house for the good news we received! And I promise you that my next post will be full of pictures or videos of the little girl we love!

Rejoicing,

Where to begin...?

I've never written a blog before, so bear with me. Andrea has asked me to put my thoughts out here on the inter-highway. I've been a little resistant, maybe because I'm SOOOO introverted and guarded with my emotions. Nevertheless, I will do this for her...so she doesn't feel alone. I know it means a ton to her when others who follow this blog understand where she's coming from, but that can only take her so far. We talk often, but sometimes she has to pull teeth to get me to open up. So, I have shared more with her as of late, but not with too many outside of our home. So, here goes....

I love my daughter. I love the way she makes our family more complete than before she arrived. I wasn't sure what to expect when in the hospital waiting for her to be born, but from the moment I saw her (not breathing and all...) she had captivated me. She has always kindof been a papa's girl. I like that. A LOT. I guess that may come from spending all of her days with mama at hand, and just a few hours with me in the evenings, but I'll take it. I love the way she squeals when I get home, like she's just unwrapped the greatest gift on Earth. The irony though, is that Abigail is that gift for us.

Our days are so full of joy, laughter, song and dance. Abigail has taught us how to love and to be loved. I've never met anyone with such abounding love to give so freely as she does...always expecting nothing in return. Don't get me wrong though, our days aren't all full of rainbows and roses. Some of them are ROUGH! I tend to let things roll off and keep going (or I like to think so). It's probably more a case that I just absorb them and have become very adept at cramming it way down inside. But this blog, or the story at large, isn't really about me...or Abigail. It's about Jesus Christ.

I never question His goodness. EVER. I know that this world is screwed up and that terrible things happen. Our daughter has this NF that has created so many issues from day one, both great and small. Abigail now has two tumors (MRI at 6:30 tomorrow morning to look into the most recent one, which happens to be in her neck). Insurance won't cover surgery. It's expensive. All that aside, my mind does go to a place of fear...

Fear that this is the beginning of the end. That Abigail will die VERY EARLY. That at her age and having two plexis does not bode well statistically. That there will come a day when Andrea and I wake up to an empty bedroom across the hall. That I will come home from work and not be greeted by an overjoyed little girl who can't wait to read "dopted you" or to "watch-uh pudue". That I will not have an eager partner to play her "itar" while I play my guitar. That I will lose the capacity to laugh and to love with such a richness that I've never known before. That it will all be painful for her.

But even in these moments, I know that Jesus IS GOOD. That He hasn't changed, and that her affliction is not a result of our sin or hers or even her birth mom's. I know that no matter what happens, He will be glorified by her life and death, regardless of how brief or long, how painful or pleasant. I will continue to place my hope in Him. If I can't do that, what else is there?? I sure don't want to be placing all my trust and hope in another man, who's just as messed up as I am. If I can't make Abigail all better, then neither can they. There is only One who can set her free (and isn't bound by statistics), and one day He will do just that. I don't know if that means He will bring healing in this life, or as she is welcomed Home.

My heart is heavy writing this. Partially because I try not to think much about all this if I can (Abigail makes this easier to do, as she knows and acts as though nothing is abnormal about her life), and part is because tonight I am alone. Andrea and Abigail are on their way to Indy to stay with a friend, so they'll be closer for the early morning MRI. But, unfortunately, it gives me a small glimpse of what it would be like without her...very quiet. And EMPTY.

I know we looked crazy while we literally waited on God to bring us a baby. We waited for three years, but look what He had in store! I hate to think about Abigail's mortality and how difficult it would be to move forward without her, but I wouldn't trade any of the time we've had with her to go back and do it over differently. These have been by far the BEST, most rewarding, and certainly the most refreshing 2 1/2 years of my life. I look forward to what the Lord has in store for years to come. I understand that some of you may think we look crazy for not freaking out and for trusting God, etc., especially if you may not love the Lord. But the way I see it, I hope you ALL would think we were crazy if we were NOT able to fully trust and hope in Him alone.

So, as we wait for the MRI and then results, please continue lifting us up in prayer. That the Lord would be a constant companion for Andrea in the moments where I am lacking. That He would continue to pour out His Spirit on Abigail, so she may continue to light up the world from the ground up. That we would be quick to recognize Christ's true nature manifest through our little one. That we would be more intentional about sharing Christ with Abigail, as we don't know the day or hour of her departure. That above all else, we would have the sweet praise of His name on our lips from the time we wake till the time we sleep.


Abigail's loving papa, overwhelmed by his loving Papa...

Come to Me, you who are weary and heavy laden.

I'm not sure where to begin this post. I had planned on writing tonight about some things Abigail has said and done lately that have left us in laughing heaps on the floor. The girl is hilarious. It's just that the days events are threatening to sweep me deep under in sorrow.

As a result of Abigail's NF as well as frequent weight fluctuations, we still do 'well checks' every six months. And tomorrow Abigail will be 2-1/2. So today we went in for a well check. I knew that her weight was down again as a result of being sick last month. I knew we would talk about her upcoming surgery. I planned on mentioning the new description of my eyebrow hurts mama' because it sounds like a headache description. But really there wasn't anything big on the radar for the day.

But here I sit, once again having the wind knocked out of me by an unexpected blow. Abigail had an ultrasound of her neck today. The doctor found a 'possible enlarged lymph node' which didn't really scare me at all. I wasn't sure why we were doing an ultrasound, but figured better safe than sorry.

And at 5:08 when the nurse called I realized that the doctor probably was trying not to alarm me because it was possible that it was an enlarged lymph node. But in the end it turned out to be an 'abnormal mass around 1.5 cm' in her neck. We will get a phone call tomorrow with the date and time of our daughter's next MRI.

There are hundreds of thoughts bouncing around my head. Perhaps it's because I know too much about NF, and not enough about what is in my daughter's neck. But truth be told a neck tumor is a hell of a lot scarier, and a much bigger deal than a leg tumor. Sure, I don't want my daughter's ability to walk and dance taken away, but more than that, I don't want her to be ability to breathe taken away.

I called a few people to ask for prayer and to let them know before we made it public on the world wide web. And my friend said something that truly resounded with where I have been the last few weeks. I am just overwhelmed and extremely tired. Not just physically, but the kind of tired that makes your soul long for the day that there will be no more pain, no more sorrow, and every tear will be wiped away.

My friend told me this vision she had on Sunday at church, of when the men stood next to Moses and held up his arms because he was too tired, and if he let them fall the Israelites would lose the war. She said she immediately looked up and saw me raising my hands in praise and felt like they needed held up. It is the best description of how I feel. It's not that I don't want to raise my hands, it's just that my arms are getting tired. Really tired. And I need a few people around me to help me keep them raised.

If you could hold us up in prayer right now we would greatly appreciate it. There are lots more things I could say, but it is all still pure speculation.

In need of the kind of rest that only my God can give,