Smiley McSmilington

His smile is back.

We're working on bringing the appetite back with it.

Honesty

Just being honest.

This is what I looked like last night (minus the glasses and the bright red lipstick):

 And my sister got to hear the brunt of it, bless her little heart.

Things are looking up today.

For one thing, I finally slept.

For another, Owen ate some french fries today so that's good.

I'm about to put on my running shoes and go pound it out through the pavement.

Thank you so much for your encouraging comments and texts and emails.

Hope everyone is having a great weekend!

Life ain't always easy.

You know what sucks about chronic illness?

That word "chronic."

It means you may have a good spell for longer than you thought possible, but those nasty white blood cells that attack, inflame, and irritate? Those suckers come back.

We've been through several steroid treatments this week and nothing is working.

We started an antibiotic today to rule out possible infection.

But at the root of it, we're thinking the EE is back.

And that makes me sad.

Dude, I so don't like weeks like this:

Waiting to see what the antibiotic does.

Waiting on decisions from UNC.

Waiting to sleep again.

And I'm not gonna lie, we need more than sleep. 

We need rest. You know what I mean?

So I'm praying this verse with a vengeance this week. And I know God will be faithful. 

 "Come to me, all who labor and are heavy laden, and I will give you rest. Take my yoke upon you, and learn from me, for I am gentle and lowly in heart, and you will find rest for your souls."

-Matthew 11:28-29

Fig Newton Fiasco

Last year Owen turned 2 the day after we moved into our new home. And his "celebration" if we can even call it that left much to be desired. We had dinner at Moe's since my kitchen was in the midst of being painted and unpacked. His "cake" was made of fig newtons and icing. Wouldn't you love to see pictures of that? Me too. But I didn't even take my camera. As I said, lackluster......

So hopefully this year made up for that in some way. We still didn't have a huge party because Owen would not enjoy that, but we did have cake and presents and a camera. 

Here we are making icing on Saturday morning. The kids were super helpful. They bugged me constantly to lick the beaters and even spilled powdered sugar all over the counter and floor.

Owen LOVED his Spiderman cake......until it was time to eat it.

Todd gently persuaded him to try it and got him to eat it by trading off bites. I think it's safe to say that it wasn't his favorite thing in the world:

 

He may not have loved the cake, but he did LOVE this alarm clock.

That could be because it's the coolest alarm clock ever!

Thanks to our family and friends who came to help celebrate.

You guys rock and I think this year went a little better than the fig newton fiasco of 2011.

Little Angel

Saturday was a day full of celebration for our family. It was such a blessing to celebrate Owen's third birthday and reflect on how far he has come this year. I will post pictures of his birthday, but it feels weird to do that without first honoring the life of a sweet little girl who was buried that same day. I never met Claire, but her mother and I were close friends and running buddies in high school and I've followed her caring bridge page and joined an army of prayer warriors for this sweet little girl and her parents. Sometimes our prayers aren't answered in the way we desire and God called Claire home last week. Please please please pray for the Ratliff family as they continue down the difficult road that has been laid before them. They have been true examples of God's love and faith throughout this terrible journey. Even now, they march on through their grief and continue to raise support and awareness for a cure for cancer. They are an inspiration to many and my heart absolutely breaks for them.

There were many, many, many times (too many to count) before we walked to the starting line of a cross country race that Emily, myself, and five other girls would stand, hold hands, pray for strength in the coming race, and recite the second part of this verse. It only seems fitting that I pray this verse for them now.  May He give strength to them in their weariness. May He catch them when they stumble and fall, and most of all, may the days seem short until they too soar on wings like eagles and join their little girl in His kingdom.

Isaiah 40:18-31
"Do you not know? Have you not heard? The Lord is the everlasting God, the Creator of the ends of the earth. He will not grow tired or weary, and his understanding no one can fathom. He gives strength to the weary and increases the power of the weak. Even youths grow tired and weary, and young men stumble and fall; but those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint."

 

 

(Pic from Claire's caringbridge page.)

 

 

Phone Collage

Just playing with pics from my phone, Todd's phone, and my sister's phone.

Didn't know I could make a collage.

Kind of cool. 

Beats laundry, which is definitely what I should be doing right now.

Big things happening this weekend.

Somebody is turning 3.

I will be making my first wheat free, gluten free, dairy free, soy free, egg free, and peanut free cake ever.

Pretty sure it's going to taste like styrofoam with icing on top.

Wish me luck.

A Quick Update

We had the best appointments to date yesterday morning.

Owen saw my challenge of 27 pounds and nailed it. He was an ounce shy of 28 pounds!! 28! This placed him solidly in the 10th% height per weight, which is amazing. That is the first time he's hit the double digits percentile wise since he was about 12 months old. So for those of you math wizards, yes, that would be almost two full years.

There is some freedom we've been longing for that comes with being in the tenth percentile:

1. No more chin support and structured meals unless he refuses to self feed.

2. The doctors are comfortable enough to tinker with one of his meds by bringing the dosage down a little bit and also trying a cheaper brand. (Right now it costs us $400 every 6 weeks. Yowza.)

3. Our next appointment at UNC Children's is in two months. Yes, that said two m.o.n.t.h.s!! Woo to the Hoo! (I remember when we were making that drive multiple times a week not too long ago so this is beyond thrilling.)

4. At our next appointment, if he is still doing as well as right now, we will meet with the whole team and he will most likely graduate out of the Feeding Program.

5. Yes, there will be a party. Don't know where yet, but I'll keep ya posted. :)

He is still on a very restricted diet and still needs special formula, but nine months ago we were told by UNC that they were at the end of the road with Owen. Short of a feeding tube, they had done everything they could do and he still wasn't progressing like he should.

Yesterday we were told that we will most likely be done with intensive feeding therapy in two months.

That is nothing short of God hearing our pleas and blessing us beyond measure.

So thank you, prayer warriors (you know who you are), for coming alongside us and fighting with us and speaking on our behalf and challenging us to trust in Him in ALL circumstances.

He is faithful.

Trouble with a Capital T

I got in trouble yesterday. Big trouble. If I was in school, I have a feeling I would have been writing the sentence "I will not torture my child" on the board 150 times.

We have OT every Wednesday morning and Ms. Ashley came out to the lobby to get Owen and turned to me incredulously, "did you cut his hair?!"

Me (sensing her obvious disapproval but not quite understanding why): "Yes."

 "With clippers?!"

"Yes?"

 "Did he freak out?"

(Uh-oh. I thought about asking her to define "freaking out" but I was pretty sure covering his ears and  begging me to stop would fall under that definition..... What to do here?.....I know, I'll do the mature thing and blame Owen.)

"Yes, but he's the one who wanted me to cut it! He wanted to look like his brother."

"Well, how did you get him to sit still?"

"Ummmmmmm.....I may have pinned him down and cut it really short so it would be a long time before he needed another hair cut."

If looks could kill......I would be buried six feet under right now.

"Mrs. Fischer, next time you want to cut his hair please let me know. I have a whole booklet of tips that will make it much less traumatic for him or we can do it here together."

"Right. Okay. I will definitely do that. Sorry."

After they left for the therapy rooms, Isaac (who was home sick) turned to me and said: "Mommy? Did you just get in trouble?" Yup. Big trouble. Because once again, I don't know what the heck I'm doing. I try to look at the world through Owen's eyes and understand how it feels to him, but clearly sometimes I fail. And that was an epic fail.

You see, the minute the clippers touched his scalp, I knew he didn't like it but it was too late. I knew it was freaking him out so I handled it the same way I handle the things in my life that I don't like: I barreled through and got it over with as quickly as I could. I cut it a lot shorter than I wanted to so he wouldn't have to go through that again any time soon. I thought that was being sensitive to his needs. Apparently not. Apparently I should have researched and learned the best ways to make him comfortable during the hair cut. Or maybe we should just go for the shaggy look from here on out?

 

Sorry, sweet boy.

Mama's learning.

In other news, it's crunch time.

Tomorrow is hospital day. We will spend the morning at UNC with various doctors and nutritionists. We have allowed more self feeding the last six weeks and tomorrow is crunch time. If his weight is up, we can continue giving him more freedom with eating. If his weight is down or remains the same, we tighten the reins once again and go back to all structured meals.

Please please please pray for a weight gain.

I've been wanting to see 27 pounds for a long time!

As for Ms. Ashley?

I will not torture my child. I will not torture my child. I will not torture my child. I will not torture my child. I will not torture my child. I will not torture my child. I will not torture my child. I will not torture my child. I will not torture my child. I will not torture my child. I will not torture my child. I will not torture my child. I will not torture my child. I will not torture my child. I will not torture my child. I will not torture my child. I will not torture my child. I will not torture my child. I will not torture my child. I will not torture my child. I will not torture my child. I will not torture my child. I will not torture my child. I will not torture my child. I will not torture my child. I will not torture my child. I will not torture my child. I will not torture my child. I will not torture my child. I will not torture my child. I will not torture my child. I will not torture my child. I will not torture my child. I will not torture my child. I will not torture my child. I will not torture my child. I will not torture my child. I will not torture my child. I will not torture my child. I will not torture my child. I will not torture my child. I will not torture my child. I will not torture my child. I will not torture my child. I will not torture my child. I will not torture my child. I will not torture my child. I will not torture my child. I will not torture my child. I will not torture my child. I will not torture my child. I will not torture my child. I will not torture my child. I will not torture my child. I will not torture my child. I will not torture my child. I will not torture my child. I will not torture my child. I will not torture my child. I will not torture my child. I will not torture my child. I will not torture my child. I will not torture my child. I will not torture my child. I will not torture my child. I will not torture my child. I will not torture my child. I will not torture my child. I will not torture my child. I will not torture my child. I will not torture my child. I will not torture my child. I will not torture my child. I will not torture my child. I will not torture my child. I will not torture my child. I will not torture my child. I will not torture my child. I will not torture my child. I will not torture my child. I will not torture my child. I will not torture my child. I will not torture my child. I will not torture my child. I will not torture my child. I will not torture my child. I will not torture my child. I will not torture my child. I will not torture my child. I will not torture my child. I will not torture my child. I will not torture my child. I will not torture my child. I will not torture my child. I will not torture my child. I will not torture my child. I will not torture my child. I will not torture my child. I will not torture my child. I will not torture my child. I will not torture my child. I will not torture my child. I will not torture my child. I will not torture my child. I will not torture my child. I will not torture my child. I will not torture my child. I will not torture my child. I will not torture my child. I will not torture my child. I will not torture my child. I will not torture my child. I will not torture my child. I will not torture my child. I will not torture my child. I will not torture my child. I will not torture my child. I will not torture my child. I will not torture my child. I will not torture my child. I will not torture my child. I will not torture my child. I will not torture my child. I will not torture my child. I will not torture my child. I will not torture my child. I will not torture my child. I will not torture my child. I will not torture my child. I will not torture my child. I will not torture my child. I will not torture my child. I will not torture my child. I will not torture my child. I will not torture my child. I will not torture my child. I will not torture my child. I will not torture my child. I will not torture my child. I will not torture my child. I will not torture my child. I will not torture my child. I will not torture my child. I will not torture my child. I will not torture my child. I will not torture my child. I will not torture my child. I will not torture my child. I will not torture my child. I will not torture my child. I will not torture my child. I will not torture my child. I will not torture my child. I will not torture my child. I will not torture my child.

Whew. Lesson Learned.

The Grands

Found this pic on Todd's phone from Christmas Day.

Here's Nana and Popeye with all seven grandkids.

Lainey's face was obscured, Cameron has a death grip on Sparta, and Luke is definitely not sure what Isaac is doing to him; but seriously, could they be any cuter?

Thanks Mom and Dad for putting up with all the chaos and shenanigans!

Welcome, 2012.

Well hello there, 2012. 

Gotta admit - the Fischer family is glad you are finally here.
2011 had some great moments, but it is so last year.

We're ready to usher in a new year full of hope and even more healing.

We're ready to take the lessons we were given last year and put them to good use. Lessons on pride, and prayer, and friendship, and hope. And that's my resolution this year. Losing weight and reading more and keeping a cleaner house and all those typical resolutions would be great if they happen, but I feel like God has been speaking to me in a big way the past few years and so this year, I want to focus on those things. Maybe you can relate? Maybe not. Maybe you're already bored with my self-indulgent post......If so, go check your facebook page or something. No hard feelings. I promise.

Lesson Number One that I'm still trying to learn: 
Let Go of Pride.
I am continuing to learn that sometimes we have to let go of pride and let other people help us. We need to admit when we can't do it all on our own. For example, before we left for NJ, we were anonymously given $500 in cash and at first embarrassment followed by guilt consumed me. What if the people who donated that needed it more than us? What if they never knew, because I couldn't write them a thank you note, how much it meant to us? What if they never knew that the money they donated paid for gas and meals and hospital parking and was actually much needed and helped immensely with our travel expenses? I doubt they do know, unless they just happen to read this blog, in which case, THANK YOU!!

Lesson Number Two that I should have learned a LONG time ago:
Prayer Works!

I know, I know.....I've been praying for how many years?! I believe in prayer and always have, but this year I felt it. Really really felt it. I learned that God can truly give you a peace that surpasses all understanding when you're in the midst of a crisis. That peace could only come from Him and I'm forever thankful for it.

Lesson Number Three:
Kids are a lot smarter than you think!

I learned that sometimes a toddler can teach you more lessons than you teach him. He can teach you about strength, and smiling through pain, and how being "different" isn't a bad thing. He can teach you about embracing people as they are and letting go of the expectations you (and society) once had for them.  And that ain't easy, but when you do it, man does it feel good.

I learned that my 5 and 7 year old are two of the strongest, most sympathetic people I know. They love their brother with such depth. They are so understanding of his needs and they watch out for him like hawks. They amaze me.

Lesson Number Four:
Men and Women are Different.

Okay technically I think we've all known this one for awhile, you know the whole "Mars and Venus" and whatnot. But this past year I learned just how different we are. I learned that my husband and I grieve and handle situations very differently and we had to work really hard to figure out how to best support the other through the tough times. It wasn't easy work, but it was worth it. We are closer now than ever, and on the plus side, it's rare that we're both down at the same time which works out quite well for us. And when we are both down at the same time, we know to turn to God and humor. And yes, I believe those two go hand in hand. I believe God wants us to be able to laugh at things in life, even the difficult things. Laughter to me doesn't mean we're avoiding or shutting out sad feelings; it just means we're trying to keep it all in perspective. Which leads me to lesson five.....

And Last but Not Least, Lesson Number Five:
Pinterest Rocks.
Wow. Now that is deep mundane. But sort of seriously........pinterest has inspired me to finish some house projects we started a year ago so maybe that can be one of my resolutions too? Or do they all need to be serious and soul searching?

So I guess what I'm trying to say through my super long, self indulgent post is that 2012 is the year I hope to soak up some more valuable lessons and continue to rely on God through the rough days.......and on the good days, I hope to be inspired by pinterest and Home Depot to finish some house projects. :)

Oh and if I happen to acquire a ripped stomach without ever actually having to do a sit-up, that would be cool too. I've been trying for years. Maybe I should just hope that this is the year muffin tops come back in style.......

What about you?
Any fun and/or serious goals for 2012?