The most AMAZING Rash Ever and Eva's Last Day of School

To the front, to the front...

To the back, to the back...

To the side, to the side...

Now dip baby dip, just dip baby dip...Let me see you tootsie roll...tootsie rooooll!

Everybody now, Tootsie Roll...Tootsie Roll! Oh, hey, sorry, I just got a little carried away there with The Tootsie Roll. You know how that goes. You will now have this song stuck in your head all day. You're welcome. :) Ummm, can you say allergic reaction to Amoxicillin?? I don't think these pictures do justice to how bad and amazing this rash was but here it is in all it's glory. Poor Ella looked terrible! Ella had an ear infection last week and had been on Amoxicillin for 8 days and then all of sudden this beautiful rash showed up this past Tuesday. YIKES! I'm here to tell you that every inch of her body was covered. Every.inch. Poor baby. I took her to the doctor on Tuesday to get the verdict on the rash and it was not 100% that it was the antibiotic that caused it but I'm saying it sure looks that way. Honestly, I've never seen anything quite like it. Thankfully, Ella did not seem bothered by it and it wasn't itching or anything and it has now gone away which is a relief. I feel like all we've been doing lately is going back and forth to the doctor and to the pharmacy drive-thru at Walgreens. Throw me a bone here will ya?

Hopefully now we are over this icky sickness hump and we can get back on track with good feeds. Ella has lost some weight so we're trying to get back in the game here and on to our quest for no more feeding tube! I do have to say though that the feeding tube is helpful and is definitely a comfort for me when sickness strikes and Ella doesn't eat as well because I can always add in a feeding, etc. if need be. Can you tell that I have a love/hate relationship with her feeding tube?? Keep praying!

In other news, sweet little Eva had her last day of school at Young Children's World this week. What a wonderful year she has had! She had the most precious, hard working teachers who were so loving, patient and compassionate not only to Eva but to our whole family. We were so blessed to have Miss Patty and Miss Christi this year. Eva absolutely adored them and just talked about them constantly, she will definitely miss them.

Despite the look on Eva's face she really does looooove her teachers!


Is she not THE cutest thing you've ever seen??? Just humor me and say yes. :)

Have a great weekend everyone!

The Final Countdown

Ahh, I can just hear it now, "The Final Countdown" by Europe blaring from my boombox. Remember that song? Loved it and if we're being honest here who doesn't love all those 90's hair bands.

Isn't this picture fantastic?? I'm pretty sure my sister and I made a music video back in the day with a light show to this song. Back me up on this Ann, you remember this. Don't be fooled though, the light show involved me standing behind a bedroom door and flipping the light switch on and off to the beat of the music while Ann videotaped. Pretty awesome. My favorite music video we made though hands down has to be my solo lip-sync/dance routine to Weird Al's "Fat." Very similar to Michael Jackson's "Bad" video except instead of a cool posse of back-up dancers in a parking garage, it was just me in a homemade fat-suit working my killer dance moves in about 3 feet of floor space in between our twin beds in our tiny bedroom. Other than that, veeerrrryyy similar to Weird Al and MJ's videos. How cool were we you ask? Very, is all I can say. :)

Anyway, where was I going with this? Oh yeah, the final countdown. I just got side-tracked with a little blast from the past there. We are on the final countdown here friends with Ella's feedings. Last week we dropped another feeding so now Ella is down to just ONE feeding with her feeding tube at night! Incredible, I just can't even believe it. Now, this past weekend though Ella has been sick so she hasn't been eating well and we've had to add an extra tube feeding in here and there so I don't feel like we're getting an accurate gauge on what a real week with only one night feeding would look like. But, I say all of that to say that we are getting closer and closer. Time to put your rally caps on! (That's for you Ann, I know how much you looooove your rally cap.) I like using the word rally cap, it's just one of those annoying words like squamous or cheesecloth and I can't help but cringe a little every time I hear it.

Anyway, we are getting closer to not needing Ella's feeding tube so please keep praying for her to keep eating well. Especially with this recent illness we will be set back a little more I'm guessing because she has lost more weight than I would like so be praying for good eating and good weight gain. We are still going to feeding therapy once a week and she is doing well but has not quite met her goals yet. She is close but still needs to bump up the volume a little more in order to reach her goal. So, pray, pray, pray!

Maybe I need to dig out my "Fat" video to really get her to rally with the eating. At this point in my life I am not above humiliating myself if that is what it takes. To prove my point, I give you Exhibit A: Every Monday/Thursday morning Rick takes Eva to school and as they are getting in the car on most days she will request for me to do the Chicken Dance as they drive away. I know, weird, you don't have to tell me. Anyway, so what does any good mother do? Well, I stand in my pajamas in my garage and do the chicken dance while Rick and Eva slowly pull out of the drive-way and drive away. Not kidding. I choose to believe that instead of thinking I am a complete wack-o, I believe Monday and Thursday mornings at 8:30 MUST be the highlight of my neighbors week. I mean, I would looove it if I saw a grown woman in her pajamas dancing in her garage every week wouldn't you? So, trust me when I say I am not above self-humiliation because obviously I'm not.

Keep praying friends!

Ella

Soooo, I'm gonna cut right to the chase here on this update with Ella. This is big people, big. By the way, this update is a little lengthy, sorry, it's just been so long since I've given an update and there is much to report. Just thought I'd give ya a warning. It's all great news though so you better read it all. :) We'll start with feeding news first. I'm so excited!
We've moved from this...

to this!!!

What.is.up?? Holla! We are cutting back tube feedings like it's our job around here. Now again, concerning this picture...these days we are focused more on calories/weight gain as opposed to tooth decay, we'll worry about cavities later. Anyone else giving their 19 month old Sonic cokes? Anyone? Anyone? We're feeling pretty good about it so it's cool. ANYWAY, back to Ella's feedings. Man, she has come SO far. When I think about it I get a lump in my throat and I almost start to cry. This past week we dropped her last day time tube feeding which we usually give to her during her nap. This means that we are now down to...drum roll please...only two feedings at night! Umm, in case you missed that, that is two my friends, TWO! Do you realize how huge this is??

Let me do a little recap here for you to better explain. At Ella's shoulder surgery this past August she was not really eating anything by mouth at all and was being fed every three hours around the clock, which met she got 8 feedings a day. They were all by feeding tube. Back then she was vomiting multiple times a day and if she did try to eat anything she would gag and throw up more. We started going to feeding therapy twice a week at Our Children's House in Grapevine in September. Since then, we have slowly dropped feeding after feeding as Ella has slowly started taking more food by mouth and gaining weight. Long story short, in the past eight months we have gone from eating hardly anything and using the feeding tube for every feeding to now eating a breakfast, lunch and dinner and only being fed two times in the middle of the night with her feeding tube. I feel the tears welling up again. I stand amazed. The Lord is so good! We have worked so hard to get to this point and we didn't get here alone. Your continued prayers for Ella have been life changing and we feel so blessed to have such incredible prayer warriors, friends, doctors and therapists who are all working so hard and with such compassion and love for her. Thank you!!

We are now only going to feeding therapy once a week and Ella is getting close every week to reaching her goals. Our main goal with feeding right now is volume. She is willing to try pretty much anything you give her, she just doesn't always eat very much of it. So, we are really working on increasing her intake. Also, we are adding a product called Benecalorie which is a very calorie dense, oil-based liquid to EVERYTHING she eats. This stuff is my new best friend, I mean it's going in yogurt, applesauce, on her pizza, in her burritos, everything. It's awesome! So, that is really helping to bump up the calories even if she doesn't eat a whole lot in one meal. Most meals she eats fairly well but we still have to work at encouraging her to eat more and sometimes we have a stand-off with crying and tears but guess what...momma always wins. I have to with this feeding thing, it's just the way it goes. Most meals though are very pleasant, no vomiting at the table and she acts hungry and eats pretty well. It's really incredible and I don't take a single bite that she takes for granted, I'm so thankful that she is eating. She now will even walk over to her high chair and say "Eat, eat." What? Is this the same child that just 8 months ago would not eat anything? Amazing. Thank you Lord!

Last thing about feeding and then we'll move on. We are so close to hopefully not needing a feeding tube anymore. Like I said, she only gets fed with her tube two times at night right now. Please be praying that she continues to eat well and to gain weight. She is up to 19 pounds now and with dropping a feeding last week she lost 2 ounces which is not bad at all in my opinion. This is usually her pattern when we drop a feed, she'll lose the first week, maintain her weight the next week and then it will slowly go up from there. So, please keep praying for her to eat well and gain weight as we are working towards dropping these last two feedings. My prayer is that by her 2nd birthday in August she will be feeding tube free! We're that close folks.

Okay, next item on the Ella agenda, her shoulder. We went back to Scottish Rite at the end of March for her six month check-up. Since her surgery in August she just took off and responded very well to therapy. For the past several months though we had felt like Ella had kind of hit a wall as far as range of motion goes. She could get her arm up to about 70-75 degrees and that was about it. With help, she could get it to 90 but that starts to push it and she starts compensating by arching her back. The picture below is a good visual for you on what her range is.

At her appointment in March they did some x-rays and answered alot of our questions and confirmed some things about Ella's shoulder. Basically, Ella's shoulder blade on her left side is attached to her spine which is the main problem, so to speak. Things with her shoulder are very complicated so I won't go into every detail because there's alot but I'll try to give a little explanation. I don't know anything about muscles and bones and what they should be attached to but your shoulder blades are not and should not be attached to your spine. So, this is obviously the main contributing factor to her limited range of motion because she can only lift her arm so high and then it just stops because it can't go any further because it's attached. Her arm is also weaker on her left side due to the reattaching of muscles they had to do at her surgery so the strength is just not quite there yet to get her arm up to 90 on her own. She has great use of her arm as long as it is around waist level but anything above that is a bit of a struggle. She is working so hard though and has come a LONG way. We're so proud of her. I remember after she was born, in the NICU and when we brought her home from the hospital she wasn't even using her arm. It's like she didn't even know it was there. We would have to help her use it and remind her that she had a left arm because it just kind of hung at her side.

I think about that a lot and I have to sometimes make myself think about the positives when I get down about the limitations Ella has with her arm. I can start to worry about things and what the future will be like for her but I feel like I've come a long way in my thinking and what I'm thankful for. I am so thankful that Ella has two beautiful, functional arms. Yes, there are limitations and yes things are and look different on her left side as opposed to her right but she has two beautiful arms. I thank God for that all the time and for the expertise and wisdom that he gave to her surgeons to repair her deformity and give her a chance to thrive in a world that is so cruel to those who look different. God has blessed her so much.

So what does the future hold? Well, basically the range of motion that Ella has now is what she will have. So in therapy we're working on strengthening now instead of range. The surgeons alluded that surgery in the future is a possibility as far as cutting her shoulder blade away from her spine in hopes of giving her more range. So, this does give us hope that more can be done. I don't know though what future means, if that means when she is 8 or 18. I do know that nothing will be done any time soon because she is still so small and they don't want to do anything that will risk impairing the function she does have in her arm. So for many more years the range she has now is going to be what she's got. I'm okay with this now but at the time it was hard to hear. There is much hope though that more can be done. Also, in additon to all of that Ella also has some abnormal vertebra in her cervical spine (which is at the top of your spine) that they want to keep close tabs on. It's all related to her shoulder but some of the vertebra are malformed and fused together so they want to look more closely at that to make sure if there is something we need to do that we don't miss a window. We'll go back to Scottish Rite in June to meet with a spinal surgeon to look more closely at things so we may have more info then.

I don't have any new updates on things with her tummy. You can see again in the picture above how her tummy bulges out because of her hernia. I don't know when she will have surgery to repair that, more than likely it will be when she is 3 or 4. We haven't been back to her tummy surgeon recently but that's the time frame he gave then. That surgery would involve pulling Ella's abdominal muscles together to achieve full muscle closure instead of just the skin closure she has now, cleaning up her scars and hopefully creating her a cute little belly button. Oh did I mention that before? Yeah, all babies born with abdominal wall defects like Ella do not have belly buttons and there is a much more scientific explanation for why but I'm not your girl for that. Who knew? I mean, who needs a belly button anyway right?

For now, there are no surgeries in the immediate future so we're just enjoying watching Ella walk and talk and we're cherishing seeing her sweet personality blossom. We don't take any of it for granted. There are a lot of unknowns out there still and there will be more surgeries to come but we are just taking it one day at a time and thanking God for brighter days.


Thank you for your continued prayers for our family and specifically for Ella. If you made it through this I'm impressed, but didn't I say there was good news to report? Told you. Thanks for loving us and keep praying for Miss Ella!

Happy Easter!

Aaannnd HAPPY it is! Is this not the picture of fun and happiness? Who is having fun here? Oh man, why do we do this to our poor children...make them take pictures with big, costumed people we don't know. No, no even better, not just take a picture with but force them to hug and sit on someone's lap who is dressed up like a big, furry animal. Why do we do it you ask? Simple, for this picture right here my friends. Hysterical, I just love it.

On a more serious note, I pray that each of you have a blessed Easter weekend celebrating our risen Lord Jesus and the freedom we have in Him. We have much to be thankful for!

Stay tuned because a big Ella update is coming. I realized it's been awhile since I've updated about how things are going with Ella as far as feedings, therapies, etc. so that is coming. There is big news...our girl is 19 months and is finally walking, talking constantly and feedings are SO much better! Can't wait to share with you the good news. I'll leave you with this picture. Ella is one amazing little girl and has come so far, thank you Lord! I've got my hands full with this one and I love it. More to come!


What happened to safety first?? This child is fearless!

Eva, Eva, Eva

How is it possible that I didn't have one post in the month of February? Not one mind you, not one! Man, I'm falling off the wagon here. I've really had high hopes for updating my blog more often but obviously that's just not happening. I'm going to do better, I will. March is gonna be it, I can feel it, my lucky month for more updating. Don't hold your breath but I'm just saying. February was a fun but busy month...Rick's parents and cousin Emery came to visit for a week and we got an amazing 1.5 feet of snow just to name a couple of things. Here are some pictures of that because now that it's March if I don't document it now it's never going to happen. Back to the fact that it's March already...is this crazy to anyone else? Unbelievable.

Eva and Ella LOOOOOVE their cousin Emery or "Emma" as Eva calls her. Poor Emery was called Emma the whole week she was here, hope she doesn't have an identity crisis later. :) We had so much fun with her, she is the sweetest thing!


Looking at the snow with Dee

Fun with CC

Aaaannnd, here is the post I've been promising about Eva. Oh man, I just love this girl, she cracks me up everyday. She is always doing something or into something and it just makes me laugh. Here are some of my favorite Eva stories from the past few weeks...or actually maybe months now since I'm a blog slacker.

1. I'm going to title this one "BooDonald's." Okay, so several months ago on our Thanksgiving road trip to Kansas City Eva and McDonald's pancakes had a bit of a run in. We stopped on our way back home to eat breakfast and Eva had pancakes, everyone was feeling good (as good as you can be after McDonald's breakfast), we got back in the car and went on our merry way. Well, fast forward an hour into the trip and the pancakes all came back up. I'll spare you the details on this one but yes in the car, I was wedged in between the two carseats in the back at the time so I had a front row seat to the show. Fantastic I tell you, Eva really did a number with this one, poor thing. I wasn't prepared because usually it's Ella throwing up everywhere not Eva so this wasn't on my vomit radar AT ALL. This might have been the lowpoint in the trip. Anyway, EVER since then everytime we would pass a McDonald's Eva would say, "I no like Donald's." Since there are McDonald's every 2.3 miles we hear this ALOT. Well, so Rick thought he would jazz things up a bit so he taught Eva to give a loud "Booooo McDonald's!" every time she sees one. Thanks Rick. She doesn't really get as into it as Rick. Hers is a little more meek and not quite with as much energy. It just kind of comes out as one word, "BooDonald's." Love it.

I, however, am a fan, the only fan of McDonald's in our family for two reasons: 1) The dollar menu and 2) double drive-thru lanes. I will say that I do get a little embarrassed ordering a McDouble everytime I go. Hamburgers with funny names are just a little much for me. I mean who are the ad wizards behind naming things at Wendy's? The Stack Attack, The Baconater...really? Do people really order these things? I just can't do it, I can't, but I will muster the strength and order a McDouble. I just don't think about the fact that I'm eating a hamburger that ONLY costs a dollar. I know, gross, don't think about it. And double drive-thru lanes, what more can you say? GENIUS I tell you, genius.

2. Eva has learned the phrase "Drop a deuce" from somewhere or someone. I have NO IDEA where she would've learned this. :) I'm going to throw Rick under the bus on this one. There are still many words that Eva says that don't always come out very clear but wouldn't you know this phrase comes out clear as a bell. They always do don't they? I mean what can you really do at this point, tell her to stop saying it? No, not an option, this one is too good. All you can do at this point is just be proud. Am I right? Am.I.right??

3. Okay, I'm just going to run with the bathroom theme here and continue on. This little number I will call, "Rick, Eva, and the Runaway Terd." So a while back one day Eva had a little accident, thought to only be numero uno at the time, so Rick being the helpful husband that he is said he would help her change clothes etc. We were at my parents house so he went into another room and was trying to help her change clothes. She was kind of acting funny about changing her pants and wouldn't do it and I think Rick was getting a tad frustrated with her so instead of waiting for her to take them off he just did it for her. Well, I little surprise rolled out when he did that...and kept rolling and rolling and disappeared. After searching the room poor Rick finally found the lonely and missing terd under the bed. So great. What is most funny to me about this story I think was Rick's reaction at the time and the fact that he was back there combing the bedroom over for a missing piece of poop. I almost fell out of my chair laughing at him telling me what happened and then saying, "It rolled away somewhere and I couldn't find it." Hilarious, just kills me. Love you babe, you're the best!

4. Am I really writing this much about poop on the World Wide Web? I feel like I should apologize to my mom for being "crude" as she would say. She knows I love good bathroom humor but still, sorry mom!

5. I love that Eva calls Ella by her first AND last name most every time. She pronounces it "Aiya Cawder." Like today she asked me, "Aiya Cawder go to doctor?" So funny.

6. Eva loves to play with baby dolls and take care of them. She loves to change their diapers, pretend to take them to the doctor and church, you know because these are again, really the main two places we frequent. Anyway, the other day she was pushing her baby doll around in her grocery cart and here was our conversation.
Me: Where are you going?
Eva: Doctor, baby is sick.
Me: Oh, I'm sorry, what's wrong with the baby?
Eva: Her nose hurts.
Me: What happened to her nose?
Eva: Baby's got "boogies."
Wow, last time I checked I don't know that anyone in our family or anyone ever has gone to the doctor specificly because of boogers but stranger things have happened so you never know. Cracks me up.

Poop and boogers aside, there is much more to precious Eva than this. She is so sweet and fun to be around. She is very observant and compassionate. She loves her sister Ella and is very understanding about all of her doctor appointments and she loves to participate and help Ella during her therapy sessions. So sweet! She is the best big sister and takes such good care of Ella.

Check out this multi-tasking...pushing Ella in her baby doll stroller AND pushing Ella's IV pole. Impressive and helpful I might add. Told you she was the best big sis!

She loves her friends and family and prays for them by name every night. I love listening to her little prayers. She loves to help with things around the house and pick out her own clothes. She loves Sonic or "Sockin" as she calls it. She is as slow as molasses but so am I so it's okay most of the time. She loves lip gloss and heels and I often find her in my bathroom wearing my shoes, putting on my deodorant and with lipstick smeared all over her face. Awesome...except for this week because she has a light rash on her face and neck and I think it's because she got into some funky moisturizer or something while I wasn't watching.

Rick just shakes his head and makes some kind of comment about how she is a mini me and that we've created a monster here but deep down I know he loves it! She is just a joy, we obviously have our moments like everyone does but she really is a true joy and a blessing. I thank God everyday for the miracle that she is and that He healed her and gave her to me. I love being her mom and I feel so blessed to have her.

Safety First

First off I would like to say thank you for all of your sweet and encouraging comments on my last post. Sometimes I get in reflection mode and feel the need to put it into words to share and you all are so sweet to encourage me in that. I think since we're now going into year #2 with Ella and things are more manageable I've had more time to think. So, just be prepared to get more of where that came from. :)

Anyway, on a lighter note, here's what our Ella has been up to lately. The girl has taken a liking to Eva's scooter helmet. Actually, liking is putting it lightly, I would say she is borderline OBSESSED with it. You know how us Carders are all about safety, but really, this is taking it to a whole new level. If she spots the helmet somewhere she follows you around the house and whines until you put it on her head. AND, it must be buckled or she whines about that too. Sheesh! So high maintenance.

I'm talking morning, all through the day and night she will wear this thing. You would think for a child who had to wear a Cranial Band for 4 1/2 months she wouldn't want anything on her head. But, no, it's like an orange on a toothpick! Remember the movie So I Married an Axe Murderer with Mike Myers anyone? Remember the guy with the huge head they called "Head" but pronounced Heed? Yeah, that's Ella, Heed. Kills me. Just a little blast from the past there for ya.

So here's a little glimpse of some of what a day in the life is like...with the helmet of course.

Don't worry, got it on while we're feeding.

Sweet sister Eva keeping Ella company while she gets fed.
Working on eating some puffs and M&M's. Yeah, we eat M&M's for breakfast, lunch and dinner, don't worry about it. She loves them so you better believe I have them with me at all times, I even carry them in my purse and she gets them whenever she wants. Finally, something with calories! We might have cavities later but dog gone it we're trying to gain weight here. This picture cracks me up...not necessarily the best for promoting your child. Face all dirty, huge weird wonky helmet, shirt not even buttoned. Nice.

Just playing and "helping" mom unload the dishwasher.

Just "walking" around the house. For those of you who haven't seen Ella, she walks on her knees. Everywhere. It's hilarious. She wants to be walking so badly so she just walks around on her knees. I have it on video so when I figure out how to post video I'll put that up so you can see. It's great. Poor thing really needs some knee pads. Not kidding, her little knees are so red and chapped. I mean, look at her body/head size relation. This helmet is HUGE!

Even at bedtime we sssssttttiilll have on the helmet.

There ya go. The fun never stops around here. And don't forget about our other child. Wait, what? Is that Eva or Cruella Deville? It's not weird AT ALL that I have one child who wears a scooter helmet 12 sizes too big all day and the other one is sitting around in a bouncy seat looking all creepy in her fur coat. Good stuff I tell ya, good stuff.

I'll post on Eva next because she is one funny cat and she deserves a shout out every once in awhile. So, get ready for that because it will, as usual, involve some bathroom humor. You know you love it just as much as I do. Hey, I'm just trying to give the people what they want so don't judge. Stay tuned!

Thoughts on 2009

HAAAALLELUJAH, 2010 is here!! Is anyone else excited to say good-bye to 2009? Anyone, anyone? Can I get an Amen up in here? Dawg, it's been a looooong, hard year. Thank you Lord for new beginnings! Lately I've been thinking a lot about this past year and all that we've been through with Ella and one word keeps coming to me over and over again and that is the word thankful. 2009 was an extremely difficult year full of many valleys and dark days but at the same time there were many mountains and blessings even in the darkness.

***Just FYI, this post has no pictures, is a bit honest and raw so if you're not in the mood for that than you might not want to read this. I guess this post is just part of me processing things and you've been with me for the long haul, the plate-throwing and so on but just wanted to give you a heads up. You're welcome. :)***

I remember at this time last year things were really starting to sink in for me that things with Ella were not going to get better any time soon and that there were some major things wrong that were going to take a long time to heal or maybe were never going to heal. I just thought that once she came home from the NICU things were going to be so much better and she would start eating, we wouldn't need a feeding tube and she would just develop like any other child. Ummm, yeah, so that's not how it went down. Things with Ella were much harder and more complicated than we knew or expected.

There was so much I didn't know about children with omphaloceles
(pronounced om-fal-o-seel) and how their little bodies are just so different on the inside than ours and what that meant for Ella. I didn't know how to help her eat or stop throwing up. I didn't know what was wrong and I just felt so completely helpless. I didn't know how I was going to wait for many more months before doctors would even begin to consider doing anything about her shoulder deformity. I dreaded going to new doctors appointments and having to explain again all of our concerns and questions and having to undress her and explain yet again, "Oh, by the way, she has this deformity, just so you know." Really, sometimes I would laugh out loud when they would ask, "So do you have any concerns?" Do I have concerns?! I wanted to say, "Well, besides the fact that she was born with numerous organs outside of her body, has a major deformity, can barely use her left arm or turn her head to that side, is vomiting multiple times a day and night, and will not eat unless she is in a dark, quiet room and is asleep just to name the major ones...umm, other than that no, nope, no concerns to speak of." But I didn't. I would just say yes, I do have a number of concerns and Rick and I would look at each other and then probably give some sort of an awkward laugh. I don't know, call me crazy. (Let's be honest, I think I was a bit crazy then. :)) Seriously? And this was only the beginning.

Those were some really hard, hard days and nights. Days that brought me to my knees. Days that were filled with exhaustion, frustration, sadness and little hope. Days with moments where I was so low I did'nt know how I was literally going to pull myself off the floor and stop crying. Most nights I was up almost every hour until we were blessed to receive night help three nights a week. Rick was going to bed early and getting up early so he could take over monitoring Ella so I could get at least a few hours of uninterrupted sleep before he left for work. For several months I would have nightmares from time to time or wake up and just cry because it hurts so badly when you have a child that struggles so much. Those were nights I had a hard time catching my breath...even out of a dead sleep. I don't know that the word hard even comes close to being able to describe what every day and night was like.

A word that does describe my feelings, again, is thankful. I'm at the point now that I can look back and honestly say that I'm thankful for 2009 even though it was by far the worst year of our life. I'm thankful for some of those dark times. Don't get me wrong, I'm soooo thankful that 2010 is starting out much brighter and that I feel like there actually is light for us. But, there is something to be said and many things to be learned when you're in the darkness. I much prefer brighter days and don't want to spend much time in the black tunnels or relive any of what we've been through. BUT, the Lord is amazing in how He gives us treasures that can only be found when you're in the dark. They can be very simple things, sometimes big things and sometimes not even tangible things. Sometimes the treasure was in the moment I was curled up in a ball on the floor crying unable to stand and finally I would hear His soft voice saying, "I'm here, I love you, I know it's hard but it's going to be okay. You will see." And somewhere not out of my own strength but out of His I was able to get up, look in the mirror and say His name out loud and I felt like I had the strength to face the day. A verse that a friend gave to me comes from Isaiah 4:3and it says, "He will not break a crushed blade of grass or put out even a weak flame..." I felt crushed and weak but this verse gave me strength many days that even though I felt like was just being kicked while I was down, He would not let me go. What a treasure. He is alive and working and never leaves even when it's dark and quiet and we're wondering if He's listening at all.

There were so many days that I was just making it hour to hour and a sweet friend would show up at my house unexpected to just sit on the couch and offer encouraging words. Others would come and play with Eva, do my laundry, straighten my house or come with arms full of groceries or a trunk full of diapers. Wise friends and elders would come month after month to help us process what we had been through and how they could help us survive and move forward and function as a family. Others would write encouraging notes, send gift cards, and call week after week just so I knew I wasn't forgotten in this struggle. We were supported in every way...spiritually, emotionally, physically and financially. Everyone just dove in. Just jumped into our life and opened their hearts and eyes to what the Lord was putting on their hearts to do and just did it. We certainly didn't know what our needs were because we had so many and were so overwhelmed but our sweet friends and family just did for us and didn't ask.

I'm thankful because in those dark times I learned more about the Lord and how much He loves me and cares about my little insignificant problems that seem so big to me. Sure, there were days that I can honestly say I was angry at God and I didn't want to talk to Him because I had no idea what to even say. I didn't want to even open my Bible and I didn't for a long time. But, He was there and showed us by giving us friends, family, and even people we didn't know that reached out to us as His hands and feet. I'm thankful for the good times too. Many prayers have been answered, some the way I wanted and some not, but they most definitely were answered. I'm thankful that I have an amazing husband and two beautiful daughters. I'm thankful that I live in a city where I have expert medical help within driving distance. I'm thankful that I finally feel like we're able to sit and enjoy our children. We can go to the park as a family. We can go on walks, play together after dinner or go visit grandparents. These sound like normal, simple things and they are but they weren't for us for so long. We could not do these things up until the last couple of months since Ella is doing so much better so the little things are big to us and we don't take them for granted now and I hope we never do.

I feel like the world will forever look different in my eyes because of Ella and because of what I learned about myself, others and the Lord in 2009. It's been life changing. I'm hopeful that 2010 will be a better year for our family. I believe the Lord has great plans for us and because of what we've gone through with Ella, we will be more prepared and refined to be used by Him. I'm excited to see what He has in store for us this year. I know I have a lot of surrendering to do, a lot of listening to do and a lot of getting to know Him more.

Thank you for walking beside us this year through the good, the bad and the ugly. Your prayers, encouragement and support have kept us afloat. We consider you some of our treasures in the darkness. Thank you! Please keep praying for Ella.

I'll lighten the mood next post and include some pictures...promise!