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!

Merry Christmas!!

Well, well, look who's back. I tought I needed to do a brief update since I've been on a month and half long blogging hiatus. The Carders are still alive and kicking. Seriously, what happened? No, I have not been in one of my funks, surprising I know. You know me and my funks. Again, can we just talk about how great the word funk is? You say it and...BAM! Instant better mood. Things have just been crazy here much like it is for everyone I'm sure and I've just gotten so behind on the ole blogging. So, don't be surprised in January when I do a post about Thanksgiving and our first family road trip EVER to Kansas City. Holla!! Just go ahead and throw me a bone okay?

So much has happened in the past month and a half so there is BIG news to update on. I'll do a more in depth post after Christmas but just a few praises are my parents moved to Fort Worth over Thanksgiving! Yeah, AAAAMMMAAAZZZIINNGG! What a blessing to have them here. The doors kept opening for them as they thought and prayed about moving here and now here they are. Sold their house in less than a week and bought one here the same week. Pretty awesome. The Lord is good.

Also, Ella is doing really, really well. Feedings are going great, there is NO vomiting. Praise the Lord! We went from vomiting every single day, multiple times a day for a year to now none. NONE! She is actually acting hungry for the first time in her life and sleeping great at night just to name a few positive things. Right before Thanksgiving we started her on an antihistamine purely for the side effect that it increases appetite. And lo and behold the girl is eating like you wouldn't believe. She is taking an average now of around 4 ounces in her bottle in like 15 minutes where as before it would take us about 20-30 minutes to get her to take an ounce and half. Yeah, the pace and volume have picked up tremendously. So, note to self, if I ever have to be on an antihistamine, this is not the one to take. You might stop sneezing but you'll gain 25 pounds. Not cool for anyone but Ella who actually needs to gain weight. We've seen a huge difference since starting her on the new medicine. We are still using the feeding tube for every feeding but feedings are not taking as long which is wonderful. She is eating more table food and isn't gagging like she was. She actually points at food and acts like she wants it and says "bite" or "baba" when she sees her bottle. I know, who is this kid?! This is just incredible since before this was the child who could go all day and not eat a thing and be the happiest kid on the planet. I don't know, feeding is unfortunately very complicated for most babies like Ella who were born with an omphalocele, but over time the prognosis is very good that they will eat. Ella has made tremendous progress and we could not be prouder or more thankful. It's not what you would call "normal" but it is big steps in the right direction.

Also, we cut out another feeding a week or so ago so now we are down to 5 feedings a day. WOO HOO! AND, she had her biggest weight gain yet this week even though we cut out a feeding. This is so exciting for us! She is eating more food by mouth as well and is very willing to try new things. She is such a little fighter! Our goal is still weight gain but now we are really trying to make her daily feeding schedule more age appropriate and we're working on getting more volume in table food wise. Things still are very micro-managed and it is definitely a team effort between us, her therapists, dieticians, and doctors but the hard work is paying off. The light at the end of the tunnel is getting brighter for us. Thank you Lord! There have been plenty of days that I wondered if there ever would be light or if someone forgot to put an end to this dark tunnel we have been in this past year. The Lord is faithful in the good times and the dark times and we have never doubted His love for us. We have a lot to work on still but things have definitely taken a turn for the better so KEEP PRAYING!! Your prayers are life changing and greatly coveted, thank you for being so committed to praying for Ella. Keep praying for her, she's come a loooong way and still has a ways to go.

Anyway, really I wanted to wish everyone a Merry Christmas and let you know how much we love and cherish each of you. We're so thankful for you and how you bless our family with love, support, encouragement and prayer. I hope that all of you have a blessed holiday season celebrating our Lord and Savior Jesus Christ and all that He has done for us. More details on Ella's progress and other news to come, check back soon!

Will the real Slim Shady please stand up?

GUESS WHO IS PULLING UP AND STANDING BY HERSELF???

Yours truly, little Miss Ella Hope Carder. What a big girl! Today she figured it out and has been pulling up on EVERYTHING. We're so proud of her and this just shows us that she really has gotten so much stronger. We didn't know when she would start pulling up because her left arm is still weak and she has a hard time reaching up with it, which pulling up requires you to do. However, even though her range of motion is limited and her arm is weaker than her right, she is able to use it to help pull herself up. Yea Ella! It's so encouraging to see because we still have a long way to go as far as stretching and strengthening her muscles on that side. Time will tell what her range of motion will be in her left arm. Her shoulder deformity was very rare and her shoulder surgery was the first her surgeons had ever performed of it's kind so really none of us know what she'll be able to do or what kind of range she will have. We just know that she has made good progress so far and we're just continuing to pray that the Lord will heal and strengthen her arm and give her full range of motion.

Another thing that has made it harder for Ella to stand on her own is her weak abdominal muscles. If you remember, her ab muscles are not closed because at her omphalocele repair surgery at birth it was such a tight fit getting the organs put back in that they were not able to pull her muscles together. It was just a skin closure so because of this she has a hernia which she will have surgery for to repair in the next several years. Anyway, because of all of that her ab muscles are weak so things like walking, pulling up and other things are harder and often delayed for babies like Ella.

So, can you see why we are SOOO excited that she has reached this milestone?? She is a hard worker and is so cooperative in all of her therapies that she is in which is such a blessing. Please keep praying for her, the prayers are definitely being felt and answered. Keep praying this week that she tolerates her feedings and gains weight. The dietician came today and Ella gained about 2 ounces which is good but we were hoping for a bigger gain. At least she didn't lose so that is a step in the right direction. So this means that we will continue on with our schedule of six feedings a day and try to increase her volume daily. This whole feeding/weight gain thing is very complicated,micro-managed,overwhelming and hard to understand, I know, unless you have a child with feeding issues.

So, please continue to pray for us as we try to figure all of this out with Ella and make decisions that will work for her and our family. We have a lot of great help medically with it all which is a huge blessing but feeding is a very overwhelming and slllloooowwww process. Slow meaning probably for several more years. I'm not trying to be Debbie Downer or appear as if I'm giving up hope, I'm just being realistic. So that's why sometimes it's hard for me to answer when I'm asked "How are feedings going?" or "How's Ella?" I mean, I don't know...she is doing well and we are definitely blessed, but things are not great or near being "normal." It's BETTER, but it's still hard and we have a long way to go. Please know that I love that people care and genuinely want to know how things are going and how to pray so don't take this at all to mean that I feel awkward or annoyed by the questions because I definitely appreciate and want them. I feel immensely blessed by such an amazing support system with friends and family who have and continue to help us so much and I don't take it for granted. You know me, I just can't sugar-coat things so hopefully without making others feel awkward by my response to their questions I try to be as honest as possible without going into great detail that no one really can understand anyway because they're not in my shoes. Does that make any sense? Hope so and sorry if it doesn't. It's just that with a child like Ella who has some special and specific needs you don't see big changes day to day so sometimes I feel like we've gotten nowhere and I'm banging my head against a wall with all of this but the truth is she has made great improvements, it's just baby steps when I want giant leaps. I'm learning to be thankful for baby steps and I just have to remind myself of where we started from. Last year on this day Ella had her G-button surgery and was still in the hospital so I would say we've come a long way wouldn't you? I mean, this past Saturday night at dinner the girl ate 1 1/2 french fries(a girl after my own heart :)), two slices of carrots and part of a mandarin orange slice. Seriously, let's get this child some fries and let 'er go to town! What a difference a year makes. Thank you Lord!

Ella one year ago

Wow, this post is getting a little longer than I had planned. You get me going on this whole feeding and special needs children topic and I could talk for awhile. Get ready because there will be more where that I came from. I am definitely learning A LOT through our struggles with Ella and it has opened my eyes to this world that we are in along with so many other families of children that need extra special care. I don't feel alone in this thanks to our amazing families, friends and support system. I feel different, but not alone. Thank you Lord for being faithful to us! Keep praying, love to all!

Halloween Fun

This past weekend we had a fun time going to a little pumpkin patch by our house and then to a Halloween party. It was so fun because we actually got to do these things as a family. I know that sounds weird but really we rarely go anywhere besides church or maybe to the park as a family. It's just been too difficult with Ella's feeding schedule to be able to do much without sacrificing a feeding or getting off schedule. That sounds a bit rigid and we're not trying to be but when you have several appointments every day and Ella has to be fed so often we have to stay on schedule in order to work in all of her appointments and keep feedings on track. So micro-managed I know, but that's just our life! So anyway, that's why weekends like this past one where we got to do some things outside of our house as a family are so fun and we actually feel semi-normal.

On a side note, this weekend was different because we dropped one of Ella's feedings so she's down to six feedings a day instead of seven. So if you saw us out and about more this past weekend, this is why. It's not that things have miraculously gotten better all of sudden, we just dropped a feeding so we had more time to actually leave the house and not have to rush back to feed Ella. This feeding schedule is huge because it gives us SO much more flexibility with feedings and time during the day to do things such as going to the pumpkin patch. It was so nice to have more time in between feedings and to actually let Ella take a long nap and not wake her up to eat. I think this weekend was the first time in her life she was able to take a long afternoon nap without having to be woken up to be fed. Poor thing. This past weekend was a trial run with the whole six feedings thing and the dietician came today and weighed her and she had lost some weight. :( Boo. But, we decided we're going to give it another week doing six feedings and we're going to bump up the volume a little in each of her feeds in hopes that we can continue with this schedule and she'll still gain weight. We'll see next week when the dietician comes back to weigh her. Seriously, be praying that this will work and that she will gain weight. I'm not kidding, y'all pray!!

Anyway, back to the weekend, we went to a little pumpkin patch to try to get some pictures of the girls which was fun but a little wheels off. It was sooooo muddy and the only place to take pictures you had to stare into the blinding sun so the pictures didn't turn out quite as good as I had hoped. Classic. We all looked like we were in pain because our faces were all scrunched up from trying to do the awkward blinding-sun-smile-but-trying-to-smile-normal thing. You know. I didn't post any of those because they're just rough. Maybe I should though just for kicks. Anyway, needless to say, we didn't stay long and we were just a taaaddd bit muddy. Oh well, a little mud never hurt nobody...shoot. The next day we went to our friend's annual Halloween party and trick or treating. We had a great time and it was Ella's first "official" Halloween since last year at this time she was still in the hospital. We didn't do any partying then either because we were up at the hospital visiting her. Her sweet friends in the NICU made sure she was all festive in her ghost onesie though for us when we came to visit.

Last year at this time, sweet baby girl! Unbelievable how she's changed.
We had great time dressing the girls up this year and visiting with friends. Ella was a nurse and Eva was an M&M. Appropriate don't you think?

Sweet Eva, the girl loves candy so being an M&M is just right up her alley. Don't you love that her hands look a little like Edward Scissorhands? These gloves were the best I could find so we just went with it.

Ella Carder R.N. with her first pair of heels

Aren't these shoes "heelarious?" Seriously, that's what they're called, I'm not that clever people.

The crazy nurse will not sit still for a picture and look at her face...she totally knows she's being difficult and is thoroughly enjoying herself. Wonderful.

Aaannnd this is about the best I could do getting a picture of the two of them together. What is with Ella's crazy legs everywhere? Good night...



Guess what we are? Isn't it obvious? Yes, I am the Octomom and Rick is the paparazzi. Can't you totally tell? :) That's what you were going to guess right?Well, this was a last minute costume (if you can call it that) and bottom line is I am too cheap to pay for a black wig and I lost my sunglasses 30 minutes before the party so the only accessory to my costume was Ella's carseat filled with 8 of Eva's baby dolls. As for Rick, obviously this picture was taken with our camera which was his main costume accessory so this is what you're left with...Rick and Amy dressed as ourselves but really supposed to be the Octomom and the paparazzi. Hey, at least we tried right?

Sweet Nurse Ella taking care of all the babies

All in all we had a fun weekend being a family and getting to spend some time with friends.

Eva trick or treating with her friends Emma and Addie

Eva trying to figure out the pinata

It's okay Eva, yo Mama ain't skeered of a little pinata. Dude, I should've had a permanent pinata up in my backyard this past year. I could've switched back and forth between hitting that thing around and throwing my plates. It's not too late, maybe I'll look into that. Aaahhh, very therapeutic. I think I have a new found love for pinatas.

Going after the candy

Eves checkin' out the loot yo

Isn't this so sweet? I just love this picture! Precious.

Pray for good feedings and weight gain this week for little Ella!!

Spandex are ALWAYS Cool

Weeeelll, so I have had great intentions of updating my blog more than twice a month but it just hasn't happened. As usual, things are moving at a fast pace around here and I haven't had the time to do much blog stalking which is always a shame. You know how much fun that is. Anyway, thought I'd do a little catch up on what's been happening around the Carder crib lately. Sorry for the long posts folks, I'll do better next time.

1. So Ella has a new accessory that she's been wearing around the house which are her super cool hot red spandex shorts. Aren't they great? Hilarious. Every time she has them on I can't help but think of Six Flags, early 90's. Don't you remember how many people wore spandex/unitards to Six Flags back in the day? Man, they were everywhere. I mean these people came.to.play. And I feel bad saying it but it was always the people that really shouldn't have been wearing spandex. These are the people that would ride the Log Ride like 12 times and be soaking wet and then I was the lucky girl that was next in line behind them at The Runaway Mine Train and had to sit on a warm, wet seat that smelled like a foot. You remember this right? Yeah, anyway, I guess that's why they wore their unitards to Six Flags, great for the Log Ride...it just wicks that moisture right away from you and on to everyone else.

Anyway, I am digressing. Back to Ella and her spandex, they are so tight and are kind of like a little skirt that is sown a little between the legs so they're not really normal shorts. She is supposed to wear them as much as possible every day. They are called Hip Helpers and they're supposed to help her crawl more up on her knees like this...

Instead of like this where her knees are flat on the floor.

She definitely can get around fine and is getting pretty fast crawling with her legs flat but we would really like her to get up on her knees. I think she crawls with her legs out flat to compensate for her left arm. It takes a lot more upper body strength to crawl on your knees so she hasn't been doing it and has just figured out a way to get around that's easier. She's a smart one. She does this funny little hop/crawl thing but hopefully with her Hip Helpers she will get used to being on her knees and that will help her keep her legs under her more and build more upper body strength, especially in her left arm. The first couple of times she had them on she would just sit in the middle of the floor and not crawl at all or she would only crawl a little bit and then just lay down and cry. But now she doesn't seem to mind them so that's good.

2. Other than that, she is doing well. Feedings are going about the same and feeding therapy is going well. Yesterday in feeding therapy she ate two green beans, a few bites of a banana and a few pieces of freeze-dried fruit. That was the best she's done, volume-wise so that was encouraging. We are just continuing to work hard to make feeding a positive time and include her as much as we can during family meal times. It's not always the usual dinner scene like at other people's houses unless dinner at your house involves lots of cheering and clapping and someone occasionally gagging and vomiting at the table. Anybody want to join the Carder's for dinner? We'll save you a spot right next to Ella. :) Anyway, She is making good progress and we're really proud of how far she's come this past year. It's kind of like two steps forward, one step back with this whole feeding thing and I'm really having to give it to the Lord because it is very overwhelming at times. A week or two ago I was falling apart and just felt so overwhelmed, sad, and angry but this week I'm back on the horse and doing much better. I have weeks like that every now and then and I think it's because I start thinking more than one day at a time and I want things to get better faster and I start thinking I can fix things. If I think ahead more than one day at a time I get COMPLETELY freaked out and fall apart. So, one day at a time is all I can do and I have to remind myself that Ella belongs to the Lord and not to me and He has great plans for her even when things are not going the way I think they should.

3. In other news, we went back to Scottish Rite for another check up on Ella's arm and they were very pleased with how things are looking and progressing. They are just amazed at how she is moving her arm and felt like they don't need to see her for another 6 months! Woohoo! She's working hard in OT and PT and is making good progress, her arm is not as tight and stiff as it was so that is good news. Until our next appointment we'll just continue to work hard with her and her amazing therapists and see what happens.

These are her two main surgeons at Scottish Rite, Dr. Oishi and Dr. Ezaki. They are amazing! The Lord has definitely given them incredible wisdom and skill and we are forever grateful for how they have used it to help Ella. They are life-changers!

4. The Rickster turned 32 this month so we had a family outing to Chili's. It was fun and Ella loved the Molten Chocolate Cake. However, the public was apparently not loving the fact that I was feeding my little baby bites of ice cream and cake because I got several stare-downs as I would happily give her a bite and cheer for her because she actually swallowed and didn't gag. I forget that to others who don't know her, Ella looks like she's probably 5 or 6 months old because she's so small as opposed to 13 months so people thought I was feeding my 5 month old baby cake and ice cream. Oooh, if they only knew the half of it they would be cheering right along with me because as long as she's eating we don't care what it is.

The birthday boy with his girls

5. This last week Rick and I went to a conference in Austin while both our moms came and kept the girls. It was soooo great!! We haven't been able to do anything like this in over a year so it was great to get away for a little bit. No therapy, no feedings, no responsibility for children. Awesome. Our sweet moms are amazing and they took care of Ella's therapies, feedings, getting Eva to school and other appointments. Thank you, Thank you!! They kept things rolling for five days while we were gone and even took Eva to the zoo and all four of them took in a little air show close to our house. They are super-grandmas!! I didn't worry one bit while we were gone, if anything I felt a little bad that I was just living it up while they were working so hard for us. We are so blessed to have such supportive families who are willing and able to help us so much. We don't take it for granted and we are so thankful for each of them. We are so blessed.

Who are these people? Don't we look relaxed? :)

Thank you all for your continued prayers, help and encouragement. Days are still hard but the Lord is continuing to give us strength for the journey in so many ways. He is faithful. Please keep praying for us!

13 Months Old

13 months people. 13 months old...unbelievable I tell you. I would say time flies when you're having fun but I wouldn't say times are so fun around here or that time is flying. Mrrrr...Mrrrr. I know, Debbie Downer strikes again. Things have been a little rough so I haven't been blogging because a) our daily schedule is crrraaazy and I haven't had time and b) honestly, I've just been a tad bit overwhelmed and in a foul mood. I know that attitude is a choice and I definitely was not choosing to be very joyful, I admit that, but sometimes I just get tired of all of this and trying to stay positive all the time. Things are still very hard and although Ella has come a LONG way, there is still a LONG way to go and it's just overwhelming at times. Trying not to complain here but I'm not good at sugar-coating things so I'm just being honest.

The past couple of weeks we've been transitioning Ella from Enfamil A.R. to a higher calorie formula, Nutren Jr., in hopes she would tolerate it well and we could spread out her feedings as well as not have to give her as much at each feeding. This plan has not gone well. She does not like the Nutren Jr. and refuses to take any of it by mouth and fights you the whole time. So we went from her taking some of her old formula by mouth, which over the past year we have worked really hard to get her to do, to her taking nothing. Zero at every feeding. This was very discouraging for me because this was not the direction we needed to be heading. In addition to not eating she was also vomiting after almost every feeding as well as in the middle of the night. Awesome. So needless to say we needed a new plan. We had an appointment with her GI doc and laid it all out for her and told her we're coming close to being at the end of our rope with this whole feeding every three hours thing. I mean really, she's 13 months old and we're still on a newborn feeding schedule! Killin' me here. I understand why it has to be this way but still, it's killing me. To clarify, the reason Ella has to be fed every three hours is because she has a small stomach and is not able to tolerate large volumes so we have to feed her less volume more often until she can tolerate more. Also, she is very small for her age so she needs all the calories she can get.

Anyway, the doctor said to go back to feeding her Enfamil A.R. by mouth since she did okay with it and to put the higher calorie formula through her g-button. It makes feedings a little more involved but this plan works much better. So we're doing a combination of both formulas and she told us for mental health reasons to just skip one feeding a day to give us all a little bit of a break. It has helped and Ella is not vomiting like she was and she's doing better taking some formula by mouth so that is good. Now we have to calculate how much she's taken by mouth, subtract this and that, multiply something else and voila'...we come up with how much of the higher calorie formula she needs in her feeding tube for the rest of the feed. And this happens every three hours still during the day with feedings taking close to an hour so do you see why I miiiight be going crazy? Where are my plates when I need to throw something???

Enough about that, in other feeding news Ella is continuing to make good progress in feeding therapy. She is doing much better eating meltable solid foods like puffs and has pretty much mastered that without much gagging and vomiting. Yea!! It still happens but her gag reflex is getting much better and she is able to recover more often after a gag these days and not lose everything which is really good. I'll spare you the gagging and vomit talk this post since you got an ear full last time. You're welcome. Anyway, this past week we have been trying soft foods like cooked pasta, diced peaches, etc. The other day she ate three bites of mac and cheese! AND, she really likes ice cream! I mean a little cookies and cream with double chocolate sundae syrup never hurt nobody...shoot. Funny how this works isn't it? I never would've given Eva spoonfuls of this when she was 13 months but with Ella we don't care what it is as long as she'll eat it. Nice, I know.

Dinner of champions my friends. Maybe this is what we should be putting in her feeding tube to pack on the pounds. Brilliant idea if I do say so myself!

She's so funny. She would just smile every time Rick would offer her a bite. Don't know why I'm surprised because who isn't in a better mood when they're eating ice cream?

Last week we also had Ella's follow up appointment at Scottish Rite and it went really well. They were very pleased with how she is progressing and that she is crawling. They released her to go ahead and start therapy so we have started back with occupational and physical therapy. She is using her left arm more and more but it is still pretty stiff and tight but with time and therapy things will get even better which is encouraging. We're not sure what her range of motion will be but we're going to treat her as if she will have full range and just see how she does with everything. We have great therapists with ECI that have been working with Ella for the last year leading up to her surgery and they will continue to see her so we're glad about that. They are awesome and we're so blessed to have them. We'll go back for another check-up in the middle of this month to see how things are going so we'll just keep on keepin' on.

Now that we've started more therapy our weekly schedule is very full and we have something almost every day and there are some days where we have two sometimes three appointments in a day for Ella. It is exhausting but we feel very blessed to have great doctors and help for Ella. I'm getting used to the new schedule with feeding therapy twice a week, OT and PT both once a week, dietician once a week as well as other random appointments. It's hard but I know it's going to help her and it will not always be this crazy. But, this is still a marathon we are in and we realize to keep sane we are going to need some extra help. So, the good news is is that a friend of ours from church is going to help us by coming a couple of days a week to help me take care of Ella during the day. She will start this week and once she feels comfortable and we have everything worked out it will allow me time to be able to leave the house, run errands, etc. which I haven't been able to do unless there was someone to keep Ella. We are very thankful and excited about her helping our family so that is a praise.

Other than that things are okay. Eva's doing well, been a little under the weather this week but doing well. Ella is doing and saying more things everyday. She started clapping this week and tries to mimic different words and sounds. I won't bore you by listing the things she says but she is going to be our talker I think. She is continuing to gain weight which is a miracle after the past week or so of feedings being hard and her vomiting so much which is a praise. She weighs close to 16 pounds now! So exciting AND she is actually on the charts now for her length and head size. Barely on the charts but still it shows we're moving in the right direction. Yea Ella! She's crawling everywhere and is getting faster, we can hardly keep her contained. She doesn't want to sit in her chair during her feedings anymore so we let her crawl around to keep her happy while she's hooked up to her feeding tube which is fine but it makes things a little wild. You can't leave her unattended because if she crawls away from her I.V. pole then the feeding tube gets stretched too far and ends up getting pulled out of her g-button and then you've got milk going everywhere. Lovely. So, we have to follow her around the house with her pole to make sure everything stays in tact. She has a little backpack that was made to hold her feeding pump, bag and tubes but I tried it on her the other day without anything in it and she did a face-plant sooooo obviously that's not going to work. So, if anyone has any spectacular on-the-go feeding tube ideas for crawling little babies besides following one around with an I.V. pole I would gladly welcome them. :)

Silly Eva...she dresses herself everyday. Stellar combo isn't it?

I promise that I really do feed my children. Eva is Miss Constant Snack Attack and I don't know what Ella thinks she's doing in the refrigerator because the girl is fed around the clock whether she's hungry or not. And of course, her little friend the I.V. pole is never far away. I need feeding tube backpack ideas asap people!

Fun with Daddy

By the way, anyone out there still watch Survivor? What is up with this Russell guy?? The dude is nuts. Can't wait for it every week!