Tuesday, October 27, 2009

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 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 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!

Saturday, October 3, 2009

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!