Saturday, July 25, 2009

Update on Meeting with Surgeons

Amy Funk here. I'm feeling the funk creeping around again and think I could be on the verge of being in one but I'm saying no to the funk. Not gonna do it. Really I think what it is is that ever since we met with Ella's surgeons on July 16th about her surgery things have gotten more real and I'm just a taaaad bit more emotional. Had a big breakdown the other day and was doing the ugly-cry on sweet Rick's shoulder while he just calmly talked me back to my senses. Feels good to have a good cry every once in a while ya know? So I had my snorting, sniffling cry and should be good for another week or two and poor Rick just ended up with a wet shoulder. :) He is so sweet and is just the most amazing husband ever. I'm so blessed to have him.

I've been meaning to update for awhile now on our meeting and about surgery details. Thank you so much for the prayers, phone calls, emails and texts that day, it was so encouraging. So many of you have been so sweet to ask about how things went and your support means so much to us, thank you. Overall it was a very positive meeting and we feel good about the doctors and their plan to help Ella. With that being said, the surgeons were also very up-front with us that the problems with Ella's shoulder are very complicated but at the same time fixable. They were very pleased with the images they got from the MRI and CT Scan and feel like it has given them a good road map for what Ella's shoulder looks like, where bones are, blood flow, etc. I'm not a medical person so it's hard to explain what all is wrong but there are just lots of bones that are not in the right place or attached correctly, the main ones being her shoulder blade and collar bone. There is also some strange blood flow which is one of the main complications to the surgery. Basically, they are going to have to build a functional shoulder for Ella and do a lot of moving around of bones and reattaching of things. Despite all of the problems though, they are very pleased with the function she has in her left arm right now. This was good to hear because we have really worked hard in PT to get her moving that left arm and get it strong for surgery. Yeah Ella! Right now she has limited range of motion in her arm and neck but they are expecting that to improve once things are in the right place. They told us not to expect complete range of motion but to expect better range. They are going to do their best to create a normal looking, functional shoulder but told us to be prepared that it might not look exactly like her right shoulder or even be level with it. So, we don't really know how to prepare for what it will be like, look like, or what she will be able to do after this is all said and done but we have peace in knowing that to help Ella, this has to be done. We believe the Lord is in control and that with Him all things are possible so we're expecting blessings from this.

Even though we believe the Lord is holding little Ella in his hands through all of this it is still very hard to know something is wrong with your baby. Do I wish things were different? Yes. Am I scared? Yes. But, He is faithful and we are just taking all of this one day at a time knowing that there is still a very long road ahead and He will continue to be there every step of the way. It was very surreal sitting there listening to the surgeons and looking at images of your child's bones and blood vessels and seeing that something is very wrong. Very informative, interesting and at the same time overwhelming. I kept thinking to myself, "How did I get here? Is this for real?" and "I think I've heard enough and need to leave now." :) We were there for several hours and saw three of the main 5 surgeons that will be a part of Ella's surgery. Ella's primary surgeon has pulled together an amazing team of surgeons and in addition to the 5 there will also be numerous others who will be assisting and observing. So, needless to say there are a lot of people involved here and we are thankful that they are pulling in the best of the best to help Ella. I am listing the names of the surgeons and would ask that you be praying for each of them and that the Lord would use the talent and wisdom that He has given them to the best of their ability to help sweet Ella.
Dr. Ezaki-Ella's primary surgeon
Dr. Roden-Pediatric and vascular surgeon
Dr. Weprin-Pediatric Neurosurgeon
Dr. Oishi-Plastic surgeon
Dr. Herring-Pediatric Ortho
Thank you for your continued prayers for our family. We feel so loved and supported by all of you.

To explain a little more, I thought I would just answer some commonly asked questions about what to expect for her surgery to help inform everyone.

Q: When is her surgery?
A: Surgery will be August 19th. We will be admitted to the hospital on the 18th and will spend the night there. We don't have a definite time of day that surgery will begin yet but we're assuming it will start early morning.

Q: How long will surgery be? Will it be one surgery or multiple?
A: We're not sure. The doctors said that it could take anywhere from a few hours to all day. They don't know so to be prepared they have reserved the operating room for Ella all day. Yeah...all day, kind of makes me want to throw up. They are planning to do the repair in one surgery. They indicated that if there was a need for surgeries in the future that they would be minor or cosmetic.

Q: How long will she be in the hospital?
A: They said they expected her to have a 3-4 day hospital stay. I'm not banking on that but we'll see. I'm expecting longer but what do I know. Even if it's a week or more, that's nothing compared to our 2 1/2 month stay in the NICU.

Q: Will she have a cast?
A: From what I gathered, she won't have a cast but they will use some type of wrapping to keep her arm immobilized and she will wear that for 3-4 weeks. After that we will go back to Scottish Rite and they will take it off and make plans from there with regards to therapy, etc.

Hope that helps! Again, thank you so much for your constant support and care, we couldn't do this without such faithful family and friends. Be praying that little Ella stays healthy, surgery is 3 weeks from Wednesday. Crazy! Pray for peace for our family as we anticipate this hurdle. We'll update as we know more. Thanks so much!

Tuesday, July 14, 2009

Public Pool Rules

Okay, so the other day I got to go spend some time BY MYSELF at our community pool. I don't know when the last time was that I actually got to hang out by the pool without kids but Eva was gone visiting my parents and Rick being the sweet husband that he is kept Ella so I could go. Anyway, it was much needed and I was excited because I love the sun and plus I love to people-watch. I mean is there a better place to people-watch than at the pool? Maybe the airport but the pool is prime and guarantees great material. In the hour or so that I was there I noticed several things that were funny and have nothing to do with standard public pool rules but are just more socially awkward/funny things that I think should become part of the public pool rules list.

1. Swimsuit attire and the obvious lack of a third-party opinion

Now, this has nothing to do with the size or shape of a person but more to do with style and fit. Have we all not seen enough episodes of TLC's What Not To Wear and heard Stacy London hammer home the point that fit is everything? You would think, but apparently some of us are not getting the message. With that being said, I realize that there are at times extenuating circumstances where a person does not have access to a swimsuit that fits well, like maybe they forgot their swimsuit and had to borrow someone else's. Believe me, I have totally been that girl on the family vacation who forgot her swimsuit and in desperation had to borrow her mom's navy and white polka-dot swimsuit with the built in skirt. Remember those? Awesome. And this, my friends, did not happen in junior high where it's pretty much a guarantee that you're going to be awkward, because who isn't awkward in junior high, but this happened my sophomore year in college. I would like to say that I learned my lesson but no, it happened again just a couple of years ago and this time instead of having to borrow my mom's swimsuit, I was desperate enough to borrow my friend's mom's swimsuit. Not kidding. So hear me when I say I understand why people might be wearing a swimsuit that defies the style and fit rule. I get it.

However, this rule should still be put into full effect. And possibly the more key component here to this rule that people ignore is the third-party opinion. This is important folks and I'm realizing that in my people-watching that many people seem to be lacking the opinion of someone besides themselves when choosing a swimsuit. Obviously. OR, or maybe they did have an outside opinion but this person has amazingly skewed judgment when it comes to swimsuit style and fit and therefore is of no help in choosing a swimsuit. Who wants to be the person everyone is looking at and thinking to themselves "somebody liiiied to her!" No one. And also, a side-note about the third party. The opinion of the third party needs to be relevant to the times. If you were given approval for a certain swimsuit in 1984, that approval does not still count for that same swimsuit in 2009. Are you picking up what I'm putting down here? That's right, it's time to get a new suit and opinion. The third party opinion should happen every year before swimsuit season and preferrably at the time of purchase.

Okay, enough said. I think we all get the point that fit is everything and the importance of the third-party opinion. It's key people, key.

2. Music

Whatever happened to the mix-tape? Man, I loved those things. I know, now days it's called an Ipod but apparently there are still some individuals on the scene that do not share my love for mix-tapes at the pool. While I was there it was all Justin Timberlake all the the time coming from this person's big yellow boom-box for all to hear. Now, I'm down with a little JT...but every Justin Timberlake hit ever? It's a bit much don't you think? Let's mix it up yo. And I think what was more funny to me about this particular situation is not so much the choice in music but the person/music choice combo. You know how you expect a certain kind of person to listen to a certain kind of music? Such is the case here. I don't know what I expected to hear from this person and their big yellow boom-box but a collection of JT hits was definitely not on my list of possibilities.

Lesson learned, mix-tapes are a good idea at the pool.

3. Splash magnet

Why is it that I can be as far away as possible from people in the pool and they decide that they need to get out or get in the pool 1 ft. from where I am and splash me while doing it? Good night! I mean there are miles of open water to swim in, jump in, splash in whatever, away from people. But no, apparently these people feel the need to do a cannon-ball right next to me regardless of the fact that I am obviously just in the water to cool off and I'm not there to get completely wet. Read the social cues people, c'mon. It never fails, every time I go to the pool, which isn't often this happens. There can be 3 people in this huge pool but where ever I am is where they choose to flounder around. Seriously, I don't get it. What I do get is that the pool is THE place for teachable moments in social awareness. You want to teach your kids about social awareness? I'm telling you, take them to the pool, it won't disappoint.

Lesson...easy on the splashing and for goodness sake do your cannon-balls and jack-knife away from others, it's just common sense.

4. Hawaiian Tropic Dark Tanning Oil

It's perfectly normal to see a girl sitting by the pool soaking up some rays or a group of girls, a mom and her small children, a dad with the kids...any of these combinations does not raise the crazy flag. However, a guy...alone...laying out with his bottle of Hawaiian Tropic Dark Tanning Oil? Gettin' the crazy vibe on this one. I don't know but that's just funny to me.

Wednesday, July 8, 2009

10 Months Old

Ella is 10 months old and I can't believe it! I know I say I can't believe it every time as she turns another month older so just know that next month I'll say the same thing, but really I can't believe it. Here it is July and next month she'll be one!! How did this happen? It's been a crazy 10 months but she is such a little joy and is definitely our strong-willed-child-with-a-smile. You know, these are the kids that are strong-willed and kind of fool you because they have a huge grin on their face the whole time so you don't realize they're strong-willed. That's Ella, strong-willed-with-a-smile. She's a feisty one and even though she's tiny, she can hold her own. She is sitting up now on her own and we're so proud of her. She is rolling to get to where she wants to go and pushing herself up on her tummy comes very easily now. Physically she is much stronger and is very active which is exciting to see. She isn't crawling yet and I don't know if she will but we are working on that and she is doing better during each of her PT sessions.

Feedings are still about the same. Some days are good meaning she maybe takes half of her bottle and some days she will hardly eat anything which is always awesome. She hasn't been doing very well with baby food lately either but I think the whole teething thing is really affecting her. She has three teeth now and I can feel two more that about to pop up so I think that could be bothering her or at least in my blame-storming sessions to come up with a reason this so far is the best option so we'll go with teething being the reason, makes me feel a little better. :) But, that's just how it goes so we're doing the best we can. Ella is doing well overall and we are seeing progress even though it is slow. She probably weighs close to 13 1/2 pounds now which is great for her but is still extremely small for her age. We are doing the best we can to pack on the pounds but it's very hard when she just can't take in much volume. This would be why we are still on a newborn feeding schedule at 10 months old and having to feed her every 3 hours around the clock. Brrruuutal! Seriously, can someone throw me a bone here? Soooo, I just continue to put on my song and dance everyday, every 3 hours to try to get her to eat so if anyone needs a good laugh, show times are daily starting at 9,12,3 and 6 pm. I'm just a one man show, a triple-threat I like to call myself if you will because I sing, dance AND act. Pretty fantastic, whatever it takes right? Other than that, Ella is very happy, smiley and loves attention. She is such a blessing to our family and we are so thankful for her.

In other big news, we have a date for her shoulder surgery. Crraaazy! The surgery will be August 19th. We are very glad to have a date set but now that it's almost here when I think about it I get a lump in my throat and my stomach turns so I find myself not wanting to think about it. We are meeting with 3 of the 5 surgeons next week on July 16th to discuss MRI results and hear their plans for surgery. We have a lot of questions so this should be a very informative meeting. We have been told numerous times that these surgeons are the best of the best for this so we are so thankful that we live where we do and are blessed to have such amazing care for Ella. We'll update when we have more details next week. Thanks for your continued prayers on this. This is a big deal and something we have been working towards ever since Ella's birth so keep the prayers coming. Once we know more next week I'll be able to have more specific prayer requests but for now please pray that Ella stays healthy and continues to gain weight.

As for Miss Eva, the girl is one hot mess. She is always up to or into something. She loves Ella and is so sweet with her. This is kind of a sad but also funny story and just gives you an idea of our reality here. Whenever she is playing she pretends alot with her dolls, you know dressing them, taking them places. Well, whenever I ask her where she is taking her babies she either says a) to the doctor or b) to church. There you have it, our life in a nutshell, we are either going to the doctor or going to church. Amazing. Oh no, it's not to wal-mart or grandma's house, it's the doctor or church. She does this a lot but I just started thinking about it lately and how this is always her response. Even though I know how hard things are with Ella affects her she is rolling with the punches extremely well and is just the best big sister ever. She's even learning how to semi-work Ella's feeding pump and when it beeps she knows which of the nine buttons to push to turn it off. Normal? No. But I know that through all of this the Lord is preparing her little heart for his amazing purposes and having a sister like Ella is going to help her know her God in more intimate ways and for that I am so thankful.

And back to her getting into things. This is what she was wearing the other day when she got up from her nap. Obviously, someone did not take a nap. I don't know where she thinks she's going...actually I do, probably one of two places.

And here is what happens if we leave the bathroom door unlocked.

Lotion anyone? FYI, this did not happen on my watch. Aahh, fun times with dad. :)

More to come!