Let's hope she doesn't eat too many Little Debbies in her life

Emma is the non-exerciser of the family. She's the kid who will totally be trying everything she can to get out of P.E. when she starts school because running is harrrrrrd. Due to her disgust with anything that deals with exerting herself past her comfort zone, I was quite amazed when she asked if she could walk on the way to the park yesterday instead of maintaining her usual seat in the wagon. About half way to the park, she put her hands on her forehead and looked at me in horror...

Emma: OH NO! My face! It's wet!
Me: Yes hun, that's sweat. It happens when you exercise.
Emma: I don't like fweat. I wanna ride in the wagon again.

That's my Emmabear. That's the girl I know.

Words from the not-so-wise

90% of the time, the stinky smell in the kitchen can be traced to a nasty potato in the tater bin.

90% of the time when it is quiet in the house, the kiddos are most definitely up to no good.90% of the summer, my hooligans run around half naked. Maybe its a southern/redneck thing...maybe it is just because it is so dang hot these days that we ALL wish we could run around half naked. The world may never know the whole truth.

Morning Ritual

A Georgia weekend

We ventured a little to the north for the weekend and spent a few days with some precious friends of our's. Jon and Amada Mizell hosted our family and the Michael and Dana Hataway family for the weekend, and we had more fun that can be put into words. All told, there were 7 kids hobbling around, with Abby being the oldest. 4 kids in diapers sure did make for one smelly changing area.
I kinda grew up around Amanda and Dana and remember running around and playing with them when we were younger. To see our kids now running around and playing while we sit in the kitchen and talk and drink coffee is pretty strange. Oh my, did we have fun this weekend! There was constant commotion with the kiddos as they systematically pulled out every toy in the house and ran around like hooligans. We just laughed at the chaos and enjoyed seeing them create bonds with eachother that will hopefully last a lifetime. The kids played really really well together. Abby spent a good part of the weekend at another house playing with a precious 6 year old girl who is the daughter of another dear friend from my childhood (hence no pictures of her), so we pretty much had the 3 and under crowd with us.

Jon and Amanda were wonderful hosts and fed us some incredible food, and the company with them and the Hataways was a blast. After the kids were in bed, we talked and laughed until our cheeks hurt. We stayed up into the wee hours of the morning and are still hurting because of it, but it was so worth it. We promised to continue this tradition and get together at least once a year from now on. I miss you guys...thanks for the fun weekend!!

There should be an entire blog post on "The many faces of Audrey". Oh, this girl reminds me so much of Emma at that age. Spunk and personality just pouring from her. She calls every motherly-looking person "Mama", and I couldn't help but melt when she would throw her arms up for me to hold her and just lay her head on my shoulder. Sweet, sweet little Allie...she has the cutest little smile and laugh, and she is just so precious. I could eat her up!Joshua...he is the happiest little guy (when he isn't itching from skeeter bites). I LOVES me some Joshua snuggles. He is teaching Nathan how to say "Dada". Seriously, don't you just want to snack on those thighs of his?

Little man James is a hoot! He cute little raspy voice melts my heart, and those dark eyes are gorgeous. I loved to run my fingers in his professor hair.

Of course I didn't get any of all of the kids together or hardly any of the adults. Oh well...there is always next year. :)

What a week!

We have been brought down to our knees with humbleness and thanksgiving a couple of times this week as God has used dear friends to show us that He is still in control and watching over Nathan and our family. During times when we are praying and searching for guidance, it is incredibly comforting when God seems to show us His will in certain situations.
Through the generosity of others, the decision has been made that Jay is indeed going to accompany Nathan and myself to Houston in the fall. We had originally decided that he would stay home and keep the girls since Abby will be in school, but it is such a relief to me that he is going to be coming with us now. This will make the trip a lot less stressful, and it will give an extra set of ears (and arms for wrangling Nateman) at the appt. I am so happy that he is coming!And also through the kindness and generosity of others, we now have a pediatric pulse oximeter. This was something that we were supposed to be getting soon, but due to the emotional exhaustion of all of this oxygen talk, I have not called the nurse back to purchase the pulse ox. I couldn't help but tear up when I opened the mysterious box last night housing the pulse ox. We really needed it.
After quite a few spot checks on Nathan over the past day, our suspicions are showing to be true...the little guy seems to desat when he is active. I have seen a couple of 91 readings right after activity (when he is retracting deeply) and an 88 that I think was accurate because his heart rate was pretty high at the same time. There are times when it gives a low reading that I think is a false reading because his heart rate doesn't coorelate to the decrease in oxygen, but for the most part, it does look like he is indeed desatting when he is retracting so deeply. At the same time, he comes back up to 98/99 rather quickly when he sits still for a few seconds.
I am keeping a log of these events and readings, and I think this can help us all make the decisions on the best treatment route for the little guy...and help ease my and Jay's mind about whatever route his doctors think is best. We are so very thankful for the means to this information.
Nathan had an appt with the dietician this morning, and she went over some ways to help plump the fellar up. Nate is officially on the anti-weight watchers diet, as we are trying to fatten up every ounce of food he consumes. Our ammunition consists of heavy whipping cream, ice cream, carnation instant breakfast, lots of butter, and other calorie/fat boosters. The dietician said that Nathan needs to get up to 22 pounds without getting taller to get him where he needs to be weight-wise right now. Currently, he is around 20.4 pounds. I offered to give some of the fat hugging tightly to my thighs, but she didn't seem to be gung-ho for that idea.We are heading out tomorrow morning to spend the weekend with some of our dear friends. There will be 7 kiddos, with Abby being the oldest...it should be interesting. Of course, I will have tons of pictures when we get back.

Editing: Phun with Photographs (Cheesy? Yes, I think so.)

Sometimes I draw little faces around the girls' belly buttons and then squish their actual belly button up and down so it looks like the drawing is singing. It's definitely a sure-fire way to brighten the stinkiest attitude. After our belly concert the other day, the girls took it upon themselves to draw on every other body part that was visible while I was cleaning the kitchen and out of sight...and then we had to rush out the door to somewhere. Right before we left and I sat open-mouthed at the penned mess my girls had become, I secretly wished that I had one of those erasers on photoshop where I could digitally remove all the imperfections the girls had created on their skin. It was right after that moment that I realized that I did have such an eraser...but it was called soap and water. However, the photoshop tool would have been much faster.

Editing is a blast!! You can create so many different moods and "feels" to a picture by just changing your editing techniques. A few small intros: I use Photoshop CS3 for editing. I started out editing on Paint Shop Pro 9.0, and I think that it really helped ease the transition to Photoshop because it taught me the different terms and tools. I have also heard great things about Lightroom, but I have never used it. Photoshop is my gal for editing.

One of the biggest helps with editing is getting the original picture (straight out of the camera: SOOC) to get as close to the colors and light and exposure that you want. Then, with just a few tweaks in the editing process, you can have picture that achieves your final desired look. Personally, I do not use the same process for any of my pictures. I do use actions (I'll talk about that more later), but I always tweak the pictures quite a bit after I run the actions. I usually always play a little with the curves, levels, color balance and contrast. I also usually burn some parts of the pictures, usually the edges (ever so slightly). I also use the little band-aid thingamabob on photoshop to get rid of unwanted boo-boos, boogers, and dried food from lunch. It works wonders for wrinkles and pimples as well. Finally, I sharpen all of my pictures just a little to help the picture become a teeny bit crispy (know that these are just crazy terms I've made up or picked up from other photogs along the way).

Actions: actions are steps in editing that someone has recorded and saved so that others can use the same series of steps in usually one click. Actions are usually purchased from the actioneere (another made-up word). They can usually be run using Photoshop and/or Lightroom. Actions are like gold! I love them because it cuts the editing time in half. I have purchased a few action sets throughout the past couple of years, but I tend to only use a few of them. My favorite actions are the B&W Actions and Substantial Actions by Light on Kids and the Color Set Actions by Lily Blue (love these for beach shots). I love these because they give great effects and are so easy to manipulate for your own liking.

Here's a run down of what I do with some of my shots...

Nathan: sooc (straight out of camera)

First, I cloned in some grass in the upper left corner, used the band-aid tool to get rid of the scratch under Nate's nose, get rid of the stain on his shirt, and erase some of the dried yogurt particles around his mouth. I then ran the Light on Kids Color Pop action and changed the opacity on that action to my liking. Then played around with the curves and color balance, highlighted the catchlights in his eyes a little, and burned the edges just a tad. Voila!
Same pic...ran the Light on Kids Vanilla Medium B&W action and tweaked the opacity quite a bit. Played around with the curves and burned the grass a bit more:
Second verse, same as the first...used the color-pop version and added a second action: Lily Blue's honey...manipulated it a bit to get the look I wanted. Added a bit more contrast, darkened the curves a bit, and burned the grass even more. This version is my favorite for some reason. I love the hazy look it gives.

Emma: sooc

I love just expirementing on different shots and playing around to get different looks than what I am accustomed to creating. This picture was one of those adventures. And to be honest, I could not tell you all the steps I took in achieving this look below and could not replicate it if I even tried. But if I remember correctly, I added color with Light on Kids color pop, tweaked a bit, ran Lily Blue's honey action, tweaked (curves, levels, etc), ran Lily Blue's Haze action, tweaked (curves, color balance, etc) and burned different parts of the picture. I also erased a few of the eye sores (a stray seaweed pile here, a few shells there).
Someone once asked me if I was always having to erase things in the background of my shots or if I just never shot pictures with any "eye sores" in the background. Truth be told, after shooting over and over and over again, you train your eyes to see the entire frame before you click the shutter. You know everything that is in the background. If there is something that is an awful eye-sore, you either move it out of the way or move to reframe the shot. But, if there are minute things in the shot that are taking attention away from the subject, you can usually get rid of them in the editing process.

A weed thingamabob that I am pretty sure has a speck of Whoville on it (don't mind me, the kids and I went to the free theatre this morning and saw "Horton Hears a Who"): sooc.
On this shot, I added some color pop, tweaked, and cropped it in quite a bit. I then added two different texture layers by Beth Armsheimer Textures, which adds a fun little effect to the picture. Textures are fun to play around with, but they can either make a picture look really cool or really bad. It sure is fun to learn how to work with them though.
You can even spice up a picture from a point and shoot camera pretty easily by editing it. This pic was taken with my Sony Cybershot Point and Shoot when we were at Marco...sooc:

I played with the curves and contrast of the picture a bit and then ran the Light on Kids Vanilla Medium B&W action. Tweaked some more, got rid of the dark plantlife in the background (takes attention away from the subject), and highlighted the catchlights in her eyes. I love this picture because that is so Abby...
Here is a cropped version of that same pic, where you can see her adorable freckles and scrunched nose even better. Love that kid.
In the end, editing is just a matter of preference. No two people edit the exact same way, and it is very difficult to replicate someone's editing style...mainly because we don't really know all the steps we take to get a photograph to look a certain way. After you get used to the different steps of editing, you just move through without really thinking about what you are doing, but focusing on the finished product in your head and stopping when you reach that point in the editing process. It's time consuming, but it's such a fun process and really sets you apart from others by giving you a certain style and look. I highly recommend trying to learn how to edit your photos.

What to do when it's hot as Florida outside...

It is quite true that in order for a mother to keep from hanging her children from the ceiling by their toenails by the day's end, she must take them out of the confines of the house every now and then to refresh and let them run off the excess energy they have been storing up through the summer. It always helps when she takes such a day trip with a motherly companion who can give advice on the best ways to string kiddos up by their toenails...you know, from experience in her own house and all. These two mothers can then converse about anything other than the latest episode of Max and Ruby, why so-n-so decided to write their name in toothpaste on the bathroom mirror, and why someone decided to pull apart all the matches of socks and string them across the room...for fun. Instead, we talk about the other topics in life: religion and politics. You know, what most moms talk about, right?
My good motherly companion, Rachel, and I decided that Friday was the best time to get out of the house to refresh from the week and more importantly, to bide quite a bit of time while counting down the hours until the husbands were home for 2 solid days and could run interference. It worked, as Friday ended up being one of the more fun days of the week, and Rachel and I made a mental plan to do this every week.

Duck, Duck, Goose:

We decided to try a mini-waterpark thingamabob in a nearby town...mainly because it had our favorite word attached to it: FREE. Other than the fact that our kiddos all ingested an absurd amount of bleach that gave them all a pass on baths for a couple of weeks, they had a blast! Rachel and I found a nice patch of shade and just reveled in the fact that our kids were in a gated play area with no horrible risk of drowning...we could relax and enjoy the water moment for the first time all summer.

Emma eating a snack with the best utensils money can't buy:

And this one has absolutely nothing to do with the water park, but I just love it...and am planning on writing a photography "editing" post surrounding it later on this week. Stay tuned...

Some day I'm going to miss that itty-bitty voice

Emma has reached the point in life where her parents secretly stash away duct tape in all hidden corners of the house to have handy for periodic mouth tapings. Dude, that girl can talk! I used to shake my head in defeat when passers-by would give me a sympathetic glance and say "Phew, you sure have a talker on your hands." as they were referring to Abby. "Yes, pray for us all!" would be my reply sometimes. That girl loves to talk!

And then Emma came along and learned her sister's mode of non-stop communication. Personally, I think Emma talks almost twice as much as Abby ever did. In fact, this is supposedly the girls' "quiet time" as I type this, but I hear them just chatting away with one another...more than likely playing "Mommy and Baby" or "Salon" or "Grocery Shopping". From time to time, the Mama (okay, that would be me. And yes, I sometimes like to refer to myself in third person attire) almost blows her top and firmly requests that "everyone be quiet for just 10 minutes so I CAN THINK!" That's about the time when the duct tape comes in handy. We've tried and failed many times at the "Quiet Game" where the one who stays quiet the longest wins (man, I hated that game growing up). It is usually interrupted within about 30 seconds with a cough or moan, to which the other one immediately starts boasting "HAHA! I won!! You loooooooooose!" Rinse and Repeat...many times in a row.

But amidst all the constant noise around, I do love hearing these little voices. I would probably appreciate those voices more if they took breaks from time to time, but I still love them just the same.

Make an on-line slideshow at www.OneTrueMedia.com

On a side note, Hailey was released from the hospital. This was essentially a fast-track to be able to see a neurologist without having to wait weeks for an appt. He set up a plan for Hailey to have an MRI, EEG, and a ton of metabolic labs for the next time she is sick. Sounds cruel to poke a kid for bloodwork when they are sick, but these "sick labs" show how the body responds to stress and is able to see the function of metabolism/mitochondrial function better than when they are well sometimes. Keep little miss in your prayers...she's a trooper, that gal.

Prayer requests

Okay, so I didn't expect to give 2 tough posts back to back, but I wanted to ask specifically that you all pray for the two I am about to tell you about...

My sister (Ashley) called me yesterday afternoon saying that Hailey (my niece) was being admitted to Cincinnati Children's Hospital this morning with a plan for metabolic/mitochondrial testing. I am assuming this entails lab work and a possible MRI and such...though when I talked to Ashley again earlier today, she said that the docs had not come up with the complete plan of action as of yet. Hailey has had increased muscle weakness lately, so they really do want to get down to the bottom of it. So, please pray for Hailey and Ashley and John as they endure yet another hospital stay with the little miss. I will try to update once I get more information.

Also, please keep the Weber family and little Landon in your prayers. He is a fellow mito warrior who has been fighting such a courageous battle. Jen (his mom) recently shared that Landon's body is getting tired, and they have had to have some intensely difficult conversations with the medical team lately. Pray for this sweet family.

Okay, here's hoping that tomorrow's post is light-hearted and fun. :)

A heavy post

I've had a harder time finding the words to write on here lately. We have had a really good summer in respects to family time and enjoying being more relaxed and lounging around with one another. Jay and I have started an exercise regime and made a pact to start eating healthier. We'll see how long that lasts.
But even amidst the joys of our everyday life these days, there has been a gnawing worry in the back of our minds regarding Nathan's health. Specifically, his breathing. Nathan has trunkal muscle weakness (try saying that three times fast), and his doctors are attributing the way he breathes to the fact that he seems to be weakest in his chest. His crazy breathing was the first clue after his birth that something was not quite right.
His breathing problems have changed a bit as he has gotten older, and they even got a LOT better there for a good while. It was during that time that we saw his classic belly breathing but with very little retracting. We thought that problem was getting better, so it has been quite a blow to us lately as we have finally realized and admitted that his breathing issues do seem to be getting a bit worst again.
This fact has become extremely evident each time I take pictures of him when he is without a shirt. We can't deny it then. I usually just delete these pictures right off the camera, but I have recently started keeping them. Each of these pictures were snapped as Nate was inhaling for a breath. As we inhale, our chest expands...Nathan's does not do this like everyone else's. Instead, his intercostal muscles are tugged inward and his belly expands, showcasing his entire rib cage. This is called retracting, and it is a huge sign of respiratory distress. Nathan pretty much stays in a constant state of respiratory distress, although spot checks of his O2 sats (always taken when he is at rest) have been normal. I do wonder what his O2 is while he is active though.
Mito is an energy deficient disease. The current concern is if Nathan's breathing, which is taking a lot more energy from his body to function, could be causing stress on other parts of his body. And also, how long is he going to be able to continue to breath in this manner?? These are the tough questions we have been trying to hash out with his wonderful Pulmonologist lately, and it has been rather discouraging as no one knows the answers.
We are currently trying to use kinesio tape via his physical therapist to help strengthen his diaphragm, but it doesn't seem to be helping in the drastic ways we are needing. This is why heading to Houston to see the mito doc there will be extremely beneficial to Nathan. When I saw this doc in DC, she brought up oxygen therapy via nasal cannula to help decrease the workload Nathan has for each breath. This has been a tough pill for us to swallow, as Nathan seems to be so normal otherwise, and we are hesitant to have to put him on oxygen each day. I understand her reasoning behind it, but this has been a very difficult decision for us to have to make. After conversations back and forth with our pulmonologist here, who agrees that an oxygen trial might be very beneficial to Nate, we have decided to hold off on this treatment until we sit down and get more information from the mito doc.
On another front to all of this, Nathan had a GI appt today and has officially fallen off the growth chart for weight, which has landed us an conference with the dietitian. However, he is still sitting at the 3rd% for his height/weight ratio, so they aren't talking about drastic measures quite yet. In the GI's theory, Nate needs more calories than normal due to him burning off so much more by the way he breathes. Unfortunately, he also has delayed gastric emptying and simply can not take in much more food while still being comfortable and not throwing up. This is the reason why Nate still drinks a majority of his calories as well...liquid goes through the stomach and intestines at a faster rate than solids. At this time, they said not to worry about weaning him off his bottles quite yet, and he may not ever really eat much volume in solids due to the problem with his emptying.

So it has been an emotionally taxing few weeks around here. We have quite a few big decisions ahead of us, I'm afraid. We are continually praying for guidance and clarity in the decisions we may need to make, but they still feel extremely overwhelming at times. And amidst everything going on, Nafey boy is still just as sweet, loving, active, and cantakerous as ever. He's a true boy through and through, that's for sure. These problems don't seem to slow him down too terribly much most days, and for that, we are indeed thankful.