Back in the swing...

I sat down with a bowl of soup for lunch yesterday to scarf down before Nate's OT appt, and my soup-loving gal (Emma) came bee-bopping over to take part in the soupy goodness...just like usual. She scooted her little toosh beside mine and stole my spoon, so I got up to retrieve another "poon" as my little non-"s" saying gal pronounces it. Emma took her first bite of the soup just as I was about to dig in, and she immediately spit the enitre mouthful right back into the bowl.

Me: (rather frantically because spit and backwash give me the willies) WHAT IN THE WORLD ARE YOU DOING?
Emma: Dat bite had a damatoe (tomato) in it.This was about the time that I realized: "Yep, I'm definitely home." And the soup...well, that went right down the garbage disposal. Wasteful? Yeppers...but it had Emma spit in it and I love the kiddo and all, but there was no way that soup was going to make it down my throat without a good amount of gagging along the way. However, the leftover meatloaf in the fridge was great...and was NOT shared with anyone.

(Emma's belly with a mitoaction.org temp-tattoo...she's very non-conventional with where she decides to place her tats.)

The trip to DC was wonderful. Even though I missed the fam like crazy, it was quite nice to be away and experience quite a bit of continuous thought without being interrupted with spilled drinks or requests for snacks and games of "Don't break the ice". The UMDF symposium was...well, I can't quite explain how wonderful it was being able to attend this meeting except to say that I am so very very thankful to have be able to take this opportunity to be surrounded by so much knowledge about this disease we are facing each day. I was able to put a face and personality with the main doctors across the country (and they are very few in number) that research and treat patients with mito. I was able to sit in on a talk about the genetics of this disease and finally understand the many ways this can be passed down in families. (Mito is the only disease they know of that can be passed down multiple ways and have such varying degrees of involvement within families.) Meeting with the doc who runs the mito clinic in Houston was simply wonderful, and it opened up the next tier to Nathan's care and a few questions on some treatment options we have in the near future.Right before I left for DC, Nathan had been having some breathing issues that caused his Pulmonologist to order some labwork on the little dude. When the labs came back, it showed a pretty low CO2 level that signaled that Nate was in metabolic acidosis...most likely lactic acidosis, as this is fairly common in mito patients and the little guy has had problems with this in the past. At the symposium, I was given answers to why this happens and what we should do about it and if this causes long term problems. The great news (and I am excited because none of Nate's docs really knew the answers to these issues) is that we can usually combat lactic acidosis at home with pumping Nate full of gatorade and won't have to admit him unless he won't take the fluids at home. And the high levels should not cause problems as long as he is self-compensating (hyperventilating (breathing fast) in order to bring his CO2 level down quite a bit to help stabilize the ph in his blood), and we currently know that he is doing just that. See...I told ya I learned a LOT!But the best thing I brought back from DC was the budding friendships of many other families going through this journey right along with us. I really enjoyed talking with parents from Canada, Michigan, Atlanta, Texas and so forth. I also enjoyed meeting a great couple from Ocala and a mom from Orlando (both here in FL), and we have high hopes and plans for some awareness and fundraising in our state that doesn't know much at all about this disease. I also spent a good amount of the weekend with our mito researcher's nurse, as we have become pretty good friends lately. She was such a huge help along the way, and we truly enjoyed getting to know each other and each other's families (from stories) better. I can not express accurately how thankful I was for the weekend in DC and for the information and friendships gathered from this trip.On the home front, the kids loved hanging out with Grammie and Papa (Jay's parents). Nathan (the man of very few words) started calling Grammie "Gah-Gah" and didn't stop the whole weekend. If he wanted something, he yelled for "Gah-Gah" until she came to his beckon and gave him what he was desiring. If she didn't come right away, he just got louder and louder. I find that quite humorous and am now not too upset that he isn't saying "Mama" or "Dada" yet. The girls were heartbroken when they had to say good-byes to the grandparents...in the words of the tenderhearted one (Abby): "Mama, I just put my head down and cried and cried." Growing up, we always lived away from our grandparents, so I know the feeling all to well. It stinks having to say goodbye and knowing you won't be able to see them for a good while longer.
We are finally back to a normal routine around here. Nate had OT yesterday, and they are ordering him a new disk type thingy for him to sit on from time to time to help strengthen some of his respiratory and trunk muscles that we have been working on for eons with little results. We're being creative now, and this disk sounds pretty interesting. I love Nate's OT...God has really blessed us with wonderful therapists for him.So that's the recap. I am still horribly behind on emails and such, but I have really been enjoying playing with the kids with a refreshed zeal from being away for a few days. In the 4 days I was gone, I think they all grew a foot taller and became a teeny bit more ornery. It's great to be back home.

A reflection of the day

I sat in a white rocking chair in terminal E at Charlotte, rocking back and forth and back and forth as I pondered on the information and events from the weekend. The layover between flights was very long, and I couldn't wait to shower kisses upon Jay and the kids when I returned home, but I was enjoying this last long bit of silence for thinking...and prayer. I sat and rocked for 2 hours and talked to God throughout this time. "It's all so overwhelming...I need guidance. Please God, show me what to do."

The one thing for certain that I pulled away from the mito symposium was that we need a doctor specializing in mitochondrial disease organizing Nathan's care. I met with the mito doc from Houston (the closest clinic to us) on Friday morning for a few minutes, and it was the first time in Nathan's 16 months of life that someone actually had an answer to the whys and hows of the complexity of his medical issues. She understands this disease...and I wanted to hug her and thank her and carry her home with me to meet the fam and all our friends. Seeing a mito specialist is something that we have been putting off until he is more affected, but this meeting made me realize that he needs to see one sooner rather than later.

As a parent, I want to do everything in my power to research and learn and understand this disease in order to help my son thrive in this difficult journey. I want him to see the best doctors and get the best treatment. I know that every other parent with a child with a chronic illness will say the same thing. And even though we think that nothing will hold us back from storming the medical community to get only the best, some things do indefinitely get in the way. Money is one of them.

Now, I hate to talk about money. I hate it. But I must in this instance, in order to explain my reason for telling you this. Yes, having a child with a chronic illness/disease is expensive. Very expensive. Thankfully, God has provided in many amazing ways for our family throughout this time, and we also try to be frugal and attentive to what we can afford and what not. The symposium that I just attended was a rather expensive trip...it was well worth the information acquired, and I hope to attend more symposiums in the future if able...but yes, it was a bit expensive. I only tell you that to lead into my dilemma for the day...

In my quiet time staring out over the tarmac outside of Concourse E today, I kept conversing with God: "I feel like we now need to see a mito doctor, but I am afraid to spend more money on plane tickets and such when I just took this pretty expensive trip. Please direct my ways. Show me what we need to do and when to do it."

"But verily God hath heard me; he hath attended to the voice of my prayer." Psalm 66:19

Waiting at the departure gate, there was a voice over the loud speaker: "If there are any volunteers willing to take a later flight available, a voucher will be awarded." On an important personal note...I don't like change! My husband will tell you first-hand that I am very resistant to any type, shape or form of change around me...a flaw, so to say. I have a really hard time with change. Due to that, I am NOT a risk taker. The lottery, the slot machines, the stock market...I would be happy if they were all banished, as I see no pleasure in them whatsoever because of the risk. And saying this, I want to express that I was really missing my husband and kiddos at this time...to the point where I swore off even thinking about them lest I erupt in tears. Summary: not a risk taker + missing family = not a good candidate for a risky move to give her seat away for a flight home.

BUT...after the attendant made the announcement, I had a sinking feeling that I needed to try for that voucher she was mentioning. This freaked me out because I DON'T TAKE RISKS!!! I don't normally go outside of the realm I know. But something kept gnawing at me to go ahead and try it...just become a volunteer.

I made the walk...all the way up to the podium. My first question: "Does US Airways fly into Houston and Cleveland?" (These are the cities that house the 2 mito clinics we have been discussing previously about attending.) The answer was a deciding "YES!" I gave away my boarding pass still somewhat reluctantly with the afformation of "You'll probably still be on this flight, but thanks for volunteering." Turns out, another passenger volunteered before me, and they only needed one volunteer.

Fast forward to boarding time...after the boarding was complete, they decided to board the other volunteer and left me sitting at the gate. I was nervous. Had I made the right decision? Was my heart leading me the right way? My very nervous stomach caused me to visit the bathroom in the interim, but when I got back the lady called my name and informed me that I was booked for a flight home that was just an hour later and also given a $250 voucher for any flight within the next year. Essentially, a free (or almost free) flight to any destination.

God is so good. I had been asking earlier in the day if it was wise the spend more money on a plane flight so soon, and He provided that additional flight for me. After receiving the voucher, I gathered up my belongings and found the nearest bathroom stall to cry and thank God for his mercies. He answers prayers...it has been very evident to us over our lifetime, but it is still so sweet to witness each time.

We do now know that we will be taking Nathan to see a mitochondrial specialist in the next few months, but the question of "who" is still not clear. Our hearts are pointing towards the ones in Houston and Cleveland, and we just don't know who will be best for Nathan. This is our prayer now...that God will show us directly what is His will for the next step.

Heading out...

Apologies for the lack of updates this week, but I have really been enjoying Jay's parents being here. The kids are quite excited that they get some good personal time with Grammie and Papa over the next couple of days, and I am just hoping that they are less energetic and behave themselves. So, please keep my in-laws in your thoughts and prayers as they undertake the huge task of watching the 3 hooligans over the next few days. I have a few really cute pictures to share when I get back.

Heading out bright and early tomorrow morning to make the trek by aero-plane to our Nation's capital. I'm excited and nervous all at the same time.

An important announcement...

It is with utter excitement that I am able to share what new adventure Lillipops Designs is undergoing. In an effort to bring more awareness to Mitochondrial Disease, Jayme at Lillipops has created a line of shorts, capris, and pants that features "Mike the Mito Turtle".Not only is this such an incredible way to raise awareness about a disease that is relatively unknown to most, but it also benefits a cause that is equally near to my heart. A few months ago, a fellow mito mom started helping create a mascot for the mitochondrial clinic in Houston. All children who suffer with mito have to undergo routine labwork, invasive and painful tests, and regular doctors appointments. Having a little stuffed animal as a mascot will help add a positive touch to such a difficult journey for these little tykes. Mito Mike is this mascot...a stuffed turtle with the saying "slow and steady wins the race" that is the perfect motto for a disease that robs the body of energy.
For every pair of Mito Mike shorts or pants that are purchased through Lillipops Designs, $10 will be donated to the Mito Mike charity. I just get chillbumps when I think about all of this and tears come to my eyes. I can't stop smiling from ear to ear. And I simply can't thank Jayme at Lillipops enough to trying to help bring awareness to this disease that affects us personally. Thank you, Jayme. This means so much.
On a side note, there are many different patterns and colors of the pants, shorts and capris (even colors for girls), but the turtle applique will remain the same. And when your children are wearing these adorable outfits and someone talks about how cute they are, please remember to share with them that this is for a wonderful cause. The more others know about mitochondrial disease, the more funding will hopefully be put into trying to find treatments and possibly a cure for such a difficult and heartbreaking journey for so many. So please share...

More pics from Marco

The little guy in the family was an absolute bear yesterday, to which I seriously contemplated packing up and heading back south to Marco by myself. The kids know how to make cereal, and there are enough apples to last for a few days, so I'm pretty confident they can make it on their own. Nate's physcial therapist came by and taped the fella up pretty good to help with some of his breathing difficulties, and I was hoping that she would take me up on my offer for her to just take him back to her house for the weekend. But after we pulled 2 crayons, paper, and a band-aid out of his mouth and saw him pitch quite a few fits along the way, she politely laughed a "not on your life" laugh at my proposition.Back to thoughts of Marco...On the last night, Jay had taken Nathan back to the room for a cool bath because he had gotten overheated, and the girls and I stayed on the shore to watch the sunset. Right before we walked back up to the room, I told the girls to breathe in one last deep breath of salty air and listen really well to the waves because it was going to be a while before we were back. I thought it was a sweet little sentimental thing...until I looked over and Abby was sobbing about having to leave. Tears = Good memorable vacation.The girls enjoyed building sand castles along the shoreline...Nathan enjoyed destroying their sand castles as soon as a tower would go up. So Jay, who hates the beach (its hot and sandy, and he no like neither of those , so combining the two is almost torture to him) and jumps at any chance to head back up to the pool or the room, took Nate up for a nap one day while the girls and I were bound and determined to build a sandcastle. Their favorite part was farming the multi-colored coquinas from the sand and using them as decoration for the castle, which made me smile because that was always my favorite thing to do as a kid on the beach.But much to my chagrin, if you gave the girls the option of being on the beach or at the pool, they would always choose the pool. The water slide was too much fun for Abby to pass up, and Emma loved to kick her way around the pool in the comfort of her floaty ring. By the end of the trip we were referring to her as Wade from Garfield and Friends, which only means that we watch entirely too much kids TV. Emma went down the slide about a dozen times the first day...until she smacked her head pretty good one time and vowed to never go down again. I thought I had convinced her to go down again at one point (I told her I'd give her a big fat dollar when we got back to the room if she went down again...you know, to face her fears and all). She waited in line and got all the way to the top of the slide, sat down on the slide, and then got up and told the slide police that she didn't want to go anymore. The stinker bee-bopped her way back down to the pool like nothing happened and started puttering around in the water with her beloved floaty ring like usual.We got back from vacation, and I instantly ordered some at-home training videos to get my bodunkadunk back in shape. There's nothing like being in a bathing suit for a few days straight to make you want to loose the flabby mcflab that you have become quite close to over the past few months. Our beach diet consisted of chips and candy bars and powdered donuts and PB&J and fruit snacks...you know, just the staples. I did eat raw oysters for the first time at dinner one night, and they were yummy. And then the were the eggs benedict that I tried for the first time at breakfast one morning, and they were double yummy. And just thinking about these makes my mouth water and my jelly belly want to immediately start doing sit-ups. I love vacation food.All in all, it was such a fun week. The kids slept very well in the hotel, and we only had to resort to the Benadryl cocktail once. On the last night, Jay and I sat on the balcony and watched a huge thunderstorm make its way to the island. With almost incessant lighting jumping from cloud top to cloud top and shooting out from all directions, it was the most amazing display of dancing light we have ever seen...truly a wonderful end to a wonderful week.

My feet are still pruny

We entered back into our neighborhood by early afternoon today, still heavy hearted as we left our beloved Marco Island behind. But even though we were sad to leave our favorite little beach town, it was indeed time to go. Nathan woke up with a metabolic fever this morning and an attitude that gave the crabs a run for their money, and when he fell for the humpteenth time and woke everyone up on the 10th floor with his screeches, we knew that we needed to head back north toward home. With a day of rest in the van and at home, the little dude was doing a lot better by bedtime, and his temp was finally starting to trend downward.

This was our 4th year being able to be go to Marco Island, and as I was editing this year's photos tonight, I realized that there was somewhat of a theme among the photos from these memorable trips each summer (click on the pics to see them bigger):It was a wonderful week, and as soon as we finish unpacking half of the sand from that portion of the beach from our suitcases, we will indeed be ready to tackle the everyday tasks of our lives. First though...I am going to bed to sleep on my pillow and pray that the kids sleep all night tonight. I'm pooped! More pics tomorrow...

Greetings from Marco Island

I'm ordering this picture really, REALLY big when I get home. I have needed a pic of all three kiddos for a long time now, and I love this...can't you just feel the warm ocean breeze in it?Marco is one of my favorite places on earth, and I get all warm and fuzzy as soon as we cross over onto the island each summer. I love that we are used to this place now...we know our favorite places for dinner, where the grocery store is located, and the short cuts from the south tower of the hotel to the kiddie pool. We love that Jay comes to this meeting here each summer, and we hope that he will be able to continue to do so. The beach is gorgeous down here...the water is clear, and we love watching the fish swimming around our legs. The girls are especially enjoying gathering shells this year...and it looks as if we will be heading home with enough shells to fill a body bag. The tide brought in some seaweed last night, and Nate enjoyed playing with the nasty stuff.
Little dude has been quite the Daddy's boy the past few days and doesn't leave his side for very long. He was quite the sad kiddo when his pal had to actually go off and do some work today at this meeting...his mama was too, as wrangling 3 little hooligans around the ocean or pool by yourself is sometimes an insurmountable task.I know I have said this before, but Nate is absolutely fearless around water and scares the jeepers out of us from time to time. He also has a knack for going up to all the college-aged gals and batting his eyelashes and shooting them his sheepish grin. I keep trying to tell him that if he is going to flirt with the ladies, he needs to at least make sure that his diaper isn't peeking out of the top of his shorts. That just doesn't do justice to the wooing.

Watching the sunset...and showing off my bad mothering moment of this trip with the sun on their faces. When you are trying to keep kids from jumping to their doom in the deep end, it is a little harder to remember to reapply sunscreen.

Emma saw an older guy in a speedo walking along the shore of the beach today and shouted to me "Why that boy wearing his underwear at the beach? That's so silly!" That instance brought up the conversation Jay started just the day before about the fact that we need to somehow teach Em that people can HEAR HER when she talks about them...especially when they are right beside her. Elevators and Emma do not mix. They just set everyone up for embarrassment.
The one thing we are having to figure out if how far we can push Nate on trips like this. That's a lot harder than it seems, as he generally seems okay until it is too late and he is on the verge of a crash. We learned this the hard way at our church meeting a few weeks ago. So far, the little dude is sleeping well at night and for all of his naps, but he does still seem to get really tired and low-toned by late afternoon. He loves the pool and does well there, but he seems to get overheated easily at the beach, no matter how many times I pour water all over him. But so far, he's hanging in there and having a blast right along with the girls.
The internet access is kind of come-and-go in our room, so this will probably be the last post for a few days. I have a ton of pictures that I will post when we get home. For right now, I am going to enjoy the quiet cool hotel room and read a book while the kiddos are sleeping. Ahhhhh, vacation.

From generation to generation

As the kiddos grow older, I find that I tend to introduce them to things in life that I found pleasure in when I was yet a wee bonnie lass. I sit back and enjoy watching the smiles on their faces as they watch the shows and movies of my childhood...Scooby Doo, Looney Tunes, An American Tail, McGee and Me, and Tom & Jerry. I love to listen to the stories of Adventures in Odyssey with the girls and think back on the times when I would listen to those same stories in the van while running errands with my parents back in the day.

Ours days are filled with making up silly words to the song "Peanut, Peanut Butter...and Jelly!" And I try to periodically chant "Abby, Abby you ain't no good. You can't tote water and you can't chop wood." The kids climb trees, jump in nasty puddles, make mud pies and "soups" that consist of water, red berries, prickly leaves, a couple of rocks, some sand and black dirt, and the dried worm from the driveway. It's delicious. They catch beetles and caterpillars and frogs and lizards. And when I think back on all of these fun things they do each day, I realize that I taught them these things because they were what made up so many of the wonderful memories of my own childhood, and I long for my children to experience those same carefree days.

One of the major additions to our daily lives growing up was the sound of music being played in the house. My grandmother plays music all of the time, and subsequently does my father as well...and like families go, this desire to be engulfed in music on a daily basis trickled down to yet another generation. iTunes was made specifically for me. Betcha didn't know that, huh? They know our credit card number by heart. I love music...plain and simple. And by listening to CDs for a good portion of every day at home, I believe that the girls have attached themselves to the love of good music as well.

The best part of all of this...where there is music, there is dancing. And where there is dancing, there is laughter. And where there is laughter, there are good memories being made. And that makes my heart very, very happy.

Photo and video editing at www.OneTrueMedia.com

We are in Marco Island for the rest of the week, so the blog posts may be sporadic at best. Next Monday, Jay's parents will get here...they are babysitting the kiddos while I am in D.C. at the Mitochondrial Disease Symposium (and Jay is at work). I'll leave on that Thursday morning. So, a busy couple of weeks for our family. We'll hopefully be back to a regular blogging program after the D.C. trip. I can't wait to be able to share of the info I receive while there.

Photography Phriday

Catchy, huh? Even though I love really good portraits with fun clothing and neat surroundings, my favorite photography would have to be shots of everyday life. The desire to take good snapshots was what fueled my original endeavor to learn more about the ins and outs of photography. The photos in this post are merely frozen moments in our life this week.

(100mm lens, shutter speed: 1/1000, aperture: f/2.8, ISO: 200...he thinks he's big stuff)

What mode should I use when shooting? I get this question a lot, and I always give the same answer. First off, the modes of shooting will usually be on the little turn dial on your camera...you know, the letters kind of resembling AV, P, M, auto, perhaps a little object sort of resembling a beautiful tulip, and a crazy little figurine running. My answer to this question: if you are really serious about learning about photography...lighting and what looks best when, where and how and how to get your pictures to look more crisp and yadda yadda yadda, you really really really need to learn how to shoot manually...meaning in the manual mode.

(1oomm lens, 1/1250, f/2.8, iso 200...complete ragamuffins)

When you shoot manually, you are in control of the ISO, shutter speed, white balance, and aperture. You can change these settings with each picture if need be to create the look you are trying to achieve. It is extremely overwhelming at first to start learning to shoot in this setting, but it is very worth it...I assure you. When I syked myself to finally taking the plunge, I vowed that I would leave my camera on manual for 2 weeks and not change to any easier setting, and after the 2 weeks, I could change it back to the easier settings if I needed. I never went back. It was worth it.

I have to mention also that I never use the flash on the camera. Well, I say never, but it does crop up on every Christmas morning and the spare moments like during Nathan's sleep study. But for the most part, I use available light, and mostly natural light because I like the look of it best. It's a personal preference.

(100mm lens, 1/160, f/2.8, iso 250...that lip, it gets me every time)

ISO: When you buy film for film cameras, you can buy them at different speeds (100, 200, 400...1600, etc). This is the ISO...the speed of how fast the film responds to light. Even though digital cameras don't have "film", the ISO setting resembles the film speeds. The lower ISOs are good for sunny conditions or for shots that have plenty of light. The higher ISOs are for low-lit conditions, but they also introduce increased digital noise to the shot the higher the ISO is set.

(100mm lens, 1/160, f/2.8, iso 500...inside with less light, so I had to increase the iso quite a bit in order to keep the shutter speed fast enough. Bear-Bear is the focus of this shot and Emma is slightly out of focus due to the low f-stop number.)

Shutter Speed...shutter speed is merely the speed at which the shutter opens and closes. Essentially, how long it takes to actually take the shot. Some incredibly artistic shots use longer shutter speeds to get their desired effect of movement. With kids, it is imperative to use a very fast shutter speed in order to stop a shot and not get a blurry mess.

(100mm lens, 1/1600, f/2.8, iso 200...a really fast shutter speed was able to catch Emma jumping without anything ending up blurred)

When shooting, my shutter speed normally has precedence to the ISO and aperture. If the s.speed is too slow, the shot can be blurry as a result of camera shake (the shake you make as you take the shot). If this is the case, I usually raise my ISO speed to accomodate a faster shutter speed. Confused yet?

And another little rule of thumb regarding shutter speeds...try not to let you the second number on your shutter speed be less than the mm length of the lens you are currently using. For instance, if you are using a 50mm lens, make sure the shutter speed is faster than 1/50. If you are shooting with a 100mm, the s.speed needs to be faster than 1/100. The reasoning behind this is that the longer the lens, the heavier it is...the heavier it is, the more it is prone to camera shake when shooting. Obviously, this rule of thumb is meaningless if you are using a tripod that keeps the camera steady for you.

(100mm lens, 1/320, f/2.8, iso 320...Emma sniffing the pepper, she's looney fo' shiz, Had to bump up the iso because we were in the kitchen where the lighting is a bit lower.)

Aperture...my favorite! How do you get that blurry background in your shots? Well, my dear Watson, you can thank Mr. Aperture for that fun little technique. Aperture settings can also be referred to as f-stops and usually are listed on lenses as 5.6f, f/2.8f, 1.8f, etc. Aperture is the opening in a lens in which light passes through. The smaller the number, the larger the opening is in the lens...the smaller the number, the more "blurry" the background becomes.

For a majority of my pictures, I shoot at 2.8f...though I will sometimes go as low as 1.8f with some lenses. When shooting a family or group, it is sometimes good to shoot in the higher numbered f-stops...this will reduce the blurry background but also help keep all of the subjects in focus. When you shoot in the lower numbered f-stops, you are able to shoot in higher shutter speeds and lower ISOs...another good thing about using lenses that have the ability to have large maximum apertures.

(100mm lens, 1/1000, f/2.8, iso 200...blurred background due to the aperture setting.)

In upcoming posts in the next few weeks, I hope to talk about focus, composition, and all the editing questions that have been asked. As for these shots, its pretty obvious that the 100mm lens has been stuck to my camera all week, and that I shoot with f/2.8 most all of the time. When you find something that works for you, it is hard to get out of the box sometimes.

(100mm lens, 1/400, f/2.8, iso 320...seriously cute kiddo...seriously!)

Introducing...

I have recently had the wonderful privilege to join forces with a distant friend from the west coast (hello, all ye Washingtonians!) and dive into some product photography for the incredible eco-friendly children's clothing line named Lillipops Designs.
Direct from Jayme's profile on the Lillipops Designs Etsy site, it reads: "Each of my pieces is crafted using recycled garments. That skirt may have been a man's shirt, and that lovely dress may have been a vintage tablecloth. I select only fabrics that are high quality, durable and beautiful."
I have been so excited to start doing some photography for Lillipops Designs, and I was equally ecstatic to get the go-ahead to share this fun adventure and website with you all. Speaking from personal experience with these gorgeous and eclectic outfits, they wear and wash up beautifully. My girls love wearing dresses all throughout the summertime, and they have begged me to wear these dresses and skirts from the moment we received them in the mail. They are extremely comfortable and well made. And as a wonderful addition, they wash up beautifully.
You will be seeing my kiddos in outfits made by Jayme at Lillipops Designs from time to time, and I will more than likely be throwing in shameless brags pretty often. Really, you will NOT be disappointed in this delightful line of clothing.
Nathan is sporting an absolutely adorable pair of pants with a cute turtle applique on the side, for which I will go into with more detail about in the next couple of weeks. For a hint, these pants are for a wonderful cause...one that is very close to my heart.
More pictures will follow in posts over the next few weeks...

Gotta love the naivety

Abby doesn't nap anymore, but she does spend an hour in my room by herself during Emma's and Nate's afternoon nap. She sets a timer and listens to CDs and reads books. It's a nice little down time for everyone.

During rest time today, I decided to pop in a movie while I was folding clothes. After Abby's timer went off, she came into the living room and plopped down on the couch...

Me: "Hold on. Let me turn this movie off."
Abby: "Oh no, that's okay. You can finish watching it."
Me: "No, I'm going to turn it off. It has some bad language in it."
Abby: (with an understanding nod) "Oh yeah. Spanish??"

The sights of summer

Phew...a quiet house and a few mini-men pounding on the inside of my forehead. Sounds like it is time for bed...and a handful of ibuprofen. But I thought I would post a few pics from our fun family weekend first...
Nate was having an "off" day, but he still had a fairly good time. You can always tell when he is having an especially "low-toned" day by the shape of his mouth. When he has that open-mouthed curved-down thingamajig he does, he is having a tough time with his muscle tone. Thankfully, he was as good as new on Sunday. And if someone can give me the magic answer to why some days his tone is a lot lower than usual and other days he seems fine, please do share. The "whys" with him drive me nuts sometimes.

Can you hear the laughter and squeals in these shots?

Good Mornin' Pinky!

Things I have done so far this morning...

~Cleaned up 4 spills
~Administered 7 different meds...only 1 of them to Emma and her new found friend, Pink Eye.
~Broken up 2 fights between Emma and Nate...of which both were started by the little dude. Toddlerhood has started.
~Wiped 2 noses.
~Wiped 2 bodunkadunks.
~Rescued Nate from the bathroom sink x 3.
~Rescued Nate from the kitchen table x 1.
~Rescued Nate from the playroom table x 2.
~Marveled at how my little hypotonic kiddo is now climbing on everything in sight.
~Retrieved a Sharpie from Emma's hand.
~Retrieved a bottle of floor cleaner from Nathan's mouth.
~Pulled a wad of packing tape out of Nathan's hair.
~Scolded Emma for trying to tape Nate's hair down to his head.~Comforted the girls who knocked noggins while they were wrestling on the bed.
~Laughed at Nate's loud old man toots.
~Chose not to look at the playroom the kids were systematically destroying while I was cleaning the kitchen.
~Ate steamed potatoes, fresh tomatoes, and Gushers fruit snacks for breakfast.
~Instructed the wee one to not scream every 4 minutes for no reason.
~Failed at that instruction.~Killed 3 mosquitos in the house.
~Showed the rest of the squito-clan my mad kung-fu skills and dared them to make another entrance.
~Called a friend to ask how long little boys keep a continuous grasp on their "manlihood" each time they are naked. Portrayed somewhat troubling story about the little dude almost falling while walking because he wouldn't let go of it to catch his balance. Friend said its normal...I'm still not convinced.
~Cursed myself for not checking on the kids sooner when I heard water splashing on the floor in the playroom.
~Lost my cool for a bit when I found the girls giving Nathan cups of water to pour all over himself and the floor.
~There was an old woman who lived in a shoe...

All of this before 10:30. Just a regular Monday.

T-minus 7 days until we leave for Marco Island. Calgon, take me away...

Make an on-line slide show at www.OneTrueMedia.com

In an effort to try to keep screaming from being the kiddo's main form of communication, we have had a blast trying to teach him more and more signs each week. I taught him the wrong sign for "all done", but it works alright anyway.

And for a kid who doesn't really say too much, he sure is expressive with tones in his grunts and babbles. He came up to me a few minutes ago and with a series of grunts and hand motions, he informed me that he needed to go pee-pee. At first I thought he was just playing around and wanted to sit on the pot for fun...until I heard that all too familiar tinkle in the water and had to pull my chin up off the ground. The little dude told me he had to go to the bathroom...and he went!

The girls and I performed one crazy potty dance afterwards and awarded Nate with an entire pack of Gushers. I am in no way, shape or form ready to start potty training a 15 month old boy, but I am one happy mama for my little guy right now.

Photography, as told my me...episode 1

I have been known to say a few hundred times that I don't have a creative bone in my body. And really, I believed that for a few years. I detest crafts...glue and scissors and scraps of paper/material and paint and needles and anything that is close to any of these terms...not fun, not fun at all in my world. Then...I had a little baby girl who had so much colic that I wanted to pound my head in, and that really has no relevance to this story, but I thought about it today and wanted to add it in here. Anyway, I was home with a baby and was overwhelmed with the intense urge to get every minute of her life on film. When Abby was about 6 months old, we bought our first digital camera...a cute little point and shoot that opened up a whole new world for me. I loved taking pictures and having a digital camera opened up the possibility of experimenting with lighting and composition while also being able to delete the shots that were painfully awful. I loved it. I very quickly became neurotic about taking pictures and learning everything I could about photography.Here are some of the basics from my experience...and questions that have been asked by quite a few over the past couple of years:

What kind of camera do you have? Currently, I have a Canon 40D. I love it...as in, I feel as if I should name it and add it to the list of recipients of our will. It's the friend who always vacations with us and promises to attend every big life moment in our family. We've become quite close over the years. I did start out with a Canon XTi but I think those are being replaced with Canon's fairly new XSi. Both are great starter SLR cameras!What's the difference between Canon and Nikon? Really, I don't know of a huge difference between these brands. Both are great brands of cameras and are extremely similar. But once you chose a brand, it is easier to stick with that one because the lenses are not interchangeable between brands. I like Canon...I will probably always be a Canon girl. That is, unless someone throws a free Nikon at my chankles with the promise for free lenses if I just used their camera. Then, I will definitely be a Nikon girl, hands down.

What lenses do you use? First off, in my opinion, the kit lens is a piece of poo-poo. It is made of cheap glass and is just not that great of a lens. That said, if you have the opportunity to buy the camera base without the kit lens, I would do just that. The first lens you should invest in is the 50mm 1.8f lens (more on the sizes later) (and remember, I'm currently a Canon girl, so I am only talking about Canon lenses here...but you can usually find comparable Nikon lenses that are usually about the same prices.). The 50mm is a fixed lens (meaning it doesn't zoom) and is around $100. This is a great lens to keep on the camera at all times and can give you that good "blurred background" effect that is often desired. Aside from the 50mm, my favorite lenses would be the 85mm 1.8f and the 100mm 2.8f macro (my absolute fave!). I use the 100mm for a lot of my portrait shots because the glass is great and gives amazing clarity to pictures. But it is a very long lens (long in focal length), so you have to make sure that you have plenty of room for shooting (great for outdoors). I took the snake pictures from a few weeks ago with the 100mm macro. Did you go to school for photography? Nope, but I read everything I could get my hands on about photography and lighting and exposure and what not, so it kind of feels like I did some schooling. My hints at learning how to take good pictures...

• Read your camera's manual. You really need to know what every button does and how to change settings to fit your need. This is an essential step, in my mind. I still get my camera manual out at times to go over settings I had forgotten about.
  
• Other books that are helpful in understanding your camera and photography in general: "The Digital Photography Book" by Scott Kelby, "Understanding Exposure" by Bryan Peterson, "Learning to see Creatively" by Bryan Peterson, "Natural Light Portrait Photography" by Douglas Allen Box
• Shoot, Shoot, Shoot, Shoot, Shoot. Shoot in every lighting situation to figure out what looks best in what light. Shoot from every angle possible. Get close to the subject...go far away...lay on the ground...shoot at an angle. The only way to truly learn what looks best when, where, and how is to shoot as much as possible and train your brain to "see" the shot before you actually lift the camera.

What do you use for editing software? I use Photoshop CS3. It is a wonderful editing program, but it is a little daunting to learn. I started on Paint Shop Pro 9.0 a few years ago, and after I was fairly confident with the editing terms after a couple of years, I was able to upgrade to Photoshop.

These are the basic questions that others usually ask, and I hope to dive into some more in depth photography topics (modes of shooting, shutter speed, aperture, actions for editing, etc) in the near future. Please feel free to ask any questions, and I'll try to answer them to the best of my ability in future posts.

(Boy meets mud puddle...and finds it appetizing.)

Who needs cable when you have Emma

Emma was dressing for the day when Abby and I walked into her room. She instantly threw her hands over her "important parts" and proclaimed with about as much drama and pizazz that she could muster: "Don't look at me! I'm hideous!"
And then today as the girls were eating a snack of pork-n-beans (what can I say? We love those things.), Emma ate about half of her bowl-o-beans and paused to sneeze. She then immediately pushed her bowl away with a scowl and said, "Get those away from me. I allergic to beans!" When I foolishly tried to explain to the hard-headed 3 year old that she was not at all allergic to beans, she held her hand up to stop me and with confidence she argued, "Did you just hear me sneeze? Dat means I allergic!" Lord, help me when she becomes a teenager.With thankfulness, I am very happy to announce that Hailey is home from the hospital and doing very well. She's a strong little redhead! It is amazing that she had open-heart surgery just a week ago and is now doing well at home. Praise God for such wonderful news!

Nathan had a follow-up appt with his Pulmonologist today, and it went very well. The Pulmo is pleased with how well he is doing on the asthma meds. He also had Nathan's sleep study results today...For those medical enthusiasts, here are the key points to the study:

Sleep Efficiency: 81.5%
Total Arousals: 145 (16.2/hr)
Obstructive Apneas: 0
Mixed Apneas: 0
Central Apneas: 13
Hypopnea (overly shallow breathing): 11
AHI: 3.3

Moderate snoring (they believe this is hypotonic snoring since his tone is lowest in his trunk area)

Baseline O2 sats: 96%-98%
CO2>45 torr for 5% of total sleep time
Central apneas resulted in desats as low as 92%.
Hypopneas resulted in arousals and desats as low as 91%.

Final impression: Mild OSA with sleep disruption, desaturation, and rare hypoxemia.

The good news...Nathan does not require any respiratory support at this time. His O2 sats were not low enough long enough to cause too many problems yet, and his CO2 levels were not too high for too long.

The other news...While his sleep study wasn't too terribly bad, it was definitely not normal. While an AHI of 3.3 is considered normal in an adult, a child should not have an AHI that high. The Pulmo explained that an AHI of 2-5 in a child is considered mild sleep disorder, 5-10 is moderate, and anything over 10 is severe. This one study won Nathan the grand prize of a date with our sleep clinic every year from now on. Nice. (Can't you sense my eyes rolling out of my head onto our cluttered playroom floor?) The sleep report in layman's terms...he sleeps like crap. Not like I didn't already know that from the past 15 months of experience with Nathan's sleep habits, but whatevah.We had originally thought that his snoring was due to large tonsils/adenoids that were causing obstructive sleep apnea, but it is more than likely hypotonic snoring since he did not have any obstructive apneas. Instead, he was having central apneas which are neurological in origin...essentially, these are due to his brain failing to remind his body to breathe at times. Central apnea is always a symptom of an underlying problem and is often seen in neuromuscular diseases...in Nathan's case, it is due to his mitochondrial disease. The good thing is that his oxygen sats are not dropping too terribly low (low 90's) during these apneic events yet, and we will keep a close eye on his sleeping patterns over the next few years to see if there is any progression in his sleep issues.How's that for a load of medical jargon? Tomorrow's docket...a photography post!

A recap of all the goings-on

June? Seriously? Now, when did that happen? Okay, a recap on everything that has happened in the past few days...Hailey is doing very well. She had a little setback last week when she had too much air trapped around her lungs, so that earned her a chest tube and a few more days in l'hotel a la PICU. Thankfully, they were able to take her chest tube out today and are hoping that she will be well enough to go home sometime this week. She's a little trooper, I tell ya. I miss her like crazy!
Nathan is doing a LOT better than last week. We are pretty sure now that he went through some sort of energy crash, and it just took an entire week of 3 good naps a day for his body to rebound. By yesterday, he was back to his mischievous and ornery little self. Don't you see it in his eyes? This is his "up to no good" look:
As for the rest of us...well, we seem to be battling some nasty summer cold. Jay even came home early from work today, which never happens and means that he totally feels like really exhausted poo. Abby has run a pretty good-sized fever since Saturday and has explained that it feels like there is an extra heart beating in her head, bless her. I know the feeling, chic! I am finding the upside to having an incessant cough...my abs are getting the work-out of their life! I am pretty confident that I now have a wicked 6 pack under all this blubber.
All this down time for the kiddos (read that: absurd amounts of Scooby Doo and Tom & Jerry...you know, the real educational television) gave me enough time to finally finish a new look for the blog. I'm still tweaking a little here and there and trying to figure out if it is just "too busy" or not. But it does have some neat little features now...like a search thingamabob where you can search for anything that has been written here, and a place where you can subscribe to the blog's feed. I hope to dive into some photography posts soon, as requested from some of you, so feel free to ask any questions at all and I'll try to answer them.

And so I leave with a cute series of pictures from a couple of weeks ago where Nathan found Emma asleep on her bean bag...
After realizing that she was indeed asleep, he went to her room and retrieved bear-bear for her. Melt my heart. I tell ya, that kid's so sweet when he wants to be.