Thursday, May 27, 2010

Someone found where the curlers were hiding

The chitlins wanted me to put these here photomographs up befo' we make our weekly trip to the Wallymart. Don't worry...they ain't be gonna go barefeet. They gots some real good slippers fo' whens we go to town. We knows better than to walk barefeet in publick cause we get our big toes squashed by them silver buggies. They be heavy and'll squash a toe up real bad like. My great uncle Bubba on my mama's brother's girlfriend's side had that happen. That's why they be callin' him Three Toed Tommy all dese years. Sad, really.

Wednesday, May 26, 2010

Wordless Wednesday: sweet dreams

That would be a ring pop in her mouth and a nice, juicy line of blue slobber on her chin. This pic will be printed out to show the dentist when he asks why the kid's teeth are rotting out of her precious little head.

Tuesday, May 25, 2010

Some days

There is something so special about rocking a child. Wrapping you arms around that warm miniature body...patting their behind with one hand and running your fingers through their hair with the other as your hearts beat against one another. Your calves get a mini-workout as you use tip toes to push off the ground in a rhythmic rock back and forth, back and forth, as you try so desperately to lull the child to sleep. There is something so special about this time...about the closeness you experience for those few minutes. There's something precious about the stillness and contentment that happens as your child's eyes flutter into the initial stages of sweet slumber.Rocking my children is usually one of my favorite pastimes, but lately my heart has become heavy each time this scenario plays out with Nathan. Hoping that it is a transient issue like so many other things with this disease, Nate has been having an increase in his level of fatigue lately. He can still run around and play like a normal kiddo, but his little body seems to get exhausted quicker and stay that way longer than his usual norm. This level of exhaustion is hard to see. My heart literally hurts each time he comes to me saying "I tired, Mama. I so tired." To hear a 2 year old speak that phrase over and over most days is tough, as toddlers are typically known for their boundless energy, and I have personally never heard a 2 year old express their exhaustion in words. For most parents, the solution is simple. Your child is tired; make them sleep. Oh, how I wish just mundane sleep would prevent my son from coming up to me with those droopy puppy dog eyes and muttering the pitiful phrase of "I so tired". But even with adding an extra 2 hour nap in addition to his normal nap each day in hopes of helping him "catch up" on whatever energy he is lacking, it seems to all fall into a deep dark hole these days. Sure, he has good bursts of energy from time to time, but mostly, he is And it hurts to see him that way.We try to make life as normal as possible for Nathan and the girls. Our days are filled with school drop-offs and pick-ups, grocery store outings, cartoons, books, and play dates. Naps for the little guy fill a majority of our day, but we still do get out and enjoy the day. Is it too much for him? Is it the heat? These are questions that I ask myself every day. If he has such difficulty handling everyday life here right now, how will he do during our summer jaunt of the beach and pool and this and that and the other? We seem to constantly be struggling with how much we want to do as a family and how much Nathan can handle...but we never know how much is too much until he crashes. Will we ever find that right balance?
Some days are just difficult. Some days I wish all of this would just vanish and I wouldn't have to wonder over and over why my son has sunken eyes today and the desire to sleep or just sit around for a good portion of the day and be completely ornery the other part of the day. Some days I want normal. Some days I want my heart to stop hurting; my mind to stop going to dark scenarios; my brain to stop going through the medical checklist it has memorized in this journey. Some days I want to go back 10 years when my major concern was whether the new shorts I bought showed too much of my larger than average thighs. Some days are just difficult.

Good thing that some days only last 24 hours.

Sunday, May 23, 2010

A fave family

I have mentioned numerous times on here how much our church family means to us. We are very far from my and Jay's parents, so our church family has stepped in over the past 6 years to become our "home family". They have all been there for us through any triumph and need over the past 6 years, but especially since Nate has been here. We have relied on many in our church for so much in the past 2 years because we simply could not take care of everything on our own in certain circumstances. And in these times, our church family has been there to help us, to love us, to cushion our fall when we need it most.

One of these sweet families is the Whitehead family. They are a precious family who we love dearly...who our children have created little nicknames for each member...and who we know we can call on in a time of need and they will be there as fast as they can. They are family...our family.

Thursday, May 20, 2010

The rugrats

For my nephew Daniel, who has requested to see some more video of his cousins from far across the land:

Tuesday, May 18, 2010

Kindy 2010

The school year is coming to a close, and I have to say that it is a bit more emotional than I ever expected. I don't want it to end...this year. My baby, my first-born's year of kindergarten. I wish for time to stand still just a bit longer so that I can enjoy this more. For it seriously seemed like just yesterday when we were walking on the red, yellow and blue lines painted on the walkway entering this new world we call "school". My heart was heavy on that first day, as I didn't want to let go of that blonde-haired, blue-eyed girl that I have absolute privilege of calling "my daughter".
This year has been simply amazing. Abby has taken off like crazy in this academic world and just thrived in the environment she has been in all year. Although there have been a couple of close calls, she is proud to say that she has never been sent to "time out" all year long. She has been pushed academically in areas where she thrives and just loves learning everything you throw at her. She's one smart cookie, that kid. Although kindergarten friendships can be a bit finicky at times, she has made numerous pals and some really close friends over the course of the year. When anyone mentions the closing of the school year, she immediately gets a bit weepy when thinking about the friends she won't get to see on an every day basis. Her "bestiss friend ever" (according to the daily home made cards we see in her back pack every day) is currently a sweet heart of a kid named Andrew. These two are seriously inseparable right now, and it is very cute to watch. Although, we have had to tame down their talk of marriage lately and remind them that they are indeed only 6-ish and may indeed part ways in a few years when boys become stinky and girls become cliquish. They know, because they are bestiss friends.
(at Andrew's football game:)
Our elementary school is such a wonderful place, and I am extremely thankful for the incredible people who make it such a great school. We have met some amazing parents this year, which makes it even more exciting as we create lasting friendships with so many new faces.
So, as this school year quickly comes to a close in a few short weeks, I am indeed very thankful for such a wonderful experience for Abby and us. She has grown so much since that first day when I helped her place her backpack in her cubby for the first time and kissed her forehead as I said a heartfelt goodbye. She's an impressive gal, this sweet first-born of mine.

Friday, May 14, 2010


We had the fun privilege of picking a butt load of blueberries last weekend. They were so huge and simply scrumptious, and we enjoyed them so much that our septic system is sure to run over any given day.

We met up with a precious family there and had a blast picking blueberries together. This family is from Argentina, and the father is one of Jay's grad students. Their children are so sweet and fun, and our girls just love playing with them. We will be so very sad when they leave in a few months...

The little guy had a tough time there. This Florida heat and humidity really creates a struggle for someone who has a difficult time regulating his body temperature. Summertime was such a tough time last year for him, and it is proving to be as hard or even harder so far this year. He's just miserable a lot of the time each day. We spend a lot of our outdoor summer experience in a pool, but on the rare times where we venture out without a water source, his cooling vest is a must. But most days, the cooling vest still isn't enough to keep him cool, so we pour water over his head and torso every few minutes to keep his core temp at lower level. He made it about an hour on this trip before we had to pack him back into the air conditioned truck...but he did have a good time for bit there. That's what counts.
It was a fun day...and now that the blueberries are nearly gone, it's time to head back to pick some more.

Thursday, May 13, 2010


Sweet little Brennan made his maiden voyage down to our house last week for some 2 month old pics. The poor little guy was quite miserable during our pictures, so we didn't get too many. We found out later that he had pneumonia...thankfully, it seems like the little guy is on the mend now, but it is always scary when little ones are sick like that. Anyway...a few of this cute little man and his sister:

Tuesday, May 11, 2010

Motherhood: A post-Mother's day post

Motherhood is an ever-changing, full time position with more ups and downs than anyone expects. There are days when it takes every ounce of your being to not pull your hair out by the roots, and there are days when you smile a never-ending smile while reflecting on the day's events as your head hits the pillow. It's a job that pays in cheeto-fingers on the windows, spilled chocolate milk on the freshly shampooed carpet, mini bouquets of wild flowers and weeds, and hugs and kisses at evening's end.

Amidst the numerous stages of motherhood through the ages of the children, I wanted to make sure and jot down what this honorable position means to me in this time in my children's lives, as I know that it is a fleeting time...
Mothering 3 small children means that the toys are never fully put in their proper places. Lego imprints on the bottom of feet become the new tattoo fetish, Hungry Hungry Hippo marbles get kicked under bookshelves, clothes never seem to actually stay on the Barbies, and Hot Wheels become incredible skates through late night adventures through the house. Motherhood creates stimulation deep down in the brain sensors, causing certain phrases to erupt such as "Don't pick your nose", "Pick up your dirty clothes", "Don'choo argue with me", and "Because I said so". It gives you the ability to multi-task like a pro, but neglects to reward you with the super power of getting everything done at all times. It gives you the ability to remember all the words to "Hush Little Baby" and "You are my sunshine" but forget where you put your car keys 3 minutes ago.
It makes you realize the importance of your children respecting each other and trying like mad to shape their relationships with one another to be long-lasting ones. You try so desperately to "figure out" the ins and outs of the differing personalities of all the little heads living under your roof and tailor discipline techniques and daily life to each child. Motherhood causes you to pray that you aren't screwing these precious little people up. Motherhood is full of conflicts. Sugar vs. Natural Juices. Vaccines vs. Non-vax. Soccer vs. Piano. School vs. Home. Spongebob vs. Phineas and Ferb. You try to stay up to date on the various forms of technology in this tech-heavy world and give little doses while still encouraging time to explore. You desire for them to see their small world for themselves, yet cringe when you watch an Amber Alert news flash. Friendships are encouraged and then later discouraged when you realize what new information about life is being passed around to innocent ears. You wonder how much is too much and how little is too little.
Motherhood is about sacrifice. Setting the alarm extra early to get them to school earlier for whatever reason. Watching the hours pass while lying in a foreign bed because a little one woke and can't fall back asleep. Keeping a log of who got what medicine when. Staying up to date on the schedule of events the kiddos may like. Motherhood likes to befriend worry. Am I too harsh? Too lenient? Do I push enough healthy foods amidst the crap the kids eat all day? Do I read to them enough? Are they learning at a good level? How much do I push? When do I just let them be? Am I allowing their personalities to shine or squelching their spirit? As much as you try to conquer it all, you will never feel like you could completely succeed at being the mother you wish to be.
Motherhood is fun. Telling ghost stories in the closet with a flashlight and teaching them how to put chips on their ham and cheese sandwich are prerequisites to the job. On any given day, there are little hands and feet ready to take a spin on the homemade dance floor called the living room carpet. There are bellies that need tickling and noses that need eskimo-kissing. You are often needed to trace body outlines on the driveway, creating a homemade scene in a forensics show. You can watch movies that gave you such satisfaction when you were a kid and relive them through the eyes of your child all over again. Oh yes, motherhood is so incredibly fun.Motherhood is a gift. Its sometimes difficult to realize how much of a gift this title of mother entails as you are breaking up sibling spats, cleaning poop off the floor, and washing copious amount of dishes and clothes...but right there, circling around your feet, are little eyes watching your every move. Right there are miniature people looking up for guidance and direction in this big world, and God has given us the ability to instruct and help these precious children through this life. Motherhood is indeed an incredible that we should never take lightly.

Thursday, May 6, 2010

Appt recap

It has been quite the busy week full of appointments for the little guy. We saw GI again on Tuesday, and we were so excited to find out that Nafey boy is finally back on the growth charts again. He is sitting right on the bottom curve in weight and is at the 10% for height! He has been eating fairly well lately, and we have a good system of meds going to keep his stomach moving both on an everyday basis and when it slows down quite a bit. It is so rewarding to see that our efforts are paying off right now! We are dealing with a couple of other metabolism things on the GI front, so we will continue on our every-2-month visits, but we are so ecstatic that Nathan is doing so well.

We had a visit with our pulmonologist yesterday, and it was a bit of a sad visit. This doctor was one of the first docs we saw during Nathan's very first hospital stay when he was just a couple of weeks old. He has directed us through so many obstacles over the past 2 years and shown us over and over again that he truly cares about Nathan. This doctor has been very honest with us throughout this journey, which has prompted some difficult conversations about the future. He comes into a room saying "Here's my Nathan", which is a huge testimony to his caring nature towards his patients. In an entire team of some incredible doctors...this one is one of our favorites.

Unfortunately, yesterday was our last visit with our beloved pulmonologist. He is moving in a couple of months to practice in a different state. He will be sorely missed in the peds department here.

On the pulmo front, Nathan is doing well. The summer time heat does a number on his body, and we are starting to see the effects from that in many ways. He is having a more difficult time being off oxygen for short periods, so we are trying to keep it on him most of the time again. I really do hope and pray that this summer is easier on his body than last summer. So far, we are so very thankful that we have good friends with nice pools.

Wednesday, May 5, 2010

April Showers Bring...May Mud Fights!

It started with a mud fight...changed to a mud bath...and ended with lots and lots of laughter.

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