Thursday, April 30, 2009

My first-born

Does anyone else think that she just seemed to grow up over night? I mean really??? When I first viewed these shots on the computer, they literally took my breath away. And then made me sad...because I realized for the first time that there is no "babyness" at all left to this girl.
5 year olds are so much fun. She's sweet and loving and funny. She is literally a lot of fun to be around. She's inquisitive and asks a lot of very hard questions about life. She loves to learn, loves to laugh, and loves to pretend that she is Emma and Nate's a fault a lot of the time.
We call her "our little monkey" and if you saw the calluses on her hands, you would know why. The kid loves to climb anything and everything. She does pull-ups on the mantel in the living room and still climbs all of the door facings in the house. She hangs by one arm on the monkey bars and tries to climb any tree she thinks she can conquer.
I just love that little goober.

Wednesday, April 29, 2009

The good, the bad, and the ugly

The good...Nathan saw the audiologist for a hearing test yesterday and passed with flying colors. In fact, they tested levels that they don't always test in kids Nathan's age, and he still responded accurately. The audiologist cheerfully announced that his hearing could not be more perfect right now! Oh, what a wonderful thing to hear! We don't have see her again for another year for his yearly hearing test.The bad...Nate's physical therapist came over yesterday and said that something has caused Nate to decrease in muscle strength in his core (chest/back area, etc). He was doing so well for quite a while and then we all of a sudden started seeing issues with his breathing again, problems with him choking more frequently, changes in the way he was walking, and him sitting in the "C" position again (curved back). This weakness just seemed to snowball into a whole mix of problems. The strange thing is that there was not any thing that seemed to trigger any of this...he hasn't been sick all month, so I don't know quite why he has gotten a bit weaker lately. Thankfully, it is not drastic at this point, and we have a whole slew of new stretches and exercises to do with him to help regain his core strength back.The ugly...after emails and phone calls with Nathan's pulmonologist about his increase in respiratory symptoms lately and his problem with wheezing nearly every time he is active, the pulmonologist fit us in for an appt today...and diagnosed Nathan with asthma. He will be on an oral steroid for 5 days to get a jump start on the inflammation and then have to take Flovent twice a day to help keep the inflammation down. He will also have albuterol as a rescue drug for break-through wheezing.Nathan also has a sleep study set up for May 27th. He has always been a fitful sleeper, and the Pulm. wants to make sure he is not suffering from hypoventilation at night or central apnea...both relatively common in mito patients. Nathan gets more tachypneic as the day wears on, and we really need to make sure he has the muscle strength at night to breathe effectively. Oh, I pray that this sleep study is normal, as I am just not ready for the potential respiratory support that can come with this disease...though I don't think anyone would ever be ready for their kid to have to have support.Our pulmonologist also brought up a very, very difficult conversation about the future with this disease in regards to respiratory progression...a conversation that we knew we would eventually need to have but have been ignoring the topic entirely. He said that we need to talk about these things when Nathan is relatively healthy...but really, living in the land of denial is so much easier at this point. Nathan looks great right now, and it is extremely difficult to think of a day where he may not look this good health-wise. It makes my heart and stomach hurt.Alas, this pulmonologist has been there with us from the very beginning of this journey...he was the first specialist we saw in the hospital when Nate was 2 weeks old. He's been through a lot with us, and he seems to care about Nathan...we are officially on a first name basis, as he insists that I just call him by his first name (mainly because his last name is so stinkin' hard to pronounce). So even though it took me by surprise when he brought up the conversation about the "future" and gave me a depth of sadness that is so hard to explain, I do appreciate him bringing up these difficult things we have to think about in regards to our son. But good grief...the reality of everything is so hard to swallow sometimes...especially when he looks so "normal" right now, for the most part. Some days are so incredibly tough. This is one of those days where I just wish I could rewind and never have to live through.Nate must have known that I was quite "down in the dumps" this afternoon because he decided to lift my spirits quite a bit. Little dude decided that during his "naked time" (he needed some "airing-out", okay?), he would eat his own poo. Yep...even with 3 kids under wing, there is a FIRST for everything! Not only did he eat his own poo, but he had the biggest grin ever when his sisters and I were screaming at him. Obviously, he has no taste buds whatsoever (or else, lunch was good the second time around...okay, just scratch that thought...NASTY!). Despite the tough talks we have to have about our precious little boy, he is still just a boy...who is often up to NO GOOD whatsoever!

Tuesday, April 28, 2009

Gator fans entering into Bulldog country

Here's a little tid-bit of info for the readers that don't know too terribly much about us...before we moved to where we live now, Jay and I lived in Athens, GA for almost 4 years. (And we lived in Lexington, KY before that...and I'm sure I can go on and on about all the other places we have lived, though I shall refrain for it is getting late into the night.) Jay received his doctorate degree from the University of Georgia...hence our 4 year stay in that pretty cool college town. We were Bulldog fans...though, we are about the best fair-weathered fans there can be. When we lived in Lexington, all that mattered were the Wildcats! In Athens, we were well educated of the Georgia fight song and cheered the bull"dawgs" on at every football game. Now...well, a new SEC team has stolen our hearts...and even though the Wildcats and Dawgs are very near and dear to us, our girls only know how to do the Gator chomp and will perform this incredible skill on demand.

(The Gators vs. The Dawgs...or rather, Nate, Abby, Emma, vs. Sam, Elizabeth and Ben Chandler) has been 3 years since we have ventured into the land of the early days of our marriage. We loved Athens. It was a neat little college town that gave us many wonderful memories. Jay was in school...I worked. Abby was born there and could claim Georgia as her residence for a full 6 weeks before moving to Florida. I had a good time telling her over and over, "Honey, this is where you were born." Whether or not it meant anything to her, it sure was fun reliving some of those memories of her birthplace. But also, we created long-lasting friendships from our 4 year stint in North Georgia. The Chandler family became close friends to us and have remained that way even after we have been away for over 5 years. We love them and miss them, and we look forward to the weekends like last weekend where we can just sit and talk and laugh and catch up. We feel "at home" when we are with very comfortable and at ease. They took us in as a newlywed couple almost a decade ago and were an incredible example of how a marriage was supposed to work. They have a wonderful family who we love dearly, and it makes me ever so excited to see our children interact and love eachother just as much as we would have wished.
We miss all of you Chandlers...and there are a LOT of you. And a special thank you to the "Rod-a-ney Chandler" clan who kept us and fed us well this past weekend. We love you and miss you terribly. Please come down to Gator country soon...the girls can teach you a new cheer. (Uncle Terry pulling Elizabeth's tooth)
(Sam's baseball game...where he scored a run and made some great plays!)(Abby getting Elizabeth to wiggle her tooth...obviously, she was very jealous of the three teeth Elizabeth has lost...and also a little grossed out by wiggling her own tooth, so she gets whoever else has a free hand to do it for her.)
(The girls dancing to the boys' piano recital pieces)
(Sam and Nate)

Thursday, April 23, 2009

A good, a GREAT day

I was on cloud 9 today. It was the kind of emotion that made me seriously contemplate running through the grass and pausing every few seconds to do twirls while belting at the top of my lungs "The hills are alive, with the sound of music". Although, there aren't too many hills in this neck of the woods...and twirling makes me pukey nauseous dizzy, and that would just put a big ole' damper on my cloud 9 emotion.
Today, God answered a prayer that I have prayed many, many times...lifted a burden that we have bared for many months...and I just can't stop smiling. You see, we have known that Nathan has needed Occupational therapy for many months now to not only help him with certain areas of development, but to help maintain the strength and mobility he does have, along with helping him with energy conservation. Only, our insurance doesn't cover OT.
A few doctors suggested that I contact our Early Intervention program through the state, but I was hesitant since we were already settled into a wonderful physical therapy program through the hospital. And when I finally did contact them, I had an awful...just plain awful experience with the woman assigned to oversee Nathan's case. This woman made me cry, and I don't cry that easily...she was just so combative and didn't seem to have any interest in helping Nathan at all. This was the woman who was supposed to be overseeing his case with Early Steps. (Turns out it wasn't just us, as she has had numerous complaints against her.)

I was going to back out of the whole process since I had believed that we had reached yet another brick wall, but the supervisor at Early Steps assigned Nathan a new case manager, and Jay convinced me to keep the evaluation appt we had today. Honestly though, I thought it was going to be a waste of time, as our old case manager implied that Nate would not apply for services since he was not severely delayed...even though he automatically applies for the program due to his diagnosis. I know, it's all very confusing. Regardless, I thought it would be a waste of time today but was prayerful that God would intervene and provide Nathan with the services he needed to help fight against this disease.
Wow, what an incredible appointment. There are 5 women on Nathan's team, and they are all very sweet and caring women. His new case manager is a wonderful woman, and I am ever so thankful for that change. His therapists are very knowledgeable of neuromuscular diseases (and one of them has had a patient with mito before), so they knew what to look for in Nathan's strengths and weaknesses. They listened to my concerns for now and for the future and nodded in agreement with everything I brought to attention. And in the end, they agreed that Nathan definitely needed some OT every other week along with the PT he gets monthly...and they will be reaccessing along the way as soon as he may need help in other areas (speech, development, etc).

I am so very thankful for this appt today. I am so incredibly thankful for this answer to our prayers. And I can not explain how much of a weight this is off my shoulders for the time being.

Wednesday, April 22, 2009

Always something with that one

The girls were in dire need of some toothpaste because obviously grown-up toothpaste is icky when it comes to the bubblegum flavored goop that supposedly fights cavities in their precious little pie holes. So, we went to the store in search of some kiddo toothpaste.

Midway through the trip, I decided that our family needed a revamp in the whole "eating healthy" mentality with lots of fresh veggies and 100 calorie snacks. Those are healthy, right? $140 later (Seriously! Why is eating healthy so dang expensive???), we get to the van and realize that in Emma's attempt to keep the bubblegum toothpaste nice and warm, it was indeed still under her tush and not paid for with the rest of the groceries. Since there was no way whatsoever I was toting all my hooligans back in the store, the kiddos will have the endure the grown-up reality of minty toothpaste for another week. That was one expensive run for toothpaste, that's for sho'.

Tuesday, April 21, 2009

Have I mentioned that I love living in Florida?

Abby has been nagging me to cut her hair lately, and I have been pretending not to hear the incessant nags. Hmmmm, now I wonder where my kiddos get the "not listening" gene from??? And yes, I did end that with a preposition. I'm tired of all these stinkin' grammar rules. This is the 20th-something century people...grammar obviously does not exist anymore. It was wiped out with global cooling and all that jazz.

So anyhow, she's a nag just like her mama...God love her. And it's just hair. Nevermind the fact that I simply love her long stringy blonde hair because it is ever so easy to just throw into a pony tail that will start to fall out 3 minutes later because she inherited some thin stringy can'tdoanythingwithit hair..."okay hun, let's cut it".
Emma's eval for speech therapy was yesterday morning...While I was dressing her rather hurridley, she realized something was up, so I explained the plan. "But why I go peech tewpy?" she asked. "Oh hun, no reason. No reason at all."
In the end, she absolutely soaked up the one-on-one attention. With each flashcard, she gave additional commentary, like..."Dat's a monkey. My sista's a monkey sometimes cause she climb da twee an we call her a monkey." There were several times where the therapist just laughed and shook her head. She's a mess, that Emma. We are working on blending sounds with Em because she really does have a hard time with blending...hence the reason she is sometimes referred to as "mush mouth". The therapist gave me some tips and worksheets on working with "s" blends right now, and we will add others when we go back. Miss Emma loves it and really does try hard to say the words right.
We got the slip-n-slide out for the first time today. This is something the kids get in their Easter baskets every year, and it gets almost daily use. Even Nathan, who obviously isn't afraid of anything that has to do with water, absolutely loved it. The great thing is that it does wonders to keep his temperature down as well. Nathan has a really hard time regulating his temp each day..especially when he is outside. We played outside for a while before I got this out, and his cheeks started to get flushed. A quick check of his temp revealed a fever of 100.9. I went to get his cooling vest but remembered the slip-n-slide and thought it would work to bring his temp down even better. Sure enough, and hour later, his temp was just 100.0.
These are fun days around here.

Friday, April 17, 2009

Things I learned this week...

...Don't try to make a sand castle when with Destructo (aka: the Nateman) is around. He was given his pestering skills honestly through his dear father, that's fo' shizzle. Each time we would get a decent tower built, Nate would come over and destroy it and then pelt us with fist-fulls of sand. ...Building a "swimming pool" in the sand buys loads of time at the beach. Just dig a big hole and tell the girls to run back and forth with buckets of water until the "pool" is completely full. Sit back and enjoy the show while working on your tan...oh wait, you're a redhead...while working on your burn.
...If there is a dead fish along the humpteen mile shoreline, my son will find it...and stick it in his mouth. I'm totally not kidding.
...My kids sleep like crap in a hotel room. Well, let me rephrase son sleeps like crap most nights, and it just so happens to be worst in a hotel room. The following day, my husband awarded our little family with a bottle of Benadryl while stating it was the best $8 he'd ever spent. I agreed. ...Taking 3 kids ages 5 and under to the pool by yourself is stupid. Seriously, what were you thinking? Sure the oldest technically knows how to swim, but you still have to check on her every 3 minutes to make sure she hasn't drowned. The middle-un wraps her arms around your throat so tight that you see all colors of stars in your eyes. The little-un LOVES the that "he loves to jump in and sink to the bottom the second you turn you head". Not to mention that chlorine has the unlabeled side effect of "phantom poop inducer" on your kids. Interpretation: every time your kids swim, they feel like they need to poop...every 5 minutes...and as soon as you pack up everything and enter into the bathroom, it turns out to be a false alarm...did I mention that this happens every 5 minutes? No, seriously!
If you let your kids within a 10 foot radius of your bed, you will be sleeping on a pile of flesh-eating sand all night. No exceptions.
We had a good trip to Daytona. The kids went to bed asking if we can go again tomorrow, so I guess that pretty much constitutes as a good trip. This year, the girls have loved the beach, and we are now looking forward to our trip to Marco in June! Nathan is tuckered out big time. He has been getting so tired so fast lately, so I hope that he can use tomorrow to recoop and rest up. All in all, it was a wonderful couple of days to just get away.

Thursday, April 16, 2009

More from Daytona

The kids and I spent a couple of hours on the beach early this morning before naptime. It was a little chilly at first, but it warmed up quickly. They had so much fun and were thoroughly exhausted afterwards. I wish I could send the smell of the ocean in the morning through this post as's simply wonderful here.

Another one from last night...

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