Wednesday, December 31, 2008

Christmas Round Deuce


We are home now. We left a day early because the stomach virus has invaded Jay's family, and we fo' sho did NOT want to have it again. So far, we are in the clear. Nathan has had a few bouts of the "other end" version of this stomach bug, but he has had no throwing up. I think he is in the clear now...and his motility is just fine right now which is so wonderful. It took almost a month to get his motility back to his baseline from the last stomach virus, so that was the one thing we were concerned about the most.

So, we left yesterday afternoon (after we had realized that Jay's dad and his sister both had this virus) and got home around 3:30 in the wee morning hours today. Can you say "exhausted"!?! The kids did great though. Emma stayed awake for a good portion of the trip, so that has left room for extra whininess today. Abby woke up at about 1:30 and stayed awake until we got home...and Nate slept from 7:30 on (minus a few paci-putter-backers and a feeding or two). Overall, they did great. At about 1:00, I was feeling insanely jealous of the little girl on the Hampton Inn billboards, but we did make it all the way home and into our own beds...thankfully.
We had a great time on our trip, but it is soooooo nice to be back in the great state of Flo-reeee-da. We all wore shorts and t-shirts today and loved every minute of it. All that aside, it was a great trip. The kids loved being in the country at Jay's parents' house. They loved riding the go-kart (gotta find the memory card I took those pictures on), playing "orphans" in the woods, and shooting clay pigeons. I was a little reluctant when they let Abby pull the pigeons for the shooters, but she came out pretty unscathed. Of course, she is 5 years old now...virtually grown.
Nathan didn't know what to think about all the gun shots, and we got a kick out of him blinking his eyes hard each time a gun went off. The things we put our kids through...The kids had a blast with their cousins and extended family! Abby cried off and on during our trip home because she was thinking of Kayla and Daniel. This is when it stinks to live so far away from everyone. The fam was so kind to bring their new Wii to let everyone try out...read that "get extraordinarily sore in muscles you didn't even know you had while you try so desperately to beat your 7 year old nephew in Mario Kart and bowling". I got purdy good by the time we left...and I realized that we could only get a Wii when they come up with some new way for kids to raise themselves and come out alright in society. I was totally hooked. I still see Mario Kart twisting around corners in my head when I close my eyes. Seriously...I need help.
I have realized that I didn't have many pics of Emma from this Christmas...and all the ones I do have of her, she looks half-drugged. That may totally be because she had one nasty cold for a good portion of the trip and is still hacking some nasty junk in her chest. But that didn't stop her from being her cute-but-onery self.
And one last one...Abby after she sat on a whoopie cushion she got for her birthday. Totally hilarious 5 year old humor. I can't wait to get my own!
Okay, now it is imperative that I head to bed for a good night's sleep because tomorrow night brings...Operation get Nafey to sleep through the night. Boo-yah!

Sunday, December 28, 2008

5 years


My dearest Abigail,

We went for a walk the other day, and you rode your bike like you usually do. You would ride circles around us and sometimes ride fast to the end of the sidewalk and then wait for us to catch up...like you usually do. When we reached to the entrance of our subdivision, I told you that you could ride the half-mile back home as fast as you wanted by yourself. You looked at me with disbelief and gave a surprised "Really?" I nodded my head and told you to watch for cars, and you started off towards home.

I started to second-guess why I had allowed you to go on by yourself as you got further and further away. You soon turned a small curve and was out of my sight, and all I could do was pray that God would protect you on your journey.

You were so proud of yourself as you sat next to your bike in the driveway waiting for us to meander home. You said "that made me feel like a grown-up girl". I smiled, but it broke my heart just a little. You are growing up. In a few short months, you will be starting school and will be out of my sight for a little bit every day...and I can assure you that I will always pray that God will protect you on your journey.

My Abby, the past few months have been a big turning point in your life, it seems. You are looking older, acting older, and even talking older. Sometimes I look at you and wonder when it all happened. I see a little change each day.

You have more energy than I could have ever imagined and a heart that is so kind and tender. You love people with everything in you. You are a natural born leader who makes friends within 30 seconds of getting to the playground, and you are usually very attentive to include Emma in your games with the kids your age.

This year, you have learned to climb on top of the monkey bars, do pull-ups, ride a bike without training wheels, hula-hoop the longest I have ever seen anyone do, read beginner books by yourself, climb to the tip-top of any tree (much to your mother's chagrin), whistle, snap, make your bed, call out your first song in church, and try everything on your plate at least once. Like I said, you are growing up on us.

But the main change we have seen in you this year is how tender your heart is. Recently, you and Emma had a few tiffs that left you pretty perturbed at her. After a short separation from each other, Emma decided to make amends, but you were still ticked off, so back into your bedroom you went. After an even longer separation, you came out with big tears streaming down your face and said, "Mommy, I told God that I was sorry." You apologized to Emma, and I haven't had another issue with you about that.

Your relationship with Nathan is unlike any we have seen. You two "get" each other and play together constantly. I never knew that you would be so close with him when there are 4 years between you. He looks at you with eyes brimming with love every time you come into the room, and he smiles the biggest smile when you look his way. You want so bad to be a mama to him and will daily ask if you can feed him a bottle or pick out the clothes he will wear for the day. You are such a big help with him...more than I even imagined you could be.

Your relationship with Emma is like most close sisters in age...you are the best of friends and rely on each other for so much...but you are definitely sisters and argue and pester one another like the best of them. I enjoy listening to your conversations with Emma. She looks up to you for so much, and you are such a great big sister to her most of the time. :)

You are sweet and loving and smart and beautiful and witty...and our baby girl. Although our baby girl has grown up to be a big 5 year old, and I can't believe that has already happened. We love you, Abigail Nicole. Happy 5th Birthday.

Thursday, December 25, 2008

Christmas Round Uno


We've had a great time over the past few days here in Lexington, and the girls are beginning to think that Christmas is a two week long event. They have had so much fun with everyone here...including Aunt Bethany, who teaches them all of the cool things high schoolers do these days. It's totally Beast.
Hailey is gaining weight beautifully now and is already up to 8lbs 5oz. She is starting OT and PT soon to help regain her sucking reflexes and work on strength to help overcome her hypotonia. She has the sweetest little smile ever and will coo at you over and over. She's just a complete doll! I'm gonna miss that sweet little thang.
The kids have enjoyed getting extra attention from everyone each day. They have adjusted to the traveling and being off their routines pretty well, and they have REALLY enjoyed opening presents this year.
Pawpaw, Nana, and all 4 grandkids:
Bradley, Bethany, Amber, Ashley and Jared:
I have laughed so much hanging out with Bethany (my littlest little sister), and we will have so many inside jokes that I am sure will crop up for years to come. It's been a fun few days.
We are leaving in the morning to head to Western Kentucky for round deuce of Christmas with Jay's family. The girls are excited to start all over again...let's just hope that the colds they have won't last very long. We hope everyone had a wonderful Christmas today!!

Friday, December 19, 2008

From our family to your's


You better watch out...
You better not cry...
You better not pout...
I'm telling you why...
Santa Claus is coming to town!
We're leaving for Kentucky in a short while to visit family for the holidays. We hope everyone has a wonderful Christmas and New Years!!!
I'm not sure if I will be able to post much while we are gone, but be sure to take a peek around the 28th for Abby's birthday post. I can't believe my baby girl is going to be 5 years old in just a few short days. Until then, hope you have a BARE-Y CHRISTMAS!!! (Come on, you know I couldn't resist.)

Thursday, December 18, 2008

Christmas is so anti-climactic


At a recent wedding shower...

Me: Emma, who are you going to marry when you grow up?
Emma: I'm going to marry Jolee.
Abby: Oh Emma, you can't marry Jolee. She's a girl.
Me: Who are you going to marry Abby?
Abby: I'm going to marry Nathan.

What can you say? We are from Kentucky.


So, we had our family Christmas last night. In my still food poisoned stupor, I woke up from a nap (did I mention that I slept almost ALL day long??) and found that the kids had arranged all of the presents in neat little piles for everyone to open. They were so excited. I, on the other hand, was in a nauseous daze, but what's Christmas without a little puke to spice up life? I was in pajama shorts and a t-shirt from high school Powder Puff days...not exactly what I was planning for Christmas attire. However, the kids had waited all day. Heck, they've had a construction paper ring thingamabob for the past 2 weeks where they tear off a ring for everyday counting down until we open presents. They were READY, to say the least. Nevermind the fact that it was 80 degrees outside and they were wearing shorts and t-shirts...it was CHRISTMAS in their eyes!
It was a good night. I was too nauseous to care that all of them were opening presents at the same time. Usually, we have a pretty good reign on the one-person-at-a-time-take-your-turn sort of opening presents way...but I just wanted to go back to bed (being honest here) and didn't care to intervene last night. The kids loved their presents and have played with them all day today (hence the reason we opened presents early).

Emma did manage to cut a hole in a brand spankin' new Princess shirt we bought for her. She said she was trying to cut off the tag. Being the Martha Stewart that I am, I sewed the hole up for her...hear that, hun. Sewed it up! Unfortunately, I could not thread the needle with actual thread (seriously, I tried for 30 minutes), nor could I find our needle-threader, so I used dental floss to sew it up. It was the only thing stiff enough to fit through the needle, thankyouverymuch. Anyone have any idea how dental floss does through the washer?

All in all, it was a wonderful Christmas. We head out to Kentucky tomorrow afternoon. Better get to packing...

Wednesday, December 17, 2008

My toilet and I are becoming quite close these days


Abby and I went on a date last night for her birthday dinner and some last minute shopping. She chose to go to Chili's because it is all of a sudden her favorite place to eat ever. She ordered the mac-n-cheese and hot molten chocolate cake (which was incredible, by the way). I ordered the fajita quesadillas with a side of salmonella. You can't go wrong with that, so I've been told.

I knew the food didn't "sit right" in m'belly, but I thought it was because I had the chance to actually sit and enjoy my food for the first time in oh, 5 years, give or take a few. Obviously, my stomach is used being quickly showered with half-chewed food and doesn't quite know what to do when it doesn't need to work as a gizzard.

But no, that wasn't it at all. And let me just say that after getting food poisoning pretty close the being on the heels of the stomach virus we had a few weeks ago, I'll take the stomach virus. It's a lot less brutal. Let me just say that the past few hours have been plain horrid (said with a perfect English accent).

I realized that I needed help with the kiddos when I threw a bottle of formula to the poor Nateman on my rush to hurl whatever contents were left in my stomach. I was really hoping that he would figure out how to feed himself, but it was just wishful thinking. The girls ate honey buns for breakfast because I couldn't get up to fix them anything. I decided to call for reinforcements and Jay came home to keep the kiddos while I spent the remainder of the morning sleeping.

I feel like a new woman now! I'm a very tired and horribly weak woman, but one that is thankfully getting better.

For Abby's birthday dinner next year, I think we'll stick to just eating dessert.

Monday, December 15, 2008

Santa came early...and I was goooooood this year!


Jay and I are not good at keeping secrets from each other...which is probably a good thing in the whole scheme of things. But it is not good when it comes to gift-giving. He did surprise me one Christmas by making me homemade Baklava...sorry ladies, he's already taken. That just so happens to be one of my favorite things ever. It's right up there with chocolate covered cherries and tiramisu and money that grows on trees. He made it all by his lonesome one year pre-kiddos, and it was deeeelish. Can I get an "awwwwwwwww".

But for the most part, we can not keep our gifts a secret from each other. I mean, he knows to expect new underwear and Reeses Peanut Butter Cups in his stocking, and I expect to find Lindt Truffles and Beef Jerky (except that I already ate all the beef jerky...he let me have it early). By the way, I need some more ideas for his stocking...come on, something original...like new socks or t-shirts or something.

My Christmas gift came in the mail the other day, and my darling husband let me unwrap it and set it up to play around with before we left for our Christmas vacation. Thanks babe! I highly recommend this fun little toy for any photographer or designer...it is so fun to use and makes editing so much easier. For the first time in eons, I took my camera to the park the other day to catch some shots of the kids...just so I could practice editing them with my new toy. I'm loving it. You're the best, darling! Thanks for my Christmas gift!!

Sunday, December 14, 2008

He's even cute in his ugly-face cry


Yes, I am fully aware that I will get a year's worth of hate mail over this one, but it ain't all just milk and cookies over here. Honestly, I have no idea what milk and cookies have to do with anything, but I thought it sounded perfect there. Anywhoooo...

The poor kiddo displays pouty-lip if you even just look at him cross-eyed, so using the "I mean business" voice just breaks his heart. And yes, it did break my heart the first couple of times he boo-hooed when I caught his TPing game, but now it is just comical to me.

Thankfully, he has stopped carpeting the bathroom floors with toilet paper since this video.

Thursday, December 11, 2008

Our neuro appt


We met with our neurologist again today to go over what was discussed during our visit with Dr. Shoffner in Atlanta and the testing that he is doing from Nathan's biopsy. While we were there, we found out that Shoffner tried to contact our neuro a few days ago regarding Nate, but he was out of town at a conference. Argh! Our neuro said that he would call him back in the next few days to find out why he was calling. I'm terribly curious as to why he called...we are not expecting any results back for a good 4 to 6 weeks more, so it is so killing me not knowing why he called so soon into the testing period of Nathan's muscle.
Today's visit was rather uneventful, but we did learn a few things...our doc is fairly confident that Nathan has some form of muscle disease, but it does appear to be mild at this point. And he also shed some light into the reason why Nathan solely belly breathes when he is awake: his diaphragm is weak. Your diaphragm is a muscle, so it makes perfect sense that Nathan's is weak since his "core" seems to be the weakest part of his body. At first, we thought his belly breathing was due to respiratory muscle weakness, but that has been proven not to be true since he doesn't have a problem with recurring respiratory infections. His diaphragm being weak makes so much sense.Nate's tone looked great today! It has over the course of this week...as he is having a great week and has been back to his cheerful and loving self for the past couple of days. The tone in his ankles was still a little low, but it was even a lot better than it usually is. I think he is finally over being sick 3 weeks ago! And he is eating like a champ now...his motility seems to be back to his baseline. Nateman weighed in at a whopping 17 pounds 13 ounces at today's visit and was 29 inches long. He falls in the 67th percentile for height and the 3rd percentile for weight. That's one long and skinny boy for you. I think I need to try to bulk him up some more before we see GI again in February.So, no biopsy results back yet, but our neuro said that it does look like Nathan probably has a mild form of mitochondrial disease. His labs and clinical presentation point to this, and this is not new information to us. This is something we have expected over the course of the past few months. Dr. Shoffner even included this as a probability in the 11 page letter he sent to us after our visit last month. Of course, we are going to wait on the biopsy results to see if they can confirm these suspicions and go from there. Thankfully, our neuro reiterated that whatever Nate has is mild at this point. We just need to make sure we try everything we can to keep him from having a metabolic crisis that could cause permanent regression in many areas, though we know that we can not control this happening entirely. And we wait...to see if the biopsy can tell us anything.Nathan did great during the long disruption in his schedule. It's been a while since we have been to a specialty appt, and it is getting more difficult to take him and keep him entertained the older he gets. Thankfully, these appts are getting fewer and fewer as we grow closer to a diagnosis.

Wednesday, December 10, 2008

One of the downfalls of the 80 degree winter days


Quote of the week courtesy of the darling hubby in the hood: "I wonder if I am ever going to miss having to say 'Go get your pants on!' all the time." And for all you nasty-minded ones, he was not talking about me when he said this.

And courtesy of the crazy 2 year old: "Dear Heavenly Father, I love you God. I hope Nate don't pull my hair. And I hope Abby don't pester me. A-MEN!"For those who really know me, you know for a fact that I despise snakes. Pure evil, I tell ya. They slither and slide and are natural born killers...not to mention the fact that they just give me the heebeegeebees.
So, we come home from taking the kidsChristmas-light sight-seeing last night, and I go bee bopping around the van to get Nate out of his car seat. What is curled up waiting for me behind the van?

He almost ate me.

I screamed, just like any sane person would do when faced with 2 needle-sharp fangs slithering your way.You know what my crazy hubs did? He danced around the long evil one until he got in a good position to PICK IT UP! And then he let our precious little girls pet it...like it was some kind of animal of something. Emma especially loved that it wrapped its tail around her finger and cut off all circulation so that we must now discuss amputation. I promise, I think she would have slept with the snake if we would have let her. She loved it and kept trying to pet its head...where the poison is stationed and everything.

However, I think Emma only loved the dang thing so much because she knew that I hated it. Yes Em, she's our little teenager in a toddler body. She makes a point to love the things we don't approve of. If 2 years old is anything like 15, we are in trubble with a capital TRUB.

Just at dinner last night, she proclaimed that she hated puppies. (loves snakes, hates puppies...get this? HELP!) I piped up that "hate" is such a strong word and I didn't like her using it, to which she replies, "But I hate them."The snake...well, I hope it was smothered to death since Jay let the evil thing loose in the front yard where my children play and I walk around barefoot. He's going to eat us all. Nevermind the fact that it was about 8 inches long.

Tuesday, December 9, 2008

Sleep when the baby sleeps!


Apologies all around for the lack of posting. Ever since Nateman was sick, he has decided that sleep at night was for the weak. It's totally like having a newborn all over again...though he's one LOUD newborn who has seemed to have lost that delicate newborn smell somewhere along the way. *sniff, sniff* Okay, let's just call him a lousy sleeper...who obviously hates his sleep-deprived mother. And who never seems to get tired of crying all stinkin' night long and then waking for the day at the ripe ole' time of 6:00am sharp...with a poopy diaper. We've had a grand time around here lately. (Read that with as much sarcasm as you can muster, please.)
My blogging time has recently been spent nestled on the couch snoozing away whilst my girls beat down their doors yelling, "Can we come out yet?" Don't worry, I'm pretty darn good at throwing in some snacks and juice boxes under the door in my sleepy-stooper. That's productive sleep walking at its finest.
Nathan is doing a whole lot better GI-wise. We started giving him solids again yesterday, and he did really well with them. He's still seems to be in a little pain in the mornings, but he does fairly well with it. He is still spitting up a bit more than usual (our PT got a good eye of this at this morning's therapy session), but it doesn't seem to bother him as much anymore. He still gets progressively cranky throughout the day, but we think that is exhaustion more than pain. We still see the happy side of Nathan often, but we are also seeing this new cranky side a lot more...that is new with him, as he has always been this happy-go-lucky kid. I hate seeing him so unhappy at times. Hopefully this will decline when he starts sleeping better at night.Little man had PT this morning, and it was such an encouraging appt. Over the past couple of months, we have been able to change our weekly appts to being every 6-8 weeks now. I love our therapist dearly! I enjoy the friendship we have been able to create over the past few months, and I am truly thankful for her advice and input on Nathan. She has said that there is nothing we can do to change Nathan's muscle tone...thankfully, it has gotten better as he has gotten older, but we do still have quite a few problems with it when he is sick or tired. Nathan may always have issues with lower muscle tone in his core and higher muscle tone in his legs during these times for the rest of his life, but it also may continue to improve as he gets stronger. Regardless, all we can work on is his strength...which is VERY good right now. So good that there is virtually nothing we need to do at therapy appts anymore. We know what we need to do at home to help the muscle weakness he gets after he has been sick, so there isn't a need to go to PT regularly anymore.That is wonderful news!!! I am so thankful to hear and witness this. However, I am honestly going to miss seeing our friends over at the pediatric therapy place so often. We have created quite a few wonderful relationships with the women over there, and I miss them when we don't get to see them. They have been such a help and strength during this difficult year...quite a blessing to us in so many ways. But on the other hand, I am indeed thankful that we have come to the point that we don't need to be there as often as we have been. A few months ago, I never would have thought that we would have reached this milestone...what a wonderful milestone to reach! We will still go periodically (our next appt is for late Jan) so they can keep tabs on Nate's progress and still be in the loop shall we ever need to come more frequently again.
Everything is slowing down around here, and it is so wonderful! I am finished Christmas shopping...oh wait, no I still need to get something for Jay's stocking (NEED IDEAS!!!), but I'm finished for the most part. All of the photo shoots for this time of year are done and photos are sent off. I'm nearly done wrapping all the gifts. Ahhhhhhhhhhhhhhhh. Now if I can just figure out how to keep the kids from murdering all of the breakable ornaments on the tree...

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