Friday, January 30, 2009

A ploy for attention, maybe?

I recently saw a plaque that said "Grandchildren are God's reward for not killing your children". When I have granchildren, I am going to buy the biggest plaque I can find with that saying on it. Heck, I may even paint it on the side of the house in BIG BOLD LETTERS.

Naptime came around today and guess who we couldn't find...Bear-Bear, the one and only. I gave Emma another bear (whom she so kindly refers to as Bear-Bear's Mommy) and told her that she would just have to make due with that one and if she throws a fit and wakes up her brother, so help me sistah! You get the picture. She actually did pretty well...until about half an hour later when she came to me in full freak-out mode...

I thought she had just reached her breaking point due to the lack of Bear-Bear...until I saw the orange stream of liquid oozing out of her nose that sent my mind into all kinds of spinning. After calming her down, I realized that there was indeed something small and orange way on up inside of her nose.

Me: "WHAT DID YOU DO?" (Really trying not to freak out as I realized that I probably needed to brush her hair a little more and make her wear something that matches before I rush her to the pediatrician who would tell me that "sorry, the foreign object has traveled up her nasal cavity into her brain where it will remain lodged and continue to spill orange liquid for the remainder of her days") (It truly is amazing what all can run through your head in 2 seconds flat during a moment of crisis...and yes, something stuck inside your child's teeny-tiny nostril is indeed a moment of crisis, for those of you who have never encountered such a situation.)

Emma: I just wanted to make my nose look different.

In a split-second of clarity, I held the unclogged nostril shut and told her to blow. After frustratingly trying to teach her to blow through her nose and not her mouth, she finally did it. Out shot a popcorn kernel followed by what looked like a white miniature jawbreaker, which obviously used to be orange.

When my heart rate slowed down to a sprinter's pace and I realized that we had just dodged the bullet in the jawbreaker lodged in brain thingamabob, all I could do was laugh...but not before threatening Emma within an inch of her life to never ever ever ever ever stick anything in her nose again. Oh, that is soooo Emma.

And no, she never did take that nap. Too hyped up on sugar.

Thursday, January 29, 2009

'Tis the season for sickies

So, I've been fighting a nasty cold for the past couple of days...something I'm guessing I got from wiping Nate's leaky faucet of a nose with the bottom of my shirt. Nice, huh? I figured that the snotty germs walked their little slimy selves up my shirt...through the mountains and the valleys (sorry, couldn't resist) and hopped their grimy behinds into me nose holes. Oh, ye scurvy dogs. Arrrrrggg! Obviously, this is the antihistamine talking.My sweet darling hubby-dubs asked if he needed to come home early lest I murder the stowaways, and I kindly told him that after surviving a stomach virus and food poisoning in recent months, 'dis ain't nuttin. Sure, my sinuses may very well explode any momento and spew grimy scurvy snot germs all over the cabin, but we're all good. Rock on me hardies!
He took the girls grocery shopping last night in order to prevent the inevitable lunch of peanut butter and jelly spoons since the bread ran out...even the heels of the loaf. That never happens. The girls came bee-bopping back into the house with a sweet little "Get Well Soon" balloon that they bought for me. Okay, you can say it...Awwwwwwwww. They truly are sweethearts.Fast forward to this morning as I stumbled into the living room in my Nyquil-induced stupor...the girls were watching Scooby Dooby Doo, Where are you? (you know you'll be singing that song for the rest of the day) when Abby looks up and proclaims "You gave me your sick germs. I need my balloon back."
After a good laugh and a thermometer reading of a very mild fever, she did indeed get to hold the Get Well balloon for a while...until Emma came to me with sick eyes and said it was now her turn to have the balloon. It's definitely turned out to be the perfect cold, rainy day to lay around and watch cartoons all day.As for Emma's "sick eyes", she gets this glassy-eyed look a day or two before she gets sick...this is something she has done since she was itty-bitty. Nathan's whole face gets puffy a day or two before he gets sick. And Abby...well, I don't know she is getting sick until she tells me. Funny how they all respond differently.

Wednesday, January 28, 2009

Look who's walking

You can definitely say that what the kid is lacking in style, he definitely makes up for in determination! Nathan wants to walk so much that he doesn't crawl nearly as much at all. He wants to either walk or be carried.

We had a great PT appt yesterday (or like Abby calls it: the PTologist). We are on an "every 6 weeks" schedule, so it has been a while since we have been. We have seriously missed seeing everyone from there, so it was so good to catch up with them. Nathan put on his typical Nathan-charm and was the biggest flirt ever. He gets showered with kisses from quite a few of the ladies at our therapy place, and he soaks up every bit of it. These women have essentially watched Nathan grow up over the past year...they have been there with us through trials and triumphs, and the bond they all have with Nate is wonderful to see.

Anyway, his therapist did pick up on a few problems Nathan is having with his hips and ankles when he walks that is causing him to buckle and crumble quite a bit more than usual. Some of it could completely be just "learning to walk", but some of it is due to his tone problems. She wants to give him another 6 weeks to work more on walking and then will probably send us to get him fitted for some orthotics that fit along his feet and shins to help keep his hips from rotating inward and help keep his ankles from pronating. Kids with low tone often have to work harder to make their muscles do what they want them to do, and having orthotics can help aide in this process. We'll see in the next few months whether he will need them or not.

And yes, Nathan was indeed in shorts and a onsie...gotta love these Florida winters. We had a few 20 degree nights last week, and this week it is in the upper 70's. Crazy!! Don't mean to rub it in to all of you trying to endure the ice/snow storm in the midwest. We keep trying to convince Jay's parents to drive down here since it looks like they won't have any power for a week or two from the nasty ice storm they got in Western KY. I do have to say that this is my absolute favorite time of year down here.

Saturday, January 24, 2009

11 months

My dear little destructo,

I put you down for a nap in just a diaper the other day right after I had given you a bath. When I went to retrieve you a couple of hours later, I was greeted with a nakey boy who had peed all over his crib. Ummmm, when did you learn to take off your diaper? For some reason, I see this to be the first of many streak-attacks we'll have from you around here.This month has been incredible, Nate! You have looked the best this month that you have in your entire life. You had a 5-week streak of not being sick, and you took off in your milestones during this time. You are standing on your own and almost walking, laughing all of the time, and just acting so big. You started enjoying food this month and have recently gone through a huge growth spurt, gaining a full pound in just a couple of weeks. It has just been so much fun to see you enjoy your bottles for the very first time and even more, enjoy eating anything and everything we give you. I love seeing you eat so much and ask for more!! And I have to credit you with a milestone that neither of your sisters accomplished...last Saturday, you started holding your bottle all by yourself. I can not tell you how excited this made me!! I love seeing how big you look as your feed yourself a bottle."Destructo". That's our name of choice for you these days. Even Abby and Emma call you that now. You have started pulling every single book off your bookshelf numerous times each day, pulling all the pots and pans out of the cabinet, and biting the bathtub foam letters into little pieces. Vacuuming the house takes twice as long these days due to you unplugging the vacuum cleaner every time I turn my back. You are our little destructo...and we LOVE having a boy in the house.After months of trying to get you interested in books, you will finally sit still for them. You will sit and listen to "Go Away Big Green Monster" as many times as we will read it to you. You also love to turn the pages of your tractor and truck books during church. But your favorite thing to do with books is pick them up, take a look at the cover, and then toss them across the room. I guess my predictions of you reading Tolstoy by next year may not come to fruition after all.You love to be outside. You like to eat dirt. You still spin the wheels on all of your cars until you are completely satisfied with how they are turning. You swipe all of the fridge magnets off of the fridge every single time you pass by it. You give the best kisses ever...albeit, still very open-mouthed slobbery ones. You love your sisters almost as much as your love your paci. You are more of a Daddy's boy than I ever thought possible at this age. You still bury your face into my chest when you are sad or tired. And you still give the best smiles in the whole world.
I can not believe that this time next month, we will be telling you "Happy Birthday"! In the meantime, happy 11 months little destructo!

Thursday, January 22, 2009

The Fire Place

Emma and I went out for her birthday dinner last weekend, and she obviously chose to go to the Japanese Steakhouse (you know, where they cook in front of you). She loves the food...hates the fact that they use a mountain of fire to get everything started...and the fact that they do the cool onion volcano with fire coming out of the top trick, which I find is way cool. But alas, the food is too good for her to pass up just because the place "scares her to deafers". It was actually a fun dinner...despite the fact that she clawed her way to the top of my head each time she saw fire anywhere in the restaurant.

So, Miss Abby and Miss Emma both had their well checks today. Abby is a whopping 46 inches and 42 pounds, and Emma is a teeny 34-3/4 inches and 26 pounds. Both are healthy, and Abster had to get her 5 year old booster shots...3 of them, poor child. That totally warranted a trip to the drugstore for some pixie sticks.

Emma has won herself a trip to our beloved therapy place for an evaluation for speech therapy. The great news is that her cognitive recognition in speech is way above her age, but she is just not forming her words correctly. It seems that the low muscle tone in her face is causing a problem in the formation of a lot of the words, and hopefully a speech therapist can give us some pointers on how to help her at home. Of course, I will miss her coming up to me and saying, "I wanna thee my thithtah." (For those of you who do not routinely speak "Emma", that would be "I want to see my sister".) And I will really miss referring to her as "mush mouth".

My niece, Hailey, had a good week of doctors appts. The cardiologist has told them to expect heart surgery around her first birthday, so that will be in the fall. Ashley said she loved the geneticist and felt like they were really taken care of. Hailey had quite a bit of genetic bloodwork done and should have results in a few weeks. Ashley said the doctor was really interested in Nathan and went through his medical history and pictures intensively to see if they were related in any way to Hailey's. She said that she wants to stay updated on Nathan's progress and information because her specialty is dealing with mitochondrial cell dysfunction. I thought that was very interesting. I'll update more on Hailey when the lab results come back.

Wednesday, January 21, 2009

The power of your prayers

I wanted to give a little update on the little boy I asked you to pray for a couple of weeks ago: Samuel Knight. Little Samuel was able to come off ECMO (the heart/lung bypass machine) a week ago and he has since been extubated from the ventilators as well and breathing on his own with the aid of a nasal cannula. I have thought often about the words his mother said in her blog post from last Wednesday after he was taken off ECMO:

"Samuel had surgery to take him off of ECMO. He did fabulous and is now resting comfortably on a ventilator. The surgeon came to talk to us after the procedure and told us that Samuel was our little miracle. They don't often see 2 year old children respond well to ECMO and Samuel's recovery has been very surprising to all of the doctors. We all know that this is really the work of the Lord and that he has worked a miracle in Samuel."

Isn't it absolutely incredible to see this display of answered prayer!? Samuel is doing outstanding now, all things considering what his little body has been through over the past couple of weeks. He still has a long road of recovery ahead of him, so please continue to pray for the little guy.

And while we are on the subject of prayer, please keep my sister and niece (Ashley and Hailey) in your prayers tomorrow. Hailey has her first genetics appointment tomorrow, and the first appt is always very daunting and exhausting. I pray that they get good news regarding Miss Hailey...who, from what I've been told, is a whopping 10 pounds now! Hopefully they will also get some good news from her cardiologist appt today as well.

And you know that I simply can't leave many posts without pictures, so here's another proof that God is a merciful God who hears and answers prayers:
The little dude isn't quite walking yet, but he is so close. He will take a couple of good steps and is still trying to figure out the ins and outs of balance in the meantime. It was just a few months ago when we wondered if Nathan would be capable of such monumental milestones, and look at him now! The Lord is so good!

Tuesday, January 20, 2009

3 years

My dearest Emma,

I laid my seat back to take a nap on our way home from Kentucky at Christmastime, and you instantly stuck your little hand inside mine as it dangled over the seat. I clutched it inside my fingers and was mesmerized at how tiny and delicate your hand felt. I have held that same hand hundreds of times, but it never struck me how little it was until that moment. My arm soon fell asleep and began to ache, but I still held you hand until you finally pulled it away...I didn't want to let go as I realized that there will be a day when you stop putting your hand in mine "just because". You will never remember those few moments we shared hand in hand, but it was branded in my mind. I can still feel your tiny hand in mine.

You had to grow up a lot this year. As I gathered the photos together over the last year, I realized that you look a lot older than you did this time last year, but your physical features pale in comparison to how you had to grow up emotionally over the past 12 months. You went from being the baby of the family to the big sister; the one who never left our sides to being tossed around to many different babysitters nearly every week for a while. I am still amazed at how well you adapted to these new roles.

Your personality really came out this year. You are hilarious! We are constantly laughing at whatever witty statement you are saying or crazy antics you are showing. You seem to "get" how to make people laugh. But just as much as you are funny, you are just as much ornery, sassy, and just an all-around stinker-dink. You are in trouble about as much as you are behaving, and you always keep us on our toes on new ways to figure out how to discipline and teach you about having a "good heart". Oh, are a handful, to be exact. I pray for you often...mostly, I pray for guidance in how to deal with you, and I also pray that your difficult shenanigans are completely temporary and something we can chalk up to being a toddler...albeit, a toddler going on 15.

All of that being said, you are still such a joy! Your smile is gorgeous, and your laugh is priceless. We love hearing the little lisp you have acquired, and I almost hate to teach you the right way to say words you routinely mispronounce because I love hearing the flubbed versions come out of your mouth so much. You are so cute, I can't stand it. I love the fact that you still love to "snuggle, snuggle, snuggle" as you tuck your tiny body into our arms and just melt into us. You've always been my little snugglebug, and I hope that continues for many years to come.

Bear-Bear is still your very best friend in the entire world. We have had many "Bear-Bear search parties" this year, but they have always come as a success...sometimes hours later, but he has always made it back into your beloved arms. We have found Bear-Bear in your Daddy's t-shirt drawer (taking a nap, of course, while you were using the drawer as his bed and forgot about it), in the refrigerator (beside the chocolate syrup), in dirty clothes bins, in the bathtub, behind beds, etc etc etc. Each time we lose him, I feel like I almost miss him as much as you do. He has become such a permanent attachment to this family that he's almost like a son to me. A stinky, worn-out, tattered son whose bright pink nose routinely falls off. I don't know when you will give Bear-Bear up, but I can assure you that if I am able, I will keep him in our family for many years. I might even consider giving him back to you in my will.

You have such a love-hate relationship with Abby and Nathan. A quintessential "can't live with 'em, can't live without 'em" type of relationship. Honestly, I don't know how you are going to react when Abby goes to school in a few months. You two are inseparable day in and day out, and you are completely heartbroken that you can not be in the same class as Abby in kindergarten. I think you will enjoy the added attention you will get when she is away, but I do think it will take some time for you to get used to losing your playmate. In the meantime, you are learning to play with Nathan better without pestering him so much or carrying him around by his head. Hopefully, you two will learn to rely on each other more for company over the next few months.

My little Emma, I love you darling. You have been such an incredible blessing in our lives over the past 3 years, and we are so very thankful for you. You bring laughter and love and joy into our family each and every day. Happy Birthday, my sweetheart. I love you, Emma Elizabeth.

Saturday, January 17, 2009

From the mind of the Nafey boy

"Ahhhh, once again Mom is showing me her undivided attention and taking pictures of me because I am so dang adorable. Seriously. I've heard her say it. And you know what? I'm about 99% sure that I am her favorite because A. I'm adorable...point made, B. I'm her only son...and you know what they say about mothers and sons, C. If I play in the toilet, I give her my pouching-lip thing. Call it my secret weapon, if you will. She instantly forgets what I'm doing wrong and scoops me up with hugs and kisses. I've so got her wrapped around my pinky finger. She didn't know what hit her when I was born. Yeah, I know I'm good stuff here...
Whoa, whoa, whoa sistah. I don't think so. This is my time. You just need to back yo' bodunkadunk back up in 'dis house...
That's more like it. Got me a little shooken up, but all's good. Stay strong. Gonna hold on 'til my knuckles turn white. Okay, where was I? Oh yeah...reasons why I am mom's favorite. Did I mention my stellar ability to hold my own? Yeah, I'm no push-over...'Mama's big boy', that's what she calls me. 'Cause I'm tough. Nobody's gonna mess with me...I said BACK-UP sistah! This is my show. Mom wants to take pictures of me...not yo' ragamuffin self. I mean really? Have you even brushed your hair today? And you sho' got some stank breath going on. Now back up on outta my space, ya hear?
Okay, now you're just being rude. Kinda crowding me a little. Hard to breathe. My ear! Squished...ear...can't...hear. Knuckles...white. Still..strong. Holding my own here. Mama's big boy. I can handle it.
Awww, forget it. It's totally not worth a squished ear. Who does she think she is anyway? Stinkin' ragamuffin kid."

Thursday, January 15, 2009

Things that make you feel like a kid again...

~eating all the marshmallows out of the Lucky Charms box.

~getting out whatever you want and not putting is back up.

~playing in the rain.
~two words: chocolate milk.

~better than that, blowing bubbles in your chocolate milk.

~riding your bike with no hands.
~running barefoot as fast as you can across scalding asphalt.

~running through the sprinklers fully clothed.

~for that matter, just running...every where you go.
~Tom and Jerry marathons.

~singing the "banana-fana" name song as loud as you can while you spin around in the really is harder than it sounds.

~dirty fingernails.

~eating as much candy as you possibly can without worrying about how it will look when it ends up on your butt and thighs.

~pretending like you are orphans trying to stay away from the orphanage and doing a mighty good job raising your brothers and sisters on your measly bakery salary. What? We played outside a lot as kids. Those mud pies were what kept us together as a family.

~riding a go-cart through muddy water and not caring how messy or cold you get.
~having absolutely no cares in the world besides whether or not you can convince someone that you don't need to take naps anymore.

But since I obviously can't be a kid again, I sure do enjoy living vicariously through my hooligans each and every day. (The pics were some more I found from Christmas that I had forgotten to post.)

Tuesday, January 13, 2009

The last of the girls' birthday pics

Jay: Okay girls, who's gonna brush their teeth first and who's gonna go potty?

Abby and Emma: I'll brush my teeth first!!! (have no idea why they fight over this every single flippin' night)

Jay: Okay, Mama (sometimes he calls me Big Mama, sometimes he calls me Big 'un. I'm estatic on the rare occasion he just calls me mama...even though we took a minor oath years ago that we would never do such a thing), pick a number between one and ten. Abby, what's your number?

Abby: 2.

Jay: What's your number Emma?

Emma: (giving Abby the stink-eye for picking her number) 5.

Big Mama: The number is 8.

(In all honesty, I was feeling sorry for Abby losing her humpteenth game of "Don't break the ice" earlier, so I was trying to let her win. I didn't even think Emma knew any numbers over 2.)

Abby: (said in the absolute best sulk evah) Awwwwww, I always lose.

Jay: Well hun, you're just a loser.

Nice one. Score one for self-esteem.
We met some friends for breakfast this morning as they were down visiting a couple of pediatric specialists here. Her daughter had a muscle biopsy with Dr. Shoffner last November and received the results around mid-February. I say that because we have had quite a few ask if we have received any word yet on results. We are at the 10 week mark right now, but I don't truly expect any news until next month. I have to admit that the wait has been fine until this month...I am getting antsy. But hearing about how long it truly does take (not what the docs tell you...which has already passed by now) really made me take a step back and not be so nervous everytime I see our mail lady these days.

In the meantime, we are loving watching our little man grow stronger and stronger each day. It is so much fun seeing him achieve milestones and personality. He is still struggling with reflux and sleeping pretty lousy each night, but he looks so good for a good portion of the time he is awake. That is a true blessing!

Monday, January 12, 2009

The slumber party...

...was a huge success. No fights, no tears, no "I wanna go home"s. The girls had so much fun that they want to have slumber parties every weekend. Thankfully, I had already thought to apply the "special occasions only" rule before the party even started. Abby, bless her little soul, was 4 shades of crazy through the night. "I just can't help it mom! I'm just too excited!!" was her lame excuse...the lame excuse that totally worked for her for the duration of the par-tay. She was running and jumping and bouncing and being so dang sassy trying to impress her friends. The funny thing is that these are the same exact friends we get together with every week...and have since they were babies. Lesson: sleep-overs make a kid CRAZY!The kids only required 3 reminders to go to sleep. Emma found a spare bowl of popcorn and was apparently keeping all the other girls awake with her loud, incessant chewing. By 10:00, all was quiet and calm in the land of the livingroom fort. One of the girls (not my kid) woke in the middle of the night and crawled into bed with us for the rest of the night. I totally didn't think of that being a "sleepover no-no" until the next day when I was talking to my sister-in-law. Good thing it was one of my best friends' kids.Nathan had a rough night that night of the sleepover...of all the nights. Everytime I brag about how good he is doing on here, he pulls a fast one on me. The poor fella has had a rough few days with his reflux and we just aren't sure why. He is spitting up a ton again and when he isn't actually spitting up, you can actually hear the reflux going up and him swallowing it all back down. He's had a few rough nights and some painful episodes during the day. Since he is drooling a ton again, I think that he is starting to cut some more teeth...that may be the culprit to the increase in reflux again.Anywho...the sleepover was fun. The girls left the next morning with sparkling fingernails and toenails, a small bag of goodies, red-rimmed eyes, and a sugar high from the doughnut/leftover cupcake breakfast. And due to all of that, it was a huge success. (Since I am still recuperating from the sleepless night, the sleep-over pics are still on my camera.)

Friday, January 9, 2009

Gator Nation, Baby!

What Nathan thinks about the Gators once again being the National Champs of College Football:

Little Nateman looks great right now, doesn't he? He has had an outstanding week muscle-wise and is starting to stand more and more on his own. I think he will start to take those couple of steps on his own again soon if we can keep him well and looking this good. It is amazing how much progress he is making right now!

We did realize this week that we are going to have to invest in a cooling vest for the little guy before the summer months come as it is not taking long at all for his little body to get steaming hot in the upper-70 degree temps we had at the first of the week. The longer he stays outside, the higher his body temp goes, but the "all-boy" boy loves being outside! Anyone know of any companies that custom-make cooling vests or make them in the toddler sizes?

We are hosting a few girls over for our very first sleepover birthday party for the girls tonight. Am I insane? I think I'll definitely be able to get a clinical diagnosis after this stunt. The girls are so excited they can hardly contain themselves. A week ago, I made the freshman mistake of telling two kids who don't completely understand "time" about the slumber party...each and every day since, I have had to explain how many more days until the big day and why they had to wait so long. Since their awakening this morning, they have been mad-women trying to arrange games and toys for everyone to play with and plan events and activities. I think they'll have a blast!So, we're partying tonight...5 year old style (with a little 3 year old style mixed in...poor middle child). We'll have manicures and pedicures, cupcakes, pizza (because you can't have a party without pizza), chic-flicks, popcorn, a big ole' livingroom fort-tent to sleep under and a whole lot of craziness going on. Come if you dare!

Wednesday, January 7, 2009

Popsicle Sticks

We let the kids eat popsicles in the bathtub. That way, there's absolutely no mess...except for the popsicle sticks that remain in the bathtub...
Yes, I am fully aware that the witch laugh at the end kinda takes away from the cute factor. And to Abby's defense, he definitely has a bitable's just so cute and squishy, and the urge to bite is just a little too strong to overcome sometimes. Sticking popsicle sticks in his "cack" (as Em calls it), well, that just causes too many splinters. They have since been instrcuted to keep their sticks out of such cracks and crevices.

Labeled under: conversations you don't ever think about having to have before you have kids.

Give Blood!

I want to update on one of the precious little boys I wrote about last night...Samuel. He is currently on ECMO (a heart/lung bypass machine) in hopes that his body will use every last bit of energy it has to fight off the horrible blood infection he has. He is very, very sick. In the words of his mother, "The hope is still slim for him, but anytime there is hope, I will hold on to it."

Samuel is currently receiving large amounts of blood products to keep him alive. He needs blood, plasma, and platelets and could desperately use vouchers for all 3 products. If you are in Texas, you can help this family by heading to any donation center and directing your donation to Samuel Knight at Texas Children's Hospital (in Houston). Each time they receive a donation in Samuel's name, his family receives a voucher that will go towards the cost of what they will owe for the blood products he has/will receive. If you are in any other state, there are multiple little ones like Samuel who live on blood transfusions every day. Please use this reminder to go and give blood if you are able.

Another way you can help this family is by praying earnestly for them, as they are facing every parent's nightmare. And again, pray for Samuel's healing!

Tuesday, January 6, 2009

A couple of prayer requests

I have mentioned before about how God has sent us numerous people over the past year+ to help with the emotional and medical aspect of Nathan's issues. I am constantly amazed at how he has blessed us in this way...people to give us advice, experience and comfort.

I "met" a woman on an online pediatric medical forum a few months ago. She and I started emailing back and forth because our sons had almost the same exact symptoms...tachypnea, hypotonia, reflux, almost identical lab results, mild muscle weakness, etc etc etc. In fact, there are only a couple of symptoms where they differ. Her son, Joseph, is almost exactly one month older than Nathan.

We have talked in depth about how we both believe that God brought us together during the past few months. She is the one person I email with questions and problems to see what her take or experience is or just when I am having a bad day and need a shoulder to cry on...and vice versa. We both understand exactly what the other is going through right now, and we have had a running joke for the longest time that when one of our boys finally gets diagnosed, it would be diagnosing both osf them at the same time...that's how similar they are. We have emailed almost daily for the past few months, exchanged photos and Christmas cards, and told stories and accomplishments about our other children (she has 2 other boys close in age to our girls). I have prayed for her family on numerous occasions, and I know for sure that she has done the same for us. I consider her a close friend, and I am truly thankful for her and the help she has been to me over the past few months.

My friend and her husband took Joseph (and their two other boys) to Cleveland in November to meet with a doctor who specializes in Mitochondrial Disease. The Dr. said that he does indeed think that Joseph has mitochondrial disease, albeit a mild presentaion of the disease at this time (just exactly what we have been told about Nathan), but he recommended a muscle biopsy to look further into this assumption.

Our little mid-western friends are once again in Cleveland now undergoing the same tests Nathan had in November. Joseph is undergoing a muscle biopsy Thursday morning...just a few days before his first birthday. Please pray for my dear friends.

Also, I desperately ask that you pray for the Knight family. Their son, Samuel, has a presumed mitochondrial disease and is very, very sick right now. He is battling pneumonia and a central line infection and is currently intubated in the ICU. From what we have heard from close friends, it is not looking good right now, and my heart is heavy for this dear family. Please pray for this precious boy and his family. Our God can heal! Pray for healing of these infections for Samuel!

Monday, January 5, 2009

She thinks the whole month of January is her birthday

I mean SERIOUSLY! When did she get old enough to give me this look? She thinks that since she is getting older, her boobies are starting to grow really big now too...she's happy to tell you all about it too, so watch out. I took the girls out on Friday for their 5 and 3 year old pictures and got some great ones that I'll post periodically over the next few days.

Nathan slept through the night for the very first time last night!!! Oh, it felt so good to sleep for 8 hours straight (would have been longer if I wouldn't have gone to bed so late). Nate slept from 7pm-7am...sleep, glorious sleep! Let's hope this starts a trend.

Abby told me a couple of days ago that I looked like I was getting another baby in my tummy. Today starts the first diet of 2009! But man, that food over the holidays was soooooo worth it. Here's hoping I can shed a few of the cottage cheese dimples before swim suit season begins again.

Wintertime in Florida...gotta love those wonderful warm sunny days. I LOVE this time of year here!!

Friday, January 2, 2009

10 some

My little Nafey boy,

Apologies for posting this a good week and a half late...but that's what happens when your 10th monthday lands on Christmas Eve. I didn't want to miss this post entirely though because you have done so much this month! In fact, this month has turned out to be a turning point in your life...a time when things are getting a bit easier with you...and a whole lot more fun!
Your personality has really come forth this month, and we are loving seeing you blossom into a fun-loving boy. Let's start with sleeping patterns...thankfully (and after much prayer...don't you ever think that something is too small to pray about) you are almost sleeping through the night. In fact, you went the entire night (12 whole hours) without eating for the very first time in your life 2 nights ago. You sure did cry a lot, but we made it an entire night without feeding you. Last night (night #2 of Operation Get-Nafey-to-sleep-through-the-night), you only woke up 3 times and only required one paci-putter-backer. I'm hoping you sleep completely through the night tonight. Let me tell you, son...I feel like a new woman. I have not slept for more than about 4 hours straight for the past 10 months, and I am so happy to finally get some good sleep.
We realized this month that you really have a red-headed temper when you get that: whenever Uncle Marty tells you that you can not have the angel Christmas decoration. Seriously, you truly know how to let someone know when you are royally ticked off. You bite your teeth together and growl while puffing up your chest...over and over again until they get the point. It's quite comical and disheartening all at the same time. Sadly, you also do this when you are too tired to crawl around like you usually do. I know that this is because you are frustrated, but I am not too sure on how to help you in the area yet.
You took your first 2 steps while we were at Papa and Grammie's house over the holidays. You took 2 full steps unassisted and we clapped and cheered you on. You haven't done in since being there, but I am still counting those as your first steps. You may not be that close to walking yet, but you can sure boogie when it comes to crawling.
This month, you learned to say "Abba" for Abby and "Baba" for Baby (though I have only heard you say that one a few times). At dinner tonight, you raised your hands for your first successful game of "How big is Nathan?". I just love watching you learn new skills.
Your eating is so great now!! You are eating solid foods without any trepidation and still drinking 16-24 ounces of formula each day. You weigh about 18 pounds and are 28 inches long. You love goldfish crackers and bananas and are slowly weaning yourself from jarred baby food. I just love that we can all eat as a family now and that you can eat almost anything we put on our plates. I pray that you will continue to be able to eat what we eat.
Medically, it was a tough month. After your stomach virus in November, your gut all but shut down and caused you to be in horrible pain for a good while. Through an increase in motility meds and a fluid-only diet, you got back to your baseline motility-wise a couple of weeks ago and are doing exceptionally well right now. We have finally found a good combination of meds to help your gut motility and reflux, and it is so nice to not see you in so much pain anymore. Other than the GI issues, we are still waiting for all of the test results from your muscle biopsy in November. We should receive those by the last week in January. I have mixed feelings about receiving these results...nervous that they will come back positive for mito, but also nervous that they come back inconclusive. I pray that God will give me the grace to deal with whatever results we get and know how to help you through the coming years, my son.So, 10 months. Almost a year...I can't believe it! I can honestly say that it is getting easier around here. Your Dr. appts are dwindling down and you are spending more and more time exploring your world. I am not needed nearly 24 hours a day like I used to be, so I am enjoying the new schedules we are putting into action. You are so much fun right now. Your smile still remains one of my favorite things in the world, and I look forward to watching you grow each and every day. I love you, my little Nathan. Happy 10 months, son.

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