Friday, January 29, 2010


You'd think her mom would give her a plate for that sam-ich...or that there would be a "no electronic devices at the table" rule...or an explanation on why the crusts are the healthiest part of the bread (even though it may not be true). Who's raising this kid anyway?

Thursday, January 28, 2010

For sweeter dreams

My sweet hubby came home from a meeting yesterday evening just in time for the littlest guy and I to venture out to the sleep clinic for another sleep study. Since starting oxygen, the docs have been curious as to if Nate's sleep efficiency and central apneas are a bit improved than previously...we shall know a bit more when we receive the report in a couple of weeks.
Nathan sure has been through a lot in his 2 years of life, and quite a lot of it has not been pleasant for him by any means, with quite a bit being extremely painful. I would totally expect him to freak out at the mere sight of medical equipment or personnel. As he has gotten older, it has been more difficult with some procedures because he understands what is about to happen when he sees certain objects (like the stretchy blue tourniquets he has had wrapped around his arm countless times through his life). I would expect him to freak out...which makes me beam with pride when he accepts the challenge at hand with more courage than I thought would be possible for an almost 2 year old.
Nathan chose to sit on the bed by himself last night during the hook-up process of his sleep study. He calmly watched an Elmo DVD and endured the numerous wires and tape being applied all over his body without complaint (minus the second cannula inserted into his nose which was a total crowd to his nose holes...something I don't think I could muster). He was so brave and polite...and so big. The tech commented on how easy he was, and we both talked about how it was such a mixed blessing...great that he was comfortable enough with all the "equipment" but sad that it was because he has been through so much already. I was one proud mama last night as I watched my darling son.
Nate did fine during the never truly get the best sleep during a sleep study, which is all kind of ironic. But our sleep lab is really great and try to make you as comfortable as possible. They took Nate off his O2 for a little bit through the night to see how his body responded, and I was told this morning that he definitely does better with it on than off, as they saw changes in his heart rate and respiratory rate when they turned the oxygen off. These are changes we have been aware of for a while during the day, so it is interesting that they see these changes at night as well. We get an in depth look at his entire study in a couple of weeks.

He's a special little guy, this son of mine. I'm so happy to be his mom.

Monday, January 25, 2010

The randomness of life

This blog takes the back burner to so many things these, laundry, medical schtuff, laundry, Abby's school shenanigans, cleaning, laundry, whatever we have rented from Netflix, folding laundry, etc. Sometimes I can't wait to get on here and write...about what crazy thing one of my kids have done or said (usually Emma) or just to get some things about life written down before it explodes in my corpus callosom (a part of the brain of which I have no idea what it does other than make me feel smarter for having written it).
So the's neglected a lot these days. It doesn't get boo-boos that need kisses and a My Little Pony Band-aid; it doesn't need something to eat or drink 400 katrillion times a day; it doesn't even need its bodunkadunk wiped at various times throughout the day. Therefore, it gets left behind at times during life...especially when its author has 3 babies 2 years apart each.There are many times throughout the week that I think "hmmmm, maybe I should write something about this on the blog" today when we were playing a couple of rounds of Zingo where Emma beats the pants off us every.single.time. but it is still a fun and quick game to play with 3-1/2 and up kiddos. (Seriously, it beats Candy Land and Chutes and Ladders any day of the week.) But then I get caught up in putting kids to bed and pulling meds for the next day and making lunch for school...and then my eyes feel heavy and all I want to do is look at the dull background called my eyelids. There goes my creativity.
Or maybe I should talk about how Jay and I have lately had a routine conversation fantasizing about having a kid-free date with dinner and either a movie or browsing time at Barnes and Noble. Oh how that would be soooo nice. And yet, we have the numerous babysitters lined up ready to tackle our kidless night and still have a hard time setting a concrete date because life is busy...and we are tired...and kids are complicated. And so we continue to talk about how fun a date would be...
But instead, I usually talk about our real life. About how much fun Abby is having at school and how cute she is without front teeth...and about how hilarious Emma is amidst her daily complaints about life in general...and about how sweet our little Nafey boy is, despite the struggles he has to endure every day. Sometimes I spend too much time talking about the little dude, simply because of the time and energy his issues demand in our lives.But really, our life may be insanely busy at times...but is it really any busy than most 21st century families on any given day?

Friday, January 22, 2010

Anatomy 101

Nathan sat beside me as I put on some makeup this morning, and to keep his tiny fingers from opening every powder and blush, I tried to keep him occupied by asking him to point to different body parts. Barring some confusion between his eyes and ears at one point, he was purdy darn good.

"Where is Nate's nose? Where's Nate's mouth? How about your teeth? Where's Nate's belly?" was all replied with his pointer finger locating each body part with ease. "Where's Nate's toes?" prompted a foot in the air with wiggly toes...and then another foot in the air with "Wook Ma, two toes" in the sweetest miniature voice ever.

While I was reveling in my son's aced exam of toddler anatomy, I thought I'd throw out a harder one for extra credit..."Where are Nate's knees?"

The little tike looked up at me with his puppy dog eyes and gave me an absolutely perfected "AHHHHH-CHOOOOOO!"

(Hint: Read my question rather quickly and in a typical southern drawl and you will understand the hilarity of it all.)

Wednesday, January 20, 2010

4 years

My dear Emma,

We woke you up this morning with the birthday song and a gift in hand...a gift that screams "Emma"...a gift that cracked me up every time you asked for it. A Snuggie. Your face lit up the moment you saw smiled, complained about the color (because really, you wouldn't truly be Emma is you didn't complain about something with it), and then stretched your tiny arms into the massive arm holes and wrapped the snuggie all the way around you. You wore in the van as we took Abby to school, and you are currently still wearing it now while periodically saying "I love to snuggle in my snuggie!"

Oh my Emma, you are so much fun. I have never been around a kid who has the quick wit and humor you possess. You just seem to know what is funny and how to make others laugh. A few days ago, you came to me with a massive wedgie and said "I think my underwears are getting too small because my bodunkadunk is growing. That means I need to start running like you." It is regular daily conversation like that that has us chuckling and shaking our heads quite often when you are around.

But while you are comical and fun-loving most of the time, you also have a sneaky streak to you that scares me at times. We constantly have to remain one step ahead of your thought process because you are constantly trying to get away with things you know are off it taking Bear-Bear into the living room so you can suck your thumb all day long, sneaking a show on the TV that you know is not allowed, and cheating at any game we play. You declared this morning that since it is your birthday, you can do anything and everything that you wanted to do today, all while eyeing my face to see what kind of reaction that statement which I just shook my head and silently prayed for guidance in how to raise a free-spirited child like yourself. I pray that prayer often.

Your zeal and excitement for life is contagious, and I find that I really do enjoy just being around you. You still love to snuggle, and your squishy body fits so well in a snuggle either in our arms or beside us in a chair. You are our stealth ninja child who often climbs into bed with us in the middle of the night...sometimes without us even knowing. You get away with a lot by saying that you are "cared (scared) of the dark" or need help with something because you are "afwaid of doing it". You still have a really hard time saying words that contain the letter "s" in them, and while that poses a problem because "s" is kinda a popular letter, it is so stinkin' cute to hear you pronounce certain words. Abby is still your best friend, and you and Nathan have an incredible relationship now. All in all, you are a wonderful sister and daughter.

We love you, our little Emmabear. Happy 4th Birthday, sweetheart.

Tuesday, January 19, 2010

My kiddos...growing up

Today turned out to be a gorgeous 70 degree day, so I took the little munchkins out this afternoon, bribed them each with a teeny-tiny sucker, and took their yearly "age" pictures. And let me just put on my venting hat for a moment and tell you how stinkin' hard it is to get pics out of your own kids sometimes. Seriously. After spending a half-hour making sure Nate didn't climb into the ant pile, Emma stayed out of the gum pack in the front seat, and Abby learned that a smile is a LOT different than no expression whatsoever, I was about ready to pull out all my eyelashes. And then my eyebrows. And then perhaps some nose hairs. It was that exhausting.
Abby is weirded out by her toothless grin these days, so she has been trying to perfect her "lip grin", which just looks like she has a severe bout of constipation. Trying to make her laugh just makes the strain worst. Emma...well, Emma pretty much flat out refuses to look at the camera. If she does, it's almost perfect, but it takes a small army (and a mother pretending that a tiny worm is crawling across the lens, so you have to look really closely to see it) to get her to make eye contact with the camera. Nathan...well, Nafey boy is 2. And 2 is perhaps the worst age EVAH for photographing least in my book, it is. So Nathan + dos years = no comprende pictureteque. Here are a few of the day's 6, 4 and almost 2 year olds.

Monday, January 18, 2010

Almost 4

Sandwiched in between my two youngest in bed this morning, Emma piped up "Shoooo, Nathan has a poopy diaper." As I turned to look at her, she looked rather perplexed for a second and said "Oh nevermind. It's just your breath."
Yesterday, quite a few of our wonderful church family gathered together for a birthday party for Emma, who will be turning 4 on Wednesday. Word got around a few months ago that Emma had never had a real party before, so some wonderful church friends (love you Whitehead family) took her under their wings and planned a party at their house. Boy, was she excited!
I'm not too good with parties...decorating and planning such things are on the bottom of my list of things to accomplish. However, we just so happen to have a toddler who LOVES attention and is sometime lost in the midst of the chaos, poor middle child. Enter in friends who love the little munchkin and will plan to open up their home for a little shindig to celebrate her life for a day...
Emma had a blast. I don't think I have ever seen the girl so excited! The only drawback was the her little bro and big sis (who was sick) and dad couldn't be there...but that wasn't stopping her of making the most of her party. It was delightful to see the joy on that sweet little stinker's face. Thanks again for the memories, Whitehead family and rest of the church fam. It was truly a special day for Emma and us.

Saturday, January 16, 2010


One of our wonderful child life specialists came by our room yesterday morning while Nathan was asleep, so we just talked for a while about our city, the hospital, and life in general. At one point, she spoke the words I have heard so many times over the past couple of years..."I simply can't imagine how parents handle life with a chronically ill child." I nodded and then replied that I once had uttered those exact words...because really, no one can imagine how that feels until they are living in the midst of it.
Then I uttered that it is indeed difficult at fact, to use modern terminology that shows utter distaste for something...sometimes it just plain sucks. Some days, everything just gets to you...dealing with oxygen tubing, extreme fatigue, sickness that he may or may not be able to handle, the decision of a g-j tube looming over your head, therapies, medical bills...some days, it just gets to you. But regardless of what you are dealing with at that moment, it is imperative that you remain courageous and strong or else it would be easy for your mind to fall into the "whoa is me" category.

"Be of good courage, and he shall strengthen your heart, all ye that hope in the LORD." Psalm 31:24

This is the verse that echos in my head during times of distress. It is what keeps me so strong when Nathan is in the hospital...during IVs, and catheters, and chem sticks, and times where there are more questions than answers. It is what keeps me from breaking down during these stressful times...when my son is hurting and sick. It is what gives me strength to be calm and collected in order to keep Nathan more calm and trusting in the medical staff that is trained to help his body when it needs it most. It is what keeps me from breaking down emotionally during these intense times of stress...God blesses with strength that you can not imagine when you need it most.
I have found that I am usually strong during hospital stays...I can endure Nathan's multiple sticks, prodding, wakings in the middle of the night. While it pains me beyond measure to see him in pain and suffering, the Lord gives me grace to be strong for my son. It is usually afterward when I fold. Last hospital admission, I was so strong until we had a follow-up appt with our was then that I could hold back the tears no longer. Today is the same...the day after we were released from a 5 day stay inpatient, and it is my most emotional. Maybe it is the exhaustion; maybe it is the recollection of events over the past week; maybe it is the worry that Abby's current fever will affect Nathan's recovery; maybe it is that I am just now free to show my fear and exhaustion and heartache...but today, well, today has been hard.

Thankfully, we have a sweet baby boy who is doing very well currently. This week's fluids and medication has helped his body kick whatever bug it was fighting and give him enough energy to get his body in a good stride once again. He's still tired and weak at times, but he is back to his ole' ornery ways of pestering his sisters and making a mess of the playroom. It is so good to see him feeling so much better. At the same time, this admission took him backwards in some areas we were trying to improve...his muscles are pretty weak right now, and I am desperately awaiting whether early steps was able to approve the aquatic therapy they tried to pass for Nathan before Christmas. And his weight...well, I am just hoping that he is able to put back on whatever weight and muscle mass that he has lost.Our hospital was amazing during this visit, once again. After we were moved to the IMC unit, our attending was one of the top doctors in the system (literally), and he took superb care of Nate. We had good visits from our neurologist, pulmonologist, and nurses that we call friends. About half way through our stay, I had the idea to ask if I could do Nathan's chem sticks from then on...a poke to his fingers or toes to check his blood sugars. At first, we were having to check them every hour, then every 2 hours, and once we reached the point where he was doing well enough that they could check every 4 hours, he had started to fight the nurses during each stick. It was shortly after we had been moved to the IMC unit that he pulled his IV out in the process of fighting the nurses during a chem stick. Thankfully, they let me do them from then on...having never done one before. I figured that since he trusts me, and since I could love on him and play with him afterward, it would be easier if I stuck him rather than people he didn't know or trust...and it worked. He didn't fuss as much anymore, and by Thursday evening, he was pointing out which finger he wanted poked and sitting through it without a problem. He's a trooper, I tell ya.
So, he's doing great now. We are hoping that whatever fever Abby has is what Nathan had previously, and we are also being super cautious with the little guy. He's been sick for most of the winter, and it has taken its toll on him and us. Regardless of everything, he is still the sweetest little munchkin around with wise eyes and a dimpled smile. I love this little guy.

Thursday, January 14, 2010

The little man

Nathan continues to improve. We were moved down to the IMC unit a couple of nights ago, and the docs and nurses have really been great. The docs are being very cautious with the little guy and only turning down his D10 slowly to prevent another crash. Currently, he is getting 50% of the maintenance rate and starting to drink more, so if he is able to keep his sugars up and continue to drink, they will try to wean him off the fluids all together sometime this evening or tomorrow. If he continues to respond well, it looks like we may get to head home tomorrow.

This illness and crash took so much out of his little body, and he is still sleeping for many hours during the day, but he is playful when he is awake now. When he wakes from this nap, I think I may take him for a ride around the unit since he hasn't left the crib since we've been here. The jury is still out on whether this was bacterial or not, but they are treating with antibiotics regardless because some of his lab work is really wonky. But, the great news is that we should be heading home hopefully tomorrow...I sure do miss my hubby and girls...and bed.

Tuesday, January 12, 2010

Day 2

Nathan is hanging in there. When his motrin starts to wear off, his fever shoots up to crazy high levels within minutes. His afternoon temp was 103.7 under his arm, and he was one very sick boy during that time. What we thought would be a quick trip for fluids has turned to be a bit longer stay than we were imagining...Nate's CRP level was really high, signaling some form of inflammation process in his body. That coupled with a high WBC count and the seemingly unending high temps made the team add antibiotics into the plan in case the little guy had some kind of bacterial infection we were missing. They also had to add an additional quick fluid bolus earlier today because Nathan hadn't had a wet diaper in many hours. Thankfully this did the trick, and Nate started wetting diapers again a little after lunch.

The wonderful news is that I saw a spark in my little man once again this evening. For about an hour, he talked and smiled and was amusing me by throwing his puppy, Tebow, over the crib walls. He even ate and kept down a popsicle. After some play, he was once again worn out, but it was so great to see him coming back to himself again. It is quite frightening at times when he gets so sick and he seems so unlike himself. I am thankful that he seems to be turning a corner.It looks like we will be here another couple of days at least. There were plans to transfer us down to the IMC unit since Nathan has done a pretty good job at keeping his sugars down with his D10 solution going, but I was just informed that they may not be able to take us since it is so hard to get a bed in that unit. It's beginning to look like we will be spending the night in the PICU once again. The attending that just came in to check on Nate said that if he continues to improve, we may be able to skip the IMC unit and go straight to the regular floor in the next day or so.

I am so very thankful we have this wonderful hospital so close to home. The doctors and nurses are excellent, and I really appreciate their caring natures. We have started to "get to know" some of the docs on this floor, and they all are so friendly and informative. That makes it so much easier to be here when we would rather be anywhere but here.

Monday, January 11, 2010

Too long...

...with a fever, that is. The little guy has had a rough weekend as yet another nasty fever ravaged his body that was already tired from fighting off the first fever virus just a couple of days before. Our best guess is that he has been host to a piggyback virus...or his body is just having a hard time fighting off the first one. Regardless of what he has, Nathan is quite sick.

His fevers have been impossible to maintain, and the sicker he is getting, the less he will eat or drink...thus creating the perfect storm for dehydration. A quick visit to our pediatrician this morning confirmed what I was suspecting...he needed to be admitted for fluids. So after a few hours of waiting for a bed to open up, we made our way to our Children's Hospital.

Nate was admitted into the PICU again, but only because with the Dextrose solution he needs, there is the possibility that he will need insulin to go along with it. And for some reason, they always bed us up in the PICU because this. Everyone is super nice, as usual, and taking great care of my little man. One of the moms of a kid in Abby's class came in tonight, and we talked for a while. We've seen each other during pick-up time for months, and when she came on for her shift and saw that a kid with mito had been admitted, she peeked in to see who it was. I had no idea she worked up here, so it was so great to talk to her for a bit.

There's been no talk of when we will be able to get home yet. I'm sure that we are going to need to see the little guy perk up quite a bit before that can happen, and I hope that will be within the next day or two. Keep the Nafey boy in your prayers...he's such a trooper through all of this, but it is always so hard to be poked and prodded numerous times.

Thursday, January 7, 2010

A prayer from a snaggle-tooth

Dear Heavenly Father, I really hope my new teeth come in soon because I really miss being able to eat corn on the cob and other things I can't eat right now...

It's the important things in a 6 year old, at least.

Wednesday, January 6, 2010

Who left the freezer open?

Greetings from the subarctic land of palm trees. Usually after Christmas, we make the trek back home to bask in our normal 70 degree sunny winter days, but not so this year. The freezing temps definitely do keep life interesting down here, as every couple of houses in the neighborhood either contain bedding material over tropical plants to keep them from dying or sprinklers spraying the lawn to create a southern-made icelawn.
The kids are getting over this current illness. Nathan did a lot better than Emma did with it...we are so thankful for that, as Emma was about as sick as we have ever seen her. Nate is still having some energy issues, but I wonder if the cold has anything to do with it. He has spent quite a bit of the past couple of days wrapped up in blankets in my arms, and I am loving every bit of it. He has been quite the doll lately, which is bringing back memories of why I love this age so much.
Over Christmas, the little guy's speech just exploded...he can now repeat most of the words we ask him, and he has started talking on his own a lot without prompting. Sometimes when I am driving, I will hear a teeny wittle voice pipe up from behind my seat saying "Mama, hand. Mama, hand." to which I contort my not-so-limber body and stretch my Go-Go-Gadget arm behind the seat to hold the soft hand of my little boy. Love it...simply love it.
Nate had a GI appt yesterday, and it went pretty well. Unfortunately, he's still having a tough time with weight, but after a long talk with our GI doc, we can still wait a bit longer before we need to make any decisions regarding a tube. We are aware that as Nate's motility decreases, he will eventually need a feeding tube to make up for the calories he isn't able to consume by mouth. Our GI told us yesterday that when this does happen, we will need to skip the g-tube altogether and go directly to a G-J tube which feeds into the jejunum (the middle portion of the small intestine) and vent through the g-portion of the tube. With this type of tube, it is a bit more hardware and he will only be able to receive drip feeds and no boluses, so we are so very happy that our docs are willing to wait a bit longer before we truly need to make this decision. He has to go back to that clinic every 2 months so they can keep close tabs on how his gut is doing.

Honestly though, he is doing really really well right now. He's sweet and loving and just so much fun these days.

Sunday, January 3, 2010

In the land of SCIS-SOR...

Once upon a time, there was a fair prince who was in dire need of a haircut. His ole' moppy head had gotten the best of him, and while his mother wanted a little boy with long beautiful curls around his ears, his father insisted on the boy looking like him...almost bald-headed and all (love ya babe!).
So, the littlest little Ferrell was sat upon his throne, which justsohappenedtobe a uniquely made porcelain thingamabob that squirt water out of its mouth. Some would call it a sink. But we will call it a throne for the time being...for the little prince...who has been so graciously bribed to sit upon it for about 20 minutes for a dear price of one sucker, to which he has so graciously obliged.
However, after the 20 minutes of scissoring and burring, the dear prince was not as obliged. He threw a curse word or three in the language of aged2, but we let him slide just this once...
...cause after all, doesn't his new "do" look so dang cute?

Saturday, January 2, 2010

Christmas...the second half

We arrived home on New Years Eve from our many days of gallivanting across the beautiful Kentucky countryside. The second half of our Christmas trip was spent at my parents' house, where the company is always...errrr...interesting...
It twas a great visit and went by way too fast. The kids enjoyed learning how to put on coats, playing with cousin Hailey, critiquing how their uncles' rooms smelled, and pestering the poor cat during their every waking moments.
The eve of my little one's 6th birthday, she lost her second top tooth...making her a pirate no more. She has the cutest little lisp ever...especially since I know it is temporary and will be going away once the teeth return. However, I am enjoying the big ole' gap while we have it before the quintessential "too big for her little face" adult teeth come through. Here's to entering into the awkward stages of growing up.
Another treat for the kiddos was a small snowfall blanketing the ground, which just so happened to be exactly what they had been wishing for during this trip. We wasted no time getting outside to catch snowflakes on our tongues...a must for the kids since seeing it once on a Charlie Brown special. And to make it even more special, Aunt Bethany had given the girls a gorgeous makeover before the snow came, which gave them such a wonderful street-corner appeal for the must-have snow pics. Gotta love me some hot pink eye shadow.
After the kids were tucked away soundly under humpteen dozen blankets, my littlest sis and I decided to take a late night sledding trip. My parents have one of the crappiest lots in the city when it comes to mowing, but it just so happens to be the best when it comes to sledding since the back yard slopes at about a 278 degree angle. With cookie sheets and tupperware tops in hand, we conquered the hills, ran into a stray tree or three, and wet our britches just a wee bit...afterall, we aren't as young as we used to be. I seriously haven't laughed that much in ages. We took the kids out the next morning before the snow melted too much, and they created lasting memories bundling up in multiple layers of clothing, sliding down the hills, and watching their fingers turn an eerie shade of dark purple. Turns out that holey thin gloves don't hold up too well when they get wet...who knew?!Emma spent most of her time outside sampling snow, to which she was reminded over and over not to eat any snow even mildly resembling the shade of yellow...or brown...or green...or basically anything but white. Basically, we just taught her some life-long lessons that she more than likely will never learn in our home state.
Hailey was such a doll. She has the sweetest smile and loves to congratulate herself with a round of clapping each time she thinks she deserves it. Of course, this would create a room full of applause...because she is just so stinking adorable.
We celebrated Abby's 6th birthday at Gattitown, which is a suped-up Chuck E Cheese without the annoyance factor. The kids had a blast, and amazingly enough, the grown-ups did too...take that Chuck E.
It was great to see my littlest bro on his break during basic training. He left again today to head back to Fort Sill, OK for a few more weeks of basic and some additional classroom time. We sure are proud of him taking this step to serve our country.
So after being gone from home for almost 2 weeks, we decided that it was probably time to get back in to our regular routine...meaning that the kids couldn't go 3 days between brushing their teeth anymore. We made the long trek back home to the deep south with a really sick little girl in tow...poor Emma got sick a couple of days before we left and is still sick. She has been running 103-104 temps for 6 days now, which prompted a quick trip to the after-hours doc within an hour of our arrival home New Years Eve. The poor girl is still miserable and exhausted, as this virus has taken a ton out of her. Nate came down with a runny nose yesterday and woke with a fever this morning, so we are keeping a close eye on him as well, although he seems to be doing really well with it all. Anyway, good trip and great visits with friends and family...but it is nice to be home again.

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