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?
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 study...you 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.
So the blog...it'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"...like 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?
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 munchkins...at least in my book, it is. So Nathan + dos years = no comprende pictureteque. Here are a few of the day's possessions...my 6, 4 and almost 2 year olds.
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.
Then I uttered that it is indeed difficult at times...in 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.
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 pediatrician...it 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.
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.
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.
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.
It's the important things in life...to a 6 year old, at least.
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.
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?
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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