Wednesday, March 30, 2011


A few years ago, I posted a video of Emma being her normal dramatic self saying goodbye to Bear-Bear as he was heading into the washing machine. It was a regular occurrence...her drama encircling the event (which was why he was nasty most of the time), and I wanted to get it on video once. It has become her favorite to watch, and we all get a kick out of it now.

When Nate was in the hospital, it was almost embarrassing how dirty Tebow looked against the pristine white sheets, so I made sure to prep him that we had to wash him when we returned home. He didn't care. He never does. It has never been even an inkling of the production it always was with Emma. So, in an attempt to showcase the drastic differences in the drama factor between boys and girls, I brought along my video camera to capture the event.

It was quite pitiful. And while it wasn't nearly the amount of drama thrown on by his sister, that quivering lip about did me in.

Tuesday, March 29, 2011

Spring Break

We had big plans for the kids' spring break week...beach, zoo, park, slip-n-slide, copious amounts of exhausting fun. But one of the things we have learned since having children is that the plans in your head don't always come to fruition, and that's okay. It just so turns out that the girls' week off school happens to also be the first full week of spotty rain showers we have had in many moons, which automatically cancels a majority of the outdoor activities we planned. It also turns out that Nate has shown us that he wouldn't be able to handle a busy week anyway, as he is still sleeping copious amounts of time during the day. The girls have also shown us that they really should be paired up in a locked room together for the duration of the week in order to settle their differences and learn to love and honor each other once again. They both need this week as a reset button to their relationship with constant and exhausting prompting in how to talk to one another with kindness and how to treat the other with love and unselfishness. We're one day down, and there are promising results so far. Turns out that time together and communication is not only good for marriages, it is good for sibling relationships as well.
So our spring break may not be turning out how we originally planned, but we are enjoying it just the same. Our rainy days are filled with sleeping late, warm baths after syrup coated pancakes end up in places other than their mouths, spending good quality time together, and swinging the little guy...because the only thing he likes as much as playing the ipad is swinging.

Saturday, March 26, 2011


We pulled into our garage yesterday afternoon at around 4:00. It was so good to be home. Nathan went back to bed at about 6:30 and slept until almost 9 this doubt from the exhaustion of this virus coupled with the exhaustion of staying in the hospital. And I have an amazing husband who let me sleep for a good 12 hours to catch up on what I had lost. We all feel much better this morning.

To recap the last day, the docs turned Nate's fluids off yesterday morning to see how he would respond and if he could maintain fluid intake well. I bribed him to get out of bed and walk a lap around our floor, and he seemed to enjoy the sights outside of the 4 walls surrounding us in the room. We got back and he slept for another 3 hours and woke up feeling a lot better and drinking quite a bit. His energy levels seemed to be rebounding quite nicely by this point, so I assured the resident that we could definitely continue his care at home. They were a bit concerned with how much he was still sleeping, but I informed them that while it was a bit excessive, it wasn't much more than he normally sleeps when well. He just sleeps a lot more than most kids his age...especially when his body is under any amount of added stress.

We came home, and he was so excited to see everyone. Other than the clotted holes in his arms and the sticky residue left from the tape and leads, you wouldn't be able to tell that he spent most of the week in the hospital. He is back to his funny self. He is so glad to be home. And so am I!

It is both comforting and sad to say that these admissions are getting easier on him. He knows what to expect at most every turn now. As soon as we get there, he starts talking about how the IV is going to hurt, but he never fights or tries to move when they are inserting the lines into his veins. He willingly lets random strangers check his blood pressure, temperature and examine him all over without hesitation. He chooses a finger for me to poke to gather the little amount of blood needed for his routine glucose checks while inpatient. He asks every single person who walks into our room "What you gonna do to me?", as he only wants to know what to expect. This gets a good chuckle from the people who are there to take out our garbage or check on all his equipment.

He just wants to know what is happening, and we all make sure to keep him informed on every single solitary step. His courage and ability to adapt so freely and willingly amazes me to no end. The grace that God gives my son to face these circumstances in his life is evident in so many ways. And I am so thankful for that.

Thursday, March 24, 2011

Another update...from another room

We started this admission out in a regular room and they quickly decided that they wanted to keep a closer eye on the little dude, so they moved him to a room in the IMC unit. He made a good turn around today, so they decided to move him back to a regular room since he was holding his own. We have less monitoring now and a lot fewer distractions, so he should get a good night's sleep. He's still really tired and not wanting to get out of bed at all, but he is definitely perking up. No more fevers today, although his respiratory rate has been a bit elevated at times. As of tonight, he has improved quite a bit and they have been able to lower his fluids to half-maintenance with no issues so far, so I am assuming that they will let us go home tomorrow. At least my chronic headache and tired eyes hope so.

I found out during rounds this morning that Nate had a heart arrhythmia last night, which is essentially an irregular heartbeat, as it was explained to me. They consulted cardiology who said they would just follow-up with us at our upcoming appt in a couple of weeks.

We had 2 second-semester nursing students spend the morning with us learning about how to take care of patients. They spent a good amount of time with Nate and even played with him for quite a while so I could get something to eat. I bring that up because it was hilarious to me how they kept taking turns over and over to listen to Nathan's chest in order to understand what a murmur sounded like. His murmur has been graded a 3-6, meaning that it is essentially very loud with a thrill (vibration), so I guess he was a good candidate to try to learn about the sound these heart conditions make. They would both listen to his chest and then listen to their own chests in order to hear the difference in the normal lub-dub sound to the murmur sound of swish-swish. Being the amazing patient that he is, Nate took all of this in complete stride and with no complaint whatsoever. He has been so very sweet this week.

It has been a fairly smooth admission. Nate didn't respond as quickly as I had expected or hoped, but it is so great to see him finally perking up. Our residents have been superb, as has our attending. And we have enjoyed all the nursing students starting out and about to graduate. They have all gushed over Nate, and he has enjoyed the company of cute girls playing the ipad with him and paying him some attention. But more than anything, I am glad that he seems to be feeling better, and that we will hopefully be home really soon. Yes, I am really thankful for that.

Wednesday, March 23, 2011

Still here

All mother's hearts hurt when their children are sick. During this time, we take on a modified role from teacher to comforter. We bring them juice, make sure they have had their medicine, make a palette on the couch so they can watch TV all day, and drape cool wash cloths over their foreheads. We hold them, take them drinks and more medicine in the middle of the night, give them extra snuggles. It is in the pure essence of being a mother...being a comforter to our precious children in times when they need it most.
Being a mother of a child in the hospital requires an even different role from us though. We help hold them down through IVs and painful tests and we kiss away their tears when it is all over. We hold their fragile bodies tight against us amidst the tangled web of tubes and wires emerging from them. We sleep enough hours to count on one hand night after night and try to look refreshed for the early morning display of medical personnel making their visits. We study the hypnotizing bell curves of pulse and respirations on the computer screen at the bedside. We only sneak out to eat when we are sure that the child is good and asleep, for fear that they will miss us when we are gone.
It is a different role in a sense, yet it is all wound together in one word: motherhood. It may not look the same for everyone, but the feelings and emotions are united together. We are mothers, and we will do anything for our children when they need us most.Nathan is still in the hospital. While the morning started out looking pretty good, he tired quickly and slept for a few hours. They turned down his fluids sometime after lunch in hopes that he would start to drink more and be well enough to head home tomorrow. He was looking pretty good...still shaky and having some balance issues when standing, but looking perkier.By mid-afternoon, his heart rate was becoming more elevated, right along with his respiratory rate, both setting off his alarms countless times. I knew something was up. He has not had a fever since yesterday, so I was surprised to see that he had indeed spiked another one. He was looking pretty puny around this time as well, so the doc immediately turned his fluids right back up again. We'll keep him going strong on fluids through the night and reassess tomorrow as to when we should try to wean him down again. He has taken 2 long naps today, so his body has definitely needed the rest.Hopefully tomorrow will go well. We are meeting with the geneticist tomorrow morning, and I am anxious to see what he thinks about some of the metabolic oddities Nate has recently started exhibiting in the past few months. I had a lengthy meeting with the genetic counselor today, and I was amazed at how much Nathan has gone through in his short 3 years of life as I had to retell his medical history from the months I carried him inside of me. I have forgotten about some of it. I know I said this last time, but he sure is a courageous little guy.(pictures taken last week on his bunk bed after a nap)


I have so many new posts swimming in my head right now...and lots of fun, new pictures. I had hoped to have posted most every day this week. But the little guy got sick. Well, let me back up a second...Abby got sick with a some sort of fever and cough last week. The fever lasted for 5 days and wiped her out. She's still struggling with intense exhaustion each evening after doing her normal daily activities. It was a bug that made Jay and I mention to each other that it wouldn't be good if Nate got this...not because it was intense, but because it was such a long illness that seemed to zap normal energy.

As much as we tried to take all the precautions to keep the little guy well, he succumbed to the bug on Sunday evening when I noticed that he was feeling quite warm. He battled the fevers well for the first 24 hours, and then his body started to get a bit tired Monday night. During that night, he had numerous apnea events that were a bit scary and had a pretty high fever as well. After taking him to our pediatrician the next morning, it was decided that he would probably fair better if we could tank him full of fluids, as his intake has slowed dramatically.

He still looked okay at this point...really tired and puny, but definitely better than I have seen him at other times. But it was great that he was admitted when he was because it took a few tries to get an IV in, as he was already quite dry. After a lot of lab work and awful RSV and flu tests, it was decided that he would be moved to the IMU (step-down unit ranking between the PICU and the regular floor) so he could be monitored better. The nurse to patient ratio is better in the IMU than in a regular room. And since he is on droplet precautions because he is sick (and has one nasty sounding cough), he was moved to another room without a roommate. Score.

I was hoping that this admission would be a quick in and out, since Nate wasn't doing too terribly bad to begin with and just really needed some fluids. But, the doctor really didn't like the intensity of his heart murmur, so he has ordered a cardio consult for this admission...which I find a but humorous because he had his yearly cardiology appt yesterday that I had to cancel because he was so sick. He also ordered a genetics consult since genetics takes care of most of the metabolic kids here. It seems like every time we are in, they want to call genetics. We have an appt with them in September to discuss some metabolic stuff going on with Nate, but I have never been terribly impressed with them here...hence the reason we have never had much to do with them here (too many cooks in the kitchen). Granted, I only have a couple of encounters to make that opinion, and I hope that I eat my words when I spend more time with them.

So, I am still hoping that we get released tomorrow evening...though that is probably stretching it some. And Nafey boy needs to be able to exhibit that he has enough energy to stand up for more than a few seconds without looking quite tipsy and losing his balance...and eat and drink enough to sustain more than a hummingbird. Even though it has been so difficult to see him in pain and exhaustion from everything that happens in a hospital, I am thankful that he is getting the fluids and medications that he needs. And I am thankful we headed this one off fairly early. It feels like we are in a constant struggle to learn what Nate's body needs and when it needs it. I think we made the right decision at the right time this time around.

He's a strong little guy. And he is rather amazing too.

Tuesday, March 15, 2011

Such a girly girl

Monday, March 14, 2011

Life's my children

"Smile. Look them in the eyes. Give a firm handshake. Smile. Speak loud and clearly. Be engaging. Smile."

These are some of the insightful suggestions from my father in regards to meeting people. He would pass on this sage advice after our failed attempts at social encounters, in an attempt to prepare us for life in society.

It is advice that I am thankful for on a daily basis...and advice that I try to instill in my own children as I prepare them for life on their own someday. This great bit of teaching is the foundation for friendships, acquaintances, social settings, and anything in between. Smile. Be engaging. BE CONFIDENT!Growing up is tough. Not only is this process extremely difficult for the children undergoing these dramatic transitions, but it is also exceedingly excruciating for the parents raising these youngsters. Our children go from relying completely on their parents in trusting in everything they do and say in questioning a bit of their reasoning in teenage dismissing them altogether in young adulthood. It's a dramatic transition that is difficult on all fronts.

The method of growing up is disheartening, but necessary. Children are made aware through time and experience that their parents are fallible. The people who they looked up to at the highest have failed the expectations. But in the end, there is only one who is completely honorable, lovable, and is God.

Even though it is so extremely difficult for all parties in the family to go through this transition, it is necessary. Parents are sinners. They make mistakes in daily life, in marriages, in raising children. And this is what scares me in regards to the way my children will view me when they grow just a bit older...that I am a not what they once thought. That I fail in so many ways as I try to teach them the ways to tackle life.But I do pray and hope that after they have realized that I am indeed fallible, that they will also realize that I have tried my best. And although it was not good enough, it was all that I could give at the time. That I thought hard about the important points...and that I failed miserably at others. That I am far from perfect. But I loved them unconditionally...through every SINGLE day of their lives.

For that is how I perceive my parents this day. That they love me...and I love them...unconditionally. For the term "unconditionally" is the only way we could love anyone...and the only way God could love his children.

God has blessed me to forget most of the downfalls, but to focus on the numerous abilities that my parents have taught me to tackle each and every day on this earth. For they are God's children...and they have taught me well.

I pray that my children will think the same regarding us when they are older...

Thursday, March 10, 2011

Nate's bday partay

So wow, this is quite delayed. It was even pre- Nate's new hair do. Oh, how I look at these pics and feel sad about cutting his hair. I love longer floppy hair on little boys, but alas, my kiddo has some really coarse hair that turns a bit fro-ish the longer it gets. And his daddy wanted me to cut it. Hair shall grow again.
Anyway, one of our good friends, who also happens to be an incredible cake baker, made some cakes for Nate's birthday. They were the cutest things ever, and they tasted amazing!!! Nate was ecstatic when he saw them, since the only thing he asked for was a "WEALLY BIG CAKE". And the Toy Story theme just pushed him over the edge. It was so much fun seeing him so excited. These are some pictures from our fun day...

Tuesday, March 8, 2011

A whole lot of randomness

I like reading posts comprised of the random thought processes of others. Maybe that is because my brain seems to continuously inhabit a wide array of random thoughts at any given moment. Those posts speak deeply to me...well, at least they make me feel like I may indeed be a little more normal than most think. So here is my ode to all ye of like random minds...
I love Pringles. I eat them until there is a nice slick layer of fat film on the roof of my mouth and my lips are permanently shriveled from the insanely delicious salt that blankets the crisp chip. Sometimes I lick both sides and set it aside until the chip softens a little. Don't worry...this is not something I do in public. Certain actions are only meant for the privacy of your home. You probably don't want to see me eat a chocolate covered cherry either. And when I was little, I used to chew a bunch of saltine crackers and then mold the soggy mess into a nice ball...and then eat it again. Gross, I know. I am proud to say that I do not partake in this activity anymore, though I remember it with fondness. Its a wonder I found myself a husband.
In another neck of the woods, when the inscrucktions on the side of the bottle say that it is probably best to take the antibiotic with food, it is indeed probably best to take the antibiotic with food. And by food, it does not mean coffee. It will take a copious amount of Pringles to get the taste of regurgitated coffee out of your mouth.Did you know that allergy eyes could turn into bacterial pink eye? Who'da thunkit? Obviously not me, even after spending a few days wanting to manually pull out my eyeballs so I could scratch the inside of my eyelids. And waking up with my eyelashes matted shut. And looking quite like an interviewee on that show "Intervention", with horribly blood shot sclera and swollen purple bags under each eye. Bilateral pink eye. Yep, that kinda makes sense now.Tree pollen is my #1 nemesis these days. I currently loathe the mere mention of walking outside. The is a battle of epic proportions taking place in my nasal passages, and I'm not quite sure who is winning. It ain't purdy.

My darling son is growing teeny tiny freckles on his nose which, amazingly enough, make him even mo' cuter than he is already. I luves me some freckles. Especially on little boys. I count them when he sits in my lap and looks up at me with those gorgeous brown eyes. Some days I want to eat his face off. Its a disturbing reality.
The middleun, which is adorable in her own way as well and inhabits her own share of adorable freckles, has taken to the habit of lying lately. And she is mighty good at it...she flashes her precious little dimples our way and we instantly lose the scent of the ill-will happening. She's so good that we didn't even realize that she has been lying quite regularly until recently. About little things...stupid things...and some big things. This is new territory, as the oldest has never never ever. Or maybe I am a bit naive.
Abby, who is seriously lacking in most of the pictures these days, started spring soccer last week with our local soccer academy. Its quite entertaining watching her long, muscular legs run. Its a beautiful flowing motion of muscle and bone working together in a remarkable way...until she falls, which she does quite often. She's not the world's most graceful gazelle. But she is a purdy good soccer player. In her third season playing, I thought she had the game figured out pretty well until she complained when a player on the opposite team in a scrimmage started guarding her: "They were throwing the ball in and a girl from the blue team kept standing in front of me so I couldn't get it. I told her that she was cheating and couldn't do that and she said that she could. I was so frustrated with her. She just didn't know how to play." It was then that I enlightened our little soccer prodigy with a little known concept called "defense".

And this concludes the act of randomness that is currently flowing around my brain.

Friday, March 4, 2011

Cooper Knight

I've been sitting on this post most of the day, not really sure what to to say it...where to begin. I feel like so many of my posts and thoughts lately have been about the hardships of raising a child with mito and of becoming so close to others in our "mito community". It is a community that no one wants to join but some are seemingly thrown into it with countless questions and rare answers, but amazing support and help from others living in this same "community". It's a rather small community, where most everybody knows, follows online, or at least has heard of most everyone else. We are close, in a way unlike most other relationships as this one is bonded in pain, heartache, frustration, and fear.

Our "community" has had a really tough few months, as quite a few of our beloved "mito kids" have passed away. It is a joyous moment for each of these children, as they leave their tired and broken earthly bodies to live perfectly and eternally with our Heavenly Father. I think of their smiling faces looking into the eyes of our Lord, and I am overwhelmed with jealousy and longing for that moment in my own life. Each of these precious children are experiencing the everlasting peak of joy and happiness, and that is a wonderful blessing!

However, they have all left grieving families on this earth. Families who miss being able to wrap their arms around them, squeeze their mushy little muscles, look into their wise eyes, smell the musky scent of their hair, and listen to each breath they take. They have left friends who have loved them and learned so much about the amazing strength, courage, and zeal for life that God grants these precious children. And they have left a community that understands the hardships of this disease, as they watch their own children suffer and painfully and fearfully wonder who may be "next".

Precious little Cooper Knight left his weary body last night and joined many of the others we have bid goodbye to in the recent past. I would love to know what they are all doing right now, and even though my finite mind can not currently imagine all the glory heaven holds, I can't help but think that they are all smiling and laughing.

Cooper fought a long and hard fight on this earth. He gave immense inspiration to so many who knew about his precious life. He was loved by countless others, but none more than his family, who are all so very heartbroken and sad now. Please keep Cooper's family in your prayers...his mom Sarah, his dad Kevin, and his older sister and brothers, Caroline, Adam and Oliver, along with grandparents, aunts, uncles and cousins. And pray for those in the medical community who have loved Cooper through their service and care to him.

Even though entering heaven is a joyous occasion, it is often quite difficult and excruciating for loved ones to say goodbye.

Until we meet again, sweet Cooper.

Tuesday, March 1, 2011

Another weekend with Texas friends

We headed down to Orlando again this weekend to spend some time with Ali and Alex from Dallas. Alex is another little mito friend of ours that we have met throughout our trips to Houston. He and Nate see a lot of the same doctors in the mito clinic our there, and his mom and I clicked immediately upon meeting about a year ago.
The last time I saw Alex, he was quite sick with pancreatitis, and he also came down with a line infection right before Christmas and was intubated and really, really sick. So, it was great to see him looking so good this visit!
Alex is right between the girls in age, and they all had a blast playing together for the short amount of time we were able to spend with them. All 4 of the kids ran around the hotel pretending to be in some kind of "buckle club", whatever that means.
Here are the 4 little hooligans together...don't ask me what Abby is doing. I have no idea what goes through her head most of the time. :)
The next morning, Ali, her sister and I ran the Disney 5K taking place during the half-marathon weekend. Ali's sister lives on the Atlantic side of Florida, and Ali and Alex usually visit them around this time of year. Since the races were this weekend and Orlando is a good central location for us to meet, we decided to run this together.
We essentially run the race of our childrens' lives together...cheering each other on through each day, holding one another up when it gets too difficult, helping guide each other around the sharp corners of uncertainty, and giving support through every single circumstance that seems too tough to do without the help of someone who completely understands the exact same scenario. We are partners...friends...helping each other trudge on through this marathon of having a child with a harsh disease.
So we decided that if were we already accustomed to holding each other up through one difficult race in a figurative way, we could do the same in a literal race...and get in better shape at the same time. Throughout the 3.1 miles, we laughed, cried, encouraged, pushed through the pain and exhaustion, held each other up emotionally, and crossed the finish line side by side. It was an honor to run beside my friend through the duration of that race.
We said goodbye after our run, in hopes that we would possibly see them again in April when we will be in Texas next. I headed back to our hotel and watched as my children had an absolute blast swimming. It was a heated pool, but it was only 9:00 in the morning and outside...and February 26th!! I know it is Florida, but even I was amazed at how early they were able to swim this year and not get cold at all. It was been a gorgeous February here...and early spring.

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