Thursday, September 29, 2011

Fall season

 Its a crazy dance of running back and forth across the short grass and flailing your appendages in order to hopefully get a funny looking ball into a miniature-sized goal without tripping over your shoe laces and touching anything with your hands. Most people call it football. Weird people call is soccer. (Seriously, why do we confuse our kids by calling this sport something completely different than the entire world calls it???)
It just so happens to be a sport that we devote our fall and spring Monday and Wednesday night evenings to while we cheer on our first born to victory. While Emma enjoys her weekly obsession with dance lessons, Abby chooses her recreation time with soccer. And I LOVE watching her play.
After our first two soccer games being rained out, it was a treat to watch Abby play last night. She has a good friend on her team this year, and the group of girls are really pretty good. And with each new season, we always meet really great families. The faces of our town change so much due to the nature of the leading job markets encompassing this city. It's quite a transient town because of the University, but that always means that there are new interesting families to meet each year. That's one of the reasons I love where we live...not to mention that it has a lot of wonderful extracurricular opportunities as you are raising your family.

Tuesday, September 27, 2011

Emma Beiber and the Bieberettes

She's a tween trapped in a 5 year old's body a lot of the time. She has a passion for shoes, clothes, jewelry, and Justin Beiber. She has befriended a 5th grader who provides her with enough Beiber information that would make anyone's ears bleed. Did you know that his favorite color was purple? And that he has put out a perfume? Well, I do...senseless information that is now crowding out all the important stuff that resides in my cranium. I may not be able to tell you where I last laid my keys, but I can for sure tell you that J. Beiber likes spaghetti.

Its so bad that when his face popped up somewhere on TV the other day, Emma literally put her hands on her face and squealed. She has issues. I am declaring that any punishment she should have over the next few months should involve watching copious amounts of Elmo's World. That should equalize her, right?

Friday, September 23, 2011

Mitochondrial Disease Awareness Week: Hope for a Cure

I can still feel his warm, squishy body against mine...his head laying on my chest. I can hear his adorable little voice singing the ABC song. I miss him.

On this day last year, our precious friend Samuel passed away from complications of mitochondrial disease. My heart has hurt all week thinking about him. And it has hurt even more thinking about his family. Today will no doubt be very tough for them. I wish I could take this pain away from my dear friends.
It has been a hard year for our little mito community. We have lost so many little friends. Its the toughest reality that we all live with...that most of these precious mito kids will not live to adulthood. Its a reality that I hope is changed with our generation. With awareness comes funds, with funds comes research, and with research comes the possibility of treatments and a cure.

I pray that we will be able to see Nathan graduate some day. I pray that he will someday fall in love with a dear woman so that I can cry at his wedding. I pray that he will have the opportunity to carry on the Ferrell name by bringing children of his own into the world. The reality of this disease is tough, but it doesn't mean that we don't have hope. Hope for a cure.

Please pray for the Knight family today and all the other families who have recently lost their children to this insidious disease.

Wednesday, September 21, 2011

Mitochondrial Disease Awareness Week: how mito affects our family

"Mom, I think I want one of my kids to have mito when I grow up." It was a statement from my oldest that shocked me as she so leisurely brought up the subject on the way to soccer practice.

"Really? Why is that, honey?"

"Well, because I already know how to take care of kids with mito, and I will love them no matter what is wrong with them. I just think I'll be a good mother to a mito kid." was her sincere reply.
What do you say to that?

Our girls are different than their peers in a lot of ways. In their few short years on this earth, they have carried so much burden that is in direct relation to the life of their brother. We try to maintain as much of a normal family life as we can, but there is so much of their life that is not normal. I can't count how many times the two of them have been shuttled between local friends, church members and family through the many doctor visits and hospital stays Nate has had. There have been many times when a dear friend has had to pick them up from school and take them to their house without me even being able to give the girls' a "head's up" about the change of plans.
They say that kids are resilient. Well, I think that my girls received an extra dose of resilience in their lives, as they have never once complained about the circumstances of their life.

Mitochondrial disease changes the family.
Emma has recently shown an interest in learning how to take care of Nathan. She says to me that "someone needs to know how to take care of him in case you die." Her mental filter hasn't quite developed yet, and she obviously says most that comes to her mind. But I love that she is interested in knowing all the ins and outs of his care. She knows how to give him meds and set up his feed, turn on the pump, and plug his feeding port into his g-tube. She knows that he is on 2L of oxygen and understands which way he likes the cannula to fit on his face. She's 5.

Mitochondrial disease changes the family.
Both of the girls can give a quick lesson that highlights the aspects of this disease. Not only can they pronounce the long name, but they understand about the primary role our mitochondria play in our cells. And from talking to other moms, their friends can give a good lesson on mito as well...which makes me proud of my girls for spreading awareness about this disease behind the scenes. Its a part of their lives, and they are not afraid to talk about it.

Mitochondrial disease changes the family.
"Hun, I know that you would be an excellent mother to a child with mito, but I pray that you never have to be in that role" was my response in the conversation on the way to soccer practice. With as much burden that is already on their tiny shoulders, I am so thankful that they don't comprehend the enormity of stress and heartbreak that their father and I endure on a regular basis by raising a child with mito. Its a role that has strengthened us and taught us exponentially in our daily life, but it is also a life that I would never wish upon anyone.I am thankful that she doesn't quite understand the severity of her brother's disease yet. She's too young to be burdened with our fears of the future.

Having a brother with mito has created a compassion in both of the girls that has been incredible to witness. Yes, mitochondrial disease does indeed change the entire family.

Monday, September 19, 2011

Mitochondrial Disease Awareness Week: September 18-24, 2011

This is the third Mito Awareness week we have experienced, and it is always quite enlightening to see all of the mito facts and figures that grace the blogs and facebook during this week. This has definitely been an amazing way to bring awareness to a disease that has the same frequency of childhood cancer, yet is still somewhat "unknown". It is something that has affected our lives since I was pregnant with our son, though we didn't know the name of the culprit until he was almost a year old. Its something that affects not only Nathan's life, but the lives of our entire family every single day of the week.

Attached is an updated video of Nathan's life with mito...

Tuesday, September 13, 2011

On a quest to be a typical American family

We are a typical American family...middle-income suburbian family consisting of father, mother, 2-1/2 kids and Fido, the family dog. Well, except that I don't think there is a definition of the "typical American family" anymore...and the fact that we have an extra half of a kiddo running around here. Well, and we have no Fido to grace our home with clumps of hair and pools of saliva on the furniture.
We're not against having pets...we have 3 kids who are as pet-like as they come. Jay and I both grew up with pets and have fond memories of playing with them as kids. They taught us a lot about life and friendship and even the horribly enlightening period known as "being in heat" when we had to run as fast as we could to our trampoline before our English Springer Spaniel would tackle us during the times that she would hump anything that moves. I kid you not. She was seriously confused about her gender and was obviously not privy to certain rude behaviors. She also birthed countless puppies during our childhood, which never came as any surprise to us, no matter how hard we had worked to keep her locked up during her "prime time". This was also the same dog who loved to eat the cats that mistakenly wandered over from the yard of our "cat-lady neighbor".

My goodness, when I think of all this, I can't imagine why exactly I have been depriving my children of such learning adventures (enter tone of sarcasm). But the truth is, we're just not animal people, which I find a little funny because Jay worked for a vet in high school. And my family jumped around from dogs to cats to rats to birds to gerbils to rabbits to ferrets to a baby duck to lizards to fish...taking the whole fam to the zoo was entirely too expensive, so the zoo was brought to us.
When I think about owning a pet now, I have such conflicting thoughts and emotions. On one hand, the smells about do me in, right along with the amount of saliva the beasts produce. My parents have a gorgeous, sweet-as-can-be, large dog who once took a dinosaur-sized poop directly on Nate's oxygen tubing one Christmas when we were all home. This is the same dog who has some of the foulest methane production I have ever experienced...the type that seriously singes the tiny hairs that are supposed to protect the inside of your nose. Mine are still trying to grow back after last Christmas. And as for saliva, I gag at the mere mention of foamy spit. I hate dog slobber.
But we are seemingly having a change of heart when it comes to pet ownership. The kids LOVE Christmastime for reasons most don't...because they are surrounded by pets from both sides of the family on our yearly trip up north. And they often ask to visit the house of our pastor's family so they can play with their dog, who they have nicknamed "the lickinator". Watching their reactions and true joy playing with these animals have softened us over time, but I think the catalyst that truly started to change our minds was learning about Emma's "dead pet" collection. The poor strange kid has started collecting dead insects (cicadas, grasshoppers, worms) and calling them her pets. She houses them in a small, lush bed inside the play kitchen in the playroom and has regular daily conversations with them as if they are alive. Once they start to stink, she moves them to a new home in the garage. Now, tell me that's not pitiful...and almost strange enough to warrant a full neuro examination.
We had a stray dog come the house the other day for a few hours while drooling buckets all over our driveway. The girls immediately sprung to action in giving it plenty of TLC. They simultaneously realized it was a girl because "it has a pink collar" (Abby) and "it has boobies" (Emma), so they named her Ellie. Emma loved on Ellie, gave her water, endured copious amounts slung slobber with each shake of her head, and wept relentlessly when Ellie decided to move on to another location during her jaunt in the outside world. She was a mess.
So, unbeknownst to the little munchkins living under our roof, we are on a quest to find a pet...maybe even a dog. Or maybe a new dead insect. We haven't made up our minds yet. Its a big step...especially since we just got new carpet last spring. We are looking for some species who doesn't shed, doesn't smell bad, and doesn't take big dumps on any of Nate's medical equipment. I'd also prefer something that unloads the dishwasher. Shouldn't be too hard to find, right?

Monday, September 12, 2011

Positive Aspects

Scouring the internet the other night (read that: vegging on various facebook statuses), I pondered a question that sought genuine answers..."What are some positive aspects of having a child with special needs?"

I found that it was a hard question to answer...not because there aren't positive aspects to this specialized life, but that in our situation it contains way too many of the admirable aspects of normal life to be deemed as "special". If you looked past all his "equipment", numerous meds, the fact that he is the size of kids half his age, and his waning energy level compared to other 3 year olds...well, Nathan is a totally normal kiddo living life exploring and learning and enduring and loving. He is living this life as if he doesn't have a clue that it is indeed considered a "special life". As a carefree preschooler, he is blissfully unaware that he is different. And in a lot of ways, we are as well. 
But if I reword the above question to "What would you miss if you didn't have a kid with special needs?", the answers are easier to retrieve...

The obvious first answer is: the numerous people we've met through the unusual circumstances of this life. I feel like I am beginning to sound like a broken record in mentioning how thankful I am for the amazing people who have greatly enriched our lives the past 3-1/2 years...people who we more than likely would have never met if it weren't for Nathan's life. People who we call friends. People who we love. Those amazing individuals have made our lives better in many different ways, and I don't want to imagine our life without those relationships.

But the most influential part about this life that I would miss if it were different is the way it has changed we have grown individually and as a family. We look at life completely differently now than we did before Nathan was born. We have been given the amazing gift of truly enjoying each and every day in a way that most others can not fully understand and achieve. Thinking about the future has been replaced with thinking about the beauty of today and the amazing moments of daily life in our family. That, to me, is the most positive aspect of having a child like Nathan.

And speaking of the little guy, he got home Friday night from a short 24-hour stay in the hospital again. He had a rough week motility-wise with some intense retching, pain and bloating and just not tolerating food or his g-tube feeds well at all. He also couldn't tolerate the large volume of meds that he takes each morning and was vomiting them all back up within 10 minutes of having them placed through his g-tube, despite the anti-nausea meds we were giving him. A quick trip to see our surgeon Thursday morning confirmed our suspicions that one of the leads of his temporary GI stimulator had come dislodged again. Since he won't get the permanent one for another month, we agreed that the leads needed to be replaced.
So, he was admitted Thursday night for overnight fluids, and he went back to the OR Friday morning for the revision. He had a harder time coming out of anesthesia this time around and was horribly combative when he woke. He also had a harder time with nausea and vomiting afterward as well and didn't start to perk up until late in the afternoon. I think that having sevo (one of the anesthetic agents they have used) 3 times within 6 weeks has taken its toll on the little guy, as his response to it is getting worse each time. Hopefully the docs will use a different cocktail of drugs for the longer surgery coming up. Anyway, we were discharged Friday evening. And with the exception of a neuro appt this week, we hope to take a short break from the medical world for the next month. With his surgery and a trip to Houston coming up(as long as Nate is recovering well by that time), October is going to be nuts.

Wednesday, September 7, 2011

Wordless Wednesday: Labor day...a time for labor

Friday, September 2, 2011

Morning Mile

 Morning Mile started at the girls' school this week. For each lap the kids make around the disgusting, dew laden grassy mud track (we're currently trying to raise funds for a real rubber track that will be sah-weet if we can get our rears in gear and get the last of the dough saved up), they get a slightly used plastic straw as a counter. 4 laps make a mile, and you get a charm in the shape of a foot for your specialty morning mile necklace for every 5 miles that you run...20 laps. This year, the feet glow in the dark. And since the girls have to wake up an extra 30 minutes earlier just to make it to morning mile, I have concluded that glow-in-the-dark feet are the best alarm clocks around this neck of the woods.
The eagerness of morning mile usually wanes once the mornings become cool enough to be uncomfortable (so usually a little before Christmas), but they are currently loving it. I can't help but adore the school's push to make this form of exercise fun, rewarding, and important. Its amazing to see the numerous kids who get to school extra early just to break a nice sweat while running around a nasty dirt track.

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