The life of George…an update

It’s been awhile since I’ve updated on George’s story. And for those that have been following along, you’ll be happy to know that kindergarten has been going great! We’ve only missed 9 days so far, which in George’s world is pretty remarkable. And only once was it a pretty serious illness…but no hospital stays.

We had a check up at Mayo in October. The pediatric neurologist is amazed with our progress. She cannot believe how far he has come. We had a repeat MRI and the gaps in his brain that they have been concerned about have not grown any. Some serious miracles here, folks. Science and God…together.

Every day at Mayo, George would stop and say the Pledge of Allegiance to this flag. He's one amazing little kid.

Every day at Mayo, George would stop and say the Pledge of Allegiance to this flag. He’s one amazing little kid.

The last two weeks have been a bit more difficult. George has had some tummy issues that we can’t quite figure out. We’ve had an ER trip, a few docs visits…and it seems to be getting worse, not better. But we were able to get in to see a doctor this afternoon and we have a plan – and for some reason I always feel a little better when we have a plan. And if things aren’t looking better by Friday, well, then we are looking at another plan.

On day 2 at Mayo, George wore his Ninja Turtle sweatshirt. One doctor came up to him and shook his hand, and told him it was a pleasure to meet a real super hero. George is definitely MY super hero!

On day 2 at Mayo, George wore his Ninja Turtle sweatshirt. One doctor came up to him and shook his hand, and told him it was a pleasure to meet a real super hero. George is definitely MY super hero!

But with everything that has been going on, I’ve become a bit difficult. A little sensitive. Sleeping less. Needing more. Just not myself. I’ve lost a bit of my focus.

And then tonight, it all came sharply back into focus.

George was sitting behind me in the suburban on the way home. Today I had woke up late, managed to get the kids ready, worked, had rearranged schedules so I could squeeze in a doctor’s appointment for George, drove 45 minutes to the appointment, then back for two parent-teacher’s conferences, listen to my 10-year-old explain how a schoolmate had told him that he’s growing too fast that he’s going to die, talk to him about bullying and coping techniques, went to a book fair, gave my son some meds…and we were finally on the way home.

In the two minutes of silence that we were blessed with, George asked, “Is heaven fun?”

I didn’t know how…or if…I should respond. Why was he asking? Was he having dreams? Had he been hearing me talking to his doctors at Mayo? Had someone else been talking near him?

So I carefully said, “Yes, I am sure it is. But why do you ask?”

He said, “I just want to be sure I can play there when I die.”

Silence.

I couldn’t say a word.

My 5-year-old made me speechless.

I sometimes get so wrapped up in the minutia of life…and I forget the big picture. And then George will say something and it will be like God tapping me on the shoulder, reminding me that in the grand scheme of things, the destination is much more important than the scenery along the way.

I do not know how many more tomorrows George has ahead of him…nobody knows how many tomorrows they may have. Yet I know that George faces a few more obstacles than the average person. But he faces those obstacles with more bravery and courage than I could ever muster.

 

There’s no place like home…there’s no place like home

There’s no place like home.

Dang. Said it three times and it still didn’t work. I’m still sitting here, at my impromptu desk on third floor of the hospital. I remember not-so-long ago when this seemed like home. But it’s been a long time since then, almost two years, I think.

For those new to the blog, my youngest son (he’s referred to as “George” on here) has a metabolic disorder. It’s called ornithine transcarbamylase deficiency, and if you want to read up about it, and George, knock yourself out. There’s a whole tab up on the top there. (And yes, spell check, I have spelled it right. Trust me.)

George’s condition makes him more susceptible to illness. But we have had a long run of good luck, and his immune system has bounced back amazingly. We haven’t had to deal with a hospital-stay-inducing¬†illness in quite some time.

That was, until about midnight last night.

It started with a cough, followed by a sound that would wake the most sound sleeper from the deepest of sleeps…the sound of a child projectile vomiting down a flight of stairs.

George after getting settled in for what was supposed to be a simple bolus of fluids. Someday I'll learn. ;)

George after getting settled in for what was supposed to be a simple bolus of fluids. Someday I’ll learn. ūüėČ

Needless to say, my night was short, and I ended up bringing George down to his pediatrician after the other boys got on the bus. We stopped up at the hospital for a round of fluids, and were about to disconnect the IV to head home when I noticed a change.

George’s cheeks were flush, he was no longer talking or playing and he started to get “that” look. He was now¬†running a fever.

When he gives me this face, he could ask for the world and I would readily give it to him. (As if I wouldn't anyway.)

When he gives me this face, he could ask for the world and I would readily give it to him. (As if I wouldn’t anyway.)

I was given the option to stick around for the evening, or take him home and see how the night went. I thought about it for a few minutes, and then when George asked to go to the bathroom, he had a dizzy spell coming back to bed. My mind was decided for me, we were sticking it out.

And so, here I am, after midnight. I’ve been awake about 24 hours, give or take a few minutes here or there…and yet, I cannot sleep. I watch him like a hawk, listen for his IV pump, hold my breath when he coughs, all those things that a parent does for their child.

Yet, as tired as I am, I know one thing: I am blessed.

And that’s all I need to know.

This is the George that I can't wait to get back.

This is the George that I can’t wait to get back.

I’ll update in the morning about George’s progress and our (hopeful) discharge home. Fingers crossed for a peaceful night…well, what’s left of it.

3:46 p.m. – Heading home! YAY!

Being a perfect parent

It’s been a crazy few days…in ways that I can’t even begin to explain. We couldn’t get to church this morning because Boss Man returned from his uncle’s funeral at 2 this morning, and I stayed up to watch cows so he could sleep. I took a few moments this morning for myself and did a little thinking, I guess some would call it reflecting, maybe others would call it meditating.

I’m reading a book called “99 Ways to Raise Spiritually Healthy Children,” by Kathleen Long Bostrom. It’s not my usual reading fare…but any time I see something that I think will help me be a better parent, I’m game to read it.

The first two pages went straight to my heart…and I know I’ll be hooked for the other 98 ways (but I’ll only read them one chapter per day, so I can soak in the information). The first thing the book tells me is that you should forget about being a “perfect” parent. Instead, work on being “pretty good” or “good enough.” The term that they use that spoke most to my heart? Be a perfect parent for your child.

Amen.

This chapter came with three things to always remember: 1) Remind yourself that you’re only human. Let go of mistakes and missed opportunities. 2) Recognize things that you can’t control. Go with the flow. 3) Remember the big picture. You’re not in this alone, and believe in grace.

You ARE a good parent, you just can’t base your judgment off what others think. You can’t use someone else’s ruler to measure your worth as a parent. So stop doing it.

Why does this speak to me so much? I don’t think these words would have stopped me so completely this morning, had it not been for our youngest son – you all know him as George on this blog.

Before George was born, we knew that he was trouble. At 13 weeks pregnant, I became very, very sick and ended up having an emergency gall bladder removal. The risk of the surgery to his survival was pretty high, but the risk of leaving it in was high as well. We moved forward, and he showed a great amount of resilience. My right kidney gave me all sorts of trouble, and we finally got to the answer during the final weeks of my last pregnancy. I have a twist in the tube that goes from my kidney to my bladder, and pregnancy would close off that twist…blocking my kidney and causing lots of pain. Stents were painful as well, so I tried my best to make it as far as I could.

In the last few weeks of my pregnancy with George, we did an amniocentesis to see if we could deliver early. At 37 weeks, it shouldn’t have been much of a problem, but my doctor wanted to make sure. It was a good thing she did, because even at that stage in my pregnancy, his lungs were very immature. We waited until 39 weeks to the day, then delivered by repeat c-section. (I had one regular delivery and three c-sections.)

He had a few hours of trouble with breathing, but nothing major. I spent a few extra days in the hospital because of problems with my cesarean. George and I left the hospital with a clean bill of health.

But that bubble didn’t last long.

Late-onset jaundice, troubles gaining weight, something that seemed like colic, but not…finally I gave in and went to the doctor, but our regular doctor wasn’t in. Blood work, lab tests. We left the clinic with promises of phone calls with answers. The clinic is an hour from our farm, so I took advantage of the time to get a few groceries and other items not available in our small community.

My skinny, tiny little boy. My heart.

My skinny, tiny little boy. My heart.

Something told me to check our home voicemail. We received a message from the doctor himself, asking for me to return his call ASAP. (I don’t know why they didn’t use the cell phone number I gave them.) I did, and received the news that we needed to get to the hospital. We were being admitted.

What was wrong? It seemed like everything. Nothing made sense. Off-the-charts liver enzymes, critically low blood sugar, etc. There were more lab tests with flags than normal. And we didn’t have a clue what was going on…he was three months old.

Who can deny this determination? Meet all of your challenges head-on.

Who can deny this determination? Meet all of your challenges head-on.

That began a whirl-wind of appointments, specialists and 18-months not knowing what was going on. I pushed and pushed…knowing somewhere there would be an answer. Failure-to-thrive is a symptom, not a diagnosis.

Finally, the fourth physician that was involved at Mayo (or maybe sixth? seventh? I lose track.) came up with a long-shot. Ornithine transcarbamylase deficiency. (You can check out the OTC tab on top) Yes, spell check, I know that’s spelled right. I’ve had to spell it many, many times.

Low-protein diet, tons of doctor’s visits, extreme caution with illnesses…it’s been a crazy ride. Imagine, a rancher’s son living the life of a vegan – yet stricter. But the payoff? Weight. Curiosity. Growth. Imagination. My son.

I have NOT been a perfect parent. But I have been the perfect parent for my son.

According to science, my son isn’t expected to live to see the age of 5. He’ll be 4 in April. According to science, my son should have developmental disabilities. His MRI shows the gaps where his white matter should be. He’s an extremely intelligent little boy who knows all his letters, colors, numbers and shapes. He has started adding and subtracting and can read simple words. According to science, he should be sickly and weak. He hasn’t been in the hospital since last year at this time. According to science, he shouldn’t be growing. His blood work shows that he produces no measurable amount of growth hormone. His pituitary gland is small and malformed. Yet he weighs 42 pounds and has grown three inches this year.

We are beating odds and blowing away science. And we won’t quit pushing.

No, I am not a perfect parent. But I am perfect for my son. And he is perfect for me.

Trust in the Lord with all your heart, and do not rely on your own insight. In all your ways acknowledge Him, and He will make straight your paths.

Proverbs 3:5-6

An anniversary of sorts

It’s hard to believe that it’s been 3 years. Three long, crazy years that I was never sure we’d make it through.

George, summer 2010, before we started his low-protein diet. With his skinny little chicken arms, tiny legs and minus any fat.

The beginning of October is the anniversary mark of our trips to Mayo in Rochester with George. Sometimes I find myself staring in those big, beautiful eyes of his, and I am amazed at where we were and how far we’ve come.

How will we celebrate such an anniversary? Well, with a trip to Rochester, of course! Actually, we’re pretty lucky because our trips are now down to twice a year (barring any bumps in the road).

So, as we prepare for another series of doctor’s appointments, please keep George in your prayers. Things have gone so well the last several months, I’m just hoping and praying for continued good health and no hiccups in his blood work.

George, summer 2012 – all sass and attitude! Full of life, love and a true blessing through and through!

It’s been a long road, but you frequently find the best trips are the ones that take awhile to get there. Right?

Thankful Thursday – Technology

Technology. Some treat it as the downfall of our civilization, some treat it as the answer to everything. Me? I see it for what it is…a gift that can be used in many wonderful ways.

We recently planted a plot of sweet corn. What does that have to do with technology? Well, this isn’t just your run-of-the-mill Grandpa’s sweet corn. This is Bt sweet corn developed by Monsanto.

Our sweet corn seed bag from Monsanto…and I can’t wait to harvest this crop!

Now, I say “developed” because the seed itself is just a simple corn seed, it’s the traits of the corn that makes it special. This corn is more resistant to bugs, which makes it less likely that we’ll need to use pesticides on it. The corn is also hardy to herbicides, meaning that we can use the same chemical that millions of homes use everyday when needed to kill the weeds in the field, limiting the competition to the plant and improving the corn yields. That means more corn with less cost, less trips up and down the field, and less soil disturbance. The fewer times we have to disturb the soil, the better our soil health is, and the less we lose to erosion. A win-win.

This sweet corn is a great new product, but the technology is nothing new. Modifying traits in seeds has been going on for decades. Need examples? How about burpless cucumbers? (Burpless cucumbers are seedless…but without seeds, how are there more?) Oils made from seeds that are healthier? Seedless grapes, navel oranges…the list could go on. Biotechnology is a mainstay of food production throughout the world. With it, we can develop plants that can grow in less favorable conditions, produce better tasting crops and can be developed for certain health-care concerns. And that’s where my hope comes in…

It’s not just the sweet corn that has me thankful today. It’s the possibilities that this corn presents.

Our son, George, has a metabolic disorder that limits his ability to break down proteins. To sum it up in a very short statement, he can’t have meat, dairy, pastas, etc. His diet is limited to 12-13 grams of protein per day. The rest of his essential amino acids comes from here:

This is George’s formula…it stinks to high heaven and I have to hide it in different foods and stuff, but it’s what he needs. And that’s all that matters.

Yes, George is still on formula. And he’ll be on this special formula for the rest of his life. I’m thankful for this can, because without it, I’m not sure what we would have done, or what would have happened. But I don’t need to worry about that.

So what does this can of formula and a cob of corn have in common?

Imagine: if we can make a cob of corn that is resistant to bugs and herbicides, maybe we could eventually make a version of meat that has limited protein in it. Maybe we could make a dairy product that George could drink (and I’m not talking coconut beverage or soy substitute). Maybe we could make a pizza, complete with cheese and toppings, that would be easy and tasty for him to enjoy.

No, this cob of corn is not just a simple treat for my family to enjoy in a few months. It’s not just a soil-saving, resource-saving, farm-friendly crop…it’s a sign of what we can do when we take the time to investigate and do some research.

George, enjoying some yummy sweet corn!

I know what research did for us in the past. I see him every morning, waking up with an amazing smile and a great zest for life. It’s where the research leads us in the future that has me excited…and I hope, for George’s sake, that nothing stands in the way.

I am thankful that Monsanto provided us with the sweet corn seed, but please remember that the thoughts, ideas and opinions are my own…as well as those cute photos of my boys. Thank you!

It’s Creeping Closer

Whooping Cough. I never used to think much about it. Along with chicken pox, influenza, measles, etc. It was all just stuff that I didn’t worry about. My children were vaccinated, and if they still managed to catch something, well, they’d recover and be no worse for wear.

That’s no longer my way of thinking.

Ever since George has blessed our home, I’ve become terrified of outbreaks, even of the simplest of illnesses. Because with George, nothing is simple.

So what made this all come up now? I saw an article in a Montana paper about the whooping cough outbreak there. Montana. It makes my stomach hit my throat.

For those that aren’t aware of geography, or aren’t familiar with the Upper Midwest, Montana borders North Dakota on the west side. Yes, we’re on the east side, but so many people (even local people) are traveling from western North Dakota to eastern North Dakota that I don’t believe it will take long at all for the epidemic to hit our state. And that is cause for concern.

During our last trip to Mayo, our team decided that with the circumstances in our area being what they are, that we should go ahead and have George fully immunized. (Up to this point, he was only immunized with those vaccines that were not derived from a live virus.) This is both a blessing and a worry at the same time.

I feel blessed, because this will mean no longer having to wonder whether or not we should venture out. Well, at least it alleviates the concern quite a bit. I’m worried because the days following the vaccinations will be stressful at best.

It wasn’t a hasty decision to fully vaccinate. There are concerns and risks involved…but the risks can be carefully monitored and better controlled when you know what could be coming, instead of being blindsided. For example, if George were to be exposed to chicken pox, it would take up to two weeks before we would even know that something was truly amiss. The “pox” do not show up until the disease has already been in your liver, and George’s liver is already an organ we don’t want messed with. So what do you do? You take the known risks and have a plan.

Must we, with the photos Mom? All the time?

But before we can get to that point, we have to get George over his cold and make sure he’s as healthy as can be. And in a house full of boys, that’s not always an easy task!

Good Friday post replay

I wrote this post last year about Good Friday falling on Earth Day…and how my son mistakenly thought that was the reason he didn’t have school. Although today isn’t Earth Day, when you have a rough week, it’s a comfort to know that there are days such as Good Friday to give you hope and remind you of the sacrifices made:

 

I was all prepared to write a post today about all the things we do on the farm that celebrates the Earth, such as using our manure, using no-till whenever possible, using the water from our well to heat our home…then heat our shop…then to water our cows, etc. (That’s right, all the same water, I’ll explain it sometime.)

But as I was sitting down to type last night, I decided to check out George’s lab work that was done at Mayo. (They have a really cool set-up, where you can register to log-in and receive the lab results yourself. No more waiting for that stinkin’ doctor’s call!) Anyway, I logged-in and for the first time ever, and I truly mean EVER, all of George’s lab work came back within normal ranges! (Well, minus the Vit. D and iron levels, but those are diet/sunshine related, not illness/disorder, so they don’t really count.)

I’ll admit it, I cried a bit. For the last just-about 2 years, I’ve dealt with continuously feeling like something wasn’t right, that we weren’t on the right track, bloodwork continuously showed something off here or there, nothing fit together, etc. It was a whirlpool of nightmares. Since George was born, he has seen: three pediatricians, two pediatric geneticists, two pediatric gastroenterologists, pediatric cardiologist, two pediatric endocrinologists, two pediatric neurologists, two dieticians, pediatric oncologist, pediatric neurosurgeon and several other various ER docs, nurses and staff. He has had: two colonoscopies, an upper GI series, multiple x-rays and ultrasounds, a liver biopsy, three MRI’s, an echocardiogram and two CT scans. He has given more blood for bloodwork that some people donate to the blood bank. He’ll be 2, and he’s been through so much, but is still such a wonderful little boy.

One of the things that I hear the most, when people hear about George, is that he doesn’t LOOK like anything is wrong with him. That’s always the problem. I wonder how many of those doctors blew us off because they felt he didn’t “look” sick enough. I know for sure one did, I overheard him tell the students that were following him those exact words. It went something like this, “And in this room is a 6-month-old male patient, case seems somewhat unremarkable. Mother has sought care at Mayo. Came in with fever, slight dehydration, etc. There’s no clear diagnosis, and I’m not real sure why they’re here. Their local hospital probably overreacted. We’ll keep him through tomorrow to satisfy the Mother.” (Needless to say, I requested a discharge immediately and we never returned to that set of physicians.)

We have so much to be thankful for.

This morning, Big Bro told me that they didn’t have school today because it was Earth Day. That sealed the deal for me. I’m not writing about our farm today. I’m not writing about how to recycle, or how to reduce your carbon footprint, or how to reuse your milk carton to make a mailbox. We should all know these things, and we should all be doing them. Every day. Period.

But today is Good Friday first. It’s a day that we celebrate all that has been given for us. The Blessing that was bestowed upon us so many years ago. And for me, today is a day of thankfulness.

Yes, I won’t be brushing my teeth with the water on, I’ll turn off lights where I don’t need them, our bulbs are already energy efficient. Those are things we do everyday. But today, I’ll spend extra time thanking God for those gifts that He has given. Including the ultimate sacrifice of His only Son.

Today is definitely a Good Friday.