When headlines hit home

The headlines in the news lately have been overwhelming, to say the least. Whether it’s plunging markets, crop disasters, social unrest or just the “regular” ridiculousness that seems to be coming from the highest office in our country, it’s fair to say that for the most part I’ve been avoiding reading the headlines.

Until last week.

There was a blurb that caught my eye…and then it caught my heart.

Most of the time, when I catch the headlines, especially those with medical focus, I hardly glaze over it before I move on. The world of news is a tad over the top these days…and truthfully, I prefer not to drown myself in the negativity that seems to be occurring. But last week one headline had my full attention:

“For some people, too much protein can be deadly – “

Oh wow. That hits home.

What Eli has been diagnosed with is a urea cycle disorder. This could be his story. This is what we fight against.

Every. Single. Day.

George

Yep. This pretty well sums him up.

Every meal.

And it’s exhausting. And there are times when we aren’t as vigilant as we should be. But after reading about a bodybuilder who didn’t listen to her body soon enough, I’ll be on guard. I’m just grateful for the wake-up call.

Because wake-up calls are a lot easier to answer then the ones that end in tragic news.

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2016’s Last licks…

I’ve heard most people come to the consensus that 2016 wasn’t exactly the best year – and if you were an older celebrity, you’d have been pretty darn lucky to make it out alive.

I’ll admit that 2016 wasn’t a great year for me. But it ended with one final blow – to George’s hair line.

eli-hair

Location, location, location – of course, it couldn’t be on the back of his head.

Yep, the poor kid now has alopecia. And we’re hoping it’ll stop at the one spot, but only time will tell. The doc wanted to treat with steroids, but apparently having a few injections to his scalp didn’t sound all that appealing to my little man. He declined to cooperate. So we’ll try again another day.

eli_wildhair

He wasn’t impressed with the day as a whole.

We are on track to get some blood work drawn, so we can make sure there isn’t anything else going on…because that’s how we roll. Something simple snowballs into something more complicated and then all of a sudden you end up at Mayo having a world-renown doc tell you that she’s never seen anything like it before. Not that that’s happened before or anything.

And really, what are the chances that could happen twice.

Never mind.

So here we go – down the road of wait and see. At least it’s a familiar path. And I’m much more patient now.

Did I just hear you laugh?

I’ll keep you posted. And if anyone has any tips or tricks, let me know.

My letter to George…

My dearest little boy,

I am certain you know how much I love you. If I have said it once today, I have said it a hundred times. You have taught me so much about life, but you have taught me even more about love. I have learned from you to not take time or life for granted, for we never know what tomorrow will bring.

For the last five years I have held you in my arms and protected you from everything that I could. I asked questions when I wasn’t satisfied, I have demanded action when I thought it was needed, and I have fought for what I thought was right for you. And it’s been worth every sleepless night and every tear-filled moment.

George, summer 2010, before we had a diagnosis more than "failure to thrive." This picture sometimes makes me cringe...wishing I could go back and cheer myself on...pushing harder. But you know what they say about hindsight.

George, summer 2010, before we had a diagnosis more than “failure to thrive.” This picture sometimes makes me cringe…wishing I could go back and cheer myself on…pushing harder. But you know what they say about hindsight.

I have spent so much time ensuring that you have a long life…and now it’s time for me to let you live.

Kindergarten. I wasn’t sure this day would come. They’ve said from the beginning that we can’t take the little things for granted. That there’s a chance that some day we’ll have to start over – you may need to learn things over and over again. They’ve warned us about regressions and delays. But they weren’t prepared for you.

They do not know your spirit. But I do.

This is the George that we know and love...he just needed a little help getting to this point. We sometimes slip, and it's  not all roses, but that smile and those eyes make it all worthwhile.

This is the George that we know and love…he just needed a little help getting to this point. We sometimes slip, and it’s not all roses, but that smile and those eyes make it all worthwhile.

You will get on a bus this morning and start a new chapter. And I will have to fight against every fiber in my being to keep you safe with me. The world does not know how to protect you like I do. I can tell them all they need to know, but that does not mean that they will understand what’s on the line. But you will show them.

They will see the light in your eyes, and they will understand. You are not just a little boy going to kindergarten. You are hope. You are love. You are life.

Yep. This pretty well sums him up.

Yep. This pretty well sums him up.

My dearest George, you are meant for great things. Your story was written before time began. You will touch people in ways that they won’t understand for years to come.

You are going to school to learn so many new lessons. But what they don’t know is that you will teach so many as well.

You have faced adversity and tribulations that many could never imagine. And yet, you continue to trust with a loving heart that so freely gives that it sometimes takes my breath away.

Kindergarten. Such a big step. I’ve worked so hard to ensure that you’ve been growing. I forgot that it means that you’re also growing up.

This is what love...and hope...looks like.

This is what love…and hope…looks like.

I do not know what the future holds. And I would be lying to you if I said that I wasn’t scared. And I’ve always promised not to lie to you. Even when something may hurt. And as much as this hurts me, and as unsure as I am, I know that I can not hold you back. Even if I wanted to.

My dearest little boy, as you walk into that school tomorrow, I can only hope to be half as strong as you are. And never mind Mom if her eyes are a little damp, and she holds you just a little longer – I’d hold you forever if I could.

I know it’s just the first day of kindergarten – but I think I know what it feels like to have sent the first mission to the moon. I’ll rest easy once you’ve landed back home.

I love you, little man – to the moon and back.

Mom

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?

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.

The blessings of social media

I regularly hear people talking about the amount of time that is wasted on social media. When people ask what I do, and I tell them that I blog about our farm and our family, it’s almost as if I just told them I’m a stay-at-home mom…oh, wait…

"George" and I...towards the beginning of this journey. It's amazing the changes that have been made, to both of us.

My point is, that neither my chosen profession nor my hobby gets much respect in the real world. (You can decided which is which.) That doesn’t bother me, and for the most part, I ignore it…but last night it became very clear to me that all of my work and time “wasted” has not been in vain.

For those that have been following along a little while, you know that our youngest son, “George” on the blog, has been diagnosed with OTC. (You can read more about it on the OTC tab above.) It’s been a very crazy ride, but we’re feeling our way through, and have seen some amazing results in the last year.

But that doesn’t mean that we haven’t had problems, or that there were times when I wasn’t really sure who to turn to for answers, venting, etc.

And then I received an email. And not just any email, an email from the Executive Director of the National Urea Cycle Disorder Foundation, which just so happens to be the link I use in my blog posts describing OTC. Yeah, that’s big.

I think back to that meeting in August, almost two years ago, where I finally met JP in person. There was a round-table session where you could just sit and ask different people questions relating to social media. I sat at her table and asked if she thought that my story was worth telling (we had been “connected” through Twitter). I thought that my connections through Twitter and facebook were probably enough, maybe a blog would be too much, and maybe I didn’t have anything to really share.

With her encouragement, I started Wag’n Tales in September of 2010…and the rest, as they say, is history.

And I’m not the only one that Janice has positively influenced through social media. Just check out her latest blog post and see.

Yes, social media can take away time. It can be used for evil and wrong-doing. But when it’s used in a positive way, it can truly be life-changing…

In fact, it can be life saving.

Home Away from Home

Well, George has had a bad week. Yesterday (Friday) we came in for IV fluids. Unfortunately, George was making his Mama nervous. He kept falling asleep. By noon, he had taken three naps, and by the time we were in Aberdeen getting fluids, he was on nap number seven.

Now, I know that after the week he’s had (tonsils and adenoids out, tubes in ears, staying in the hospital for three days, etc.), he deserved some rest…but for a 2-year-old, well, we were dwelling in a dangerous area.

George’s OTC has “episodes,” which are periods of seizures, brain swelling, high ammonia levels, etc. These are medical emergencies and need to be treated with IV therapy ASAP. In fact, I carry a letter from Mayo and a letter from his pediatrician, instructing any ER we may end up visiting that if George comes in with fever, lethargy, or other unexplainable symptoms, he needs to be treated immediately. No waiting for triage, no waiting for doctors orders, blood draw and IV first, questions second.

So, my question when we came in Friday afternoon was, “Is his lethargy caused from regular post-op blahs? Or are we dealing with something else?” Doc couldn’t answer that, so we drew some blood. And quickly received our answer. George was dehydrated.

Now, I received a thorough grilling from our pediatrician. You see, he was behind in information. He knew that George had surgery on Tuesday, but he didn’t realize that he wasn’t taking anything orally and had only been released the night before with the saline-lock in his hand, with orders to come back each day for fluids until he was drinking 20-30 ounces per day. So we had gone a little over 12 hours without fluid, and George’s stats weren’t good.

The doc explained it to me like this: George’s body thought it was starving. So, it started the process of breaking down it’s own tissue to get enough protein, etc. that it needed. He called it acidosis.

So, we are back in the hospital. We have learned a valuable lesson. George can’t go very long without fluids. He dehydrates in RECORD time…and I mean fast! And although he was producing tears, had a runny nose, moist mouth (all signs that he’s hydrated enough), the blood work showed a way different story.

And now we know.

It is Sunday…and I will give thanks to God for allowing us to have the technology and the means to be able to figure these things out, and correct the deficiencies that are there. I will thank Him for the wisdom of the doctors, the compassion of the nurses and the love and care of all our friends and family. I will thank Him for mother’s intuition.

But most of all, I will thank Him for George.