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.

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I’m a hypocrite

I’ve been up a lot the last few nights. We head to Mayo in a few weeks again. This time it’s for lots and lots of testing…developmental testing. George will be the big 3 in April, and that’s when he graduates from Infant Development into a school-district led program (if he qualifies and we decide to go down that route).

Guess who's going to be the big 3 in April?

So why am I a hypocrite? Trust me. I didn’t come to that conclusion easily. And it’s not something I enjoy admitting, but I think it’s true. You see…I’ve been so busy planning for George’s future, that I forgot to let him live today.

Let me explain.

George doesn’t handle illness well. He dehydrates quickly and goes down hill fast. You can ask our speech therapist who was here last week when he became sick. He went from fine and playing to physically ill and very little response in a matter of minutes. By the end of the week, we were in the hospital. The culprit? Strep.

You can't see me!

There I am!

Which is funny, because we had his tonsils and adenoids removed in August to try to help with limiting his strep infections. We’ve had 3 positive strep tests since. I shudder to think what it would have been like without the surgery though.

So, now what.

We need to start making decisions. Like, do we send him to preschool? Are we going to send him to school? Continue speech therapy in a school setting? And I became so wrapped up in planning out his future, that I forgot about today.

He’s a little boy, and little boys want to play, and get muddy and make a mess. They don’t worry about developmental scores, school choices and speech therapy. They want to play with the calves, tease the puppy and make their brothers miserable.

I spent so much time reading about what could happen, that I missed what was happening.

I can’t promise that I won’t spend any more late-nights with tears in my eyes as I watch George sleep. I can’t promise that I won’t go into overprotective mother-hen mode again. But I can promise that I’ll try to let go of my planning tendencies and embrace today for what it is…another day with my children.

No, I can’t forget what the statistics tell me, I can’t pretend that there are not times when George is truly in danger…but I can’t forget that a life without living is hardly a life at all.

I’ve read the statistics, but I forgot one thing…God hasn’t finished writing George’s story yet. And those are the only statistics that matter.

Thankful Thursday – Growth

We have our next scheduled appointment set up for Mayo…it’ll be at the end of March. This is the longest we’ve gone without being to Mayo since October, 2009. A whopping six months between our last appointments.

That may not seem like a milestone to some, but it’s a miracle to me. I’ve gone from feeling like a frantic, over-reacting mother to feeling like a frantic, why-didn’t-I-push-sooner mother. There’s been a few moments of lucidity in between, but I’m not sure they should count.

George had more tests right after Christmas. And the wonderful news is that his thyroid function is back to normal! Yay! On this bumpy road that has become his life, I will admit that I would not have been surprised if something else would have come up amiss. It’s just the way it’s worked for us, but I’m more than happy to share the GREAT news!

After his appointment, I had to meet with the office where his medical food comes from…and it was interesting to say the least. George has packed on a few pounds, and although it’s not something I’m concerned about, apparently his stats aren’t the greatest. (His BMI is on the high side.)

She asked if I was concerned, and I tried not to laugh, really I did. What’s funny is that a year ago we finally got a clue as to what was wrong with George…a year ago we finally turned a page.

Prior to that, George looked like this:

George, summer 2009, just a few months old and at the start of this journey.

 

And this:

George, summer 2010. With his skinny little chicken arms, tiny legs and minus any fat.

 

At three months old, George was diagnosed with failure to thrive…and we could not figure out why. It took literally years of testing and throwing stuff at the wall to see what would stick. And now we have some solid footing, a plan and more importantly, we have weight…and happiness.

And I’m not messing with it.

Nope, I’m enjoying every roll, every chubby cheek, every ounce. I understand that his “medical food” is given to him through juice or applesauce, neither low in calories, but I have plenty of time to worry about diet changes once we have his diet down.

Because, for once in his life, George looks like his brothers:

A very Merry Christmas indeed!

 

His cheeks are filled out, his arms are strong, there is no longer skin sagging on his chest. He has a baby belly, his legs have rolls and he wears one size larger than his age. He plays by himself and with his brothers, he no longer has balance issues and he’s quick to laugh, hug and kiss.

And there isn’t a BMI statistic in the world that counts that in its measurement.

Heaven is for Real

I’m sure many of you have heard of the book, “Heaven is for Real.” I had…but I had never read it. Sometimes we avoid those things that we fear the most…and I didn’t want to think about death, or death and children specifically. But I’ve read it now. I’m pretty sure God wanted me to, so I did.

This weekend was our annual Farm Bureau meeting in Minot. George and I packed up Friday morning and headed north. I wanted to testify on one resolution specifically. It would support allowing North Dakota Children’s Special Health Services to open their doors to children with catastrophic illnesses. (Catastrophic illnesses are ones that are life-threatening. Currently, NDCSHS can only assist those children with illnesses specified by state statute…OTC is not one.)

On Saturday morning, I stood in front of the Farm Bureau delegates and tried to give a brief synopsis and explain why we needed to forward this resolution. It was, by far, one of the most difficult things I have ever done. Imagine explaining to a large body of people that your child’s life is at risk, and you would hate for other children and families to have to fight the same fights you’ve been battling. It was pretty emotional for me, and I wasn’t as strong as I would have like to have been. But I made it through, and I thank God that the resolution passed.

After that, we had our district caucus meetings. And I was sitting in the back of a room, along with my friend, Joannie. A lady came up to my table, handed me the book, “Heaven is for Real,” and told me that she thought I should have it. She gave me a hug, watched me wipe away my tears, and quietly slipped out of the room.

Sitting here, I still can’t believe it happened. It was one of those moments that (looking back on it), God was telling me not to worry about the future. No matter what happens, He’ll have George in His arms. I need to quit dwelling on the what-ifs and work on enjoying the now. I get that. And when I falter, and start to worry, I have a book to read to remind me.

I needed that.

And to the wonderful angel who delivered the message to me…thank you.

A Mother’s Love

I saw this on Facebook tonight…and couldn’t get it out of my head.

A Mother's Love

This was the caption under the photo:

This is a true story of Mother’s Sacrifice during the Japan Earthquake.
After the Earthquake had subsided, when the rescuers reached the ruins of a young woman’s house, they saw her dead body through the cracks. But her pose was somehow strange that she knelt on her knees like a person was worshiping; her body was leaning forward, and her two hands were supporting by an object. The collapsed house had crashed her back and her head.

With so many difficulties, the leader of the rescuer team put his hand through a narrow gap on the wall to reach the woman’s body. He was hoping that this woman could be still alive. However, the cold and stiff body told him that she had passed away for sure.
He and the rest of the team left this house and were going to search the next collapsed building. For some reasons, the team leader was driven by a compelling force to go back to the ruin house of the dead woman. Again, he knelt down and used his had through the narrow cracks to search the little space under the dead body. Suddenly, he screamed with excitement,” A child! There is a child! “
The whole team worked together; carefully they removed the piles of ruined objects around the dead woman. There was a 3 months old little boy wrapped in a flowery blanket under his mother’s dead body. Obviously, the woman had made an ultimate sacrifice for saving her son. When her house was falling, she used her body to make a cover to protect her son. The little boy was still sleeping peacefully when the team leader picked him up.
The medical doctor came quickly to exam the little boy. After he opened the blanket, he saw a cell phone inside the blanket. There was a text message on the screen. It said,” If you can survive, you must remember that I love you.” This cell phone was passing around from one hand to another. Every body that read the message wept. ” If you can survive, you must remember that I love you.” Such is the mother’s love for her child!!

Why did this strike a chord? Aside from just being a mother? (By the way, snopes clarifies that the picture and the story don’t go together…I’m fine with that, but whether or not the two go together, they both hit my heart.)

Well, to put it simply, I’m somewhat in the same position.

After researching and researching and researching some more…I’ve learned quite a bit about George’s OTC. And if he truly has OTC (which has been pretty well proven through testing and improvement with the diet), then we’re dealing with a disease that does a lot of taking.

For example…in OTC, males are hit harder than females. In fact, 50% of males born with OTC do not live 72 hours. And of the 50% surviving, another 50% will die by the age of 5.

Those are the facts.

So, on Sunday we head back to Rochester. And this time, the questions will be a little more pointed and a little more clear. I need to know exactly what the doctor is thinking, and what we need to do. I’ve read on some new research showing hopeful uses of gene therapy…something we may look into.

Whatever it is, we will do…I will stand over my son and let the roof crash on me, so that some day he can stand tall and read, “If you can survive, you must remember that I love you.”

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.

Thankful Thursday: Nurses

Today I have a special message of thankfulness to give, and this one is to our nurses.

With our frequent flier miles at the hospital, we get a chance to meet and test out most of the nurses here on the pediatric ward. I know a majority of them…mostly by first name.

But today, this blog post is about them. I am thankful for them everyday…especially this week.

I am thankful for:

  • Not making me feel like a bad mother for wanting to not be in the room when medicine is given. When a little kid’s throat is sore, taking medicine is a form of medieval torture, no matter how necessary it is. I can be the bad guy when I have to be, but appreciate the breaks occasionally.
  • Talking to me like a mother, not a child or a doctor. When the doctor says, “We’ll talk about going home once he starts drinking.” And the nurse letting me know that with 2-year-olds, we could be here a bit.
  • Letting me know what’s normal. The above mentioned issue of not drinking? Guess what? Completely normal.
  • Taking care of one of my most prized possessions. That includes: reading his history, understanding my concerns prior to coming in the room and going above and beyond to do what is right for George.

No matter how you look at it, all of the nurses here are pretty much amazing. And one day, when George is big and strong and a no longer eligible for the pediatric ward, I hope to come back and personally thank each one of you, for your crucial part in our journey.

But for now, a simple “Thank you” will have to do.

What gets George through a hospital stay? His puppy, his blankie and his tractor magazines!