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.

Advertisements

Miracle Monday

Today I have a special request. It’s not for myself. Well, kind of, but not really.

My mom’s best friend is in need of a liver transplant. Desperately. She’s also been a second mother to me, for most of my life.

She hasn’t had an easy life. But she handles it with a great deal of grit, determination and such a no-nonsense attitude that I’m amazed at it all. She hasn’t been healthy for a long time, but her complaints are few and far between, and she’s rebounded from setbacks that would make most people throw in the towel.

And now she’s hit another roadblock.

And so I’m asking you for help. Actually, I’m pleading. Please, take a moment to say a prayer. Can we storm the gates of heaven for a miracle? A Christmas gift for Darlene, a blessing for her and her family…and all those that know them.

And if you’d like, you can leave a note for her. I will print them off and give them to Darlene, as a way to show her that there are people across the country that are on her side, joining her in the fight, and willing to spend a moment of time in prayer for her healing.

Thank you. I know it’s a season of giving, but this time I’m asking for something in return. It isn’t much, but it can make all the difference in the world.

Fighting the Good Fight

Yesterday, my fellow blogger and friend-across-the-miles started her second battle with cancer. I’ll be praying for her for the next few weeks/months as she boldly fights this beast called cancer. If you’d like to swing over and give her a shout, just letting her know that others are in her corner, you can leave a comment on my “Fight Like a Girl” post that you did, and be entered to win a pink KitchenAid Artisan Stand Mixer. I’ll be giving it away at the end of the month, so hurry and enter!

I’m sharing another reader’s cancer story today…I’m so glad I did this. I’ve learned so much about the strength of so many women. You guys are all amazing. It makes me feel silly for worrying about some of the things I worry about. Thank you for a lesson in humility, a lesson in strength and a lesson of how to keep going.
I wanted to share with you my story of my step dad that has passed away to cancer.  Five years ago in May my mom married Bill.  They were happy together in fact the happiest I have ever seen my mom in years.  In August Bill had a swollen gland in his neck so he went to the hospital.  For a couple of months the doctors told him it was allergies and put him on Zertec and antibiotics.  Sept 8, 2006, Bill got up during the middle of the night to go to the bathroom and he collapsed on the floor.  Blacked out and was unresponsive.  My mom had called 911 and the ambulance was on their way when she had called me.  They did get him to start breathing again on the way to the hospital.  Several hours later the transfered him to another hospital and mom and I were on our way there too.
Once there, they did a scope to look at his throat and found a cyst wrapped around his main artery and that is what caused him to black out and quit breathing.  After further tests we found out it was cancer, Yes cancer not allergies.
That’s when the battle began.  We stayed at a house that is just a block away from the hospital and the Cancer treatment center.  While Bill was in the hospital trying to get better we spent endless hours by his side (the treatments he was receiving and the lack of blood to the brain would make him hallucinate).  Four weeks after he was diagnosed with cancer, he woke up one morning and asked me if I thought he was going to die and I told him no.  That night mom and I went home to get clothes and so I could spend sometime with my family and we got a phone call that we needed to come back. Bill had taken a turn for the worst.
We drove back that night and he did make it three more nights before he passed away.  Cancer is a horrible disease to watch someone die because of it makes it even harder.  To see a strong man weak and needing help getting up, going to the bathroom, and not being able to eat because the radiation burnt his throat was very hard and then to find out that the treatments didn’t help was frustrating.  With cancer I think a person has every feeling possible at some point and time of treatment.
I pray for all people going through cancer, their family, and their cartakers every day.  It takes alot of courage and strength to get through such a horrible disease.
Thank you, everyone for sharing your lives with me. Let’s keep raising awareness, and supporting others that are fighting the good fight. We need more marks in the win column.

Monday at Mayo

Today was our first day here in Rochester for our fall checkup. We have met with the dietitian and got some really great new ideas for George’s diet.

For example, she gave me the idea of grilling a portabello mushroom (the great big cap) and topping it with a bit of salsa and a little bit of shredded cheese, to make it resemble a burger. What a GREAT idea! (I just hope George goes for it!)

We’re also going to be in contact with a chef that has a daughter that follows a low-protein diet…can’t wait to get some more ideas and recipes!

But I would like to give a big shout out to those people that have been so amazing and have made me feel like I was at Scooter’s coronation activity today. Scooter was named Little Mr. Ellendale last fall, and that meant that him and Little Miss Ellendale would be part of the high school Homecoming ceremony.

Unfortunately, this is Homecoming week…and I couldn’t reschedule this appointment again. So I missed it, but not really. Not one, not two, but at least THREE different people took photos for me. And truthfully, it probably went better than if I would have been there.

Scooter, escorting some beautiful women!

 

Little Miss and Little Mr. Ellendale - future Homecoming royalty???

 
 

The beautiful thing about living in a small town is that you can ask someone for help, and know that all is taken care of…and I can’t believe how lucky I am.

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.”

Just another Manic Monday

School starts here tomorrow. And as bad as I feel for saying it…I can’t wait. I need some routine, some down time, some “regular” stuff. You know?

Just when I thought a week of plane crashes, hospital stays and sick little boys was looking up, fate stepped in. Big Bro was bit by a dog at the local park. Said dog had no vaccinations. It all adds up to Big Bro having to be on a round of antibiotics for the sore, and the dog being quarantined for 10 days to watch for signs of rabies. Even indoor pets need vaccinations. (Let’s not even get to why an “indoor” pet was at the park.)

For those that don’t know…let me explain to you what rabies all entails.

  • Rabies attacks the brain and spinal cord. If it is not prevented, it WILL cause death.
  • This year, more than 55,000 people will die from rabies. That’s one person every 10 minutes.
  • Rabies is 100% preventable. There are vaccinations for animals and treatment for humans that are in contact with infected animals.
  • It can only be passed through saliva, not blood.
  • More than 40% of the people bitten and affected are children under the age of 15.
  • Dogs are the source of 99% of human rabies death.
  • There are no tests available to diagnose rabies infection in human prior to the onset of clinical disease.

Well, enough of that, I think you get the point. Rabies is serious, rabies is deadly, and it’s simple to prevent. This is all a situation that didn’t need to occur. So please, have your pets properly vaccinated and cared for by veterinarians. If you can’t afford to do that, then do your animal a favor, and find them a new home.

I will know within 10 days if we have to go through the rabies series with Big Bro. Sooner if the animal dies between now and then. Is it likely that the dog has rabies? No, but even “indoor” pets can have contact with disease-carrying animals. Is it likely that the animal will get sick? No, but with a 100% fatality record, it’s not worth the risk.

What a way to start the week…and the school year!

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.