Friday, January 28, 2011


I was recently enamored with a question on a medical message board that I frequent: "What stresses you out?" In a month that has been so difficult in our mito community, I found myself pondering this question over and over. Two of our precious "mito kids" have passed away in the past couple of weeks, and one of our dear friends, Cooper Knight, is currently in a battle that may take his life. It has been a very difficult couple of weeks in the mito community...a very stressful time.

Stress...that is a word that is often discussed during morning news shows and seen in multiple medical journals. We are all under some degree of stress in our lives...some more than others. Many studies have been conducted to try to understand the role of stress on the body. Stress is a good autonomic response of the body to help you try to deal with any sort of danger in your life. The amount of stress someone can handle depends mostly on personality, as some may be able to cushion intense amounts of stress without much issue and others may fold at the mere mention of a stressful situation. But, it has been proven over and over that prolonged stress almost always causes severe health problems and symptoms to those who endure it...a reason why so many soldiers come home from war-lorn situations "different" from a mental and physical perspective.

Prolonged stress has been known to cause numerous health issues...heart disease, digestive and sleep problems, obesity and depression...all complications that can be induced by stress in one's life. But is all stress bad? And how much stress if too much?

It is no secret that our family has a lot of stress encompassing our life. As an outsider looking in through the window of our family, I would be the first to say "I don't know how they do it". Before I had children...and furthermore, before we had Nathan...I had NO IDEA how people lived life with a medically complicated child. How stressful! But families live this life every single day...they live life, experience life, and enjoy life. While it seems stressful on the outside looking in, it does not "always" seem stressful as you are living it. We live life, experience life, enjoy life.

I put "always" in parenthesis because sometimes life is indeed so difficult to handle. In the above question of "What stresses you out?", my reply was the following...

"The unanswerable and hard questions stress me out...will this fever land him inpatient? why is he retracting so much today? What do these strange test results that no doctor understands truly mean? Will kids make fun of him if we send him to school? How do I answer tough questions about Nathan's life from my daughters...his sisters? How do I prepare for the future? Do I push him so that he may attend college someday? Or do let I him play and enjoy every single aspect of life without the extensive educational load? How do I make his life as normal as possible? If we do "X" this weekend, what will the effects do to his body? How do I accurately explain his disease to others who ask about it? How do I accurately explain his disease to those in the medical community genuinely interested in knowing more? How do I explain to those who have a preconceived stereotype of others with his same disease? How do I continue to build the bridge of trust and respect between us and the medical community? Have I done enough research and reading to understand enough about this disease? Have I given enough love, support, comfort, teaching, understanding, and guidance in order to support my son and his sisters through this life? Do we have enough life insurance to bury him if the worst shall happen? Where will we bury him if that does happen? These...these questions are what stress me out on a daily basis"

So, do we have more daily stress than others? Maybe...but maybe not. I don't want to underestimate the stress of marital issues, financial burden, drug abuse, job insecurity. But I will admit that we do indeed have a lot of daily stress encompassing our lives. It is indeed quite difficult watching your child suffering from an incurable degenerative disease. It is difficult to constantly make sure that our other children are getting adequate attention and loving arms around them during these times. It is difficult to make sure that our marriage is getting ample time of reconnection and communication.

But, how do you deal with stress? Excessive food, nicotine, drugs and alcoho
l, social withdrawal and neglect...these are all ways that a lot of people deal with stress. Personally, I like to while listening to good music. It truly does help my emotional needs.

But more than anything, I turn to a scripture I was taught to memorize as a child: "Come unto me, all ye that labour and are heavy laden, and I will give you rest." Matthew 11:28 For that is the greatest "medicine" for stress.

Wednesday, January 26, 2011

Wordlittle "meoooooow" Wednesday

A video my sister took over Christmas...I'm thinking we need to educate our children in the right way to treat animals before we get a pet. Just saying...

Monday, January 24, 2011

Not your usual casual evening

Abby brings books home from school every night to read for homework. The kids take a test the next morning at school to see how much they truly comprehend from the reading. It really is a great tool to check their understanding or how they need help in comprehension as they learn to read. I know I have said a million times, but I am so happy with the elementary school in our district, and especially the teachers.

This weekend, Abby brought home a book about a little Indian girl. In this book, this girl had lost her family and many in her tribe from drought and famine. She clung to her little buck-skinned doll that her deceased parents had previously given her for comfort. In the book, the "spirits" of the Indian tribe had told them that they must sacrifice their most honored possessions in order for rain and food to once again grace the earth for their livelihood.

I watched my oldest child during this moment in the she continued brokenhearted through the tough events that followed in the story. Tears filled her eyes and her voice broke as the story-tale Indian girl sacrificed her beloved doll into the fire for the "spirits". I then witnessed her smile as the book ended with a bounty of harvest, rain, and food as the "spirits" were pleased at this Indian girl's sacrifice of her beloved treasure.

It was watching my dear daughter's reaction at the end of the story that I realized the next step in my parental duty...

Walking to the girl's bookshelf, I pulled out the large blue book of Bible stories.

"Girls, that was a "fiction story", meaning it was not real. The story I am about to tell you is a TRUE story...completely real."...

I then thumbed to the story about how Abraham, under God's instruction, went to Mount Moriah in order to sacrifice his son, Isaac...and how God provided another way, a ram, in the stead of Isaac.

After reading this story and wiping the tears pouring out of my oldest daughter's eyes, I thanked God for giving me the opportunity to share his love, his will, his glory with our children. It was at this moment that I told m daughters that they were actually not our children, but the children of our Lord. That our God has lent them to us to raise in this world to love and honor him. That I loved them with every ounce in me, but God loved them more...even though we could not fully understand that concept on this earth. That is was imperative that they did everything in their life to honor and obey the God who gave us breath, no matter what trials and circumstances envelop their lives.

It was a defining moment in our little family...a night where our girls wept for the love of our Savior. A night where they understood that their sins were ultimately forgiven through the blood of Jesus. A night where they fell asleep with tears, longing to know God more.

It was an emotional and exhilarating night, and I thank God for these precious children he has lent us to raise...for every moment with them, however difficult and exhausting they may be.

Thursday, January 20, 2011

5 years

My dear Emmabear,

You told your preschool class earlier this year that you didn't like it when kids called you "Emmabear"...that only adults could call you that. You then edited the request saying that anyone could call you "E-bear", as that seemed to sound cooler in your mind. But for as long as I can, I will call you my "Emmabear", for there will be a time soon when you dismiss that name altogether.

5 years old...incredible. I simply can't believe it. You have reached an age with multiple changes. During this year, you will start kindergarten, learn to read, tie your are practically grown. You will soon say goodbye to your preschool days and welcome your years as an elementary school student.

The older you grow, the more I see my own self in you. You are headstrong, yet hesitant in new situations. You are witty, yet insecure when around unfamiliar circumstances. You are a leader, yet you will follow until you are secure in your own abilities. I relate with your personality so much...your way of thinking and analyzing situations. However, I have never been as smooth as you when it comes to relationships. You are amazing at getting others to seek after your friendship and guidance without really trying for the attention. You are a sincerely charm those around you with the twinkle of your eye and the wit of your tongue. You are an incredible people-person, my sweet child, and I can't wait to see how you use this gift in your life.

While years 1-3 were a bit (ahem) "difficult" in trying to shape and channel your behavior and personality, this year has been a breeze and a blast for the most part. You usually wake each morning in a delightful attitude ready to tackle the day....though you will indeed be the very first to complain when you are inconvenienced in any way. You are genuinely kind and generous to others throughout the day, always eager to help and entertain anyone available. (Granted, this is all based on the sheer circumstance that you have had a good nap and record of nightly sleep during these days...if not, "all hands on deck" in control of the Emmabear.) But most of all, you are delightful...sweet and compassionate and so incredibly loving each and every day.

You had some tough times during the past year...starting preschool, giving up your precious Bear-Bear in a victorious attempt to stop sucking your thumb, learning to ride your bike without training wheels, being shuttled to various places during your brother's dr. appts, hospitalizations, and trips to specialists...but you never missed a beat. We are constantly amazed at your resiliency to change during major circumstances in your life.

You started talking about God a lot this ask interesting and profound questions almost daily about our beliefs. You have such an amazing heart, and it warms me to the core to know that most of all, you want to serve God with everything in you. You want to know everything you can about him, and I constantly find your questions challenging and encouraging at the same time. You want to need to know...

My Emma; my big 5 year are simply amazing. You immediately change the hearts of everyone you contact and steal the hearts of those who love you. You are an amazing kiddo, you are. Happy 5th my precious child who still makes wishes upon stars and expects them to come true.

Wednesday, January 19, 2011

Wordless Wednesday: My wittle skater

Note to others: My son is indeed at a bribable age for adorable photographs. The cost of these shots was a mere ONE dum-dum sucker. And some extra time on the ipad. So worth it.

Tuesday, January 18, 2011

More from Christmas...just a month late

I still have one more installment of Christmas pics after this one...I just keep forgetting to get around to posting them. One of the reasons we love going out to Jay's parents' is because the kids get a taste of how it is to be in the country. They love driving the go-cart and tractor any chance they can get. They get dirty and muddy, collect rocks and sticks, and explore the countryside until their heart is content. Here are some pics of the kids enjoying the "equipment".

Thursday, January 13, 2011

The reason we have copious amounts of cars and trucks around

Emma: Come on Nate, let's play dress-up.
Nate: Nooooo, I not wanna play dress-up.
Emma: Yes! You will be so cute in this Ariel dress.
Nate: Noooooo, I not wanna.
Emma: Come on Nathan, just step in right here.
Nate: I not wanna wear a dress.
Emma: Do you want to put on make-up?
Nate: YEAH!!!

Tuesday, January 11, 2011

A red letter day

First off, I met with my ENT doc this morning and received some good results from the biopsy. The "enlarged lymph nodes" that I had were not actually lymph nodes. Instead, they were fatty-fibrosis tumors that were setting up camp exactly where my occipital lymph nodes are located. This is good news...that there were no cancerous cells seen in the pathology of the tissues tested.
This was also consistent with the findings of my previous biopsy before Christmas. While the doc assumed that he didn't actually "get" the lymph node for biopsy then and required an additional removal and biopsy of the remaining "enlarged nodules", we now know that they were not lymph nodes that were enlarged. Rather, they were just benign tumors.
Usually, these types of tumors originate in the breast, arms, legs or back, so seeing them on the head kind of threw us all for a loop. The good thing is that the cells are benign in nature right now. If any additional tumors pop up, we will go back and have them removed. But barring some side issue of a newly formed heart murmur that needs a little bit of attention, I am healthy. That is such comforting news, as I don't exactly know how I would juggle Nate's appts and additional ones for me together.
In departing, I informed my doc that I knew that I needed to loose a few pounds but he shouldn't have called my tumors "fatty" also. I have loved messing with him. He's a good doctor with excellent bedside manner, and I am once again so thankful for the medical personnel God puts in our lives. A bit of advice I often tell others...having friendly relationships with the doctors who take care of your kids (and your own doctors) and learning a bit of personal information about them (talking about their family, kids, hometowns, etc) is always extremely helpful in this journey. It takes a bit of work and time to build bridges between the medical community and only takes a few words or actions to burn those bridges. Relationships are important. Doctors and nurses are people first. In witnessing so many rude comments and frustrations from adult patients toward our medical community over the past few months, it makes me want to mention this more now.
For some different info, yet still good news...Nathan trialed a conserving device today on his oxygen tanks and PASSED!! He was able to trigger the breaths on the conserving device and keep his sats up. His heart rate rose quite a bit (140-150) while he was walking around, but his sats stayed at 98 or above and his heart rate dropped once he rested some. So, we were able to keep the conserving device!!! This means that a smaller tank will last him a whole lot longer, depending on how many breaths a minute he is taking. We are also still trying to get our insurance to approve a refillable concentrator with M6 tanks (really small ones), so this is one step closer to him being able to be completely "free" while on tanks. Depending on how heavy they are, he could potentially carry a tank in a backpack on his back with this conserver...if we can get insurance approval for the refillable concentrator.
That would definitely make his and our lives easier at the moment. Not complaining here with our situation, but I know he would do so much better at a playground with oxygen on rather than our current solution of taking him off O2 for different circumstances, especially exercise or activity where we know that his sats drop some. But honestly, I am just ecstatic that he can use the conserver, as I had serious doubts that he would be able to trigger it.

All in all, it has been an amazing day. And we are so incredibly thankful.

Saturday, January 8, 2011

A medical recap and some more Christmas pictures

I went in for surgery yesterday morning, and it all went very well. They had originally planned to put me under general anesthesia with intubation since they assumed that I would have to be placed on my stomach for the procedure. However, I was delighted when they decided yesterday that they could do the surgery with me on my side, and just giving me propofol instead of general. Propofol equals quick wake up and recovery. General does not.

The doc said that the lymph node they removed looked normal under observation, meaning that nothing jumped out at them that would signify cancer. However, he sent it to have full lymphoma testing to make sure that nothing funky is going on with the strange behaving nodes. We should get the full results next week.

The recovery has been great. I'll take an excisional biopsy over a punch biopsy any day of the week now that I have had both. This one is much, much less painful.

We are once again so thankful and amazed at the kindness of our friends here. With family living so far away, we have had to rely on close friends to help us out in times of need...they have essentially become our "local family". So many of them have shuttled the girls to and from school, had them over for sleepovers and come and looked after Nathan during the times of doctor appts and tests. Some have brought us meals and offered up hugs and sincere prayers. We are so very thankful for these special people in our lives.

And before I forget, here are some more pictures from our Christmas trip to Kentucky. The kids LOVED all the snow we received over the 2 weeks there, but I have to say that I am glad to be back in the 60-70 degree temp range here at home. I love snow...once a year. :)

Wednesday, January 5, 2011

Wordlittle Wednesday: The milestone that doesn't make the baby book

Baby's first poop in the snow.

Monday, January 3, 2011

Kentucky...Parto Uno

It has taken 3 days, but we are nearly unpacked, cleaned up and rested from our 2 week adventure to the gorgeous state of Kentucky. It was a great trip! The kids ordered a good snowfall before we left, and they sure did receive lots and lots of snow at different times. They had numerous snowball fights, went sledding a couple of times, found out what it felt like when your hands get so cold that they go numb, bought rainboots because converse were not exactly the shoes equipped to handle snow, and stayed up way past their bedtime each and every night.Nate weathered the trip fairly well, minus that little blip right after we arrived. He did well the rest of the time and really perked up toward the end of the second week when we were at Jay's parents. The kids all loved playing with their cousins and spending special time with their grandparents, aunts and uncles.It was really a special time for all of us. Even though we stayed a good long while with each side of the family, it was still so hard to leave them. We enjoyed getting back home, but we really miss everyone. As the kids get older, these trips mean more to them and us.For the next few days, I'll post little pics from our trip. I took over 400 pictures and have edited over 100. I didn't want to miss a thing.My niece, Hailey, is doing very well! It was so good to see her, as it has been an entire year since we saw her last. If you remember, she had heart surgery about a year and a half ago. She is doing really, really well now. She is making progress on eating and not relying solely on her g-tube. She's walking everywhere and is talking up a storm with the sweetest little voice ever. She is a smart little booger, and I miss her precious smile terribly! I have had the wonderful privilege of being in contact with Hailey's geneticist at Kentucky Children's to give her info on Nathan's genetic problems in hope that it may shed light on finding a diagnosis for Hailey. While Nathan has more metabolic problems, Hailey has more genetic defects, but she does have a couple of metabolic flags. They are so very different...yet they are the same on some things. It's all very hard to figure out. Her geneticist is delightful, and it has been wonderful conversing with her. My littlest sister and I...for the record, I had the glasses LONG before she did. Great minds do indeed think alike! I wuvvvv her.
Pawpaw sang "Baby Bumblebee" to the girls countless times during this trip. I'm not too sad that I don't hear this a bajillion times a day anymore.
Next up...Kentucky Parto Doso

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