A New Year's Resolution

A New Year is almost upon us.

Have you given thought to your New Year Resolutions?

Were you successful in your last resolution?

I swore I was going to loose weight and get healthy.

I was doing great until a load of flare ups and worsening symptoms.

This year will be different.

Why?

Because my resolution is different.

I'm not hoping to loose a ton of weight and get skinny.

I'm not even hoping to give something up.

We, as a human race,

set ourselves up for failure.

Most of us anyway.

This year I'm not setting goals that are unreasonable or unreachable.

All I want for the New Year is to survive.

That's the simple way of putting it.

This past year...

Well year and almost 3 months,

have been difficult.

We (my doctor and I) spent 8 months trying to figure out what was wrong with me.

Why I was in so much pain all the time.

Finally he decided that it had to be Fibromyalgia.

We had done scans,

X-rays,

blood work galore,

and nothing popped up.

I even did physical therapy.

He finally started treating me for Fibromyalgia.

The meds helped but didn't make any huge difference.

Most days I couldn't even tell if they worked at all.

He said that I probably had this for years but it went undiagnossed,

He was probably right since I've been in pain for years but too busy taking care of my son's medical needs to worry about my own.

But I questioned him anyway.

He said it was a flare up.

A flare up that lasted over 8 months?

A flare up that a year and almost 3 month later am still undergoing?

In June he left the clinic and I started seeing another doctor.

One who agreed with the Fibromyalgia diagnosis.

Until I started getting more and more symptoms of Lupus.

I've been tested for Lupus 3 times now.

Have had 1 positive and 2 negative tests results.

A neck X-ray that shows that the degenerative disk disease in two disks in my neck have gotten worse since June.

The doctor says someone my age shouldn't be this bad.

Now we're waiting on CT scans of my brain.

There's something more than Fibromyalgia going on.

What it is,

we aren't sure of yet.

My doctor and one he consulted feel it could be a brain tumor.

That's the reason for the CT.

We just don't know yet.

So you see why one of my New Years resolutions are to survive.

I want less pain,

Less flare ups.

Or at least a way to cope with them better.

I don't want to be stuck in bed,

unable to participate in everyday things like playing with my kids.

I don't want to miss out on more than I already have.

I want to get more active because I feel it could help.

I want to find more energy and stamina.

I need to get myself up and moving.

What I want most of all though,

is to find out what is causing all this pain.

That's it.

It's that simple.

Recipe: Fast and Friendly Turkey Meatballs

Ingredients:

2 tablespoons olive oil

1 (20 0z) package ground turkey

1 egg, beaten

1/3 cup Italian seasoned bread crumbs

1 small onion chopped

Directions:

Preheat oven to 350 degrees F.

Grease a 9x13 inch baking dish with the olive oil and place it in the oven while preheating.

In a medium bowl, mix together the ground turkey, egg, and bread crumbs using your hands.

Using an ice cream scoop if possible, form the meat into golf ball sized balls.

Place about 1 inch apart into the hot baking pan.

Press down to flatten the bottom just slightly.

Bake for 15 minutes in the preheated oven, then turn them over and continue to bake for about 5 minutes or until somewhat crispy on the outside.

Serve with pasta or any other dish.

Recipe: Incredibly Cheesy Turkey Meatloaf

          A few years ago we ingrained ground turkey meat into our regular meals. It started with just making ground turkey burger patties and escalated from there. Over time we started using ground hamburger meat less and less until we cut it out completely. We love that ground turkey isn't fatty or greasy and it taste better than ground hamburger meat to us. 

          We now use ground turkey in everything. Chili, meatloaf, meatballs, tacos, name it and we've probably used ground turkey. I feel like I keep making the same foods over and over again and I feel it's time to add some pizazz to our meals. Before today I never thought to look up recipes. I just made the meals the same way I use to except I substituted with the ground turkey. 

          Here's a recipe I found today for Incredibly Cheesy Turkey meatloaf and it looks amazing.

Ingredients:

2 lbs ground turkey

1 cup milk

1 cup Italian seasoned bread crumbs

2 eggs

1 teaspoon salt

1/4 pound colby cheese, cut into 1/2" cubes

1/2 cup ketchup (optional)

Directions:

1) Preheat oven to 400 degrees F

2) In a bowl mix the turkey, bread crumbs and eggs by hand. Season with salt and pepper. Fold the cheese cubes into the mixture. Transfer to a loaf pan and top with ketchup.

3) Bake for 1 hour in a preheated oven, to an internal temperature of 180 degrees F

Now I don't normally use ketchup on my meatloaf. I like to make gravy and drizzle it over my mashes potatoes and meatloaf. I've also made this with soy sauce and served with white rice.

          

Recipe: Chocolate Chip Cookies

          I've always loved chocolate chip cookies. I love them fresh from the oven, chewy and soft. They have to taste good too. I've had some very bad and disappointing cookies in my time. Sometimes I like to use Betty Crocker's mix in a bag. You can find it in the baking aisle. I also love to make them from scratch. Here's a great recipe for from scratch chocolate chip cookies.

Ingredients:

• 2 1/4 cups all-purpose flour
• 1/2 teaspoon baking soda
• 1 cup (2 sticks) unsalted butter, room temperature
• 1/2 cup granulated sugar
• 1 cup packed light-brown sugar
• 1 teaspoon salt
• 2 teaspoons pure vanilla extract
• 2 large eggs
• 2 cups (about 12 ounces) semisweet and/or milk chocolate chips

Directions:

Preheat oven to 350 degrees. In a small bowl, whisk together the flour and baking soda; set aside. In the bowl of an electric mixer fitted with the paddle attachment, combine the butter with both sugars; beat on medium speed until light and fluffy. Reduce speed to low; add the salt, vanilla, and eggs. Beat until well mixed, about 1 minute. Add flour mixture; mix until just combined. Stir in the chocolate chips.

Drop heaping tablespoon-size balls of dough about 2 inches apart on baking sheets lined with parchment paper.

Bake until cookies are golden around the edges, but still soft in the center, 8 to 10 minutes. Remove from oven, and let cool on baking sheet 1 to 2 minutes. Transfer to a wire rack, and let cool completely. Store cookies in an airtight container at room temperature up to 1 week.

Routine

My biggest problem of today is running out of closet space in this tiny closet and still having more I'd rather hang than fold. Thank you God for the simple things, for making every day better than the last and giving more days. 

There was a time when things were so bad when I had to constantly worry about Liam's health, his lungs, tons of appointments and had to keep a bag packed and ready to go for a hospital stay because we never knew when the time would come when we'd have to rush off to Children's. 

A time when I had to have an entire weeks worth of "spare" clothes that stayed packed 24-7. When I had to have extra toothbrushes and toiletries. A time when all electronic I would use while at the hospital would be charged frequently, and placed back into my backpack as soon as I was done using them along with their power cords because staying in touch with Family and friends while there kept be tethered to real life. Got me through hard lonely times. 

Truth be told, I have a toiletry bag in the bathroom ready to go. My suitcase never out of reach and I know my closet and dresser better than the back of my hand. I may not have to keep that bag packed and ready to go anymore, but I know that without a doubt that I can pack enough for Liam and I in less than 15 min and be out that door. Yes, I am that good. 

But it's not about being that good. It's about the years of doing this that I just can't stray from. It's still just too new to have just long periods of time between emergency hospital runs.

I'm a creature of habit. Habit is what gets me out of bed in the morning like a robot. When a wrench is thrown Into my habits, I have...complications. I always thought I was a go with the wind kinda person. I was at one point. I thrived on spontaneous actions. That was all before Liam. I'm not spontaneous anymore. I fear doing something spontaneous will lead to forgetting something vitally important. Forgetting something vitally important will lead to serious consequences. 

I may not keep my bag packed anymore, but if you look hard at my stuff, you can pinpoint exactly where it is I will rushedly grab things in the case of an emergency hospital run. 

My days are filled with meds, tube feeds, fighting a toddler to eat more, laughs, silliness, and what some would call boredom. But it's my routine. This is what I do and who I am now. 

So if my biggest problem of the day, after all I've been through is not enough closet space...I'll take it and run. 

It's Not About Santa, It's About Jesus

(Pictured above is Santa kneeling beside baby Jesus, apologizing and asking Jesus for his forgiveness because he didn't mean to "replace" or over power Jesus and the true meaning of Christmas)

Getting ready to clean the house and I look under the tree at the presents and think

"Why?"

We get carried away when shopping for The kids for Christmas. All we think of is how their faces will light up and the squeals that will insue when they open the presents Christmas morning. 

We get excited at the thought and it drives us to go overboard. We don't think about all the time we will spend trying to get the kids to pick up their toys and clean their rooms. We don't think about the pain or the explitives that will come pouring out of our mouths when we step on tiny peices of toys that were forgotten until that very moment. 

And then we ask ourselves if we are teaching our children right. 

Do the presents and Santa over power and mask the true meaning of Christmas? 

Do they realize the importance of this day?

Do they realize that, like the song from the church play Lanie participated in, you can't have Christmas without Jesus and you can't have Christmas without the cross?

I think Lanie is starting to understand but is it enough? Will she ever know truely? What can I do to help? 

We're guilty of not going to church often enough. Of not showing our children the way soon enough. We are guilty of making excuses. 

In the last 6 months to a year, we've (I've) been trying to change that. I've encouraged Lanie to get more involved in church by participating in the kids programs and making friends who also go to church. I find when you have someone whome you share interest with, like God band church, then you get more involved with those activities because you have someone at your side. It's a start to changing and atoning for the lack of God and worship in the past.

We've always believed in God and taught our kids about all God has done for us but it wasn't enough. Not if presents and Santa ovetbear and mask the true meaning of Christmas. 

We can't forget to teach our children the story of when Jesus was born. Or to remind them what He did for us all. 

(Pictured above is Elfie our Elf on the Shelf wrapped in Santa paper with a book he brought the kids from the North Pole and Santa about the Story of Jesus). 

'Just before Jesus went up to Heaven, he appeared to his disciples and told them to travel to faraway places and teach people to obey his words. "And I will be with you always." Promised Jesus, "until the end of the world."'

(From 'The Story Of Jesus' by Jane Werner Watson, written in a way children can understand Jesus's, birth, life, death, rebirth and love for all)

My NICU PTSD Experience

PTSD doesn't just effect those who've been to war or in the military. We learned the hard way that it effects families of those whose children are born sick and spend time in the NICU watching their baby struggle and almost loose the battle. When I was first told by a NICU nurse that she thought I had PTSD I was confused and asked why she thought that. After talking to her extensively about it, it became painfully true. And even more painfully true as my doctor back home diagnosed me with it as well. It was hell. Reliving the heartbreaking tragic moments over and over again. Flash backs and nightmares. The crying and freak outs. I never knew when I would have an "episode". I am thankful that 3 1/2 years after Liam was born that I haven't had an "episode" in a while and the last few nightmares I had I was able to get through and not let the feelings linger. In a way I feel blessed to have gone through this journey because it has only made me and my family stronger and now we get to concentrate on the present and making up for lost time. We try to enjoy each day for what it is. God gave us a little boy that can overcome anything and a little girl who has learned to overcome anything in her path and loves with all her heart. We could have walked away from this sad and miserable but we choose not too because life is too short. We choose not to let the bad take away the good. The first year was the hardest. The second came real close. His third year has been a complete different experience and for that we have to be thankful. If you aren't thankful for what you have then you don't deserve to have it. I won't say that I'm 100% PTSD free. I don't think I will ever be. But it's manageable and will get better with time. Maybe it's Gods way of reminding me that sometimes you have to have nothing to have everything. When I was on my knees (well stuck in bed after an csection) I ran to God. I prayed, begged and pleaded for Liam to survive. I confided in him and told him that I truely didn't think I was strong enough to go on without my baby boy. It was the weakest I've ever felt in my entire life. Everything about NICU seemed like my own personal hell. The first week was difficult to say the least. I couldn't take anything good from the experience. All I saw was hell. All I did was pray. The beeping of the machines. The alarms going off telling us something was wrong. The tubes, wires, all overwhelmed my tiny little boy laying on the bed. On many occasions I was pushed out of the way so that they could help him. I didn't mind being pushed. I got out of their way as fast as I could knowing that his life was in their hands, and Gods. Day in and day out, I sat there alone listening to the beeping. When the day came for his repair surgery, I sat there alone, not knowing if he would make it through the procedure or the critical days to follow. I can't say I processed things properly. I don't even think there's a proper way to process it but I did the best I could. I'm happy and blessed to be in a much better place mentally now than I was then. I reach out to other parents who've gone through this or are going through this and help them in any way I can. It's my way of overcoming and making sure no one goes through this alone like I did. It's a rough road and you come out with scars but you can survive. 

Live Reindeer Feed With Santa and Elves

          Yesterday I volunteered in Lanie's class at the end of the day for their "Christmas Party". Her teacher had a Live feed of Santa's reindeer on the big screen for the kids. We're talking real life reindeer. Not the animated stuff. The kids loved it. Every now and again a computer generated elf would pop up on the screen and the kids would laugh until they were doubled over.
          I made sure to get the website from her so that I could check in on them and show Liam. Last night I logged in so that Liam could see. He thought it was the coolest thing ever. "Santa's reindeer! WOW! Cool!". Yes it was, but that wasn't the coolest part. Not two minutes after we started watching, a real elf came on the screen and started talking to the reindeer over the fence. You can imagine how much these two kids freaked out.
          I'd say that was the coolest thing, but it wasn't. Not 5 minutes after we started watching guess to else made an appearance? Santa!! The kids were thrilled, squiling and yelling in utter delight. We watched as Santa fed the two male reindeer then proceeded to pet them and talk to them. After he checked his mailbox. Now my internet was bogging down so we weren't the best of the feed, but it looked and sounded like Santa read a letter from someone. It was awesome.

          Just when we thought he was done, he got a chair and took a book out of the mailbox and read a Christmas story to everyone. My kids enjoyed listening to Santa's story (even if my internet was slow). After Santa read the story he told everyone to be good, and for all the kids to say their prayers before bedtime. That right there folks, that had me hooked. In this day and age, religion is being taken out of just about everything, but not this Santa. Nope. He's standing up for his beliefs and I love that my kids were able to hear Santa, someone they look up too, say that he too believes in God.
          Santa will be making another appearance tonight at 6pm, and my kids are excited. You can tune in as well and share the magic of Santa and his reindeer with your little ones http://reindeercam.com I won't be taking Liam to the mall to see Santa. I'm still weary of taking into crowded places for fear that he might catch some virus and have another setback. I was sad that I didn't feel comfortable enough to do this and that he was going to miss out. This is the first year he's really seemed interested in Santa. They must have been learning about Santa as school because Liam gets all excited when someone says Santa or he sees something with Santa on it. That made me sadder. However finding Reindeer Cam has allowed us to keep the magic of Santa and his reindeer going for the kids.
 

        I had made magic reindeer food and handed it out to the kids in Lanie's class as well as a few of her friends from other classes. It's just oatmeal and glitter but it brought the kids so much joy thinking that they can leave out a treat for Santa's reindeer. After watching this feed, they were even more excited to see who they were leaving the treat out for. I am thankful that the people behind Reindeer Cam are doing what they are doing to help share the Christmas magic that so many have lost. 

Christmas In The Heart

It is Christmas in the heart that puts Christmas in the air -W.T. Ellis

Only 11 days until Christmas.

Our tree is up.

Presents are wrapped and placed under the tree.

The house lit up at night like a gingerbread house.

The stockings are hung.

Elfie is in full swing with tricks and treats.

It's Christmas.

Today the the church kids preformed the musical play they've been working on.

It was Lanie's first play.

I'm not going to lie,

she rocked it!

She had no fear.

Only confidence.

The play went off without a hitch.

Well maybe a few hitches but no one noticed,

The congregation clapped and cheered them on.

They got a standing ovation.

I am so proud of them all.

There's only one week left before Christmas break.

Then the fun begins.

Sleeping in (yea right!)

Everyday will be pajama movie day (I'm laughing hard because yea right)

The kids will be perfectly content and well behaved for some Christmas crafts fun (where's my laughing until I cry emoji when I need it?!)

It'll be great.

Hey at least we'll try <3 p="">

You Deserve More

Dear Liam,

Lover of the rain,

Master of the smile,

Little Boy who finds joy in the world,

When others see it dark and bleak.

You deserve more than days filled with breathing treatments and meds.

You've given the world more than it will ever give you.

You brighten the world.

You see beauty and wonder.

The world should take lessons from you on how to see the world.

My precious 3 year old,

you've missed out on so much of life already.

You've never had a "normal" childhood,

but you've never complained.

I love the little boy you have become,

and always want the best for you.

I pray you never loose your love of life.

I pray your days get better with each one passing.

Crazy Morning

This morning has been crazy. 

*Justin took Lanie to school for me.

*I got Liam ready for school but couldn't find his jacket anywhere. I've been looking for it for a week now. It was the one from last year and in pretty sure I did not get rid of it. So he went to school in a sweatshirt and beanie 😔

*I drove across town to FHCN after I dropped off Liam. I was standing in line to check in for my X-ray when my phone rang. It was Liam's school. 

*I had to leave FHCN before I could get my X-ray and drive back across town to pick Liam up. His gtube was bothering him and he kept bending over, holding his tummy saying "owie owie". 

*Turns out his tube had leaked because I had given him a bolus before school because I had to turn off his feed in the middle of the night. And the wetness was causing irritation. 

*My phone rang again as I was pulling into Liam's school. Your looking at WG new PTA Secretary. 

*Walked into Liam's class and he was painting a pine cone. We waited till he was done before leaving. He told me his tummy had owies and he wanted to go bye bye. 

*I had to take Liam with me to go look for a coat for him. Rescued Treasures had nothing so we went to Twice Upon A Time. Scored a new looking, thick reversible jacket for only $7 w/ tax. 

*I then dragged Liam back to FHCN with me so I could get my X-ray done. 

*luckily I got called back almost immediately. Liam had to sit outside the room with a staff member while they took like 6 different X-rays of my neck in various poses. (I bet it would have been hilarious to see me standing there with my jaw open as wide as possible for an X-ray 😮😂) Liam did very well with the staff. He sat in the chair quietly and waited. They have him two Thomas the train stickers. 

*after we came home. We put his new stickers on some paper and hung it on his wall. He was thrilled lol. Now he's watching Thomas the train and I need to clean his gtube site again and clean the house because this afternoon will be even crazier with a birthday party and church.  

Finding Strength In Faith

Today isn't one of my best days. Unfortunately it seems like I'm doing worse with each passing day. It's ok though. I survived last years horrible flare so I'm sure I'll survive this too. It got to where I couldn't hardly walk last year so at least this year I'm still walking lol. The way I see it, I can either wallow in my own self pity and make the situation worse or I can rise above it and try to overcome it. 

No I'm not happy about being in constant pain. I'm not happy that I'm loosing control of my hands. I'm not happy I have muscle spasm, headaches and can hardly stay awake. But this is life. Life isn't perfect and neither am I. In our imperfections we find strength and beauty, a will to go one when others would have quite. There's no quitting. That word doesn't exsist in my vocabulary. 

I spend every day praying and wishing I would feel better so I can be a better mom with my kids. While most Christmas lists are full of material things, mines filled with things money can't buy. 

1) I want to be healthy and pain free.

2) I want Liam to continue to progress with his health. I want him hospital free and eventually tube free and thriving. I want him to be happy. 

3) I want happiness and strength for Lanie. I want her to stay healthy and know I love her always. 

4) I want Justin to know that even at our worst, I always and will always love him. I want his anxiety to go away because it's holding him back. 

I should rest more and take it easy when my body says so. Instead I'm pushing myself just so I can be there for my kids. So web can enjoy simple things like making crafts and playing with cars and watching movies. Lanie notices I don't have the energy I used too. I live off caffeine because I am always exhausted no matter how much sleep I get. But we will get through this because thats what we do, we survive. 

I have faith in God and that he has a plan. I can't loose faith, I can't let whatever this is win. I wake up each morning and see the smiling faces of my kids and know that no matter how painful, this day will be good. 

A Future Unknown

          I can't deny that I'm scared. I'm the kind of person who needs to know what the future holds. What to expect so I can prepare for it. My future still stands on a balance beam. My future is unknown. The unknown scares the utter baloogas out of me. We know I have fibromyalgia. There's no cure, just a lifetime of constant pain, and flare ups that have me stuck in bed. But there's more.

          Yesterday I wen't to the doctor. I went expecting a med change. There's a back story to this:

          I went to the doctor a few weeks ago after I had strep throat. I didn't seem like I was getting any better. When I went he discovered that I had a sinus infection as well. I was given Zyrtec for my allergies and Flonase for my nasal symptoms. I had explained to him that when I was on Prednisone (oral steriod) for three days that I had no pain (with the exception of my  throat). He said that if the Flonase helped my pain to go back and see him and we can add an oral steriod to my meds.

          Those that know me really well know that I hate taking meds. Even your basic tylenol or vitamin. I know that I didn't like taking them before Liam came along, but after his birth and all the meds he's had to be on that it intensified my dislike for meds. I've been hating to have to take the meds for my fibromyalgia. The last thing I wanted to do was add another med into the mix. But I'm desperate for relief. 

          So I went into my appointment just expecting him to add an oral steroid to my med mix. What really happened was far from expected. I told him about my hands. How they've been hurting really bad and how I'm loosing strength and drop things all the time. I explained how once again my feet are getting worse. I let him know that my memory is getting worse. I can be talking and all of a sudden I'll stop. I'll either forget what I was saying or I'll not even remember I was talking. It's very frustrating for my family. I can walk into a room and forget what I was doing or going to do. I forget how I got from point a to point b. 

          My doctor asked about headaches. I was a bit annoyed because we had gone over this in the past. I have chronic constant headaches. They get worse to a migraine, then lighten up to livable but I'm never headache free. We talked about my eye sight and how it's getting blurrier. They did an eye exam and I have 20/30 vision. Not bad at all. I just have to concentrate really hard to make out the letters. I explained how my sensitivity to light has gotten worse. How the light hurts my eyes and causes pain as well as rashes and makes me sick to my stomach. I explained that the rashes I was getting just on my face are now getting worse. Not only to I break out in one more often (several times a day) but that its spreading from just my face/ears, to now my chest as well. 

          After talking he decided it was best to go consult another doctor. He felt we were dealing with more than one medical issue. After consulting the other doctor he came back in the room. He ordered a bunch of blood work and test as well as referals to nurology and rhuematology. He ordered blood work to test vit D, B1, B12, kidney function, infection, cancer and again Lupus. The Lupus test is apparently different from the last two they ran. He ordered an MRI of my neck as well as a CT of my brain. He wants rhuematology to see me because he really feels like I have Lupus. He wants nurology to see me because he feels that I have something wrong in my brain.

          What it all boils down to is that both my doctor and the one he consulted feels like I have two more medical issues besides fibromyalgia. They feel I have Lupus as well as a brain tumor. He explained that some symptoms are screaming Lupus (rash, whole body swelling and pain and sensitivity to light and more) and other scream brain tumor (numbness, tingling, loss of strength, constant headaches that even the "miracle" migraine meds don't help, eye sight, memory). He said that it's really the only things that make sense. 

          After dropping this atomic bomb on me, he said that adding a new med to the mix would not be smart. He feels we need to at least get the blood work back before doing anything. I was devastated. Not only does Lupus keep coming up but now a brain tumor! And cancer?? So to deny being scared would be a waste of time because I am very much scared. I have a family to think about. Two small children that need me to be healthy and at  my best to love them and care for them. I can't be down. I just can't. It breaks my heart to even think about this.

          I keep getting asked what I want for Christmas. There are only a few things on my list and it's nothing money can buy:

          *For Liam to be healthy, strong and happy.

          *For Lanie to stay healthy, stay happy and grow up to be a strong, smart, young woman.

          *For Justin to know how much I love him, and for his to be rid of his anxiety issues that are holding him back from being the best he can be.

          *For me to be healthy and pain free.

          Money can't buy happiness. Money can't buy back time lost with your loved ones. I can only sit here and wait, and pray that the best outcome possible happens. That they find out whats wrong with me and fix it. And pray that I have many many many more years with my family. I don't know if it's the increase of my ampitripaline the doc did or not but I feel calm and resolved. Whatever happens is going to happen no matter how hard I fight it. That's why I'm praying. God has given us miracle with Liam's health and I have faith he will do the same for me.

          If you could find it in your heart, please keep us in your prayers. 

-Aubin