One-Of-A-Kind

What happens when a boy hopes that someday he'll marry a one-of-a-kind girl?  Joe gets a wife that has a cancer that no one in the world has ever had the same way.  Haha!  I am finally feeling up to spending a few minutes blogging again so I thought I'd share a little about my one-of-a-kind cancer.

Neuro-endocrine tumors are not unusual.  They are actually (and THANKFULLY!!!!!) one of the most responsive types of cancer to treatment.  But mine...mine is not normal.  Normally you would find a tumor (hence the name) and then see where it may have spread.  I however, have no tumor.  They cannot find one.  They've looked and looked and still no tumor.  My cancer is all in my bone marrow (not the normal place for this!).  Being in the bone marrow is what led to my initial diagnosis of leukemia.  But after test after test and scan after scan, they realized it was not leukemia but this other type of cancer...just not like it would normally be seen.

One of my doctors (I have so many, I don't have cool names for them yet), said he spent literally hours looking for another case like mine from anywhere in the world and could not find one.  The doctors are still searching for a tumor (looking everywhere!), but are treating me as though they have already found it. 

So that's what happens when a boy wishes for a very special girl someday.  Moral of the story...be careful what you wish for...heehee...JUST KIDDING!

While I was in the hospital I was pretty hopped up on drugs and I literally do not remember almost a whole week...but during that week I do remember insisting that Joe take the kids to the fire department Christmas party to see Santa (since it's such a small group).  Here's the kids with Santa...Thank you for taking them Joe!

Here's the News We Got Today

Since my appointment at the hematologists at 9:45 this morning the following news has spread like wildfire, so I figured I would at least let everyone know as much as we do.

I had a bone marrow biopsy done on Monday (super duper painful by the way!  Dr. A said I have unusually hard bones...ha!).  I have had a total of 3 blood draws (from Dr A's office) and each one showed my hemoglobin's, white blood cells & platelets dropping.  Then during today's blood draw the lab testing my bone marrow called and we were told my bone marrow has abnormal cancerous cells.

They haven't identified a type yet and are still running more tests.  So, Dr A sent me to the hospital right away for CT scans of my chest, abdomen & pelvis to look for tumors as a possible cause of the cancerous cells.  He already called back and said the scans were all normal.  The next plan of action is that Dr A already called the Cleveland Clinic and has referred me up there.  I'm just waiting for a call from them to set up a first appointment.

I am still optmistic that since they have yet to pin-point exactly what type of cancer it is, that it will be an easy one to beat, especially through faith & prayers!
I would definitely appreciate any prayers and lots of good thoughts.  Thanks everyone!

Taking Over For Me

While my back has been getting worse over the last few weeks, Joe has really stepped up and been the most amazing husband and father ever!  He does all the housework, all the meal planning, grocery shopping, laundry (even washed a load or two of cloth diapers!), cooking, takes care of the kids, arranges for other people to watch the kids while he's at work, and so much more!  He is hands down the best husband and father I could ever ask for!  I am truly thankful for him!

But on top of all that he has even stepped up in the photo department.  He knows how much I love to take pictures of the kids and it has been hard for me to do it while laid up on the couch, or zonked out from meds, so he has taken over in that area too.  It really means a lot to me that he has picked up the slack with my camera because I don't want to miss a thing!

I thought I'd share a few of the great pictures he has taken of Will lately (I'll post pics of Julianna on another day), so you too can see how great he's doing!

I love my hubby!

I Guess Its My Turn

Ok, well it seems as though Our Ordinary Stories is going to become a means to keep folks updated on medical issues once again.  But I guess this time its my turn to have the issues.  Most family & friends know that I have been dealing with some back issues for the last several months.  Since Thanksgiving, things have gone downhill extremely fast.  I am pretty much in severe pain all day long every day.  It's gotten to the point where I can't even take care of Will & Julianna (they have been spending a lot of time at grandparents and at Aunt Erin's).

Monday, my pain got to the point where we pushed really hard to get me in for an MRI.  I am just so tired of hurting all the time and wanted some answers.  On Thursday evening my doctor called me back with the results, and things have just snowballed in the last 36 hours.  I have degenerative disc disease (arthritis in my back I guess) and a herniated/bulging disc.  They said this could be causing me some discomfort, but should not be causing me all the pain I am feeling.  Even the strongest pain meds I could be prescribed wear off within 2-3 hours.  My doctor then went on to drop some unexpected news that then led to all this craziness.

Disclaimer: I do not know a lot of information right now and could totally be screwing things up, but this is what Joe & I were told today.  The MRI also showed that I have red marrow reconversion in my back.  The explanation we were given is that the bone marrow in my back (which should be yellow in adults-mostly fatty) has reconverted back to red (what it is in children).  This can happen for about 800 different reasons, but most the of the top causes are not good ones. 

So Joe went into his "get things done" mode and moved things along pretty quickly for us.  My doctor was kind of dragging her feet on doing much of anything until next week (since today was Friday), but Joe was great and today I got x-rays of my hips and legs (another area of extreme pain when my back is bad), I had a crud load of blood work drawn and next week I have appointments to see a back specialist about the disc issues and a hematologist/oncologist for the other issue...got the call this afternoon that that appointment will include a bone marrow biopsy...fun.

So needless to say, I'm freaking out just a little bit.  Some scary words were thrown around by my doctor (whom will most likely not be my doctor for much longer...she admitted she had to google some of what she was explaining to us! Seriously????)  I would love if everyone could say some extra prayers for me and for Joe, who is now doing ALL of our household/parenting responsibilities on his own in addition to working, and for my kiddos who are not all that happy with being shuffled around houses since mommy can't take care of them.

Thankful

What am I thankful for this year?  Is there anything to not be thankful for???  There's a list a mile long to be thankful for, but 2 of the highest on the list are my happy little man and my silly little girl.

Kiddo Haircuts

Both kiddos got haircuts today :o)  It was Will's first and Julianna's second.  Will just had some really really long hair on top of his head.  I mean, like 3 inches long just on top.  When he woke up this morning and I thought he looked like a little old man with a really bad comb over, I decided it was time for his first haircut.  He went to Daddy's barber just like a big kid.

Here's the before (check out the shagginess above his eyes)

Here's the after (just a little trimming on top & in front)

Julianna needed a much more in depth haircut.  The first time she got her hair cut, I did it in our living room and that was over a year ago.  Her hair was just starting to look shaggy no matter what I did with it, except for pigtails...which I will so dearly miss now :o(  I didn't think she'd sit for me to do it, so she made her first trip to a salon.

Here's her before (look how long her hair was!)

Here's her after (I think she looks so much older now!)

Both kiddos look so much better and now I won't hear Julianna crying every morning "No! No! Don't brush my hair Mommy! (Ha!  she'll probably still whine).

And just because I think its a super funny picture, here's another one of will :o)  And check out there's top teeth now!

Update on the Kiddos

Quick update...Will's cardiology appointment went really well...so well, that he doesn't need to go back until April!  All the concerns we've had recently Dr Awesome explained are not an uncommon thing when the weather turns colder.  He said we'll probably notice the color change and temperature change even more as it gets colder, but unless its accompanied by breathing issues, sleeping too much, or starts eating less then it isn't a major concern.  His blood pressures were good and so was his EKG.  YAY!

Julianna also got her custom "butterflies" today (aka braces).  They are not at all what I was picturing.  They are much bulkier than the ones we've been borrowing and are bright purple!  I wanted a fun color for her, but that was when I thought they were smaller.  There will be no missing these when she wears dresses, haha!  And I cannot find her shoes to wear with them!  All the shoes I find are way to narrow to fit the braces in.  Guess we'll be looking for some wide width shoes in the next few days.

All in all, today was a great day for my kiddos!  I am so appreciative of every one's prayers for both of them!  THANK YOU!

Awake

It's 5am and I am awake...ugh.  I have been awake since 3am thanks to a little man who hardly sleeps anymore, a back that just won't get better and quit hurting and anxiety over a cardiology check-up.

Will's last cardio appointment went really well.  So well, that he was taken off his last medication and we were moved to 8 week appointments instead of 6 week ones.  I am praying that today's appointment goes as well, but I am worried.  Yeah, I have the normal (can you call any of these feelings normal????) anxiety for just wanting a good report, but we also have some concerns since his last appointment with Dr Awesome.

Will hasn't ever been a "pink" baby.  He's always had a slightly blue tint to him, but unless you see him next to a "pink" kiddo, you don't really notice it.  When he would eat or get really tired, his hands and feet would get even more blue, almost purple.  But lately we've noticed a lot more blue.  Not just when he's eating or tired, but when we're holding him, or sometimes when he's sleeping, really just random times.

We've also noticed major differences in the temperature of his hands.  Where his coarc was (and still somewhat is), is after the blood flows to his right arm & head.  That was one of the reasons he had blood pressure differences (high in the right arm, low in the left arm and legs).  Lately his right hand & arm have been keeping very warm, but his left hand will be ice cold.  This is new.  We've never noticed temperature difference before in his hands.  This really worries me.

One of his still trouble spots is his aorta.  They were not able to completely repair his coarc and it hasn't been growing as well as it should.  It has grown, which is good, just not as much as it should have.  I am terrified that these new symptoms are a sign that his aorta hasn't grown enough.  Or that his coarc has recurred (about 20% of babies with a coarc repair have that happen).

So if y'all could say an extra prayer for him today, we would really appreciate it.  And now on a lighter note....he's some pics of the kiddos :o)

Isn't he looking so grown up!  I can't believe we have less than 5 months until he's a year old!  And you gotta love the puff stuck to his cheek...haha!

Julianna drew her pumpkin face again this year and we carved it, but she did an awesome job!  I love the crooked smile!  She is doing so well cognitively her teacher said she has run out of activities from school for her to do!!

Almost Wordless Wednesday: My ADORABLE kiddos!

And yes, that's how Julianna has decided to smile for pictures now....weirdo :o)

Pumpkin Patch

We started taking Julianna to a pumpkin patch her very first fall (pictures here).  It was kind of like our last hurrah before winter lockdown...haha.  We went back last year (pictures here), and we went again this year.  My back was really bothering me that weekend, but I was determined to go, so I popped a few of my "make my back feel better" pills and took a nap in the car on the way there...lol...I seriously fell asleep during the 10 minute drive from my parents to the farm.  Stupid pills.

Julianna had a blast this year and the weather was gorgeous!  86 degrees that day!  And there were 2 extra kiddos to take pictures of :o)

Nummy Nummy

Topic: Wordless

Neglected

I realize I have neglected this blog yet again, but it has been for several reasons.  I've been working hard on Spoons, Spades & Stitches...I've been getting some awesome reviews & giveaways lined up (if you aren't already a follower of SS&S, you should check it out!).  I have also been super duper busy.  Earlier this week we had a funeral to attend and I took both kids to mass for the first time by myself.  It went much better than I had expected...Will fell asleep about 15 minutes in and Julianna fell asleep on Aunt Erin's lap just after communion...ok, so I had some help.  And this week is full of doctor's appointments.  I had one yesterday, another today, Julianna had one today and Will has one on Friday...sheesh!

Julianna's appointment didn't go quite how we had expected, but I'm not sure how much of it I want to share yet (I know that's so unlike me!  I share everything!).  It was an emotionally taxing day.  but you know what makes everything better?  These kids!

This tutu is a hint for one of the giveaways this weekend on SS&S :o)

His foot had just been removed from his mouth...seriously it was in his mouth!

Whatcha Doin'?

She just looks so grown up anymore!

My First Award

I got my first blog award today :o)  Thank you so much to Liz from "From Chalkboards to Strollers"!  I was so excited that Liz chose me!

The rules for accepting the award:

1. Accept the award. Post it on your blog with the name of the person who has granted the award and his or her blog link.

2. Pay it forward to 15 other bloggers that you have newly discovered.

3. Contact those blog owners and let them know they've been chosen.

And here's my 15:

1. Melissa from "These are the Stories that will Write our Book"
2. Abbie from "The Craziness That is my Life"
3. Danielle from "The Happenings of the Harper Household"
4. Jennifer from "The Martin Family Blog"
5. Mallory from "Diamonds & Pearls"
6. Heather from "3 Under 3"
7. Shannon from "Webbisodes"
8. Tracy from "Hall of Fame Moms"
9. Amy from "Life with the Wahls"
10. Kelly from "Miller Times"
11. Mama Hen from "Mama's Little Chick"
12. Jill from "Meet the Dubiens"
13. Melanie from "Going Green with Noah"
14. Beverly from "The L Family Blog"
15. Jackie from "3 Little Ones"

Some of these blogs I follow from here and some I follow from Spoons, Spades & Stitches...but they are all awesome blogs!

Treats

Today was Trick-or-Treating at our campground.  Yes, it's early, but the campground really has nothing to offer come the end of October.  Julianna totally got the concept this year.  Instead of "trick or treat" she would say "please", take her peice of candy & then say "thank you".  It was too cute!

My little pirate

And check out Will with his Grandpa Snyder...William Joseph & William Joseph.

Julianna-isms

Julianna can say the most unusual and seriously funny things.  So today, it's all about my toddler's talk...and I'm totally writing it just how it sounds, so good luck reading it!

"inna"
I wanna go inna da house.  I put it inna da tawset.  William (oh yes, she calls him William) go inna his tarseat.

Oh mommy you so siyee.  You mate me laugh youd youd youd.

I tolor with my chotolate chip crayon.

I a bid girl.  No more do do Dora's.

Mommy you hair is metty metty metty. (gotta love the honesty)

I hummy...please I have em ems? (a no from mommy) Please I have chotolate chip? (another no from mommy) Please I have sayad? (seriously, her next question...a big YES from mommy!)

I love my little girl and I love how well she is communicating now!  She has exceded her age vocabulary wise, but we're still working on clarity.  She's such a talker!

A Confession

I totally still have "when I grow up" dreams for myself.  I know it may be silly, but I still have my list of all the things I want to be/do when I grow up.  My list doesn't seem to be getting any shorter and in fact seems to be getting longer almost every day!

Every time I see something I love I think "Hey, I can do that!" and it gets added to my list.  So what are some current things on my list of "when I grow up"?

• I want to open another Etsy shop and make things I love...baby stuff...girlie stuff...boy stuff...anything!
• I want to be an awesome photographer...guess I should start learning how to use my camera better.
• I want to go back to teaching...but not to the kids...heehee.
• I want to be a world traveler...does Canada & Mexico count?
• I want to be fantastic chef...you know the kind that doesn't make dinner from the freezer...and no, I don't do it very often.
• I want to be a cake baker...I am a sucker for gorgeous cakes!
• I want to work with babies...everyone's a sucker for babies!
• I want to be an artist...art supplies make me want to be creative, but totally intimidate me and make me feel pressured to be creative.

I feel just like a kindergartner telling her teacher what she wants to be "when she grows up".  But what tops my list is...I want to be an awesome mom...always working on this one.

Do you have a confession?  It can be big or small...add it to our list!

Lovin' the Grandparents

My kids love going to their grandparents' houses and thank goodness too!They have to spend quite a bit of time with them sometimes.  This past weekend I had some sciatica issues and ended up on some pretty strong meds (knocked me out in 15 minutes!).  So the kids got to spend time with their grandparents.  Sunday I went with the kids to my parents house.  Julianna loves grandpa's grapes!

Will doesn't get quite so excited.

And neither one was a fan of the scarecrow.

Yesterday, they got to spend the day with Joe's mom & dad.  Julianna gets very excited to go to Grandma's house (both grandparents' houses are Grandma's house...grandpa's apparently don't count...lol).  Julianna cried when they left our house because she wanted a "jamma party" at grandma's house.  I love how close my kids are to their grandparents!

Butterflies & Cereal

Yesterday, Julianna & I went to a botanical garden & butterfly house.  She had so much fun.

She walked around the butterfly house with their brochure and would look at it and then look around, just like a little scientist looking for a specific species.

Emma & Ellie got to experience butterflies right on their heads.

The kids all loved going on the short trail walk afterwards.

Then yesterday evening, Will got his first taste of rice cereal.  I put off starting cereal longer than I did with Julianna by about a month or so, and I'm glad I did!  He was much less messy than she was.  The cereal actually all stayed in his mouth!

I don't think he really liked it though...haha!

Big sister Julianna of course had to help and she did wonderful!

Fairs & Mohawks

Yesterday, we took Julianna to the county fair (it was free admissions before noon!). 

We thought she would love all the animals.  We were wrong.  She could have cared less about any of the animals.  Correction...she could have cared less about any of the live animals.  She LOVED the carousel horses.  Haha!  I knew we wouldn't be able to get away with not letting her ride the horsies.  She loved riding all of the other rides just as much. 

She had even more fun once her cousins got there and Ian rode with her.

Will didn't go with us, instead he enjoyed the AC with his Grandma K & cousin Mia (it was so stinkin' hot yesterday).  On a completely unrelated note (hey, it's my blog I can jump topics whenever I want), Will seems to only be growing hair on the very top of his head.  We laugh and call it his military haircut.  But the other night he told me...remember we have great conversations...he wanted to look a little more rock.  I obliged and this was the result...

He was totally rockin' a baby mohawk!  The funniest part was that I did this while it was wet and it stayed that way overnight and all day the next day!

Julianna's Special Doctor

Julianna saw her neurologist, Dr A, today.  It's been a year since she saw him last!  We spent last night & this morning talking up her "special doctor".  She got really excited when we told her Will had a special doctor too.  She likes anything that makes her and Will similar.  She did so well!  She stood on the scale and under the height measurement all by herself.  She even let them take her blood pressure with just a tiny wince at the beginning. 

Overall Dr A was pleased.  Her muscle tone is good, as are her reflexes, and her quick neuro exam was good.  He agreed that she needs braces on both her ankles and wrote us a prescription to get our own pair (we're still borrowing from her therapist...although she has much cuter ones now!  They have flowers all over them.). 

After watching her walk & run, he decided she needs a podiatry consult.  In addition to her ankles rolling in, he noticed her knees tend to be close together when walking or running and that her left foot turns out (this is what causes her adorable booty shaking run...seriously, if it wasn't bad for her, it really is adorable!).  She'll see Dr. B on the 29th for the consult.  Dr. A thinks she may need a different type of brace or other intervention to correct her foot.

Our next doctor appointment will be for Will on Tuesday.  He'll see Dr Awesome and have another echo...praying it shows improvement and the word "cath" isn't even mentioned!

Jump Baby Jump!

My little mister has finally learned just how to operate his jumperoo...and he LOVES it!

And the New Winner is...

Sadly, one of the Skoy cloth winners did not contact me, so I chose a new winner this morning!

Congratulations Marah!

Marah said: The SKOY cloth has an absorption factor of 15x its own weight.  AMAZING!

**Marah, you need to email me with your full name & address by 11:59pm on August 29.  If I do not get an email from you by then, a new winner will be drawn.**

Thanks again to everyone who entered! And remember all future reviews & giveaways will be hosted at Spoons, Spades & Stitches! Become a follower over there, so you don't miss out!  You can also become a fan on Facebook!

One Little Pearly White Tooth

Until 2 days ago I didn't even know Will was teething.  Sure, he drooled a lot...but babies drool.  On Tuesday morning a tooth was discovered.  One little pearly white tooth.  Since then, I know he's teething.  He has a second tooth just below the surface and this one must be giving him more trouble because he looks like this...

...and this...

So, I do what any mommy would do...I pop in a teething tablet...ah, relief...now he looks like this...

...and this...

...and even this...

Do you see his tiny tooth on the bottom?  If you haven't tried teething tablets yet...you totally should!

(They're all natural by the way.)