Diary of a Brain Tumor - A Series of Miracles.......

>> Wednesday, June 29, 2016

Have you seen the movie, "Miracles from Heaven"?  I went earlier this spring to see it with a dear friend of mine....and then a week later, I took Nani to see it.  (Looking back, I'd say that was probably a bit prophetic, wouldn't you?)
 
At the end, the mom talks about how miracles are all around us.....they are not just big or small, but they are in the every day moments.  And once things settled down, and I looked back, I could see all the signs.....a series of miracles that led us to where we are with Nani today.



* Not taking her into the ER earlier.  My initial thought, coming home from church, was to take her to the ER immediately.  My Marine suggested we wait a little bit, which ended up being a good thing.  Nani had started to feel better by early afternoon.  If we had taken her, she would have been feeling better and they may have just sent us home with meds which would have masked her pain.....the pain that signaled that the tumor burst and was building pressure.  We could have lost Nani that night, at home.

The severe pain.  When Nani started experiencing severe pain, that was when the tumor burst and started to bleed.  It's hard to fathom being thankful for something that causes you to scream in pain, but this is what prompted us to get to the ER when we did.

The doctor in the ER quickly switching her decision from giving a spinal tap to getting a CT scan.  We found out later that everything was all laid out for the spinal tap, but the doctor, at the last minute, had a gut feeling and ordered an immediate CT scan.  If we had gone on with the spinal tap, it would have cost us precious minutes....even seconds....in getting Nani to Children's Hospital.

The storm.  All evening long, while we were in the ER, there was no rain, no storms.  Nothing.  Once they loaded her into the helicopter, we were hit with a terrible lightening storm.  This wasn't the pretty flashes of lightening in the clouds either.  We're talking cloud to ground lightening bolts, heavy rain and winds.  As someone who flies on helicopters, My Marine kept trying to tell me it would be ok.....but I knew.  He's told me many times that they don't fly in that kind of weather....period.  It's just too dangerous.  But as we got closer to the hospital, My Marine saw the strobe on the landing pad and knew they were there.  I am convinced that it was the Hands of God that got them there.  He wrapped His Hands around that helicopter and guided them there.....safely.

*Surviving the beginning of surgery.  Nani was not supposed to survive that surgery.  Period.  They did not expect a good outcome.  Not only did she survive the initial part of the surgery to relieve the pressure, but she remained stable.  Stable enough for them to go in and remove the majority of the tumor.  They would not need to go back in at another time and perform another surgery.

*Waking up and recovery.  When he came to see us after the surgery was over, Dr. Hankinson prepared us for the fact that Nani would not wake up until at least mid-week and that she might have some neurological deficits.  When finally went back to see her, they told us that she woke up in the CT scanner -- 30 MINUTES AFTER SURGERY!   She fully woke up, kicking & fighting, an hour later....both terrified and fighting mad.  Her medical team was amazed.  From that moment on, she achieved and surpassed recovery milestones days before she was supposed to.

 
*Support.  From the time this nightmare started, we were never alone.  From my Army sister, "V" driving in the middle of the night to pick up Nudgie at the ER, to my MOPS sister, "T" who brought me Starbucks at the crack of dawn, to the barista at that very Starbucks who still made the coffee for me when they weren't even open yet, to my other Army sister, "L" who came later that day with a bag of snacks.  To CH Dave who dropped everything to be at the hospital with us that morning....to making phone calls to notify, what seemed like the entire Colorado Army National Guard, what was happening.  To CH Dave's wife, "C" who also provided us with a bag of goodies.  To our Army family who immediately circled the wagons around us.  The list goes on and on and on........


Miracles don't have to be big, booming spectacles.  They can also come in subtle ways, like a friend's text or a cup of hot coffee or the nurse's smile when he says, "She's doing incredible" or the parking spot that opens up just in the right place.

You just need to look for them.  You may have miracles happening all around you every single day.....don't miss them!

 


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Diary of a Brain Tumor - Bitter or Blessed

>> Wednesday, June 22, 2016

I apologize for not writing for awhile......again.

When I started writing again, I was writing about the week that we were dealing with Nani's brain surgery.  I was just getting into the swing of writing about it, when the fucking truck that hit us out of nowhere threw it into reverse, backed up, and hit us again going the other way.

Brain cancer.

My Nani has brain cancer.

June 3, 2016 was D-Day for us -- Diagnosis Day.

The rest of that Friday, what was left, was a carousel of emotions.  I'd go from peaceful calm to wanting to break something....anything.  I watched Nani ride her bike on the street after we got home and I was numb.  This could NOT be happening.....LOOK at her for God's sake!  To look at her, you'd never know she just had her skull cut open 5 days prior.  HOW can this be happening???

That night and over that weekend, I was angry and bitter.



We get the diagnosis and the very next morning, My Marine leaves for his 2-week Annual Training, and I'm left holding the pieces.  Nani was scared and cried a lot.  She had anxiety-induced nausea and vomiting.  Nudgie cried because she was scared that her sister was sick.  And I cried because I'm by myself, having to hold them both while they cried......feeling myself getting angrier and angrier.

That night, I sat and was looking through Facebook.  Reading everyone's messages of support, love and prayers was helpful......but I still felt bitter.

Bitter because, while they said they were praying for us and for Nani, they still get to hold their normal, healthy children......they still were posting pictures of their happy summer vacations......their kids swimming, riding their bikes....happy, smiling, kids without brain cancer.  Nani was supposed to have the same summer.  We were supposed to go to Texas this summer.  Now our summer vacation is filled with road trips to the hospital......chemo treatments.....radiation treatments.....MRIs.

My heart hardened even more.

I went through my newsfeed and shut off all my notifications.  If I saw one more happy, smiling summer picture I was going to throw my laptop across the room.

That night I sat in my bathtub....in scalding hot water.....and God and I had a chat.  It was mostly one-sided because I poured it all out.  I asked God over and over why this was happening to my Nani.....she doesn't deserve this.  She's a good girl.....smart, kind, beautiful, talented.  I asked God why didn't He answer our prayers.....that the tumor NOT be cancer.  I asked God if He heard Nani crying.....if He heard Nudgie crying.....if He heard ME crying.....my mother's heart shattered into a million sharp and cutting shards.

I was done.  I wanted nothing to do with Him.  But God wasn't done with me OR with my family.

I did not want to go to church the next morning, but I went for Nani.  She wanted to go.  I sat in the back and told God, "Ok, I'm here.....but this is all You get."  I stood with my arms crossed while the Worship Team sang about God's goodness.  I thought, "Really God?  Goodness?  What is so good about giving an 11-year old brain cancer?"  The anger and bitterness swelling inside me....and I almost walked out.

Until Joel, our Worship pastor, started talking.  I don't remember much of what he said, but I remember that it tied in so much with what I was feeling the night before....coming to the end of my rope, does God hear me.  I have to sit down.......the floodgates just opened and I'm openly crying in church....ugly cry.....trying to hard not to sob out loud. Then he starts singing "O Come to the Altar".....I put my head on my knees and just let it all out.

He heard me.  He heard my cries.  He heard Nani and Nudgie's cries.

The bitterness and anger started to melt away.  The darkness was chased away by the Light.  I knew, at that moment, that God had my Nani in the palm of His hand.  That we will never be alone through this journey.

I will still have days of anger and sadness and fear and frustration and disappointment.  But instead of allowing the bitterness to take hold, I will remember how blessed I am to have a mighty God in my corner and an army of angels surrounding us.

He heard me.......and He answered.

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How To Support #TeamDanjela

>> Wednesday, June 8, 2016

I've had to stop blogging for a bit because I've been wrapping my head around the diagnosis that my baby girl has a brain tumor.....and our world has been moving at 1000 mph since then.

Before I jump back into posting about our journey, I wanted to do a post about how your can support our daughter and our family during this journey.  There are so many ways you can help!

First - if you're on Facebook, you can "like" her support page - "Support For Danjela".  Click HERE to go directly to her page.  I will be posting updates there regularly.



Second - you can go to her GoFundMe page and support there.  Please know that, as a family, we are NOT asking for donations.....just prayers.  But if you are inclined to help, this is an option as well.  Click HERE to go directly to that page.


Third - our amazing Colorado National Guard Family Programs staff have setup a Meal Train for us.  It doesn't even have to be a cooked meal.  Gift cards for restaurants and grocery stores are great too.  Again -- we are NOT asking for donations -- just prayers.  And again, if you are inclined to help, we are so very grateful.  Click HERE to go directly to that page.


Fourth - a very good friend of mine has set up a #TeamDanjela photo campaign.  She is asking that wherever you are, if you have a moment, to take a photo with the #TeamDanjela hashtag in it and post it to Facebook or Instagram.  If you use FB, please be sure to also put #TeamDanjela in the comments so that we'll be able to search and find it.  If you use Instagram, please use #TeamDanjela as well as @marinehawkwife12 so that we can search and find it as well.


Fifth - Cards of support are always appreciated.  You can send cards directly to:

The Belo Family
C/O Suzanne Buemi
12200 E. Briarwood Ave. Ste. 160
Centennial, CO 80112


Please know that we, as a family, appreciate every single thought, prayer, message, text, comment that supports our Nani's fight.  No family should have to go through this.  Thank you for sharing our journey with us.

#Sheischosenandblessed  #TeamDanjela


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Diary of a Brain Tumor - The Wait

>> Friday, June 3, 2016

Nani went into surgery around 1:30am.  And the agonizing wait began.

I had been posting updates on FB as we went through the night, but already messages of support were starting to come in.  Most of them were shocked responses.  What??  Not Nani!  Not this healthy, beautiful, 11 year old artist, singer and ballerina.

We were given a few options on where we could wait.  We could wait in her actual PICU room, but we said no right away.  I didn't think I could handle being in there when (or if) they wheeled her back in and I wasn't prepared for what I was seeing....or even if the news was bad.  We could wait in the waiting area outside the PICU on the same floor or we could wait in the waiting room on the surgical floor.  One nurse suggested we wait there in case they needed to find us.....so down we went with our Chaplain, who's name is Olive.

At first, I was numb.  Still trying to process what the hell was happening to our family.  We did normal things....plugged in our cell phones, posted an update, got some water, tried to get comfortable.  We knew we were in for a long wait.

I remember having moments of ups and downs.  During the ups, I would be calm....able to have a conversation, just maintaining general conversation.  Olive was very good and skilled at asking questions that would get us talking....keeping our minds off the agony of waiting.

But the downs.....the downs felt like I was descending into the pit of hell.  My mind would go everywhere......I remember telling Olive about Nani's upcoming 5th Grade Continuation and how just last week we bought her a beautiful new dress to wear.  I remember falling apart, crying, and saying how terrified I was that we would be burying her in that dress.  My mind went there......this was our reality at the moment.

At one point, I went off into a corner by myself, got on my knees and started praying the rosary.  I didn't care about the Mysteries for that particular day.....I just kept saying the Hail Mary and Our Father over and over and over......feeling those beads in between my fingers.....clutching them so hard that at one point during the night they broke.


I only made it about halfway through before I lost it again......a mother's wailing, tears that just won't stop coming, begging God on my knees not to take Nani away from me.  I remember feeling My Marine's hands on my back and shoulders all through this......he was suffering too....in his own way.

By this point, at least an hour and a half had gone by and Olive felt that we should have gotten some word.  So she went up to the PICU on our behalf.  While I waited for her to come back, I went into the restroom and caught my reflection in the mirror.  My face was swollen, my eyes puffy and almost closed shut from crying so much.  I can't ever remember crying so hard.

By the time I came out, Olive was coming up to us to say that she had news......Nani was stable.  This was HUGE and such a good sign.  Olive was a little upset for us that we had to wait on that 2nd floor, so she insisted that we go back up to the PICU where we could go in and talk to the nurse directly. 

Stable......she was stable......which meant she was alive.  A small weight was starting to lift from my stomach and I had a glimmer of hope that she would come through this.

When we got up to the PICU, Olive introduced us to Alex.....the nurse who was there when they brought Nani in and she was the nurse that would be receiving updates from the ER.  She would also be our night nurse during our stay in the PICU.  She told us that Nani was, indeed, stable.  They were able to go in and relieve the pressure with no complications and that they felt that since she was doing so well, they were going to go in and remove the tumor.

Thank You God!  Thank You Jesus!  Thank You Blessed Virgin Mary and all the Saints!  She wasn't out of the woods completely, but there was Hope.

About two hours later, I went in for another update.  The surgery had gone well.  They got most of the tumor and were finishing up the surgery.  After that, they were going to take her for another CT Scan, clean her up and then bring her to the PICU and then we could see her.  Alex said it would probably be about another hour and a half.

Four hours......her surgery took four long, agonizing hours.  At the beginning, we didn't know what the outcome would be......I was fully prepared to have to post a message that Nani had gone Home to Jesus.  But instead, I was posting that God took care of our baby.....He touched her and used the hands of the surgeons to see her through.  My faith soared....my Hope was in Him....that He would continue to walk with Nani and us through this journey.  At this point, Nani was alive.  It didn't matter, at that moment, what the side effects or neurological repercussions would be. 

She....was.....alive......

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Diary of a Brain Tumor - It Couldn't Get Worse

>> Thursday, June 2, 2016

You always hear the phrase, "The darkest hour is just before the dawn".  Truer words never spoken that night.  Nani's condition was getting worse and we were running out of options.

Life Flight.....switching from ground transport to air because time was of the essence.  She was bleeding into her brain, was unresponsive and her left pupil was blown.

They moved her immediately into another room where they prepared her for sedation so they could put in a breathing tube.  She was still breathing on her own, but since her situation was so dire, they wanted to make sure they were ready "just in case" and they didn't have to waste precious time they just didn't have.

The Chaplain sat with us again and explained what was going on while we waited....again... seconds just ticking away. 

Finally, they were ready and we got to go back and see her.  She was sedated and so still and pale.  She had the breathing tube in.  To see your child like that is unimaginable.  To say it's a nightmare doesn't even scratch the surface.

I asked if I could touch her and they said I could.  I held her hand and stroked her forehead....moving little pieces of hair out of her face.  I whispered in her ear that mommy and daddy were right there with her and she had to be strong.  I then whispered to her that she was finally getting that helicopter ride she always wanted to take.....and she moved, every so slightly, but she moved.  My Marine went over to talk to her too and then we waited outside in the halls.

My Marine, as a Blackhawk crewchief, has worked with Med-Evac in the past and knew some of the Life Flight crew.  He would talk me through what was going on, what they were doing....which was very calming, I think, for both of us.  When they rolled her past us, she was all wrapped up tight, like a blue burrito.  She even had the blue surgical cap on as well.  One of the crew came up to me and handed me a Life Flight pin, hugged me and said they'd take good care of her.  We'd be following in our car....about 5-10 minutes behind her.

I remember watching her being rolled out and looking around the ER.  It was completely silent.  Everything stopped and she was the main focus at that point.  I looked on the faces of the staff and saw sympathy and sadness......they knew that this may not turn out good.  The odds were not in our favor.

As we gathered up our things, I remember just shoving stuff into my purse....still having the sense to make sure we, at least, had our phone chargers.....and then we headed out to the car.  As we pulled out, we slowed down just a brief moment to watch them load her in helicopter.  As a mother, I would feel helpless a lot during the next week.....but this was just the beginning.  She was going alone.....I could not be there with her.



As we drove off, I looked up and noticed that there was lightening.....a lot of lightening.  That pit started to form in my stomach again.  My Marine kept telling me to keep watching out the window and I'd see them flying.  But as the weather worsened, all I saw was lightening......cloud to ground lightening bolts all around.  While normally this would be such a beautiful sight.....this was a bad thing for helicopters.  And then the rain started.....hard, driving, pouring rain and lightening bolts all around.  While My Marine kept trying to ease my worries.....I've been around aviation enough to know that there was no way in hell they'd be able to fly through this.  I could hear it in his voice.  I kept my hands over my eyes the whole drive.  I just didn't want to see the lightening.

As we got closer to the hospital, I heard My Marine say, "They made it" and showed me where to look for the strobe lights on the top of the hospital.  It was a miracle.....God's Hands wrapped around that helicopter, protecting it from the weather and guided it safely there.  I could breathe just for a moment.

Once we got to the hospital, they directed us where to go immediately.  I was so impressed how they already knew we were coming....had wrist bands already for us.  When we got to our floor, there was a chaplain and a nurse waiting for us as well and took us back to the PICU.

We didn't even have time to see her.  I remember the hallways being dark & dim except for her room which was filled with bright white light.  There were people all around her, moving, doing something....

And then a man came over....grabbed our arms and pulled us over to the side.  He handed us a piece of paper and said, "We're out of options.  Your daughter needs emergency surgery and she needs it now.  If we do not relieve the pressure on her brain, she will die."

I remember saying, No, no, no, no over and over again.  My legs collapsed around me and I felt arms hold me up as my worst nightmare, my worst fears were coming true.  My Marine had to be the strong one and sign the papers as I don't think I could have even remembered how to hold a pen.

They took us back to see her and again, I asked if I could touch her.  I looked at my sweet girl.  She looked like she was asleep.  She still had the breathing tube in and she had IVs everywhere.  There were two little sharpie marks -- one in the middle of her forehead and one by her left ear.  I leaned over her....held her hand....kissed her on her cheek and cried as I begged God to please save her, to please be with her.  I prayed for everyone I knew who had passed to be with her.  I prayed for her Guardian Angel to comfort her and help her to not be scared.  I prayed for the surgeons and the team who'd be operating on her.  My last gesture was to make the sign of the cross on her forehead.....and I watched as they rolled her away.

All I could think of was, "Dear God, please don't let that be the last time I see her alive."

And the wait began........

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Diary of a Brain Tumor - The Next Few Hours

>> Wednesday, June 1, 2016

We knew this situation was bad.  There was so much going on that I just didn't have a chance to really process.  I had one very sick daughter on one hand and on the other, I had a very scared daughter who just didn't know what was going on.  While I wanted to collapse in a heap in the corner and just scream and cry....I had to hold it together for her......for both of them.

My dear sweet friend, V, came to the hospital and picked her up.  The plan was to take her back to our house so she could get some sleep.  In the midst of all this, my heart was breaking for Nudgie because she had a field trip the next morning and I was supposed to chaperone.  I hadn't been able to make any of her field trips this year and she was looking forward to me going with her.  V said she'd stay and get her off to school the next morning, if needed.  We kissed and hugged Nudgie and told her that Auntie V would be taking care of her for a bit and that I'd be there as soon as I could.

By the time they left, the Chaplain had arrived.  CH Ron was a key part in keeping us as calm as expected.  By that point, I had allowed all the emotions and fear I was holding in to protect Nudgie to come out.  I clutched my rosary beads while we were escorted to another room while they prepped Nani for transport.

All I remember was shock.....shock....pain.....agony.....disbelief.....and guilt.  Oh, how the guilt weighed heavy on me.  How could I have missed this?  Nani never gets headaches, but over the span of the last 2-3 months, they popped up....not painful and not frequent, but they were there.  Then I felt guilty because I had yelled at her that morning....on our way to church.....over something stupid, like the broken handle of a gift bag.  And then I hit the ultimate guilt......I'm being punished.  God gave me this child and I'm a bad mom because I'm hard on her, I yell at her, I expect perfection out of her.  God is going to punish me for that by taking her away from me.  Yes....I went there.

I poured this all out to the Chaplain while twisting my rosary and tattered Kleenex in my hands.  He spoke words to us that I really don't remember much of now.....but one thing that stuck with me....and still makes me smile.  He looked me right in the eye and he said, "I know this is so hard and unimaginable for you and you don't know now why this happening....but it's really ok to look up and say, "Fuck you God!"   He can take it."

At this time, they came back and told us that the ambulance was there and they were getting ready.  I remember saying that I wanted to go to the rest room before getting in the ambulance, so My Marine and the Chaplain went ahead into Nani's room. 

Five minutes......that's all it took for our world to take yet another drastic downturn.

When I walked towards Nani's room, there was so much activity.  Too much activity for an ambulance transport.  The doctor pulled me aside, with My Marine, and told us that the pressure in her brain was increasing....fast.  She was unresponsive, her left pupil was blown, and they feared that she was bleeding in her brain. 

Our only option at this point was flying her by helicopter.....and they called in Life Flight.

The nightmare continues............

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Diary of a Brain Tumor

>> Tuesday, May 31, 2016

After almost 6 months of not blogging, this was really not the way I wanted to come back.  But yes, you read that right......

Diary of a Brain Tumor......

On Sunday, May 22nd, my beautiful, sweet Nani was diagnosed with a 7cm brain tumor.

That morning started off normally.  We got up, got ready for church.  Nani was moving a little slower than normal, but I thought nothing of it.  I asked her to help me wrap a gift for her Youth Pastor & his wife, who are expecting their first baby. 


On our way to church, Nani said she had a headache.  She had complained of headaches before....every once in awhile and nothing severe.  We'd tell her to drink more water, give her some aspirin and tell her to rest.  Looking back now......all the signs were there.
We got to church and went our separate ways.....Nani to her Youth class, Nudgie to her class, and me to church.  After church, I go to pick her up and passed one of the little girls in the hall.  She asked if I was Nani's mom and told me that Nani was in the bathroom throwing up.  Her teachers caught up with me and told me the same thing.  I gathered up Nani from the bathroom and asked her how she was feeling.  She said her head still hurt and her tummy was queasy.  She mentioned a little blurry vision.  My Marine and I both have migraines, so my mind started to go there.

We got her home and into bed.  I gave her some aspirin and she fell right asleep after vomiting one last time.  She got up around 2pm and said she was hungry and feeling much better.  She ate a donut and played with her sister for a bit.  Around dinner time, she started to look sick again, so we told her to go ahead up to bed.

20 minutes later, the screaming started.

She kept holding the left side of her head saying the pain was so bad.  It would ease for a few minutes and then start up all over again.  A small part of me was still hoping for a migraine, but my momma's heart told me something else was going on.  We bundled her up and went straight to the ER.

When we got there, they immediately took her back.  Her vitals were good, no fever, but she looked so pale and lethargic.  The ER doctor immediately went to meningitis and wanted to do a spinal tap.  While we were open to all methods of treatment, we really wanted to try some pain management first before going that route.

They took blood, which came back normal except for a low potassium count.  They gave her some meds to increase that along with some Tylenol.  My Marine and I decided that I would take Nudgie home to try to get some sleep.  (This was about 9pm now).  About an hour later, My Marine called me to tell me that while the Tylenol worked at first, once it started to wear off, the pain came back.  We were looking at something other than a migraine and he gave his consent for the spinal tap.

At this point, I bundle Nudgie back up in the car and head back to the ER, which is only about 15 minutes away.  By the time I got there, My Marine told me that the doctor had ordered a CT scan before doing the tap.  About 20 minutes later, the doctor and a nurse walk in and close the door.

I knew something was wrong.....terribly wrong.

They told us that the CT scan revealed a 7 cm mass on her brain.....and it had been there for a long time.  She had immediately called over the Children's Hospital's neurology department and they wanted her immediately.  They called a chaplain for us and began making arrangements to transport my baby by ambulance ASAP.  I called my dear Army Sister to come pick up Nudgie to take her home.  The world is spinning and we're making phone calls to family and close friends letting them know the situation.  At one point, my legs totally collapsed from underneath me and the diagnosis started to set in. 

Our nightmare was just beginning............

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January No Spend/Low Spend/Decluttering Challenge

>> Saturday, January 2, 2016



For those of you who have followed me, you know that this past Fall I did a Saving & Giving Challenge where I challenged myself not to compulsively shop for new craft supplies, books or clothes as well as declutter and give away as much as I could.  It was about 50% successful on the spending front and 100% successful on the decluttering/giving front.  


With the holidays, spending was out of control and decluttering was put on a hold.  So now it's time to sit down and put that plan back into action.

So, I give you my January Goals:
  1. No purchasing of books, clothes, toys, craft supplies, unless I can use store credit or gift cards.  Evaluate purchases that do not include food, toiletries, medication.
  2. Track spending & bills to help me start planning a better budget.
  3. Inventory what's in my freezer and use that to meal plan - using what's here & buying only necessary food items
  4. Declutter!  Three target areas for this month are the bathroom cabinets, the storage cabinet in our family room and Christmas items.
  5. Consign or giveaway any items from decluttering challenge 
  6. Start rebuilding savings accounts for the girls and our emergency fund.  Return to plan of depositing My Marine's extra military pay.
  7. Work on business plan for my store.  Add new items to inventory.  Order business cards (using money from business sales).  Make a plan for selling at craft fairs.  Explore other options for marketing.
  8. Take the change jar to the bank to count & deposit.

And there it is......small & simple!

What about you?  Do you have any goals for January?

 
 
~~ Jennifer

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Might As Well Laugh About It Now
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Through the Grinder
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