Information Overload!!

     Well, the day is winding down.  Lily is having a play date with some neighborhood friends.  Zi is about to go down for a much needed nap.  I should probably be doing and folding the mounds of laundry that have piled up in only two days.  However, as I mentioned before one way I process information is by writing.   I will now attempt to "download" all the information from todays appointment with the Hematologist that is still whirling around in my brain onto this page of our blog   What better way to make sense of all the new information we received today and update everyone all at the same time.
     We had an appointment scheduled for 10:15 this morning.  This was during Zi's regular nap time.  As you can imagine it was a bit of a challenge keeping him content, especially due to the fact the Dr. didn't come into the room until almost 11:15.  I kept perspective the entire time realizing that he could have been speaking to a child's parents that were going through something much harder than we were.  They may have had a list of questions even longer than mine.
     The Dr. spent at least 45 minutes with us, covering both Zi's diagnosis of ITP and why, based on his lab results and clinical presentation he did not believe Zion has Leukemia.  Acute ITP usually presents after a child has experienced a viral illness.  Based on the fact that Zion was sicker than a dog about 3 weeks ago after his six, (yes six all at the same time) vaccinations and viral illness that came on at the same time, it made perfect since and confirmed even further the diagnosis of ITP.   Basically, he explained ITP as "friendly fire."  When Zion's  immune system was hit with a big job to do it "went into overdrive" and the antibodies that your body usually makes to fight infection for some "unknown reason" began attacking his bodies own platelets and attaching themselves to them. Then his spleen which has the job of destroying the cells that the antibodies attach themselves to gets a bit confused and just destroys these good platelets that the antibodies are hitching a ride with figuring they are "Foreign invaders."  Yikes, "information overload," hence the title of my blog today.
     The Dr. then went on to explain all our treatment options which ranged from doing nothing to admitting him as an inpatient and giving him an IV treatment over a three day period for six hours a day.  Based on Zion's age and stage of life (a one year old learning to walk) and the possibility of getting injured and causing dangerous bleeding the Dr. did not recommend the "doing nothing" option.
     So where do we go from here.... We have chosen the least invasive route to begin with and would like you to join us in praying that this approach would work and completely cure Zion's condition.  We began heavy doses of oral Prednisone today and will taper (or decrease) his dose every 4 days based on his lab results for an initial period of 16 days. Yes, that means every four days we will be going to the lab for blood draws.  In addition Prednisone has some unpleasant side effects. We obviously are not looking forward to this but are more than willing considering what our news could have been yesterday.
     I was so concerned to give Zion his first dose today.  Normally he takes medication well but the pharmacist warned me that although it was flavored it was extremely bitter.  She encouraged me to taste a little on my finger prior to administering it to him.  Let me just say, I can sum it up in one word...NASTY!!  I prayed big time before giving it to him and God is so good.  Zion took it like a champ and actually wanted more!  He also loves to suck on Lemons... go figure!
     So that's the latest!  We are asking for prayer that Zion will respond beautifully to this first line of treatment and be completely healed! The information that I have read says that Acute ITP is curable in 80-90% of children diagnosed as early as Zion.  Praise God!  Please pray our little man falls right smack dab in the middle of that percentage!  Please also pray that he does not suffer any of the unfortunate side effects of these steroids.  We would also pray for protection from injury and infection and especially that our family remains healthy during this entire process.  One of those "unfortunate side effects" is that they are more prone to illness while on the Prednisone.
    Lastly, I want to again thank everyone for your outpouring of love, support and prayer.  Your comments are just so uplifting and have encouraged us tremendously.  We love you all and will continue to keep you posted as we navigate these "uncharted waters."

Zi Zi....always into somethin!

    

What a day!

     Today started out just like any other day.  I woke up spent my time with the Lord, walked with a friend and then came home to start the morning routine.  Today was my work day and so the morning seemed a little rushed as usual.  Zion woke up late so I didn't get my usual morning snuggle time in.  I am so grateful God allowed me a quick minute to grab up my son and cuddle him before I got ready for my day.  Still in his footies I looked down and saw some tiny pinhead sized purple spots on his right hand and lower arm.  Of course my nursing skills kicked directly in and I stripped him down to his diaper and began examining ever nook and cranny of his little naked body.  More little purple spots began popping up here and there.  With each small dot my anxiety level rose.  I am a bit of a paranoid mother and couple that with being a nurse that is exposed now to all kinds of pediatric illness and cancer and you get a recipe for disaster.  The scales tipped when he was eating breakfast and I noticed little black spots on his tongue. 
     I immediately reached for the phone and contacted the advice nurse.  I was placed on hold for a ten minute period that felt like an eternity.  There were no appointments available so I insisted the advice nurse have a Dr. Call me for a telephone consult.  She assured me that a Dr. would call me within a four hour period.  I could tell by the tone in her voice based on my description of his symptoms the concern was mutual.  
     Knowing that I needed to go to work due to my lack of sick time I put on my best poker face and went in.  On my way into work I called my prayer warriors and alerted them and asked them to spread the word. Within 15 minutes of being at work Jeremy called to tell me that the Dr. had called and wanted us to bring Zion in as soon as possible.  Confirmation once again that my mothers heart and nursing experience was speaking very loudly that this was not something to be taken lightly.  
     We arrived at the clinic and were taken back to meet the Dr. who examined Zion very thoroughly and immediately explained to us that he would be ordering STAT blood work to determine what was happening to our son.  The next few sentences that spilled from his mouth rocked Jeremy and I to our very core.  He said that based on Zion's symptoms we could be looking at one of two things...  the first being something called ITP: idiopathic thrombocytopenic purpura, a bleeding disorder in which the immune system destroys platelets, which are necessary for normal blood clotting.  This he explained would be the best of the two scenarios due to the fact that the alternative was the possibility of Zion having Leukemia.  He explained if Zion was diagnosed with ITP it may require steroid treatment and blood transfusions but it was definitely the diagnosis we wanted to hear.  We were then instructed to go to the lab, get some lunch and return to the clinic to review his test results in person.  Ok I am a nurse but even the layperson knows reviewing labs in person  means he is expecting those labs to be abnormal and possibly bad news.  We left the clinic in absolute shock and entered a three hour period of time in our life that was the most fear filled, life flash before your eyes, sad, confusing, overwhelming, "what if"thinking, absolutely HORRIBLE time of our lives.
     The lab experience was horrid and it took two sticks and two different techs to finally get his specimen.  He was not afraid to let the whole world know that this sucked and he was not ok with what they were doing to him.  Poor little guy, already having bruising issues was left with a couple of nasty additional "war wounds" after all was said and done.
     We left the lab drove home, fed Zion and changed him out of his goofy Christmas footies, Daddy had to bring him to the clinic in, in such a rush.  As we sat at the table and talked Jeremy spoke of a thought that had been haunting him all day.  Yesterday, he signed up to participate and organized a team from the shop to shave their heads to support childhood cancer research through Saint Baldricks this coming March.  Yes, you will be hearing more about this in upcoming emails.  And, yes, Jeremy is going to shave off all of those lovely locks that I am so madly in love with.  We were just humbled by the irony of this and what we were now facing the possibility of.  Talk about hitting close to home.  I admitted, I too was having the same thoughts running through my head.  The rest of the time we cried, hugged, prayed and then set out on the journey back across town to meet with the Dr. to hear Zion's lab results.  During this drive I prayed probably harder than I have ever prayed in my entire life. Except of course when I prayed for him to survive through my pregnancy.  Boy this little boy has given my knees a real run for their money in his very short little life so far.  Anyhow, I pleaded with God "please spare my son from Cancer.  Please God I beg you!!! But God, if you can't then please give us the courage and strength to face whatever journey you will place before us."
     We are so grateful that the first words out of the Dr.'s mouth were..."Well he doesn't have Leukemia!"  The next words..."but he does have ITP."  This, as I have said to many of you..."Was the best, "shitty" news I have heard in my entire life!"  Praise God!!!  We do have some uncharted waters to face and more than likely a lot more horrid lab experiences (sometimes twice a week apparently).  However, we will take this over the alternative anytime!!  Tomorrow we will meet with a Hematologist and gain more understanding of where we go from here.  We do know he has a "VERY LOW" platelet count (which helps with blood clotting) and this is not the best combination for a one year old BOY that is learning to walk.  Yikes!  Please pray for safety and protection from injury as we try to protect our little dare devil from hurting himself! 
     We left the office and it was as if someone pushed the decompress button.  As unknown as our future looks concerning this we felt such a relief after his diagnosis.  I am so humbled by the fact that parents all over the world, on a daily basis face what we did not have to today.  They enter a Dr.'s office and hear that their beautiful child has Cancer.  They have prayed just as hard as we have and for whatever reason they got a different answer. I am overwhelmed and have a brand new perspective on those that walk through this "valley of the shadow of death."  I am just once again, simply overwhelmed by this.
     Throughout this entire experience we were receiving texts, phone calls, voicemails and Facebook posts from all of you who knew what was going on.  I can honestly say, as afraid as we were your prayers and love were felt so profoundly by the both of us.  I told my friend and Pastor that I have no idea how people get through these type of life moments and not have the support of friends, family and The Body of Christ to be praying and lifting them up.  It is the most beautiful and comforting thing to know that you are not in the trenches alone.  Thank you to everyone who has been lifting us up in prayer and sending love our way.  We ask that you continue to hold our family & specifically "Our little warrior" up as we enter this next phase of this journey.  We promise to keep you posted along the way.  Goodnight, for now..this mama needs some sleep..ZZZZ

Our little warrior taking a "swipe" at his not so happy big sister:)

Zion and Roxy playing in the sand just three days ago.  

Our family in Bodega on Monday!

Our Big First Grader!!!

Lily has officially started First Grade.  It is so hard to believe time has gone by so quickly.  It's only been four days but, "so far so good!"

The very first day of class, Jeremy and I went with her and as I was taking pictures of her at her desk  she looked up at me and said..."Ah Mom, Can't you see I have work here to be done!"  OMG, I took that as a pretty big clue that she was ready for us to get lost!  It was sooo sad and I have to admit I may have cried a tear or two on the ride home:)  She was ready...obviously more than I was.

Lily hasn't had any homework yet.  However, as you parents of school age children know, there is plenty of homework for us parents during the first week of school.  I wanted to share with you one of our assignments that I thought was such an amazing idea.  Her teacher asked us to write her (the teacher) a letter introducing our child to her.  I quote, "No one knows your child better than you do."  She encouraged us to give a brief biography, share special abilities, fears, strengths, weaknesses, as well as share our expectations of her as a teacher, our student, the school etc...

I found this assignment absolutely incredible.  I had so much fun writing about my daughter.  It really stirred me to think about who she truly was.  The teacher said the assignment would be "rewarding" and that is exactly what it was.

I have included the letter I wrote to her teacher in this blog.  I hope you enjoy learning about this pretty cool Big First Grader from her very proud Mommy's perspective.

Lily gets a big 1st Grade Hair Cut

Having a blast

Bye Bye long hair:(

Our big girl is growing up too quickly!

Still having "Bodega moments"(That's our dog that passed away) She fell asleep with his chew toy:(

First Day of School

Big 1st Grader

This is the "mom you can get lost now" look!

Letter to Lily's teacher

8/10/10

Dear Mrs. L,

     Thank you for allowing us to introduce you to our "Lily Girl!"  We appreciate this opportunity and value the fact that you have allowed us a voice.

     As you will soon find out, Lily has one of the biggest hearts of anyone we know.  She is compassionate and caring.  Lily's preschool teacher referred to her as "the heart" of their classroom.  Lily has a very tender heart and often wears that heart right on her sleeve.  They say "the apple doesn't fall far from the tree," and in our case that is an understatement.  I realized this when Lily and I were watching a touching movie together when she was around three years old.  I looked over and Lily had tears streaming down her cheeks.  I knew from that moment on she had inherited my sensitivity.

     This sensitivity is both, as you can imagine, a blessing as well as a curse at times.  It is not uncommon for Lily to get her feelings hurt easily.  Which will undoubtedly afford her ample learning experiences throughout her life time, especially at school.  She generally responds well to a quick hug and simple encouragement and tends to move on easily.  

     Lily is your typical first born to over eager, "type A"(me, not so much my husband) parents.  Yes, we were doing flash cards pretty much out of the gate and would have invested in "Your Baby Can Read" if only we could have afforded it.  We now have a seven month old son and it is hilarious to reflect and see how much we have "lightened up" with our second.  With this being said we still completely value the importance of reading to our children and have done so from the time they were both in utero.  Lily was reading by the time she was three and has become very proficient over the last year.  Our nightly routine consists of Lily choosing a book to read to her brother and then I spend time reading to the both of them.  This summer we read "The Miraculous Journey of Edward Tulane", are currently working on "The Lion the Witch and the Wardrobe" series and then plan to move on the "The Indian in the Cupboard."  

     In the last year of Lily's life she experienced a big transition from being the only child and "Queen of the Castle" for nearly six years to being a big sister for the first time.  Although she absolutely adores her brother Zion she did go through the expected jealous, where do I fit now, stage.  She is now accepting her new role quite well and is an amazing helper and one of her brothers favorite people in the whole world.

     Lily is bright and catches on quickly.  As a student in the classroom, from what I have been able to observe, she seems to stay on task the majority of the time.  However, I have also observed that when she is bored she tends to get distracted easily.  I think that Lily does best when placed in a group that is a bit more academically challenging.  Our hope is that she will "rise to the occasion" and meet these challenges as an opportunity to grow and learn.   Lily is methodical and detail oriented.  In some circles this may translate to SLOW!  Whether eating her meal, making her bed or working on her homework she generally needs a few reminders to speed up the process.  This may prove to be a challenge when trying to accomplish all that she needs to do during classroom time.  

     Lily has been recognized for her "leadership" characteristics and finds joy in helping others.  Lily tends to be responsible and well behaved in the classroom and saves her "spicy moments," as we like to call them, for home.  

      Although Lily plays soccer, our family joke is that she "shows up for the oranges at half-time."  Running is defiantly not Lily's favorite past time.  However, we recognize the value of being involved in team sports as well as the obvious health benefits it offers.   

     

     What Lily lacks athletically she makes up for with her artistic side.  Lily is an aspiring musician and has been in drum lessons since the age of five.  In fact if you ask her what she wants to be when she grows up she will tell you she is going to be a "nurse by day and a rock star by night", along with a host of other various careers.  Lily loves to create.  She often spends her free time making crafts and drawing.  

     Lily is very social and tends to be friends with both boys and girls.  It would not be uncommon to find Lily on the playground playing Star Wars with a group of boys one day and Little House on the Prairie with a group of girls the next.  

     As far as expectations for this year it is our hope that Lily will continue to thrive academically and socially.  We hope that having her as a student brings you joy. I still have such fond memories of my first grade teacher, Mrs. Miller.  We hope that Lily is one of those students that offers you a sense of reward and fulfillment when you teach her.   Thank you ahead of time for investing in our child's future.  It is with the utmost respect and gratitude that we entrust our most precious Lily into your hands for what we know will prove to be an amazing year.

Sincerely,

            DeAnna Nellist

"No Brainer!!!"

   The very day Jeremy got his shipment of 5000 new brochures for our old location, with our old address of course he signed the lease on the new home of Roseville Guitar Works!!  It was a very quick decision, however, was as the title of this blog states.... "A No Brainer" for sure.  The right time, price and space all came together quite perfectly.
     The month of March was basically a total blur!  We spent countless hours, painting, stripping wall paper, cleaning & redecorating.  As you will see from the pictures even Lily and Zi got in on the action.  The end result is a very cool new space full of endless potential.
     Roseville Guitar Works is now located at 315 Main St. in Old Roseville.  It is the coolest old two story house that has been converted for commercial use. We have gained 1000 more square feet and an additional lesson room. The lesson rooms are huge and our instructors & students seem very happy with them. There is a front porch for the customers and guys to enjoy. One of Lily's highlights to her week is going to visit Daddy and getting to sweep the porch.  Our waiting room has a beautiful new 42" flat screen TV.  Jeremy is excited to host guys nights to watch UFC.  I am thinking it will be a perfect place to have a girls night once in a while as well.  Jeremy has also gained a much larger shop space to accommodate him and his new apprentice!  Yes, you read that right...an apprentice!  Michael Karriker is a graduate from Roberto Venn and has come to learn the luthier trade from Jeremy.  He is such a cool guy and Jeremy is very impressed with him so far. We truly believe God allowed our paths to cross at just the right time.
     It is so very cool to see how God has grown Jeremy's reputation in our community.  We are in first place once again for the KCRA A-List "Best of Sacramento" competition for local businesses. I absolutely love watching him interact with his customers. He is so gifted at what he does and his repair customers, student and parents seem to really appreciate him as well. The shop already had such a neighborhood, family feel and the new location fosters that amazingly.
     So as if we hadn't gotten enough gray hair already...we are going for Roseville Guitar Works Round Two!!!  God has been so faithful and it is amazing to look back over the last 4 years and realize how far He has brought us.  Enjoy the pics and thanks for all your love, prayer and support.  We couldn't do it without you!

I just love painting trim....not!!!!

This will be the only pic you will see of me due to the fact I looked like &*!% the entire time!!

20 trips to Home Depot later...

There weren't a lot of home cooked meals in the month of March!

Zion spent a lot of time hanging out while we got stuff done!

The master painter!

Jeremy's Dad was always there to lend a hand.

Creed our painter and comedy relief!  

Lily helping Daddy paint the walls!

I HATE WALL PAPER!!!!!!!!

NEVER EVER WILL WE HAVE WALL PAPER!!!!

The finished result!!!  So much better!

The shop area, literally one hour before opening!  

We actually were able to get it presentable!!  "A Christmas miracle" for sure!!

Jeremy and Michael setting up the book display

Thank God he didn't break anything in the process!

315 Main St.  The new home of Roseville Guitar Works

Neon!!!

One proud papa!

The Welcome matt was a gift from Lily and I.

The entry

The waiting room(without the TV yet)

The Kitchen

Downstairs restroom

One of the four Lesson rooms

We made it!!!  

On Monday April 5th, 2010

 Roseville Guitar Works opened it's doors at our new location

God is good!!!!

    

"Lily's Life!" Happy 6th Birthday Beautiful!!

Lily at her 5th Birthday.  Our beautiful Pixie!

As I reflected back over the last year in Lily's life I have realized that from the age of five to the age of six was a very significant year.  A year of many firsts...

• First REAL experience with LOSS OF LIFE ...Great Grandma Burgo and her dearest friend Bodega (our doggy)
• First day of Kindergarten
• Loss of first tooth
• First Soccer season
• First Kings game
• Learned how to swim independently for the first time
• First major hair cut
• First time learning to boogie board
• First drum lessons
• Lily learns to read!
• First experience being a Big Sister
• First REAL experience with NEW LIFE...Lily prayed to ask Jesus into her heart 7/5/09 

 I figured the easiest way to share these moments is through the photographs we have taken over the last year.

Lily and Daddy at the Kings game

 Lily and her BFF Scottie

 
Summer fun..building forts with friends

 Lily has many special "little men" in her life.  Mason Harder is one of her favorite friends.

 Lily's favorite "big man."  She is a Daddy's girl through and through...

 Goodbye snarls and morning "drama"

6 inches gone.....

Goofy time with Mommy!

 Lily and Cousins at Great Grandma's funeral

Great Grandma Burgo.  A very special lady.  She will be greatly missed.

 Life is beautiful!!!  One of my favorite pics.

 Lily the fish!

Grumpy Lily...A face we saw way to often this year!

Lily rockin on her first drum kit!

"Animal" Lily!

Boogie boarding in Pismo!

Our little "goalie"

 Loss of first tooth!  Swallowed while eating a brownie:)

Mrs. Devine and Lily receiving her first award!

Lily wants to be a "rock star and a nurse" when she grows up.
So we combined the two for her halloween costume.

 Lily and "Lily" her first "just like me" American Doll.

Looking forward to meeting her baby brother...

At last he arrives!  Zion and Lily at their first meeting.

 An amazing big sissy!

Our beautiful girl...She is such a gift.

Lily turns 6!!!!

Lily is growing into an amazing young lady.  She is the perfect balance between "sugar and spice!" She has the most tender heart and is a care giver by nature.  God has gifted her with a bright mind and she loves school and is doing so well.  Her teacher says she is a leader in the classroom.  Lily has settled into her role as a big sister and is falling in love with her baby brother more and more each day.  We have loved watching this relationship blossom.  

I think the most incredible thing about our daughter is that she really LOVES THE LORD!!  I am so inspired by how real this relationship is for her. God is truly one of her closest friends.   I love to hear her pray and am in awe of the faith that she has that her prayers are being heard.  Her spiritual sensitivity is a beautiful thing to behold and I learn a lot just watching her experience The Lord.  She is truly a gift and we look forward to the "Firsts" this year will have to offer.