Friday, December 25, 2009

Emmanuel.....a Merrick update

Who is Emma Nuel?
that was the question on everyone's mind as they entered our cozy house for Christmas dinner.
The simple slip of my glittered letters had changed the whole meaning of our message.
Emma Nuel?  I asked.
What are you TALKING about?
Then they'd point and a 'light bulb' would go off for all of us.....

I have been dragging my feet to update you here about Merrick's condition.  Part of the reason was the second opinion we are still waiting on....
and the other part is plain ol exhaustion.
In the weeks leading up to Christmas Jarrod has been out of town, and it's been all I can do to keep up with Christmas things.  I KNOW I sound like such a whiner...but I'm just trying to keep it real here. 
I've said it before and I'll say it again.  I SO do not enjoy being a single momma.  I thank God for sendung me a partner-in-crime to run beside on this race.   He backs me up when I fall behind, he keeps me from giving up and he reminds me to cancel the pity parties....
without him I drop my eyes and forget that Christ will use ALL of this for our future....
we HAVE a hope and a future now!

Back to Merrick.  I overnighted his medical records to a Dr at UCSF.  Unfortunately, this Dr. was on his way out of the country and did not return until today.  He has been in constant email contact with me, but did not have the records to review while we was away.  On top of that he said his schedule is not open for an ablation until the end of January.

In the meantime I took all of our concerns to our current Ped. Ortho Specialist....and he answered every question  I had and set my mind at ease about the surgery.
At the time of our first meeting, I think Jarrod and I were in SUCH a fog listening to the diagnosis.  We failed to hear many of the details.  One of them being that this case has already gone before a board of doctors and they could not agree if this is definitely a tumor.  The mass may also be a bacteria infection, that if ablated could return again requiring further treatment.
Our current doctor wants to be sure that he can go in, remove ALL of the tumor and then be able to test it to be sure of what he is dealing with.  If it is an Osteoid Ostema as we suspect, then no further treatment will be necessary.  But if it is something else, he does not want to destroy it without being able to identify it first.
Clear as mud?

It comes down to being certain.  Yes, there may be another course of action for an Osteoid Osteoma....but if we cannot be 100% certain that that is what this is....then we are confident in taking the most cautious route.
And if that means 4 weeks in a body cast, so be it.
We can do this. 

So our surgery date is set for January 7th.
And I have SUCH a peace about this procedure.
We may still hear from UCSF in time, but unless he has something entirely new which we can consider, we're walking into this surgery thankful that this is treatable.

So back to Emma Nuel.....
Everytime I see that sign I:
a) laugh at the separation of the letters
b) remember the meaning of Emmanuel- God With Us!

He has never left Merrick, and we were never alone in making these decisions.  Whether His voice is audible, or his presence palpable......I know we are not taking this journey blindly.
1 John 4:16
I can know and depend on the love that God has for us!

Tuesday, December 15, 2009

A diagnosis: Osteoid Osteoma...Oh my!

I have to say....I told you so......
from the moment that Merrick started having leg pain.  I told you so.
Even if you didn't have an opinion, I did.
I knew it was a tumor.  And I didn't feel like I was overreacting.
I just knew.  I think God gives mommas that discernment.  It's what helped us push through three doctors, numerous tests and two months of waiting. 
I wasn't going to let them send us home with a 'growing pains' diagnosis.
The look on his face when he's in pain....
it's heartwrenching.

And now we know why.  Osteoid Osteoma
The Dr. described the pain as being close to drilling into your tooth....straight down to the nerve....without anesthetics....
....and it's constant. 
The diagnosis fits his symptoms perfectly. 
The tumor is benign....meaning it will not keep branching out and growing.  It will not metastasize outside of the there is no fear of it spreading.  It's just a tidy bundle of nerves and tissue deep inside Merrick's femur.  The pain worsens at night....which explains why Merrick will get up in the middle of the night and draw himself a blazing hot bath.  He just sits there half asleep with the hot water pouring over his leg.  Then he calls to me for medicine.  That's our routine for the past 9 weeks.

After SO much prayer support and encouragement, we confidently walked into his appointment today, knowing that we could handle any diagnosis. 
So we were neither alarmed nor deeply saddened by this long as it is treatable.
And it is! 
This pediatric orthopaedic specialist would like to operate after the first of the year.  The recovery period would include a month in a half or full body cast for Merrick, but the relief from his pain would be immediate.
This all sounded like good news.....

However, there is another option.  An option this specialist brushed aside.  He COULD do a Radio Frequency Ablation which would have Merrick up and walking the same day.  No casts, less invasive, outpatient.  We did not have questions while we were in the office today, but the more I research, the more I wonder why he wouldn't opt for the simpler procedure. 

I currently am in contact with the Radiology Dept of UCSF Medical Center.  It looks like we'll be seeking a second opinion before we authorize this surgery.  Unfortunately, this means Merrick waits longer for relief.

Throughout this process we've taken the journey one step at a time.  I just keep marvelling how Merrick is being shaped by this process.  Does God want him to become especially compasionate to others, more patient, or more prayerful?  This ordeal has brought that out in all of us!

I revel in the end that we will see how God's mighty hand worked through this situation.   Already I can point to so many people who love this little boy and are on their knees for him.  It's such a beautiful thing to be lifted up in prayer and we feel it.

So thank you for walking this journey with us. 
We're getting there......and in the end Merrick will walk (and RUN again) pain free!

Wednesday, December 9, 2009


What a TERRIBLE Giveaway host I am!
Though I do have several valid and heartwrenching excuses for my delay in ending this contest.....
but we'll save those for subsequent posts......gotta leave you wanting more right?

I must enter a contest two or three times a week......and I have won twice.  Nothing like a $500 Amazon card or a Nikon from Pioneer Woman......but a Chore booklet from a family website and a Pay it Forward gift that never arrived in the mail....Needless to say, I'm here to tell you, your chances were MUCH better to win this sweet little anniversary prize.
No it's NOT a dinner at Wienerschnitzel....though that may be appropriate for a Weiner Dog Blog such as ours.
And it Won't be homemade since I'm up to my EYEBALLS in Christmas crafts.
But it IS meant to pamper you a bit at this time of year.....
And I wish I had more.
And I MAY have entered Cindy more than once JUST since she asked so nicely.
(Unfortunately it didn't put her in the winning circle- good could I have handled all the mail about a rigged contest?!?! ;)
is that enough suspense for you?
The actual prize is.....a Spa Pedicure, YAY!
and now.

The winner of my FIRST EVER GIVEAWAY on WEDOGSBARKING is......

Leslie P. of Leslie's Lilypad

and I gotta couldn't have happened to a nicer gal!
She's probably one of my most faithful supporters, and a creative inspiration to So many of us busy mommas!

Leslie, email me your new address and I'll get your prize in the mail faster than Dash wags his tail!

Thank you all for playing along! 

Friday, December 4, 2009

My 100th Post! Giveaway!!

Welcome to my 1st EVER Giveaway on this blog!! I have been dawdling on the posts because I knew this one was coming...and I SO wanted to do something to celebrate!  But between my sweet baby's leg and the absence of my hubby at this time of year, and school, and Christmas prep, etc....etc...ETC!......I haven't had any time to put together a good write up!

That being said.....leave me a comment and let me know why you stop by this lil ol blog.  And I'll enter you in a drawing for a SURPRISE!.......and I promise it will be better than chocolate :D
Well, to me it's better than chocolate...but I don't really like chocolate...unless it's wrapped around a Snicker's bar....or is made from the finest DARK chocolate......but I digress. 
Maybe it'll be a Starbuck's card.....or some Itunes credit.....whatever it is.....I know I'D like to keep it. 
Who really can afford 'treats' for ourselves at this time of year???

And you guys have really been a support for me.  Whether you comment or not, I know you are here.....
Reading, praying, and genuinely just showing up!
So LEAVE A COMMENT so I can enter you in my little drawing.
I'll close the giveaway Sunday night at 10pm....and post the winner on Monday...

*****and for those who are following our Merrick drama.  It's NOT a TUMOR!  Praise God....and we'll visit a Pediatic Ortho Specialist next week and a second opinon.