Cerebral Palsy

I wish I had a moment to call each one of you to give you the news, and I hope to chat with you all over the next few days, but this is the fastest way to get news out.
We met with an unbelievably kind neurologist today, who spent over 2 hours with us.  He could tell by Mimi's muscles and skeleton that she has, undoubtably, Cerebral Palsy.  While a MRI is often used to determine diagnosis, there were specific signs in her back and other areas that the doctor didn't need the MRI to diagnose her.
He also diagnosed her with Central Hypotonia, and Left Hemiparesis.

We asked that everyone support us and pray for us today and we know that we were not alone in that office, therefore we know that what we learned today has a purpose, that Mimi has an amazing life planned for her!  She will still grow up, get married and have children and be a squirt.
Nelson and I are choosing to rejoice in this news.  We have seen that God is good, and we hope that you join us in this.  There is victory and struggles ahead, happiness and sadness, but we know we can rely on our family and friends.
Keep Mimi in your thoughts and prayers, but also think of Miles.  This is equally hard on him.
We love you all, appreciate you endlessly, and hope to see you all at Music for Mimi!

Huge News! The Ember Days and Ascend the Hill!

We have so much to fill you in on!!!!!

First, tomorrow is the day we have been anticipating: the neurologist.  We are really hoping to get some news on Mimi!
I know so many of you will be sending your thoughts and prayers to us tomorrow, and have asked what I hope to hear at the appointment.  What is the best outcome?
This is where my heart is...... if Mimi just has an ambiguous "leg deformity" (which I haven't talked with a single medical professional who still believes that to be true) then the insurance will continue to fight us, and every single physical ailment Mimi has from now until her adulthood could just be called a "deformity."  In some ways, that is great because all it causes is idiopathic toewalking (so far).  However, if she is going to be diagnosed, at this point I would rather it be a non-degenerative illness like CP.  Nels and I know that we are probably going to be faced with some truths tomorrow, and our deepest fear is the doctor even mentioning a progressive neuro-musculoskeletal illness.  So, that is where we are.  We will have more to share you tomorrow.

Today, Mimi had PT, and they put some more kenisio tape on her.  She looks like a zebra now!  She was pretty excited!Here is a pic with her and Brandon S.


Second, we could use some help.  We would love for anyone will to help with kitchen duty, or more importantly, dress up like a famous person!  Unfortunately, our fairy godmother has misplaced her attire, so we would love someone to come and "Bibbity Bobbity Bo!" the little girls    We have a Rapunzal, but we could use super heros or other courageous and uplifting characters.  Let me know if you are interested.  Also, please, please, get the word out!  If you would like a flyer to put at work or pass around, let me know and I will email you one.

And THIRD...... OUR MOST EXCITING NEWS!!!!
Many of you have heard of The Ember Days or Ascend the Hill.  They, miraculously, heard about Music For Mimi, and will be touring through Colorado on that date.  They are going to PLAY!  It is absolutely amazing.  This is going to be an amazing evening!  I hope you have had a chance to look at the other teasers I have put up, but here is one for Ascend the Hill, please check it out!
http://www.myspace.com/ascendthehill

This is just unbelievable to me.  I sing their songs in church, and they have been moved to play for my little girl.  I can't wait to meet them, and thank them.  I don't know how it is possible to cry this much, but I have, and I am.  God is Good.

A Wee Bump in the Road.......

We are getting so excited about Music For Mimi!  Things are moving forward, and we are so thankful!
      However, we have hit a bump in the road..... It seems that not all of our Evites reached their destinations!  Not Good!  To help us fix this problem, we need you to pass it along to literally EVERYONE you know! Here is the link to the Evite, just in case:
http://new.evite.com/?gclid=CPuK97WilacCFRRqgwodSn3mdA#view_invite:eid=011CAAQZXGL24E5HAEPAGV2S7TOCDE

In my last post, I shared a preview to one of our "up-and-coming" local bands AVILA.  I hope you all had a chance to look at their link.  Such a wonderful group of guys!

This is Miles and Mimi rocking out (in true air-guitar fashion) to Avila and A New Downfall.

 Here is another teaser!  This band is very dear to my heart, since a close friend started it.  Tyler Bell is completely adored by both of my children and has been instrumental in getting Music for Mimi off the ground.  He has put in so much work, and I am honored to present a teaser to you!  Music For Mimi is their debut show, and I am sure you will appreciate the musical talent in this small taste of their music.
http://www.myspace.com/anewdownfall

Time Passes Slowly....

Isn't it funny how some weeks fly by, while others take forever?  And of course it's the weeks that you want to hurry up and end that feel like they never will. Well, that is certainly how we are feeling.  The neurology appointment could not come fast enough to suit us, but in the meantime we have had some very cool experiences!
First, we will have the honor of having the chick-fil-a cow in attendance at Music for Mimi!  I have the privilege of knowing the cow, or at least the great guy, who is the cow.
We are getting lots of donations and gift cards for the silent auction, which we are so thankful for.
And in the music department, I have had the pleasure to get to know some of the incredible young musicians in Colorado Springs (it is really horrifying that I just used the term "young musicians,"  definitely not okay). And there should be about every music genre represented, so no one should leave unhappy! One band in particular, has been very gracious and helpful.... Which leads us to the next teaser....
AVILA!

Avila is made up of some amazing young men, one of whom I was lucky enough to meet.  They are making a name for themselves on the local scene, and have a great fan base! Click on the link to hear one of their songs, or learn more about them!http://www.reverbnation.com/avilaband.

Again, we are so thankful for the love and support we have been given. We love you all.

Lights, Camera, Action!

Don't forget to view the invite, and mark your calendars for:
Music For Mimi
When? March 5th
Where? Highland Park Baptist Church
What? A great time for family and friends to come and support Mimi!  Great music, food and the fairy godmother!

Here's a teaser for you!!!
Brown Eyed Girls will be playing! Check out their fabulous photo!


Also, if you are a musician playing, please confirm it with me ASAP.  I want to get the shirts ordered, and make a schedule, all with the right information.

Mimi:  A few things are happening with her.  The first is the postponement of casting.  The therapist wants to wait on what the neurologist says before casting more.  At her last appointment we discovered she had lost some of the mobility she had gained with the casting. They also told me that she has the muscle development in her legs of a 4 year old.  I'm pretty sure that is NOT good news considering she will be 7 in 3 months.  The absolutely fabulous news is that the neurologist wants to see her soon, and has made an appointment for her on Friday, February 25th.  We are so excited for this appointment.  I know we will get some much desired information.
Her spirits get better all the time, and thanks to her Aunt Shirley Banks, she looks forward to every Friday because she gets to open a special present from her!  She loves everything she has opened so far! We have been so blessed to have such wonderful people in our lives.  Please feel free to pass the evite along (the link is on the previous blog) and RSVP through there or comment on here.  Thanks again.

Official Invite!

Here is the evite link to view the Music for Mimi invitation:
http://new.evite.com/#view_invite:eid=011CAAQZXGL24E5HAEPAGV2S7TOCDE

We have several bands lined up, dessert, face-painting for the kids, and possibly some very popular characters showing up (like the fairy god-mother)! There will also be T-shirts for sale that say "Music for Mimi, " or "Mimi's Minions." She especially likes the second one.

We are also anxiously waiting for the neurologist to call.  It would be great if we could get a diagnosis soon.  Mimi's spirits have definitely been better this week, and I know it has to do with all the love, support and prayers we have been given.  She and Miles got to spend some time with two of their favorite people, Kristi and Kevin Leonard yesterday, and they couldn't have felt more special!

On a more personal level, Nelson and I are dealing with everything one day at a time.  My uncle Barry once made the comment, "Parents are only as happy as their least happy child."  I realize the truth of that statement.  We have good days when Mimi does, and have bad days when she cries and hurts.
In another way, it is so unbelievably tempting to take this whole situation and use it as a crutch to be angry, depressed, or justified for some crusade (don't get me started on the handicapped parking situation at the kids' school!).  I find myself sinking into moments where I am just plain frustrated, but the result of those moments is when I see grace.  I see that no matter what the diagnosis, Mimi is still Mimi.  That even if the bills get bigger, we are still a family with an abundance of people who love and support us.  That there are parents out there comforting their dying children, when my child can still play.  That through this "stuff" I have found new friends, reunited with old friends, and created bonds for a lifetime. So ultimately, what I am saying is, thank you.  Every time I get on here, facebook, or my email, I see words of encouragement and advice.  I will treasure these things in my heart always, and remember that in one of my darkest times, there was a lot of gazing up at the stars.

Quick Update

Great news!  It looks like we are going to have an excellent turnout!  So great, in fact, that we are going to have to move the venue to Highland Park Baptist Church!  We are so excited, more news to follow, I have to go to work!

The "In-Between"

It is hard to write posts when the information is frustrating, or when I feel like I haven't accomplished anything worth posting!  So, forgive the past few days with no posts-I am a slacker!
In the realm of the medical bonanza.....
I was able to spend some time on the phone with the nurse at Mimi's orthopedist's office.  I still had not been able to get in touch with the neurologist to make an appointment, so I said to myself, "Self, just call Mindy's office and see if there is another neurologist you can see.  It's not like you are attached to this specific doctor, you just want a diagnosis."  And that, my friends, is what I said to the nurse.  She, however, read me Mimi's medical file...... Isn't interesting how much you don't hear when you are in an appointment?  Just having the nurse read it aloud to me gave me more information that I have been given in this entire process.  Some of it was great to hear, some of it was painful.  Regardless of what it said, it was very clear that Dr. Stephen Smith is a leading pediatric neurologist, who specializes in CP.  Now, we have not been given a diagnosis of CP, that is why we are going to this doctor.  We are basically at a crossroads.  Either Mimi was born with a minor neruomuscularskeletal deformity impacting the legs, which created her idiopathic toewalking, or she has a minor case of CP.  What is CP you ask, well, click here and read all about it.  Keep in mind that in Mimi's case, if it is CP it would not get worse.  It is what it is.  The only difference would be the kind of treatment.  http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001734

Music for Mimi......
We are gaining headway!  We still have room for more bands, feel free to pass that along!  We also would love products, services, collectables, etc. to auction off in out "Silent Auction" portion.  The most important thing we need is support.  Things are tight for everyone right now, and more than Mimi's physical stuff is her mental stuff too.  Please come, bring your kids for face painting, food and music- to let Mimi know that she isn't weird, but has good friends and family.  I am going to add another teaser later this afternoon, so keep your eyes on the blog!