It's Been Awhile......

So, here we are, the middle of July, and school is weeks away.  What happened to the summer? Geeesh!!!
I have been procrastinating on writing an update on Mimi for awhile now and I am feeling terribly guilty about it.....
What's going on, you might ask. Well, a whole lotta nothing! We are enjoying hanging out with the kiddos, buying baseball cards with Miles, and playing Barbies with Mimi.
Mimi is adjusting and doing really well.  We are getting ready to embark on a new year, a new school, and really, a new beginning.  We are pretty nervous about the new school and friends for her- will the other kids KNOW she is as awesome as we know she is?  It is a scary, scary time.
Medically, we are kind of at a stalemate.  We are currently looking for a new pediatrician for Mikenna, we see the orthopedist on Monday, and the neurologist next month.

The past few months have been extremely enlightening for us as a family.  Nelson and I met with the neurologist at the end of May, just the two of us.  We wanted to get a clear view of Mimi's future and ask some basic questions without her in the room.  It was very informative..... in more ways than one.  We had the chance to look through the bulk of Mimi's medical records with the doctor (I am talking INCHES of files), and we were shocked to discover that there was a least one phone call to her pediatrician by someone close to us who discussed with the doctor Mimi's health.  We were devastated to learn that our doctor had had a discussion with someone, other than us!  Not only that, but we learned very painfully that the pediatrician was told that we (Nelson and I) had misconstrued Mimi's medical history, and that we ultimately lied to get a Cerebral Palsy diagnosis, which is now in her medical record (we think that might have had an impact on the way the doctor treated us at the Shriners- she had a copy of the file as well). Needless to say, it has been a really rough few months.  My heart hurts that anyone could believe that Nelson and I wanted Mimi to have CP, or anything for that matter.  We have come against some pretty tough accusations, and it has taken its toll on me (and Nels) emotionally.  We have received letters, emails, phone calls and the like accusing us of being terrible parents for believing she has CP, that we just want to collect money from the government (that one's my favorite), that we don't have enough faith so that she could be healed....and on and on.

 On the other hand, in many ways the Leupp family couldn't be more blessed.  We are so very grateful to those of you who have stood by us, loved us, and been there in the middle of the night when my heart is broken and I need someone to talk too (or need some escapism, thank you Christy Anderson!).  You know who you are, and I am forever in debt to you.  We are also thankful for those who have opened their arms to Mimi-Miles too- and helped her gain back her self-confidence (Ryan, you have changed her little life.  Thank you for being her "cow," her friend, and her first crush!) Mimi has some amazing little girlfriends as well, whose parents have done a spectacular job of raising them, and addressing the situation with Mimi so that they continue to treat her just the same, they are giving her a glimpse of it feels like to walk with the unconditional love and compassion of Jesus.

Mimi on her "date" with Ryan

When we first got the diagnosis, I think we went into over-drive.  I put on the brave face, put my hurt in a box and stuck it under the bed.  As the shock has worn off, and we move into the "forever" of it all, that box keeps popping up in weird places, like the scary doll in horror films- or the broken doll my dad used to hide in my aunt Darla's car, bed, fridge, etc. I fight to keep it together somedays, I find myself crying A LOT.  My emotions flop from weariness, to sadness, to disappointment, to guilt, to believing that I am a terrible parent and I don't take care of my kids, that my accusers are right, and it makes me depressed.  We, me especially, could use your prayers.  Simply put, it is just HARD, it is battle.  Everyday I have the privilege of seeing the bravery and courage of my little girl, like when kids point at her legs, or just walk up and ask her what's wrong with her.  She's tough and she's sassy!  I really don't know if it is a good thing, but this is a repetitive exchange we have been having:
Mimi: "Mommie? You know what?"
Me: "What?"
Mimi: "Today, I don't feel like being handicapped."
Me: "Ok.  You don't ever have to be, if you don't want to be."
Mimi: "Yeah, I'm not today."
Me.: "Ok."
....... the next day, or even later in the day.......
Mimi: "Mommie?"
Me: "What?"
Mimi: "I want to be handicapped right now."
Me: "Ok.  Why?"
Mimi: "Because I want to use a handicapped parking spot!"
  and sometime: "Because I want you to carry me."
  But she almost always finishes with: "I will always be handicapped when I go to Disney World."
Me: "Why?"
Mimi: "So I can go to the front of the line!"
And then she laughs.  She can successfully make me laugh and cry at the same time!


So we struggle, we laugh, we hurt, we are blessed, and we move forward.  I realize more and more that people care very deeply about Mimi, and it has changed the way people feel or look at Nelson and I.  Please know that we really would do whatever it took for our children.  That we love them unconditionally, and while we may not be handling or doing what some consider to be in Mimi's best interest, we try really, really hard too.

This has always been one of my favorite verses, and I think I have shared it before but it means more to me everyday, "Rise up in the night and cry out to your God.  Pour out your hearts like water before the face of the Lord; lift up your hands to him, and the lift up the lives of your young children." Lamentations 2 :19.  Even though sometimes I feel like I am pouring out my tears more than my heart- Nelson and I desire to lift up the lives of our children.

So that's what is going on with the Mim-ster. I realize this post may seem like a giant downer, but I want to be up front about this journey, that in the struggle there is great joy and perseverance.  That glory can go where it is due, and when Mimi looks back at this blog she will see the prayers answered on her behalf.

A little bit behind....

Oh goodness.  We have been so behind at the Leupp household!  I received a phone call from a dear friend yesterday, who reminded me I still hadn't updated the blog!  So sorry!

Some excuses on why I am behind: the kids are transferring schools, Nelson's mom went to Hawaii to be with his grandmother who is ill, it is final time (lots of grading), and major decisions needed to be made.  Sadly I have been focused on these things, and haven't been good about communication news (and one more, my computer is on its last leg, and rarely can I get on the internet long enough to do anything!).  So I hope that you forgive my tardiness.....

Where to begin?
UTAH.
The Shriners Hospital in Utah is simply amazing.  The people and facility were unbelievable.   We met with a doc there who wanted us to come to Utah every week, and it just isn't doable right now-but we are leaving that door open.  We didn't learn anything new at the appointment, which lasted about 20 minutes, and was just a consulting appointment.  The doctor we saw was big on testing (I recently found out that this is procedure, because it is a research based medical facility,  they run a similar set of tests on every child).  One of the tests was an MRI.  We have received many questions regarding our choice to not do the MRI.  Here are some reasons:
When we met with the neurologist who diagnosed Mimi, he told us that an MRI was not required to diagnose CP, especially since her case is extremely mild.  He didn't want to put her through it.  Another reason is that the Shriners doc also agreed that the MRI is not accurate, but would show other neurological diseases (again, procedure).  Finally, CP is not progressive, and her symptoms will only reflect growth, not worsen over time.  The question many people have is why wouldn't we test her to have a definitive diagnosis?  That is because her diagnosis is definitive.  And MRI test is actually not a definitive test in non-infant children, which is why our insurance ( and most others) will not pay to have an MRI done to diagnose Cerebral Palsy, because it is not considered necessary. CP is a broad term that denotes a plethora of musculoskelatalneurological disorders.  Unfortunately there is no "classic" CP, or list of required symptoms, but can take on the appearance of mild to severe physical and mental disorders.
Also, the Shriners doctor did wonder if Mimi possibly had other neurological disorders.  She wanted to eliminate Muscular Dystrophy and Muscular Sclerosis.  After much consideration between Nelson and I, and asking different friends and doctors, we decided that MRI testing to eliminate other disorders wasn't good for Mimi at this time.  We don't want Mimi's life to be one big doctors appointment.
We loved the Shriners hospital, but the travel and disruption was just too much for the last bit of the school year.  We may revisit that option over the summer, especially since we may lose some of Mimi's medical coverage.

Insurance:
UGH.  We found out last week the our insurance will only allow Mimi to have Physical Therapy 5 more times this year.  They will "reload" her therapies next year if they believe it is necessary.  This is a major bummer, but we know there are other options out there for coverage.  We are going to get her on the Medicaid waiver, but it is a year long wait-list.  Fortunately we have such great friends and family, who have researched alternative medical help.  I will be exploring those options in the next few weeks.

Right now she is doing great mentally.  She knows she has CP, but is beginning to recognize that it doesn't make her weird.
The biggest difficulty we are facing during this time is Miles.  He is really struggling, and much of it has to do with Mimi, but there are some other factors like fear, grief, and worry that are weighing down his sensitive little heart.  He is such an amazing kid, and change impacts him.

Well, I think that brings you all up to speed.  We are transferring schools in the fall, and I think a fresh start will be good for them both. I will keep you posted!  Thanks again for being there!
PS.  Again, I know I am super behind, but Music for Mimi "Thank Yous" are coming!

Going to Utah (or Ohio)!

We are off to Utah on Thursday!  Mimi gets rather confused and keeps calling it Ohio, but we fly out Thursday afternoon, and return Friday night.  This first appointment will focus on meeting her assigned doctor, discuss her medical history, and make a plan for treatment and more visits to Utah.  She is really excited about going, thank goodness, and we hope to learn a lot about what Mimi's future is going to look like.   The local Shriners, Al Kaly, have paid our expenses, and we are so grateful for their support.  We also get to stay, for free, in one of the family hotel rooms that are provided inside the hostpital.  I will post lots of pictures and information as we get it. 

On another note, some great friends of mine are putting to gether a run for Mimi.  It is going to be called, "Miles for Mimi," in honor of Miles of course, and to raise money for Mimi and hopefully our future foundation!  This run will also honor a beautiful girl, who is currently running with Angels on streets of gold, but who's life has definitley influenced Mimi's and we are grateful to share in it.  I will share more info on that as I get it. 
We continue to be shown God's good grace and faithfulness through each and every one of you.  Thanks, as always!

Shriners

We have great news!  This morning we got a call from the Shriners Hospital in Utah.  They told us that Mimi has been approved, and they want to see her on April 8th!  We are so excited that we were chosen to go.  Not only is this one of the best hospitals for Cerebral Palsy, but they will evaluate her completely.  Not to mention that they pay for it all!  If you want to read more about where we are going, click on the link http://www.shrinershospitalsforchildren.org/Hospitals/Locations/SaltLakeCity.aspx

Mimi playing at P.T.

The first visit on the 8th is just a basic checkup, and meeting to create a plan for testing and evaluations.  We will go back in a few weeks for a more lengthy stay, in which most of her testing and evaluations will be conducted.

We continue to be humbled by our daily surprises.  Money continues to come in, medically things are going just right and Mimi's attitude is great.  On a side note, Mimi has declared that she is a "Princess Girl!"  I am so excited I can barely stand myself!  Her 7th birthday is coming up in May and she actually wants a Princess Party!

While she has the Princess attitude, we hope and pray that all of this attention will not go to her head, but help her become a girl of grace, compassion, and hope.  We strive to remind her daily that her beauty comes from the inside, not just the outside.

On a final note, please remember to keep Miles in your thoughts and prayers.  It is hard to be the big brother sometimes.  He still sleeps on her floor most nights, and worries about her all the time.  He also struggles with feeling left out, so we are trying to remedy that with extra Miles time.  On Sunday we decided that a family day was in order, and it was great.  I was invited to attend the wedding of Arial and Prince Eric (Barbies of course), who were well protected during the marriage ceremony by Halo soldiers (action figures).

Thanks again for your continued support and love.  We should get our Shriners Packet in the mail in the next few days with information that I will post.

Success!

There is so much to say here, we don't know where to start....

Last night's Music For Mimi, was probably one of the most inspiring moments of our lives.  The turn out was unbelievable, the volunteers were amazing, the musicians were fantastic, and family and friends in abundance.

At last count we were at approximately $6,000.00.  We am so overwhelmed by this I have cried pretty much all day.  We can't express the gratitude we feel.  Tomorrow, we can pay for Mimi's braces, her last 3 months of therapy, and maybe have enough left cover to pay for three more months of PT.  

However, we don't want to forget all of those who's hard work made Music For Mimi even possible:

Steve Wamberg- who  met with me the morning after my vision for Music For Mimi, and helped us get the ball rolling.  Also, for helping with the sound, coordinating the event, and working with the musicians.

Ben Wamberg- for getting the word out, passing along information between bands and us, his beautiful flyer, and for his amazing work last night!

Steven Goodrich- for helping with the sound, and coming after a long day of work to set up, and take down.

Kristi Leonard- who was there for me, organizing food for the event, and meeting with corporate sponsors- even when she had a lot to deal with.

Kari Bannister- for working in the kitchen and helping with the auction.  We owe you!

Fairy!

Christy Anderson- for working in the kitchen and making great cookies ( and gluten free)!

Robin Todd- for watching the cash, baby!

Kelsie Border- for being the best fairy ever!

Jordan Lane- for rocking the Rapunzel!

Annie Wamberg- for making dreams come true!

Ryan Walls- for being the COW!

Carol Wolfe and Pam Mollencamp- for being so supportive, before, during and after with your prayers and hard work.

The Lundquist Girls- you were so helpful!  And you made Mimi feel so special.

Brandon Sullivan- for being the best brother ever, and for helping me set up all day, and build a stage! I am your slave.

Tyler Bell- for your calm advice, getting musicians together, and keeping me sane.  

Tim Bannister- for helping set-up and take down, and being Nelson's baby sitter!  Thank you!

Ben Lew- for the amazing logo!  It looks great.

Rapunzel

Cindy Leupp (and Dave too)-for the many supportive telephone chats, cookies, and hostessing.  Thank you for being there for us.

Wilma David- for her constant prayers, her cinnamon rolls, and love.

Monica and Sophie- for being great face-painters!

Richard Blanchette, and Kevin Hodges for doing the odd jobs in set up and take down.

Carol Sullivan- for EVERYTHING.  There isn't anything that I can't thank you for.........

Thanks to all of the great and beautiful people who donated items to be auctioned-we made so much off of your items, those who made delicious cookies, and those who quietly put money in the jar.  We can't thank you enough.  

And finally, 

Mimi with Ascend the Hill band members!

Miles Singing

Thank you Miles Leupp (for being wonderful on stage and off), Brown Eyed Girls, Rohman Holiday, Kellie Prophet (I need a copy of that song!), A New Downfall, Warrington Station, Avila (I loved the "Mimi" written on the speakers!), Replacing Judas, The Ember Days, and Ascend the Hill ( E.D. and A.H., thank you for your prayers, and love-it was an honor to meet you and have you there). 

Mimi with A New Downfall

I know that as soon as I post this, I will remember those we have forgotten to mention.  But we are no less grateful!  I am sure we will have to put add-ons!  Again, thank you all.  You have literally changed how our little girl will walk into her future.  We adore you all.

Mim with Avila

The Big Day!

It is finally here!  Music for Mimi is going to be a huge success!  So many people have volunteered to help us, make cookies, serve in the kitchen, do face painting, dress up- it blows my mind.

Miles and Mimi could not sleep last night, they were so excited.  Miles has been practicing his music so that he can "open the show," with some Johnny Cash and Charley Pride.

I can't wait to see you all there, and thank you for your support.  I know that tonight is going to be amazing and we are all going to see some spectacular things.

Just in case, here is the info one more time:
2315 N. Circle Drive
5:00 pm
Music Starting At 5:30.

Fun, food and fantastic Music!

The Countdown Has Begun!

Music For Mimi is just around the corner!
Here are the details one more time, just in case!
March 5th, at 5:00 pm
Music starts at 5:30
Highland Park Baptist Church 2315 N. Circle Drive

Mimi is so excited!
We are still in search of some characters (or costumes) for meet and greets.  If you have any ideas, or are willing to be someone else for the evening-let me know!

We are making the emotional and physical adjustments to the news of Cerebral Palsy.  We are chatting with her school, and Physical Therapists for the best routes and treatments to correct her spine, legs and arms (or at least keep the bones from hardening in these odd angles).  We are so moved my the support and love we have seen through this time.  Music For Mimi is going to be a great success, in large part, to all of you.  Thanks again, we love you!

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!

Music For Mimi Information!

"Music For Mimi"
Where: 2955 Professional Place 80904
When: March 5th
Time: 5:00 PM-?

We will have dessert, a silent auction and of course MUSIC!



Here is a little teaser.  Rohman Holiday! Click the link to hear some of Leah Rohman's music!

http://www.facebook.com/pages/Rohman-Holiday/175488182466626?v=app_2405167945

What we could use your help with:
Pass the word around!  We would love to have more bands and musicians, but we need a commitment by February 12th so that we can have their names put in the information and on T-shirts we are having made.
Also, any product, service, art, object etc, that you or someone you know would be willing to auction off would be really great.

I hope to have some shirts up for order that say "Music For Mimi" in a few days.  These will not be the concert shirts, but shirts that support Mimi.

Again, I cannot begin to express our gratitude to all of you.  Your love and support have seen us through this.

Excellent Night....

I know that I already posted once today, but I wanted to fill you all in on Mimi's appointments.
The cast removal went great, no accidental cuts or ouchies.  She also had only a few skin issues, and was so happy to get them off.
We went and saw the doctor, and Mindy Siegal was amazed by her progress.  We couldn't believe our ears when she told us Mimi had made up for 6 years in 6 weeks.  All this time we were hearing that she wasn't making progress, and we find out she has made a ton!  Mindy also said that it was unacceptable that Mimi was feeling bad at school, and said she wanted to give her a two week break from the casts (one: for her mental health, and two: to see what her muscles look like in two weeks).  It will also give her skin a much needed break.  Tomorrow she will be herself again!
We know that it is because of the prayers and encouragement that you all sent our way.  I am crying with relief that she won't have to endure it for two weeks!

Mimi at Dr. Siegal's Office

Now for the other thing.....
Mindy would like her to see a Neuromuscular doc, and we will make that appointment tomorrow.  It will probably be a few months out, but we will get some answers.  Mindy said that she would not have considered CP until she saw Mimi's arms, but even if it is, it is not likely to be a major issue.  She understood our basic need for conclusion, and wanted us to get that.  It made sense to her that it could be a possibility given Mimi's premature birth, etc.  So at this point we are overjoyed with the news, and the change from such a horrible morning to such a great night.  I think I will sleep tonight, better than  I have in a long time tonight.
With all of the good news, we have a venue and a date! Music for Mimi is going to happen!  Mark your calendars for March 5th!  More news on that after Wednesday afternoon.
" I am delighted to tell you about the signs and wonders that the most high God has done for me. How great are his signs!  How mighty are his wonders!  His kingdom will last forever, and his authority continues from one generation to the next." Daniel 4:2-3

A Rough Start to the Day....

This is just a quick post to ask for prayers and thoughts for Mimi today.  If you had a chance to read the last post, you know that she had a bad day on Friday at school.  We thought we had worked a lot of that out, but when we got back to school, she had a breakdown.  Because of the temperature, they had in-door recess today.  Which means, she had recess in the gym.  As I wheeled her toward the gym she started crying and saying, "I am not going in there," "Mommie please don't make me go in there," and so on.  It was awful.  Her good friend Miss Tracey (who is a friend of mine and works at the school) stopped and talked with her.  We got her to quit sobbing, but she was still pretty upset.
I went and talked with the school councilor before I left to let her know what was going on, and that Mimi might benefit from talking with her.  It was really hard to get in my car and drive away when I knew that she was hurting and scared.  Fortunately she only has to be there two hours before I go get her to take her to her appointments, and many of the staff said they would pop into her classroom and check on her (thank you Monica, Tracey, Delinda and Leeni).
I think too, that she is worried about getting this set of casts off.  They accidentally cut her leg the last time and it frightened her.

Please pray that we get some answers today, and a clear plan of treatment and physical therapies.  I believe Mimi will feel much better if she knew exactly what was happening, and when it would all be over.  She feels really out of control and doesn't sleep well.  She has nightmares about her teeth falling out, and being moved into a tiny room, and other weird stuff that tells me she is mentally struggling.  I asked her to try to be brave (even though I don't think I am setting a good example here!Ugh.)
Thank you thank you.

Blue Casts.....

The Physical Therapists decided to recast Mimi's feet on Thursday, even though there was some redness, swelling and bruising.  However, she gets them off (tomorrow), Monday so that her orthopedist can see her legs.  

We are really anxious for this appointment, to check out what the future is going to hold for Mimi.

Please send your thoughts and prayers to us tomorrow as we go to that appointment.  

Also, pray for Mimi.  The realization of it all hit her really hard this week.  With Disney World over, and her schedule starting to maintain some normalcy, it caught up with her.  She had a really rough day on Friday.  They had an assembly at school, and because she had her wheelchair, she had to go in last to be closest to the exist (in case of emergency, wheelchairs have to be by an exist.  Who knew?), and she felt like everyone was staring at her.  After I picked her up she felt sick, was really stressed, was crying and put herself to bed.  She didn't get out of bed until yesterday evening, when Miles, Nelson and I sat her down and talked to her about how she was feeling.  I couldn't have been more proud of Miles.  He was so good to her, and helped explain things to her.  He has always been her closest friend, and I am so thankful that he had the discernment to know what to say.   We saw an immediate change after we talked.  She got dressed and was ready to face the world.  But school is getting difficult for her because she feels weird.  She feels like she doesn't fit.  She isn't handicapped in the permanent sense, but she doesn't feel normal either.  

She is also really excited about Buddy Basket Ball at church, and we are hoping that goes really well.  She missed yesterdays practice because of her breakdown, but I know she will be ready to go next Saturday.  

The MOST EXCITING NEWS!!! Is that we have found a venue for Music for Mimi!  I am chatting with my cousin Kristi this afternoon about date (I couldn't do this without her) and I will post the details tonight or tomorrow!  I feel like a huge weight has been lifted and we are going to get the show on the road!  So spread the word!  We are also thinking about doing a auction or raffle, so more news to follow.

I also want to thank you all for your continued support.  As of right now, we have received some amazing gifts, and we are on our way to paying off Mimi's day braces.  Soon we can start paying on the night braces.  Like I have shared before, I am completely overwhelmed.  I think it is safe to say I have cried everyday, all out of feeling loved and blessed.  So thanks to all of you for your love, gifts, and support of my family.  

OUCH!

Yesterday Mimi had her red casts taken off.  There was a lot of swelling, bruising and redness on her feet and skin.  That was not a good sign.  Here is a picture of her feet when we took off the casts.  They look like alien feet!

It is hard to see in the picture, but around her ankles and joint it is really discolored.

We have another appointment this morning to look at her skin and what is going on there.  I will let you know how that goes.

  Thank you for all the information and resources!  I am getting in touch with the CP Association, who will help children even if they do not have a CP diagnosis.  We don't have a diagnosis for Mimi that explains why she is an idiopathic toewalker, but we meet with her orthopedist on Monday. We have never really considered a diagnosis, but have found that with one, we can get some help.  I am uncertain if they will even test for CP (cerebral palsy)  I know this is a short blog, but not a lot to report!  I will have more info after her appointment this morning.  Thanks again!

A Great Time!

Disney World was fabulous.  We had such a fantastic time.  The major highlights of the second half of the trip were totally different depending on which child you asked.  For Mimi, it was meeting Rapunzel and Flynn Rider.  Now Mimi has yet to get into the Princess scene, but she loved the movie "Tangled" and was very excited to meet the main stars!  Here she is.......

She loved getting to talk with them, and Flynn even showed her his special bag, and what was in it.....












For Miles, he LOVED the Lego store in Downtown Disney.  He created several lego people, and got a few lego sets....

We were a little worried about Miles because of all the attention Mimi was getting, but at the "Lion King" show, he was asked to come and be a part of the show!  He had a great time, and you know he loves the stage!

Another exciting moment for Mimi was the kitty Marie.  Marie was walking around the park and stopped to grab Mimi's hand.  They walked around together for a while, and then she signed Mimi's casts.   Mimi was so excited!

On the last night we were there we did some last minute shopping.  While we were out Mimi was given a crown and a wand, by a Disney employee.  Surprisingly she actually wore them!

     We got in late last night, and the kids are off at school.  I will post tomorrow, after Mimi gets the third cast removed and let you know what they say.  She is in a lot of pain today and insisted on being in the wheelchair.  I am not as worried about her because she is literally surrounded by people who love her at school.

Disney World!!!

Okay.... I finally was able to get the internet connections from our hotel room to work!  Phew!

Alright, let's back track a bit.....

On Monday, Mimi had her third set of casts put on, but before they put them on they let her jump in the PT gym.  This is her acting crazy! For the color  she chose red of course, because it would match with Mickey and Minnie.  Unfortunately they really bent her legs, and one leg she can't hardly use at all.
   This is Miles and Mimi waiting for the airplane to Florida.  They were so excited!

When we landed in Florida, two things happened to get our trip off to an amazing start.  The first happened as we were being loaded off the airplane, and the man who brought Mimi's chair to her stopped and prayed over her.  The second happened as we were getting ready to get on the Disney shuttle, a man walked up and handed Mimi $20, and told her to buy something special, "Like ears."
    I was completely taken back by both of these events, but it gave me a sense of peace and hope that things were going to go perfectly for Miles and Mimi on this trip.
   Here are the "ears" Mimi bought the second we got there.

    For those who know me well, they know that I HATE crying more than just about anything (other than puppets of course!).  But since we have landed, I have teared up, or cried several times.  All of these times were out of joy and gratitude.  One more example is the parade we saw at Magic Kingdom yesterday.  We used the handicapped seating, which got us really close to the action.  Mimi was most excited about the parade, and the second the music started, EVERY single character stopped in the parade and hugged her- unless they were on a float, in which case they blew her a kiss, threw glitter at her, or waved.  She was in heaven, and I was a wreck (so was my mom).  It was the most incredible experience Mimi has ever had.  What made it even better was that each one noticed Miles too, and he got to shake hands with them all.  Here are a couple pictures of the parade.

You don't have to know Mimi very well to know that her favorite thing in the whole wide world is Barfy (or Pluto in the real world).

       Today we went to Animal Kingdom, and Mimi got a face paint to look like her favorite animal.....A zebra!

So far it has truly been the "Most Magical Place on Earth," and has made the kids so happy.

Physically, Mimi has done really well.  She hasn't walked much because of the extreme discomfort and loss of balance, but hasn't missed a beat.  Being here has brought to our attention the struggle we are going to have when she goes back to school.  As they continue to bend her legs, she will lose more and more mobility and instead of being able to walk more, it is obvious she will walk less (opposite of what we thought would happen).

I hope to post more soon, thanks again for staying with us!

Rollin'

We are getting ready for Disney World!  Keep us in your thoughts and prayers as we get ready to fly out in the middle of a snow storm (and my poor baby Miles is sick.  We are praying for quick recovery)! Also, Mimi is recast tomorrow at noon, and this time she does not get a break, but will go right into the next set.  Yesterday was the worst day she has had as far as pain goes.  She used either the walker or her wheelchair all day.
Last night Mimi was able to spend some time with some friends, and it was adorable to watch as her friend Selah pushed her around.

Hopefully I will have a chance to blog to you tomorrow, and show you pics of the next casting, but if not-my next post will be from Disney World!!!
Again, I cannot thank my parents enough for taking us on this trip, and all of you who support us constantly with your love.

Gratitude

On Thursday, Mimi got her second set of casts.  Of course she picked one of her favorite color, ORANGE!  She did really well.

Also on Thursday, I had one of the most life-changing days of my life.  Without going into detail, I will just say that we were given a gift for Mimi, that came from heartbreaking circumstances, but will help change Mimi's life.  I have wanted to blog about it since then, but I get all emotional and blubbery!  I want to say thank you, thank you, thank you.  You know who you are, my dear, dear friend.
Mimi also went back to school on Thursday, and she did great!  She used the walker for balance, but she did not need it yesterday.
She is getting so excited about going to Disney World.  I can't tell you all what an amazing gift this is for all of us.  My parents are extremely generous, and I can't thank them enough.  I think this trip is going to have a major impact on Mimi, and how she remembers this period.  I also hope that she learns how life is for those who have life-long disabilities, and can learn grace and compassion through this.

This morning has been a little difficult for her.  For some reason the skin on her upper legs is really tender.  I hope it is just soreness, but if it persists I will have to call the Doctor.  Other than that, she is ready to celebrate her cousin Megan's Sweet 16 Birthday, and have girls night with some of her little girlfriends tonight (Mimi got a movie gift card from Nanny and Papa for Christmas, and she and a few of her friends are going to see "Tangled" tonight).
I hope I have shared the intensity of the gifts and support we have been given this week.  From those willing to help with the fundraiser (Monica and Sofie, Steve and Kristi), to those willing to provide things to auction off (Lori) and those willing to perform or find bands who will (Leah, Ben, Brittney, Kellie), and the money sent to Mimi (you know who you are), and all of our friends and family sending encouraging comments on here and through facebook to Mimi.  Our family has been humbled and touched by those reaching out to us during this time.  As I told a friend, it has been heartbreaking to know that I cannot provide medical care for my daughter who I love beyond measure, but healing to know that I have so many who love her as I do.  We have been blessed.
"Pour our your heart like water before the face of the Lord.  Lift up to him the lives of your young children." Lamentations 2:19

First Cast Removal!

Today Mimi got her first set of casts off.  They are giving her 24 hours to have them off so we can observe any skin decomposition (yes, apparently the skin can decompose when it doesn't get enough air...gross). She was a little nervous about the saw they use to cut it off, but she did fine.
Aside from the fact that her feet were super stinky, they looked pretty good.  No blisters or rashes, so her body tolerated the casts very well.
   A down side was that her legs began to spasm as soon as the casts were off and she started to walk.  Since her feet were bound inside the cast so that she walked on her heals, the adjustment has been pretty painful.  She is worried that tomorrow's casting will really hurt since she is already so sore.
   Tomorrow she goes back to school (after casting) and it is her first day back from vacation.  Unlike her brother Miles who loathes school, Mimi usually really likes it-but she is worried about tomorrow.  Because of the soreness and tighter bending of the leg she is going to use her walker, and she wonders what the kids will say and ask.  I will let you know how tomorrow goes, but knowing the amazing teachers at her school, and her buddies Tracey, Monica, Imani and Aunt Eileen will be around so she should have a great day.
   And finally, the most discouraging news of the day is that her copays for her Orthopedist have gone up.  Ohh the joys of medical coverage.  On the other hand, the best news is that some wonderful people, the Prophet family, gave us the cadillac of all wheelchairs for Disney World!  Mimi loves it. It is bright blue and has all kinds of bells and whistles!  While the manual self propelling wheelchair is perfect for her to use herself, this wheelchair is an answer to prayer.  To rent one at D.W is 15.00 a day, or 50.00 a day for a nice one.  This one is going to make her trip so much better!  It was such an answer to prayer.
Thanks for sticking with us!

The New Year

Over the past few days we have experimented with several mobility options for Mimi to help her get around at school.  While I think she will be totally fine, and could walk the majority of the time unassisted, she is afraid.  The first option is the self propelling wheelchair that some great friends, the Harpers, are letting us borrow.  Here is Mimi trying it out at the mall.

Yes, she is making a "poor me" face, not because of the chair, but because she pinched her finger.  This is a great chair when her legs are really, really sore.
Our other option is the walker, on loan to us from the Bannister family.  Mimi liked using this walker as long as it was in the "pull" mode.  She refused to attempted to push it because it made her feel like an "old person," she said.  The great thing about the walker is that it has a seat for when she is tired, she can just pop it down.  I think the walker is the best for long distances, like when shopping!

So far, some of the struggles in preparing to go back to school have been finding warm clothes that she can fit over her casts.  For those of you who don't know Mimi, she is a fashionista!  She loves designing clothes, creating outfits for herself and her stuffed animals, and the idea of wearing sweatpants was almost life threatening to her!  However, once we put a skirt over it, she was fine.  The other issue has been her cold little piggies!  But thanks to Pam Mollenkamp, Mimi had some very fashionable cast covers as you can see!  And they were in some of her favorite colors.  Thanks Pam!

Sorry about the photo quality, I took them on my phone with the wrong settings.

Right now, we are in the process of setting up an account for Mimi.  Several people have asked about donations.  We are hoping to have all of that set up in the next few days.
Also, we are still waiting to hear back on the venue for our first "Music for Mimi" fundraiser.  If you want to play or sing, by yourself or with a band, that would be great!  If you know of musicians who would donate their time, please direct them here!  Keep us in your thoughts and prayers as we try to get "Music for Mimi" on its feet.  We have been overwhelmed by the support and love.  Also, if you are a facebook user, please visit Mimi's fanpage also titled "Music for Mimi."  She asks all the time for me to check and see if she has any fans.  It makes her feel special.
I am hoping to post later today with some info about the fundraiser, thanks again for everything!