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!