Madison's Story

The trip of a lifetime!

2012-01-22T07:06:00.000-08:00

No winter surgery for first time her life? That calls for a celebration, and that we did!
Just back from a 7 day Bahama cruise and she LOVED it...so did I!!

Summertime and the living IS

2011-07-10T15:05:00.000-07:00

As Madi was being wheeled into her February surgery, Dr. Deeney announced, "I have great news. This is your last VEPTR surgery".
I guess he thought that would be wonderful. But, Madi being Madi, she started to cry. She thought it meant she wouldn't see her nurses, doctors, and child life specialists from Children's Hospital of Pittsburgh again.
Dr. Deeney assured her she has to come back for visits- but not surgery, and she eventually calmed down.
Leaving the floor after recovering was just like a movie. The nurses lined the halls and hugged her as she left...they have literally seen her grow up before their eyes.
I'd like to tell you I am relieved. Ecstatic. Over joyed. But I can't. I can tell you that the end of the VEPTR journey is simply a turn in this long road. Madi still has joint pain and swelling; she "sprains" anything and everything easily; her skin is still painful; her eyes still concern me... She is only 4'4" and will not be much bigger... and for all the wonderful, amazing, miraculous achievements...I still have "mama worry".
Madi is one of the first 100 kids EVER to have the Vertical Expansion Titanium Ribs implanted in her body. This procedure, undoubtedly, saved her life. Now, via facebook and twitter and social media onslaught, so many "newbies" to the VEPTR program reach out and have questions for us. They are nervous, scared...wondering. I distinctly remember that fear and those feelings, and I WISH I could tell them "it will all be ok"> But, I cannot. I do know that, for us, it was the ONLY way... and that everything we handle from here on out is just another step on her journey.
Middle school was "painful". High school looms next year. Madi is bouyant, joyful, a happy sprite of a pretty faced girl who loves music, voice, acting, art, dance and baby sitting. Like all other almost-14-year-old-girls she just wants to be accepted, appreciated and included. That is not always the story.
I realize, partly from working daily with teens, that her hurt feelings don't just stem from the things that set her apart from her peers-- there are plenty of bullied and ignored pre-teens and teens in this world who appear perfectly "normal"... but I worry about her more for her differences, lest they mask her exceptional ABILITIES.
But now, it is Summer. She just had a grand time in a performance of Bye Bye Birdie, was awarded THE highest honor in her Nana's name at dance recital, got an 89.7 overall grade point avg for 8th grade, and scored high in both vocal and percussion NYSSMA solos.
She is enjoying the pool in our back yard, babysitting, and her true friends... and has made many exciting plans for this SURGERY FREE Summer... so living IS easy.
Now, if I could just stop WORRYING!:)

Here we go... again!

2011-01-26T10:15:00.000-08:00

Madi will undergo surgery #39 at children's hospital of Pittsburgh, PA on Monday, Feb. 28th.
We don't usually have surgery on Monday, so this means pre-op is Friday and we have a weekend to kill in Pittsburgh...hope to find something amazing for her to do!
She is having a great deal of joint pain and issues, so we are hoping that we get some answers and are able to see a pediatric rheumatoid arthritis specialist while there.

Madi is zooming through 8th grade, currently strongly involved in Rhonda's Footeworks dance company; Stage Notes voice group; theater group and select at school and art club...

She is my inspiration every day!

The Eyes

2010-10-13T04:42:00.000-07:00

Yesterday, we traveled to Syracuse for Madi's bi-annual eye specialist appointment. One of the "perks" of her syndrome is that she has REALLY awful vision, severe cataracts, and headaches. She has been seeing the specialist, Dr. Noel, since first grade.
We REALLY like Dr. Noel. One of the things I can tell you is that it is IMPORTANT to find doctors you LIKE. People who are compassionate and willing to take the time to see your child as someone special... we have been lucky to find so many of these doctors along the way, and Dr. Noel is a favorite!
He did not have great news. Madi's vision has reached the 20/40 mark where we need to consider getting the cataract surgery. Madi did not take the news well. Dr. Noel saw her tears and said, "six more months...we will wait six more months". He knows how much she has been through and understands that ANY surgery, no matter "how small" is a huge ordeal for her. I called him a "softie" and he did not deny it!
Madi is struggling with a low grade fever, cough, and general feeling of crappiness. Kept her home from school to see if we can catch it before it becomes bronchitis or pneumonia. For Madi, it is "that time of year" when illness strikes.
Sigh.
Another day in the books, folks!

Update

2010-10-11T19:55:00.000-07:00

Madi had quite the difficult surgery in August. Dr. came back after x ray and asked her if she had been experiencing more pain than usual...she just shrugged... " a little I guess".
hmmm, I guess.. sometime a few months prior the "hook" in her shoulder had popped out of the bone, and was eating away at muscle tissue, bone and skin.
SO, instead of an adjustment on both sides, we had to do a replacement on the left side.
Recovery was very painful and LONG. She still is not back to "normal Madi activities" like dance, phys ed, etc. This is very difficult for her, as those who know Madi will attest. She is singing, in the school musical, and pounding away on her new drum set (thanks, Dave)...but misses her dance classes and friends ALOT.
She is a teenager now. If you go back into the archives and follow her journey, I think you will be just as amazed at her being a teen as I am! She has gone through so much...too much... and I am so immensely proud of her.
She is all things good in my life... a hard working student, a song bird, a smile that makes my smile grow bigger.
She is my blessing and I only hope that the end of this long medical journey draws nearer. She may never be "big" and she may never stand "tall", but she is has THE biggest heart and tallest aspirations of any child her age I know.
I think I like her a bit....

Update...it's time...

2010-07-13T18:49:00.000-07:00

Well, summer is underway. Madi had a GREAT experience at CRANE youth music camp for two weeks where she studied voice.
She is swimming, having sleepovers, dancing, learning to play guitar and having the most "normal" summer in years, since surgery has been postponed.
Til...today...found out her surgery will be on 8/26 in Pittsburgh, PA. Getting closer to surgery #40. Wow.
Between now and then, Madi will go to the FCCLA leadership council and represent Beaver River for three days, compete in dance at the Lewis County fair, and go to Water Safari ("where the fun never stops"). Most importantly, she will celebrate her 13th birthday with a few memorable parties and many wonderful friends!
It is harder and harder to hold on to what it is that has brought us here- to the somewhat blurry acceptance of these surgical "procedures" and blips in her busy teen life. Make no mistake, nothing is easier, it just "is"...what "it is". Until you have gone through this strange journey on your own, it is impossible to explain. When you live it, you know it.
I love her as much/more than I did thirteen years ago when we started on her miraculous journey... she does know that, I am sure.
I have had so many wishes fulfilled for her, and still have so many more "waiting in the wings". For now, summer opens its' arms to her...my sunshine!

Surgery #36

2010-02-02T20:14:00.000-08:00

Madi will undergo surgery #36 on Thursday, Feb. 11th at Children's Hospital of Pittsburgh.
Physically, she is ready. Emotionally, not.
Grampa will ride on down with us, again. We are leaving on Monday in case we hit bad weather. Need to be in Pitt on Tuesday for appointments early Wednesday.
The new hospital is still an adventure, and this time the new Ronald McDonald house is open. It is part of the hospital, so that will be incredible for me!
Madi will miss one week of school and then rest up over winter break. Hopefully, she will be ready to at least go back half days after vacation.
Anyone wishing to send cards, please send to our home address: PO BX 144, Croghan, NY 13327, as sending to the hospital is always "iffy". Many times, they get there after we have left...
Your prayers and good thoughts are, as always, appreciated.
For updates, please see facebook and search for rhonda foote... it is quick and easy to give updated info there while she is in the hospital.

Madi's 12th Birthday!

2009-08-19T18:53:00.001-07:00

Miracle Dinner '09

2009-08-01T05:34:00.000-07:00

Summer is speeding by and I owe you all an update! Pics above are from the Miracle Dinner held this past week at Pierrpont Manor. Always a wonderful evening for these amazing kids!! Madi is recovering well. Already dancing and "sorta" swimming (keeping back as dry as possible, I promise Dr. Deeney).
Skin issues plaguing her summer... feet especially.
Saw Dr. Noel (eye specialist) last week. Cataracts are much worse (must contact school) and left eye is "quite blind" even with glasses. He anticipates surgery within the year. Madi's response... "wonder if this will be #36 or #37, depends I guess on if I go to Pitt again first". (?!! she kills me).
Got new glasses...not covered by insurance. so NOT in the budget.
Madi turns TWELVE two weeks from today. As always, a huge celebration is in order. Another birthday beyond ten... another milestone unexpected... another reason to believe in MIRACLES!!!!

recovering

2009-07-09T16:13:00.000-07:00

Just a quick post to let you know that Madi is in her room at the new children's hospital recovering.
Dr.Deeney says all went "as planned" so, by now, we know what to expect.
The new hospital is spiffy, the room is private and actually has a couch for me to sleep on:) AND there is a shower in the room- yippee!
Her pain is constant and she has spiked a bit of a fever- this is all "usual" for night one. She does want ginger ale and water, so that is a good sign:)
Tomorrow will be a better day!

Surgery July 9th

2009-06-28T19:52:00.000-07:00

We leave on July 6th for madi's July 9th surgery at Children's hospital of Pittsburgh. This is a double expansion... hoping for some more height and less pain this time 'round.
We are excited and a bit anxious (madi more anxious than excited) to see the NEW hospital!
We will go to Kennywood theme park on Tuesday before pre-op Wednesday and surgery Thursday. This will make operation #35... each one seems to take a bit more of a psycholigical and emotional toll on My Girl... but it is what it is!
She has had a great start to summer-- an undefeated softball season, successful dance recital, chorus award at the spring choral fest, FFCLA leadership award at middle school awards, and an 89.9% overall average for sixth grade... She has been swimming, having sleep overs and will start piano this week!
As usual, she is just sooooooo inactive:) ha... don't know how I keep up with her some days. But, as usual, we ask for your positive thoughts and prayers in our time of travel and trial!

Not arthritis... snap, crackle, POP!

2009-02-04T06:31:00.000-08:00

OK, we have gotten some results... it is NOT arthritis. When we saw the local ortho specialist, he had scary fun popping all of Madi's joints in and out... literally. He was shocked. Wrists, elbows, shoulders, knees and ankles... pop in/pop out. "POP"! He said, "gosh, that isn't supposed to happen". Xrays revealed that her joint alignment is like a mountain top... all over the place, especially obvious when looking at her finger alignment in an x ray.
SO, we believe it is all just another new-found part of her syndrome (Condraddi Hunermann, very rare). He said to let her do activities, as much as possible, without a brace... then ice and and brace after. He said that she might need to start sleeping with wrist braces so that she doesn't roll over and break her wrist in her sleep, as her wrist joints are soooo loose.
And she signed up for tennis team. Unbelievable. Like I can stop her.
We are going forward with the diet plan anyways (so much for mommy popularity!) ... Madi says "HI" to Janey... misses HER!
Just wanted to let y'all know whazzup.
Thanks much, R
-----

Arthritis?

2009-01-30T07:11:00.000-08:00

So... Madi has always had joint pain... knees, ankles, hips... and we have always written it off as part her scoli.
Lately, her writsts have ached really bad; esp. the left one. We have x-rayed and checked... yesterday, her pediatrician said that she thinks it is arthritis. We have started the screening process.
Research tells me that we probably hit the mark... unfortunately, she cannot take motrin or other suggested pain relievers because they thin her blood and we don't use those due to surgery precautions.
I am going to try the natural route... vitamins, diet adjustments, etc. along with gentle stretching and exercise.
Madi is quite upset about all of this, and rightfully so. Me, too....

HOME

2009-01-12T06:40:00.000-08:00

Got HOME late late late last p.m. and Madi is hurting...the car ride always does her in.
I am not looking forward to unpacking the car in the bitter cold but I am looking forward to a hot shower in my own bathroom and making some homemade chicken soup today.
Comfort food for my girl...

It's weird, in so many ways I feel as if it has been a very long week, and in other ways it is as if no time has passed. Madi and I were talking about how every trip to the hospital is so completely different and yet, totally the same.

I promised her chocolate chip pancakes and cranberry juice and bacon with ketchup on the side, so must get on to the important things in life:)

Thank you for "being there"... again.

Back at the R McD house

2009-01-10T11:19:00.000-08:00

Well, the hospital is CROWDED and they were desparate for rooms, so they quickly bumped her outa there... we are at the R McD House in Pitt for a day or two while she gets (literally) back on her feet.
There is freezing rain here and snow on the way home, so that is fine by me.
They are having a special dinner at the house tonight to get ready for the BIG football game here tomorrow...this city is HYPED!

It is Madi's last trip before the new hospital is up and running and the new house is attached to the new hospital...so it is a strange and sad goodbye to many things that have become a staple comfort in her little lifetime.

Those of you who know Madi know that she is a true creature of habit. She gets comfort in controlling the little things because so many of the little things are out of her control... understandable.

So, we had to say goodbye to the playroom, and the floor, and the lobby... and the nurses station. Had to take pictures of the ceiling tile she painted with her beloved friend, Tricia, two summers ago on a particularly long stay.

Tonight, we will slowly march the halls and rooms of this great old house on Shadyside in Pittsburgh and take photos of the kitchen, living area, playroom, office, hallways...all memories that, someday, will be fond and dim and faraway in her mind and, I suppose, mine.

It is difficult to explain this sadness that overtakes her in these instances. So much of this hospital and house has been very good with the very bad...

Very-ables!

Til tomorrow... Rhonda

whew!!

2009-01-08T14:24:00.000-08:00

Madi is finally settled in her room...

Hit the same day surgery at 8:30 a.m., she was SICK with nerves...started vomiting at 5 a.m. (poor baby).

Finally got into the op room at 10:45 a.m. The surgery took about 3 1/2 hours. She gave us a bit of a scare in the recovery room-- her blood pressure sky rocketed along with her heart rate, and she couldn't stop shivering. I have never seen her do this before, and personally went into a full blown panic attack (imagine that). I had to leave and take a breather in the hallway before I lost it completely, went back in 3 minutes and we got it (all) under control.

The floor is hopping, so I am personally shocked that we have a PRIVATE room (note verbal cartwheels of joy and appreciation). At this point, Madi is resting, Grampa is snoring in the corner and I am updating the blog on an ample load of caffeine. Yup, I should be on hyper mode for the entire night.

We hope to recover quickly and smoothly. Tonight, the first night, is always a long night... but, this, too, shall pass.

so far...

2009-01-07T12:10:00.000-08:00

We are lucky to have gotten a room at the Ronald McDonald house, as the city is buzzing for the big football game this weekend and rooms are hard to find.

Madi has undergone "the usual" round of testing and appointments and, after a really exhausting morning of fighting with insurance (somehow, don't even ask how, there was no approval for her procedure when we met with her surgeon today)... we should be a-go for everything tomorrow.

Madi is second of three VEPTR procedures tomorrow and will be having a double expansion. Dr. Deeney says she looks very good and cleared her to (OMG) join the tennis team. (Watch out, Bosco, here she comes)!!

There are two boys in line with her tomorrow- 7 year old Brett from Michigan will go first and 14 year old Mitchell from near Rochester will be last. Mitchell is quite a talker, and makes Madi look quiet. REALLY!!!

It is cold and rainy here-- but no snow like up home, from what we hear! Tonight, I will take Madi to her fave lil Italian restaurant, Minetellos. We will split stuffed shells and chocolate cake... tradition... very important to Madi to control what she can on this "day before the day".

Right now, I am doing laundry and she is visiting with Brett "so he won't be scared"... always the Mama Bear!!

I will post briefly when Madi is in surgery -- and after she is settled in her room. Don't be alarmed at the amount of time between these posts, as it can be HOURS.

I have my coffee, my knitting, and Madi's prayer pillow all set for my end of the day:)

Thanks to friends and family for prayers and positive thoughts!! -Rhonda

Here we go...again

2008-12-29T20:45:00.000-08:00

Madi, Grampa and I leave one week from today for surgery on Thursday, January 8th, at Children's Hospital of Pittsburgh, PA.
I have done the usual...insurance clearance, work organization, school notification, Ronald McDonald House arrangements, car check, finances tightened, friends contacted... it seems that the list of unusual for most has become the usual for us. Madi has been having surgeries for ten years now... and she has been going to Pitt since she was FOUR years old.
It is incredible, really. Inconceivable in so many ways. Our worries never cease, her nerves never steady, my tears still fall. We spend many nights at this point sitting up late together, talking... or not. Just being. Together.
The need to "just be" is indescribable unless you have been there, done that. We never doubt that all will go well. We always doubt that all will go well.
It is that simply complicated, really.

We will, as usual, keep you posted via this site on all that occurs leading up to, the day of, and following surgery. We thank you for your prayers and positive thoughts and want you to know how much we will miss all of our friends and family...

Rhonda

Featured in American Girl magazine

2008-10-21T07:16:00.000-07:00

Tuesday, October 21, 2008
American Girl Magazine Honors OUR girls!

Rush out and pick up the December 2008 issue of American Girl magazine on shelves now!

Madi and Izzy are featured in this issue as girls who give back to their communities. The article is about their involvement in OUR outreach company!
There is a picture of the two of them in costume, too!

I am QUITE proud:)

-Rhonda

Madi's latest chorus concert video

2008-10-15T09:49:00.000-07:00

Madi sings... BRCS Fall concert.
Madi is excited to have been chosen for Bi-County Chorus, too!
We also learned today that Madi has been chosen as a student council representative.

Not a bad start to sixth grade!!

Painting For Miracles

2008-10-01T06:43:00.000-07:00

Visit

www.paintingformiracles.com

to see the beautiful painting done in honor of Madi's Champion Story.

Also, the other paintings are wonderful, too!!

Madi and Friends- Champions Across America Tour Video 08

2008-09-30T06:37:00.001-07:00

The remainder of Madi's glorious summer...

2008-09-24T15:16:00.001-07:00

summer so far from madi's view!!

2008-07-20T11:35:00.001-07:00

Summer so-far...Madi's View!

2008-07-20T11:32:00.001-07:00

http://www.slide.com/r/78Dkb3aP7T9oYzVvQxx3g6HsRPRjam1F?previous_view=mscd_embedded_url&view=original

News from PIttsburgh

2008-07-03T15:33:00.001-07:00

Here we are in Pittsburgh...Madi and I say "hi". Lotsa tests the past few days, including a long and painful MRI.
Met with a neurosurgeon this afternoon. Some concern over fatty tissue attached to the lower section of her spine which may be causing her "buzzing" in feet and legs. We will return on Saturday for a shorter MRI and more conclusive results.
If this is an issue, we are hopeful that Dr. Cabera can join Dr. Deeney on Monday a.m. and do both procedures at the same time-- so pray for that as our best result.
Tomorrow, we are taking a break from the hospital and Gramps is going with us as we check out Kennywood on Ronald McD house passes! Yeah!
Sunday we hope to visit the zoo with our ol' nurse pal, Emma K!
Happy 4th to friends and family. We miss you and can't wait to get back home.
Rhonda and Madi

balloons for Emily!!

2008-06-28T06:21:00.001-07:00

2008 Ambassadors... our friends

2008-06-28T06:20:00.000-07:00

Summer notes and sadness

2008-06-26T08:21:00.001-07:00

It is with great sadness that Madi and I share news of her dear friend, Emily Barger's passing.
Emily represented TN as ambassador in the Champions Across America event this March. Her family, Brian, Misty, Blair and Meagan are in our thoughts and prayers. We ask our friends and family to embrace them and lift them up in prayer as their beautiful angel, Emily, greets God in Heaven.

On the day and time of her funeral, we will ask ALL our friends to join us in sending a balloon into the sky. The interment ceremony at the cemetery will begin at 3 PM on Friday....

On the card that is attached to the string..

In Honor of my friend...
Emily Barger- Knoxville Tennessee
Children's Miracle Network
Champion Across America 2008
RIP June 24,2008

On the back....

Sign your child's name... state... and the day date and time...
Will the person who finds this balloon honor my friend and make a
donation to your local Children's Hospital.

----------------------------

Also, we leave on Tuesday, July 1st for Pittsburgh, PA.
Madi will have procedures and pre-op the 2nd and 3rd and surgery on July 7th. Please keep her in your thoughts and prayers.

We will keep you updated here on her condition.

Love,
Rhonda and Madi

Kinney Drugs Miracle Dinner

2008-06-17T06:42:00.000-07:00

Kinney Drugs Miracle Dinner
Photos will be uploaded later but I MUST get this out to everyone.

First, my sincerest thanks to Ashley Adams, Alexandra Davis, Izzy Marsala and Miss Madi for performing "If No One Will Listen" last evening. It was certainly one of the greatest highlights of my career.

Second, I wish you all could have been there. After Goose Gossage spoke, they surprised the 500 plus attendees by having the girls come out in costume. Cindy Bufalini (who, with words alone, made me cry) introduced them.

The crowd grew quiet, the dance began, the girls were In The Zone. End of dance-- pause of silence and then...a ROAR of applause. Everyone jumped to their feet and a LONG standing ovation began. Goose stood up, grabbed Madi and lifted her to his shoulder. The crowd went NUTS and the ovation continued for about three minutes.

GOOSE bumps--- get it?? Ha.

I want to thank Stacy from Kinney Drugs for making this an evening that NONE of the dancers (and especially a glowing Madi) will EVER forget.
For Jocelyn, who makes wishes come true every day, a great hug of thanks...

and to Madi "our miracle" thanks...just for being YOU!

-Rhonda

Madi's chorus concert

2008-06-16T07:11:00.000-07:00

...and who is the loudest singing Angel of all???

June looks great

2008-06-02T11:06:00.001-07:00

Madi kicks bootie at THRIVE

2008-06-02T07:21:00.001-07:00

SO, we went to this regional dance comp. this weekend and Lil Miss Thing had quite the time...
She performed her clog dance solo to The Shake with about 100 contestants in her category...
She got a platinum scoring (highest level), first in her category, third place Grand Champion AND was named "Miss PreTeen Thrive"...
She was also chosen as Most Photogenic and Most Spirited. The last award was given in recognition of her friendliness backstage and in the dressing rooms with other studio members by VERIZON. The award?? OMG a pink blackberry. Of course, the actual PLAN would cost extra so she has a very impressive play phone as of now
A modern piece choreographed re: her surgery journey and how her friends from the dance studio perceive she is treated entitled "If No One Will Listen" also won platinum, first in category and second place Grand Champion and I received a choreography award for the piece (which I quickly recognized as the dancers' journey...NOT my work).
Anywayzzzz, it was great to see her hard work and sheer determination pay off.
For Madi, the kicker was that the event was hosted by BENJI from So You Think You Can Dance fame and she got her pic with him and "hung" with him backstage. (I will post those pics later!)
A long but satisfying weekend!
Did I mention I am soooooooooooooo proud???

Ambassador Website

2008-05-12T06:35:00.000-07:00

We have created an ambassador website for updates on "all our kids".

Please visit:

www.childrensmiraclenetwork08.blogspot.com

Right now, Madi is asking ALL her friends and family to pray for

EMILY BERGER from TN.

Emily's cancer is back and it is inoperable. She is seven years old. Her family is asking for all the prayers they can get!!

Thanks,
Rhonda and Madi

CMN dancethon slide show

2008-04-06T06:41:00.001-07:00

Access Broadway 08 slide show

2008-04-06T06:35:00.001-07:00

Ambassador Trip slide show #2

2008-04-02T09:10:00.001-07:00

Ambassador Trip slide show #1

2008-04-01T12:07:00.001-07:00

so much to tell you...

2008-03-19T17:58:00.001-07:00

but for now, these pics must speak for themselves! More to come...

Fashion Show

2008-03-04T11:10:00.000-08:00

A special thank-you to Kathy from A Touch of Grace for sponsoring the fashion show this past Sunday to benefit Children's Miracle Network. Kathy was kind enough to give Madi the beautiful dress she modeled.
What a great beginning to a wonderful month!

about gramps...

2008-02-12T06:42:00.001-08:00

hey guys, an update...sorry i haven't posted, it has been so crazy!
we had some MAJOR scares, but it looks like Dad is back on track. His recovery will be slower than usual, but it will be a recovery, which is the best news in ten days.
We are looking at a few possible rehab. centers and then madi and i will go and live with him a few weeks to take care of him/things.
whew...way too close a call for my comfort level:) thanks, again for the prayers.
NOW we are on countdown for our CMN ambassador trip!! we leave March 11th!!!!-Rhonda

Grampa update #2

2008-02-07T20:18:00.001-08:00

Dad is "out of the woods" for now physically and we are on the long road to recovery... thinking positively and grateful beyond words that he has fought to this point.

Gramps update

2008-02-04T08:12:00.000-08:00

I am sitting in the waiting room of St. Joseph's SICU. Dad had to have his surgery done on Saturday due to complications. He is not bouncing back as we would hope. We need many prayers, please. Miss Madi is beside herself... Her Gramps is soooo important to her. ...and to me...and PJ and Carrie and Taylor Jean and so many others.
-Rhonda

Madi's Gramps...

2008-02-01T17:14:00.001-08:00

My Dad, Madi's Grampa, found out today that he will undergo a triple bypass on Monday or Tuesday at St. Joe's in Syracuse, NY.
Anyone who knows Madi knows Gramps...cuz he goes on EVERY trip to Pitt. and is her guardian angel...now, we need angels and prayers for him.
When Madi was first diagnosed, it was my Mom (her Nana) who took the first steps get Madi and I on our way for hospital and surgery...she was my rock. We lost her to brain cancer in 2001.
Since then, Madi and Grampa are inseparable. This is so very hard on her... we expect that the surgery will make him feel worlds better, but this is one more fear and one more thing for Miss Madi to handle.
I will keep you posted as his condition IMPROVES... prayers are asked for and welcomed.
God Bless...Rhonda

Another one I had to post...

2008-02-01T05:57:00.000-08:00

A Pair of Shoes

I am wearing a pair of shoes. They are ugly shoes. Uncomfortable shoes. I hate my shoes. Each day I wear them, and each day I wish I had another pair. Some days my shoes hurt so bad that I do not think I can take another step.

Yet, I continue to wear them. I get funny looks wearing these shoes. They are looks of sympathy. I can tell in others eyes that they are glad they are my shoes and not theirs. They never talk about my shoes.

To learn how awful my shoes are might make them uncomfortable. To truly understand these shoes you must walk in them. But, once you put them on, you can never take them off. I now realize that I am not the only one who wears these shoes. There are many pairs in this world.

Some people are like me and ache daily as they try and walk in them. Some have learned how to walk in them so they don't hurt quite as much. Some have worn the shoes so long that days will go by before they think about how much they hurt.

No one deserves to wear these shoes. Yet, because of these shoes I am a stronger person. These shoes have given me the strength to face anything. They have made me who I am.

Thank you, Jobey/Zoe's Nana...for all of us "moms" out there!

2008-01-23T07:08:00.000-08:00

I just loved this and thought I would share:

The Special Mother
by Erma Bombeck

Most women become mothers by accident, some by choice, a few by social pressure and a couple by habit.

This year nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen?

Somehow I visualize God hovering over earth selecting his instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.

"Armstrong, Beth; son. Patron saint...give her Gerard. He's used to profanity."

"Forrest, Marjotie; daughter. Patron saint, Cecelia."

"Rutledge, Carrie; twins. Patron saint, Matthew."

Finally He passes a name to an angel and smiles, "Give her a handicapped child."

The angel is curious. "Why this one God? She's so happy."

"Exactly," smiles God, "Could I give a handicapped child to a mother who does not know laughter? That would be cruel."

"But she has patience?" asked the angel.

"I don't want her to have to much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it."

"I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has his own world. She has to make him live in her world and that's not going to be easy."

"But, Lord, I don't think she even believes in you." God smiles, "No matter, I can fix that. This one is perfect - she has just enough selfishness." The angel gasps - "selfishness? is that a virtue?"

God nods. "If she can't seperate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word'". She will never consider a 'step' ordinary. When
her child says 'Momma' for the first time, she will be present at a miracle, and will know it!"

"I will permit her to see clearly the things I see...ignorance, cruelty, prejudice....and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing My work as surely as if she is here by My side".

And what about her Patron saint? asked the angel, his pen poised in mid-air. God smiles, "A mirror will suffice."

The passing of a Pioneer...

2008-01-16T06:34:00.000-08:00

It is with a very heavy heart that I pass the news along that Dr. Melvin D. Smith has passed away after a long battle with prostate cancer. He died this morning in San Antonio. For anyone on this site who may not know, Dr. Smith was the co-pioneer of the VEPTR. He was the pediatric thoracic surgeon who approached Dr. Robert Campbell in 1987 about a newborn patient born basically without a chest wall. These two incredible physicians combined their medical knowledge and dedication and created what we now have for our children, the Titanium Rib.
I would be glad to foward the email I received (from the Thoracic Institute) to anyone who would like to read the letter from Dr. Campbell.
Elizabeth

I remember many wonderful things about Dr. Melvin D. Smith. After Madi's initial implant at age two, the "skin issues" became immediately (if not understood) apparent. At first, we attributed her issues to a latex allergy. Let me tell you, words are not equal to the sight of your baby's skin PEELING OFF with the bandages and tape and hearing her scream in pain. Nurses were beside themselves and Residents were perplexed. At about two a.m., in came Dr. Smith. Sleep deprived, but genteel and caring. He cradled Madi and soothed her with his quiet and calm voice. He looked her over from head to toe and immediately went about finding a way to make bandage changes less painful.
A great doctor? Yes. A pioneer in his field? Absolutely. A compassionate, extraordinary and loving MAN? Beyond a doubt.
God Bless You and Reward You, Dr. Smith. You are forever loved here on earth by your tiny riblets and their thankful families. -Rhonda

Madi's card...to YOU

2007-12-21T15:37:00.001-08:00

Madi made this herself while recovering...thought it'd make everyone smile.
Happy Holidays!

Make a scrapbook - it's easy!

update

2007-12-14T09:32:00.000-08:00

madi did not get into surgery until after 4 pm yesterday...it was a long day without food or drink, but she made it.
Dr. Deeney says all went ok. She got "popped" about 1/2 inch on both sides. This morning she told me that she had really been hurting the past few weeks, and her back, even after surgery, feels better now then it did before. Go figure!
She had a restless night, as I expected, but is doing well this a.m. She has walked and gone to the playroom already. Right now, she is propped in a chair and waiting eagerly for lunch; always a good sign.
We hope to be discharged sometime over the weekend and head home early next week...weather permitting. Keep your fingers crossed.
Thanks for the well wishes and prayers...happy holidays!

Madi and The Senator

2007-12-06T05:56:00.000-08:00

With Mom and Gramps:)

The Madison Bill

2007-11-29T07:02:00.000-08:00

Madi is pictured with Senator Joe Griffo, BRCS school Superintendant Mrs. Smithling and Elementary principal, Mrs. Lyman-Wright after receiving a copy of the legislative bill passed in October in the NYS senate in her name.
The Madison Bill recognizes Madison as the National Emissary for CMN and notes her extraordinary spirit and good will in the face of many challenges.
The Senator addressed 4th and 5th graders in an assembly prior to the presentation. He was very warm and genuine and we cannot thank him enough for recognizing Madison!
It was a truly great day....

A link for a cool news story re: another Riblet!

2007-11-10T04:38:00.000-08:00

http://www.canada.com/theprovince/news/story.html?id=83b9864b-b5eb-4849-8227-a99daff259f1

This is a cool link to a newstory about one of Madi's "Riblet Pals"...She got to meet Beckham!

Madison named emissary for CMN

2007-10-16T06:32:00.000-07:00

Today is the offical announcement that Madi has been named the NYS ambassador for 2008 to represent Children's Miracle Network. She will travel throughout the state and to Orlando, Fla and Washington DC to help celebrate medical miracles. I am so proud that she gets this opportunity to show the ABILITIES of children with "disabilities"!!

Fifth Grade

2007-09-27T05:45:00.001-07:00

An update:

Madi is loving the fifth grade at Beaver River. She has a male teacher for the first time and is really enjoying everything about school. She seems less stressed about making friends this year, which is a personal relief to ME:)
Madi is still VERY small and I can tell her center is "off" and we are ready to think about a return to Pitt...but the weather, the child and the life are all beautiful right now!!

THE American Idol Concert...wow!

2007-09-04T18:58:00.001-07:00

Madi's bday bash....Webkinz HULA party!!!

2007-08-23T05:56:00.001-07:00

Madi is TEN!!!!

2007-08-15T07:27:00.001-07:00

OUTING!

2007-07-12T07:17:00.000-07:00

Madi (and Mom) were going a bit stir crazy, so earlier this week we took Cuz KC along for a tourist day at Alex Bay!
Madi had never done the Uncle Sam Boat Tour and Boldt Castle Tour, so off we went.
Of course, the heat that day was outrageous, but we went "turtle speed" :) all day for Madi
KC was quite the gentleman, holding doors for Madi...helping her up and down stairs...it was sweet to watch!
It was a great mental boost for her to get out and about!
She is having some breathing issues with the humidity and we often stick her head in the freezer. Yep, really. It seems to help her breathing and certainly cools her off since she can't get wet yet.
TODAY is her "bird bath day" which means she can sit in a small tub and clean up and wash her hair. YIPPEEEE!
Incision is healing well and we are certainly on track to recovery!

Update!

2007-07-04T10:47:00.000-07:00

Sorry that we haven't been online...I didn't have access to a computer the entire trip...and couldn't leave Madi.
She had her old device taken out on the left and replaced with a new one. She is very happy because the old device was the big "bump" on her back before and that is gone! She also had an expansion on the right side.
Her pain level, from my perspective, was much more intense the initial three days after surgery than ever before. She would cry and say that she was "just uncomfortable". Ya think?
I think.
Once she was off the morphine and the IV antibiotics, she really seemed to come around.
An outbreak of RSV led her surgeon to push...and get her outa there.
SO, we are home. Probably, a bit too early. So...no visitors, yet, please. She is just laying low and requires constant care through til Monday:)
She loves getting emails and a few phone calls would cheer her up. Her pain is still pretty intense and the meds are making her very sick to her belly. Yuk.
Madi had a complete hearing screen this trip. As those of you who know me know, I have constantly worried about her hearing. With good reason; again, unfortunately,Mom knows best. They discovered that she has lost almost all of her left inner ear hearing. Most likely this is from long term IV antibiotics. Something that we cannot avoid, obviously...but Dr. Deeney is trying to get her off from them after surgery and onto a strong oral IV asap. We are screening every three months and watching to see if/when a hearing device would be of assistance for her. For now, they noted that she compensates extremely well.
Madi had a wonderful experience...again...with the Child life specialists. This time, the music therapist, Nichole thrilled her by having her make her own CD! Madi wrote the lyrics and created the tune and Nichole brought in the instruments and the recording device and TADA...Madi's first (certainly not last) song was created! Don't worry...I am sure all who know her will have the chance to hear it over and over and over again. You may even get your VERY OWN CD! WOW!
Personally, so glad to be home and can't wait to get back to dance class...and all my friends and family:)
Thanks for your love and support and prayers!
Rhonda and Madi

Perspective

2007-06-26T16:41:00.000-07:00

We have arrived in pitt and are at the RMcD House...our "home away from home". Always thankful when there IS a vacancy:)
And as I fret and worry about Our Gal...other stories shared in the kitchen put our luck and love in perspective.
There is a lovely little (small as Madi) 13 yr old girl here recovering from her second heart transplant in three years. That is difficult enough. But, the reason her first transplant failed? Her twin sister was diagnosed and passed away within three months last year. The stress and trauma caused her heart to fail.
These are stories that cannot be made up...and cannot be heard without changing you forever.
So, if something went wrong today (stress "thing") and you thought it was terrible-awful-day-ruining...think again.
Think hard.
And don't forget how lucky you were that it was only a "thing".

....R

Madi's email

2007-06-23T07:25:00.000-07:00

Madi, being Madi, has asked that I post HER direct email...because she is ten. And independent. And prefers her own, thank you very much.
so: it is....
frogger_m23@yahoo.com

hmmmmmmmmmmmm.
There.
Mission accomplished.
Mom:)

here we go again...

2007-06-20T07:19:00.000-07:00

Step sis Izzy and miracle friend Remi are pictured with Madi at this week's Miracle Kids dinner--what a blast!
This is Madi's last day of fourth grade and I cannot believe it! Man, time does fly...
She is probably the only kid crying that school is over- especially because she knows that we leave on Monday for Pitt. and she has surgery a week from tomorrow.
I will post updates on this page and you can email us both at:
ymca_rfoote@yahoo.com

Thanks for the prayers...and for keeping madi in your thoughts.
-Rhonda

...and here is the legendary Yankee "Goose" with our girls (that is Cassandra looking all grown up) and pal Remi...

New pics...help pick!!!

2007-05-14T07:58:00.000-07:00

What's Your Favorite????
Let me know! -Rhonda

Thank you to Amy and EVERYONE

2007-04-09T07:28:00.000-07:00

Madison and I wish to thank everyone who gave their time and talent and HEART to the benefit for her on Saturday. Special thanks to "Miss Amy" and her mom "Mrs. Amy" (as called by Madi).
As per several requests, the piece I wrote about Madi's background follows:

Madison’s Story
My daughter, Madison Draper arrived a bit earlier than expected in August of 1997. Although small, she wasn’t diagnosed with any actual problems until she was eight months old. Madison’s original diagnosis was severe congenital scoliosis. To put that in perspective, her curvature was a spiral in her little body bending at more than 100 degrees before she was one year old. This was making it impossible for her lungs and other organs to grow correctly.
Madi is in the medical record books as the youngest child to ever have a complete spinal fusion. This was done two days after her first birthday at the Children’s Hospital of Philadelphia, Pennsylvania.
Madi then spent a year in a full body cast. Shortly after its removal, we found out that the procedure did not work on her type of scoliosis.
This left us with a dismal diagnosis: In a wheelchair by age four and a life expectancy of ten years.
Madi’s surgeon, Dr. Dormans, was not giving up. He did major research and got Madi to be considered for The Titanium Rib Project. Just after her second birthday, Madi and I traveled to San Antonio, Texas where she underwent a battery of tests and a period of observation by the project’s originators, Dr. Campbell and Dr. Smith. We returned home and waited anxiously to find out whether or not Madi would be accepted into the program. She was one of two out of sixteen children we had met and bonded with who was taken into the project. To this day, I wonder about the fate of the other fourteen children in her group.
Originally, Madison had her veptr rod implants done in San Antonio. (VEPTR stands for vertical expansion titanium rib). For almost three years, we traveled often and stayed for long periods in Texas. Then, a branch of the project opened in Pittsburgh, Pennsylvania and we were transferred to theirprogram.
Since then, Madi has become a bit of a legend on “10 North” at Children’s Hospital of Pittsburgh. She will undergo surgery twenty-nine on June 28th of this year. She knows most of the nurses and technicians by name and her surgeon, Dr. Deeney, won’t hesitate to tell you she is one of his favorites. They all joke that when she ages out of the project she needs to return and show the other kids how it’s done!
Just this past year, a chance encounter with a Mom during a procedure led me to investigate skin issues that have always plagued Madison. Searching on the Internet, I found the Ichthyosis webiste. Further investigation led me to suspect that Madi actually suffers from a rare genetic skin condition called Conradi-Hunermann syndrome. During Madi’s visit to Pittsburgh in February, my research was proven to be correct when she met with their genetic specialists. At this point, we are investigating the use of hormones and other possibilities to help Madi grow.
Madison is now about half way through her VEPTR surgeries and her prognosis is for a long and happy life. She will never be “tall” but I think she is “bigger” than most children her age.
In so many ways, Madi is a typical nine year old. She excels in school and is very strong willed. She is talented and a dedicated friend. I consider us to be lucky to live in an area where people generally are kind and understanding of what Madi goes through. Still, it is difficult to explain the pain both outside and inside that she has had to endure in her short life. This August, Madi will turn ten. Considering her original diagnosis, this is a celebratioin that will call for one HUGE birthday party!
To learn more about Madi’s condition, I invite you to visit the websites below. I feel lucky that the internet can link us with other families going through similar situations and offer a way for us to help others understand her condition.
www.veptr.com
www.madimay.blogspot.com
www.ichthyosis.com
I want to thank Amy Earle for organizing today’s benefit and extend my gratitude to the studio director’s, dance teachers and the talented dancers who have shared their talents today. Most people just have a job. I am so lucky to have a passion that surrounds me with spirited and wonderful artists. Thank you all very much.

April 7th Benefit

2007-03-29T08:14:00.000-07:00

On Saturday, April 7th, a benefit dance competition will be held for Madi. The benefit is sponsored by Amy Earle's school of dance and features performers from over six local dance studios.
Our company will perform from 11:30-12:30 p.m. and the YMCA dancers will perform from 1:00-1:30 p.m. that day. The finals (featuring Judge's choice from each studio) will be held at 4:00 p.m. that day.
The event is held in the Dulles State Office Bldg. auditorium. Registration begins at 9:00 a.m. The cost is $5.00 per person or $10.00 per family for the full day of entertainment. All proceeds will go towards Madison's upcoming surgery at Children's Hosp. of Pittsburgh on June 28th.
There will be raffles and a print of Madi that was sketched by local artist Ginny Hovendon will be available for purchase...
Thank you to Amy for thinking of "my gal" and to all the studios for the show of unity and support in our area.

Update

2007-02-23T08:29:00.000-08:00

Madi is out of the hospital ahead of schedule; yeah!!! lots of appts. and xrays today and Monday and they MAY let us leave for home (and lots of rest) on Tuesday.
She slept til 10 am. a personal record, today. (me, too!!)
They put us in the apt. bldg. next to R mcD house because she cannot do stairs and there is an elevator there, very sweet of them since these apts are in very high demand.
You can call us at 412-362-3400 ext. 46. If we are at the hospital for an appt. just leave a voicemail to make us smile:)
Miss friends and family VERY much. She just sobbed last night that she wanted to go home and sleep in her own bed:(
Still on strong meds for pain and still smiling that big, lovely smile. She is quite the popular gal on 10N. Some poor boy around 12 had a similar surgery and SCREAMED when they made him move or walk. Madi would go by his door and his Father would say "see that little ? she had a bigger surgery than you on the same day and she is walking all over the place. You are a wuss." I tried to explain that all people handle pain differently, but he wasn't too interested in listening!
If you have cards, I would say send them to 205 Colorado Ave., Watertown at this point...otherwise they will probably come on Tuesday and trust me, we will be packed and outa here if we get the go ahead.
Grampa has been truly wonderful...he has had to move ALL of madi's stuff three times on his own now and is quite the talented taxi driver!
Special thanks to Dawn for all the help with Izzy this week. She really did not want to leave Pittsburgh and Madi (and maybe, me).
I hear my Senior company is practicing and keeping the studio going strong. Love you guys beyond words...you are such a wonderful gift to me:)
PJ and Carrie, hug Taylor BIG and tell her that Auntie Rhonda will be around to spoil her very, very soon!!
Phil, your post on the veptr site made me cry...thank you.
Madi's webkinz name is Calla97...thanks to those of you who sent her yours. Perhaps tonight she will feel up to going online...I am not certain, tho. Sitting is still questionable.
Again, thanks for the love and prayers and well wishes. We miss you all so very much...we are blessed to have so many people who care for Madi!
-Rhonda

Update

2007-02-14T16:56:00.000-08:00

Hi all...Madi's surgery is tomorrow around 11 am. It has been a VERY long week. Genetics on Monday went about three hours. I cannot put into words the pain of having your daughter stand stark in a room of three doctors who start at the top of her head and proceed to her pinky toes listing everything different or 'wrong" with your child.
Painful beyond words...especially watching her face as she listened intently and took in every word they said. My heart is still breaking.
They are 99 percent certain that my instincts re: Conradi Humerman were correct, so we will go from there.
Dr. Deeney thinks her skin is still too tender to do the full rib insert we had hoped for. Instead, he will do a rib to rib/two if possible, on the right and an expansion on the left. This is still much more detailed and involved than any of her surgeries in recent history.
We have been knitting, scrapbooking and tonight visited her favorite Pittsburgh restaurant for a Valentine's Dinner...all in between massive appointments and tests.
As usual, Madi is still finding a way to smile and keep the rest of us going. She is certainly nervous and prone to tears, but overall is as amazingly upbeat as always.
I am one lucky Mama!
-Rhonda

Flyaway by Madi

2007-02-06T06:23:00.000-08:00

Flyaway

by Madi Draper (age 9)

Flyaway, fly into the sky

like the most beautiful, most beautiful bird in the world.

Fly into the sky to the heaven's above

Fly, Fly, Fly, Fly

Up to the sky

Fly up above the world and soar up to the sun.

Take to the moon and you'll be one

so

Fly, Fly, Flyaway and ride on a shooting star

You'll have so much fun

You won't even know you're gone.

Gone to this world.

Fly, Fly, Flyaway.

Surgery is 2/15...

I think perhaps this is Madi's way of telling us...something.

Thank God she has...God.

-R

2007-01-26T07:01:00.000-08:00

A mother's thought for this day-Rhonda

" For you created my inmost being; you knit me together in my mother's womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well.
My frame was not hidden from you when I was made in the secret place. When I was woven together in the depths of the earth,your eyes saw my unformed body. All the days ordained for me were written in your book before one of them came to be." Psalms 139:13-16

Official Surgery date

2007-01-12T07:50:00.000-08:00

It's official:
We leave 2/12 for surgery 2/15...
Rhonda

Kierstyn's Essay

2007-01-12T07:32:00.000-08:00

One of Senior Company dancers recently wrote her English essay on Madison. Thank you, Kierstyn, for capturing MyMadi so beautifully!

I was ordering at the counter of the restaurant at the Fairgrounds YMCA, when this bubbly spirited, brown-eyed doll, came bouncing in, and surprised me with a big hug.

"Did you know there are green polar bears?" chimed this lovely little girl. Indeed it is true. Polar bears have been known to turn green due to circumstances beyond their control. This aspect makes these polar bears unique to the world. Just like the Polar bears, Madison Draper, the one whom bequeathed me with this tid bit of knowledge, is very unique.

Madison Draper, is a blonde haired, brown eyed, 9 year old girl that attends the 4th grade just like any other children her age. She hangs out with her friends, has sleepovers, birthday parties, and always has a good time. In her spare time, she takes piano lessons. She has her own style, which is definitely unique. She always wears bright colored clothes and her hair up in pigtails or down with a headband that always matches her outfit, and her glasses give her this edge of a little genius. Her upbeat attitude in life goes a long way in making others smile. However, not many understand what hardships she has gone through at her young age.

Madison was born wtih a rare condition called Severe Congenital Scoliosis. This is a severe curvature of her spine, which shapes it somewhat like an S. It also comes with a number of things that could go wrong. For Madison, she has to have 2 major surgeries a year, to slowly correct her condition. She is a member of the Titanium Rib Project, in which she has titanium rods inserted in her chest, and an artificial rib, in order to correct her torso. However, lately due to infections she has had to have a rib removed, and some of her more major surgeries have been postponed. Madison wa originally diagnosed never to walk, and was not thought to live very long. However, today, Madison is a walking miracle.

For a little girl of 9, you must wonder what thoughts are running through her head. I asked her what she thought about before her surgeries. She got very quiet and thoughtful for a few seconds, and then wrote down one word. "Prays". Now, seeing a response like this when you are talking witha 2 year old tugs at your heart. I spoke further with her mother, Ronda, about the subject. She told me a story about the other day which brought tears to my eyes.

"Madison came downstairs the other day with all her money. Everything. Her birthday money, her piggy bank, and set it on the table. When I asked her what she was doing, she replied, "I k now my next surgery is really big, and if I don't make it, I want you to have my money." I had to leave the room. that makes you wonder what's running through her head."

This story coming from her mother was very touching. Madison is Rhonda's miracle, her strength, and her inspiration. Rhonda would do anything for her little girl. So hearing the thoughts of Madison, whom rather tah being frightened about her surgery, was being slefless, and thinking about her mommy, myst show the incredible parenting she has done, and the incredible bond between the two.

Rhonda Foote is a mother, a friend, and a dance teacher. Therefore, Rhonda's FooteWroks Dance studio, at the YMCA, is where you will most likely find Madison during the week. She takes numerous dance lessons of her own, including tap, jazz, ballet, and hip-hop. She also takes numerous classes that are not her own, like our senior tap class, and other various classes that she is in the studio for and wants to participate in. I mean, just the other day, she was doing across the floors with our senior tap class! Now, I know for a fact, those exercises we do are not the most easy things in the world. Instead of being last in line and shy that she could not do as much as we could, Madi was first in line, laughing, and doing everything as full out as she could. Madison never takes anything for granted. Each time she dances, she dances full out, smiling, as if it were a performance. When I asked her why she liked dance, she replied, "It's good exercise."

She is true in her statements. Dance is very good exercise. However, for Madison, it is a miracle she can dance. For the future, Madison aspires to be an art teacher when she grows up. With the help of hte Titanium Rib project, and the loving support of her family and friends, her future is looking bright. She should be able to grow up and fulfill her dreams and her love for art. Madison will forever dance in our hearts and shine like the brilliant star that she is.

madi's bday slide show

2007-01-10T06:10:00.000-08:00

this is her favorite memory of the past year...her High School Musical 9th Birthday Party...look at her SMILE!!!- MOM

| View Show | Create Your Own

Madison: ever changing love story

2006-12-20T08:09:00.000-08:00

Those of you who know and love my sweet santa gal deserve a christmas update.
Madi was supposed to have The Big surgery on Dec. 28th...leaving town on 12/26. The Big Guy works in mysterious ways; her surgery was postponed last Friday because her General Surgeon would not be available.
All along, Madi has had "skin issues". Born with burn marks; cracked feet and hands, etc. Still, the scoliosis was most life threatening and thus received our greatest attention.
Until now. Mama-Me, always the inquisitive person, couldn't rest. What's up with the staph infections; cracked feet; incisions that won't heal???
Our last visit to Children's of Pitt. started me searching. I was approached by another mom who handed me a slip of paper for a parent support group for "kids like ours". Expecting a scoliosis site, I was shocked by a word never used in relation to Madi before: Ichthyosis.
She read my face and filled me in briefly; kids born with "scaly skin"...painful skin issues; easy infections. Ding ding ding.
I checked out some websites, concluded this was PART of Madi's story, but once again got caught up in her BACK pain and problems.
Well...here we are with a new hole in our incision. Madi is tired and "not herself". Has diarreah that is unexplained, fevers, ear pain. Me? Pretty much, terrified.
So, back to the internet I go. Browsing the scalyskin.org website, I start reviewing the subdivisions of ichthyosis. I note many types that have some symptoms that Madi has...then...Conradi Hunermann Syndrome. EVERY symptom matches Madi. She is a text book case. A genetic skin disorder caused by one extra X chromosome.
Cataracts; ear infections/hearing loss; hip dysplasia; high forehead; misshapen feet; cracked and sore skin; easily infected with disease and difficult to overcome any infections.
After a great deal of crying, anger and all around terror, the last twenty four hours has me focused and fighting.
With the help of Madi's Pitt. team and local Pediatrician, we are making every appointment under the sun in Syracuse asap...dermotologist, pulmonoligist, review with eye specialist; ENT; visit to her hip specialist.
Here's the thing; we have been gambling every time she has had one of her twenty six surgeries. Conradi Hunermann patients must ALWAYS be on a low dose antibiotic to help fight infection. They must be on HIGH doses prior to any medically invasive procedure. They lose muscle in the heart easily and lung function easily. They canNOT fight any infection.
So. We are incredibly lucky she is still with us.
This Christmas, that is all I will celebrate.
Everything else just doesn't seem to matter much right now.
-R

update

2006-08-11T05:07:00.000-07:00

so...I know that you may not have heard and I appreciate all your prayers and support.
Madi was NOT able to have her "big surgery" for a variety of reasons.
She DID have an expansion on the rib-existing-side but was unable to have the other side reinserted.
She is recovering, can finally swim again and is preparing for her ninth birthday party tonight!!!!
We will have to wait until January or February to find out if we can still insert the other side or if we may have to search for other alternatives.
To be honest, you haven't seen a post because this has been a difficult situation for us...perhaps more so for Mom than for Madi:)
But...today is a day of celebration and I vow to release the anxiety and fear and enjoy this beautiful day!!

...next week

2006-07-06T18:36:00.000-07:00

We leave Monday...pre-op Wed. and surgery Thurs. It's a "biggie" so your thoughts and prayers will be so very much appreciated!
Madi got new hair for her big trip:)

Kinney Foundation Dinner

2006-06-21T10:59:00.000-07:00

Kinney Foundation Miracle Kids!
What a wonderful experience for Madi and the five other "Foundation Kids" in attendance!
Madi REALLY loved the chocolate fountain, meeting a REAL Yankee and her cool medal.
Thanks for all you do...

SCARS

2006-06-15T05:38:00.000-07:00

After a long morning...this is what I have to say:

Scars

I cried today and mom held me and told me it’s alright
It’s just because my scars are out there, right there, in plain sight.

“Most people hide them from the world”
she told me as we hugged.
“They keep them on the inside and
think they won’t be bugged.”

From what she told me I think I know
Why people can be mean
It’s because their hurting in a different way
A way that can’t be seen.

My back is like a railroad track
My journey you can trace
I cannot rough -house on the playground
I’ll never win a race.

But inside, I feel beautiful
I know that I am free
I am growing every day
In a way you cannot see.

I understand that life’s a gift
That friendship is one, too
I would never dig deep down inside
To find things that are wrong with you.

So please don’t laugh and point and stare
And say things that are mean
I don’t think you know how much I care
When you pick on what you see.

SEE ME, is what I want to yell
The pretty me inside.
Because I would never, ever tell
The things YOU try to hide.

See my smile, my sparkling eyes
Hear the happiness when I talk
This body is just an awkward disguise
So please don’t stand and gawk.

My Mother says I’m smart and sweet
And so what if I’m not tall…
I’m one of the biggest girls you’ll ever meet,
Inside –out and all.

-RF

This past weekend

2006-06-05T06:23:00.000-07:00

This past weekend held a little TOO much excitement: awoke at 3 a.m. Saturday to Madi gasping for air. Rushed her to the ER for steroids and a breathing treatment. No idea what triggered her attack; she hasn't had one since she was eight months old.
She is visiting Dr. G for a work up today.
She was still all "pretty in pink" for her CMN interview, though. Hope you all supported this wonderful organization...Thanks!

CMN telethon

2006-05-31T06:38:00.000-07:00

Madi will be the featured interview at 6 p.m. this Saturday for the Children's Miracle Network telethon. Please tune in and pledge your support in her name.
Since Madi's diagnosis at 6 months of age, ONLY CMN has offered financial and emotional support throughout her entire surgical journey. As we head for number 23 on that journey this summer, their continued support is a god send. I have stated before and will state again: ONLY CMN offers financial help regardless of ethnic or religous background. They support YOUR decision for the medical path YOUR child will follow. There are no stipulations or rules to get help.
Jocelyn has become a friend of our family and is dearly loved by Madi. The extended family at the Border radiothon and those who recognize Madi due to the CMN telethons are all people we have come to know and feel a kindred appreciation for.
Madi has struck up friendships with other CMN kids that will certainly last a lifetime.
PLEASE consider how your pledge can help some child that you may already know in our community. Tune in on Saturday and make that call.
Thanks,
Rhonda and Madi

Feelings...

2006-05-22T18:40:00.000-07:00

This is in response to a post on the VEPTR site from another parent. Visit www.veptr.com to pick up the original thread:
Jennie
So, there you go...writing my worries and thoughts plain as day. Madi will be nine in August and as she grows older and the REALITY of her life somedays seems to overshadow the JOYS of her life, I feel a knot that grows tighter and tighter in my stomach. Coronas and lime...bible verses and doctors words...knowledge and belief combine to guide me through my days (and on to more coronas)...but this is MY baby. I am terrified. The reality is that little Madi will always be little. Very. Her reality is that she has pain and infections and limitations that she becomes more aware of (and more aware that other children don't have them) on a daily/nightly basis. I have reached this somewhat creepy and overwhelming point where fear can sometimes overwhelm me when I am not with her. The "what if" becomes so clear in mind that the details outline themselves for me and I am full of fear and panic. I am feeling that for you, too. For all of these children who have grown with the experiment that has saved their lives and may, someday, somehow for no reason we can ever understand...take it all away. See, Jennie, I am crying now...again... I am sorry...I guess. Sorry that we don't have the right answers for those we love so dearly. The only answer we all have is that the love for these special, bright stars in our lives will never, ever go out as long as there is a sky above holding a heaven we fear waits for them too soon. Hugs beyond reason, Rhonda

Remember our fundraiser production next week!

2006-05-04T05:27:00.000-07:00

Hey there!
Remember to attend the Spring Productions at the Dulles State Office Bldg. on Thursday and Friday, May 11th and 12th.
General admission is only $2.00 and all proceeds go towards Madi's surgery/trip and expenses in Pittsburgh this July.
More info? www.rhondasfooteworks.com

AND, very proud to announce that Madi was first runner-up Grand Champion in the 8 and under solo division at Starpower Syracuse Regional competition last weekend. A huge feat given the number and caliber of competitors. She also received a PowerPak scholarship (one of SIX) and was named Most Photogenic!
WOW....

Official July date

2006-04-14T05:43:00.000-07:00

It's official: Madi's reinsert of the titanium rib device will be in Pittsburgh at Children's Hospital on Thursday, July 13th. We will travel on the 11th, have pre-op on the 14th and return ??? Who knows? Whenever she is ready to boogie...
I plan on inundating everyone's chlorinated pool prior to then, since she most likely will not be able to swim at all the remainder of the summer. We are NOT risking another staph infection. NEVER!
The good news is, we have a date. The bad news is, we have a date.

Proud...always...i am

2006-04-07T06:20:00.000-07:00

Proud? Always...I am....
No matter what Madi goes through, she is happiest when helping others!
As shown here at The Empty Bowls dinner and performance at Ohio St. School last night:

Miracle Worker

2006-03-15T06:25:00.000-08:00

Did you catch the new show "Miracle Worker" this past Monday night?
I taped it...but haven't had the guts to watch it yet.
Aidan, the little boy featured on the show, has the same type of scoliosis as Madi. He received his VEPTR device in Cali from Dr. Skaggs. (more info available at www.veptr.com)
Friends have said I shouldn't watch it...but I know I'll have to at SOME point...most likely with a nice bottle of merlot to steel my nerves.
Madi plugs on. The pain in her arm can be very severe...and there is so much sickness going around (I am trying to beat The Flu right now).
She is home from school today with a tummy bug, but in relatively good spirits.
I have the week of July 8th circled for her big procedure. It can't come too soon for her health. It will come too soon for our emotions.

Back from Pitt...sigh

2006-02-26T06:51:00.000-08:00

Home again....
The trip to Pitt was not all we had hoped. Found out that Madi's infection is still "present". Postponed any further surgery until July. Meaning, of course, no growth til then.
In the big pic, not so important....but, still, think how YOU'd like to explain to your very bright eight year old that they won't just be "tiny"...they'll be "tiny" forever.
Noticed when looking at her x-ray that a hook seemed high up...very. Asked Dr. Deeney and he said "yes", it certainly shouldn't be there.
Seems that the hook, left unhooked since removing the titanium rib, has "floated". Straight up to lodge in her shoulder blade and is nestled in her muscle tissue in her arm pit. Explains that arm pit pain and cramping in her side.
Nothing can be done about it til surgery. Doc says just "understand her pain". Irony there, I am thinking.
No gym in school for the remainder of the year. Madi may be the only child on earth that would cry over that. Says it is another way she is "different". Only can participate in "controlled" atmospheres. Have YOU ever seen an atmosphere that is full of children and "controlled"? I haven't.
Good news: Madi can swim in chlorinated water and take a bath. Being a girlie-girl, the last was very important. The first was sweet, too, since Gramps spoiled her on the way home and found a hotel with a pool so she could SWIM until she pruned and wrinkled (see pic)! Once home, she indulged in a LONG bath. Made her quite happy.
All in all, making her happy makes me happy!

Off to Pittsburgh next week

2006-02-17T11:26:00.000-08:00

I suppose some kids will play over break. Maybe visit friends or relatives, or take a fun trip.
Madi will be back at Children's of Pitt. seeing her surgeon.
We leave Tuesday for a day of appointments on Wednesday. Check on her incision; x-rays, blood work, etc. Find out the status of her staph infection...
Gramps is coming along for the 8 hour drive. He has promised her a stop at the outlet malls outside of Buffalo on the way home. Thank goodness, that gives her something to look forward to. (Me, too!).
Here's hoping we get good news and she can schedule that next surgery to get her titanium ribs re-inserted. Not that the surgery is something to look forward to, but an ease from this pain/cramping and rebuilding her stamina IS.
We shall keep you posted.

The Crystal Ball

2006-02-14T07:33:00.000-08:00

Madi and Grampa had a GREAT time at the Crystal Ball...formal event for the Girl Scouts (Madi has great fun as a member of her school's Brownie troop!).
I am so thankful for an organization she can participate in that understands her limitations and always takes them in to consideration!!
I may be partial, but I am quite certain that Madi was the Belle of The Ball:)

Benefit Performance Scheduled

2006-02-09T05:54:00.000-08:00

Upcoming Events

2006 RECITAL INFORMATION

Rhonda's FooteWorks

Upcoming Events

2006 RECITAL INFORMATION

Thursday, May 10th 6:00 p.m. Non-company recital
Friday, May 11th 7:00 p.m. Company recital
Recitals will be at the Dulles State Office Building Auditorium

To Benefit:Madison May DraperJunior Company Dancer with severe congenital scoliosisMadison has undergone 22 major surgeriesand is presently in the Titanium Rib Project at the Children's Hospital in Pittsburgh, PATICKETS: $2.00 per personEach dancer receives 2 complimentary tickets

Call 767-3978 or e-mail info@rhondasfooteworks.com

The Poem

2006-02-09T05:49:00.000-08:00

Time Stands Still 2/18/05 RMF

These are the longest mornings.
Starting in the time that should be sweet dreams
I gently wake your clinging- to- me -body
and try to let your mind stay sleepy.
The muted "NOOOO" that slides from your lips
almost breaks my heart as much as the tears that slip from those eyes
just like mine.

Pink and Yellow Blankies are stuffed into the Hello Kitty Pillow Case
along with your "specials":
BunBun, Bear and Nana CareBear.
Ellie lies at attention
Your Seargent at Arm
Ready to cradle it when the IV stings.

Cozy stays with you.
I suppose some women wear their Victoria's Secret Silk Nightshirts.
But since your first surgery at 8 months of age, this has been
Your Cozy.
Camis and pj pants I now find to be practical and comfy
and you are cozy with one nightie sleeve wrapped around your right arm
the bodice clutched to your chest
as your hand rubs the silky smell of Mommy onto your right cheek.

You whimper as we pull Pooh slippers onto your cold toes
and I long for days of toddler-hood
when my Mohawk Indian temper, the part of me I have given you and sometimes love to hate,
made this journey loud and even humorous.
When you would cling first to headboard, then to door frame,
then to car door
until I pulled and pushed you kicking, screaming, biting into the too bright lobby.

Now, Pooh swishes the feet of your seven year old self down the small hall and I rub your hair
walking slowly behind you down the twisted stairs of the Ronald McDonald house
laden with Ellie and pillow and a backpack filled with Stuff We May Need.
This sanctuary of fellow soldiers whispers with the muffled sounds of others headed to battle.
There is the lonely father reading his paper at the table, too filled with dread to sleep.
A baby cries as Mom forces its meds down its tiny throat.
A young girl suddenly old enough to be a Mother
walks blindly in the barely there light,
readying herself for the first shuttle to take her to a hospital that she fears her baby will never leave.

We have all done this.
Sat stiffly on bedside chairs,
found a place where skin is touchable and held on for dear life.
Watched screens for peaks and valleys and learned to hear beeps and blips in our troubled sleep.
Tonight, I will do this again.

Today, you will do this again.
So we enter the car in the silence of comrades, Just Us Girls.
Travel the fifteen minutes to the hospital and park in the cave for cars.
Your silent tears fall onto cozy all the way and I choke back their companions held in my almonds of eyes.
You grip my hand and we enter the lobby, enter the elevator, scuffle into battle
onto the fifth floor where they know you by sight, then by name.

Sixteen times they have held up a clipboard and recited the name I chose with so much love.
A nurse they know you like meets you.
We like her because she never pretends this is about being happy.
She knows this is about just getting it done in your world
and she plays by your rules.

I answer none of the questions they ask because you know
and talk the talk of your medical walk on your own.
Weight, height, blood pressure, temperature.
"Silly Juice" to make you sleepy after you puke most of it up.
They don't even ask if you will ride on "that bed".
They know this is our trip. Your legs straddling my waist (o how they dangle now),
your cozy-wrapped arms in a strangle hold around my neck,
Your face next to mine inhaling my repeated "You are my girl. You are the best girl.
I love you forever, I love you for always, I love you no matter what."
"To the moon and back?" you ask.
"To the moon and back" I insist.

They don't take you from me, and for that I am always grateful.
I am engulfed in a Funny Bunny suit, as dubbed by you and loved by nurses who have learned to love you.
I place you softly on the hard bed and my stride and hushed words keep pace with it
as others surround us on the way to a room with a color on the door to match the color on your wrist band.
(This you always check, you seem terrified that they will get the colors wrong
and you will get the wrong surgeon, the wrong operation).

Your Dr. Deeney is there. Tall and affable even in scrubs and mask.
Hard to believe this man with hands as big as your head will perform miracles in your tiny body.
In a voice that has become a panicked wail,
You ask that they check to see that your Sleepy Medicine is bubble gum flavored
(For you, it has become a journey of details).
They hand me the bubble of plastic that will be your sleep and I make myself do this, again.
Place mask on this loved small mirror of my face and count to ten in my sturdiest, tenderest voice.

You look so beautiful in this room of ugliness.
They let me kiss your cheek, pull cozy from your softened clutch of a grasp,
and then, someone whom I think must have a face I don't remember, leads me back to the waiting room.
Bunny suit off, garbage that it is now, I am a "regular", so no one tells me what comes next.
I go alone to the elevator, back to the fifth floor and sit in silence with noise all around me.

Time Stands Still.
Morning into noon into afternoon.
On worse than imagined days, into early evening.
Punctual visits from a too friendly nurse with meaningless "she's doing fine" reports.
Then, there is your Stilt of a Surgeon, filling the doorway with his never-tired smile.
His "she's doing fine" I believe.

They can never get me to you soon enough.
The recovery room nurses know you, too.
They know that you will wake and look for me.
They know you will do that faster than any other child in this Dante's Pit of a room.
(So much crying, screaming, vomiting, flailing about. I am sure that this is what Hell is like).
None of that from you. You point nurses to babies that need mommies
and tell the big big boy next to you that he should stop screaming, his tummy will feel better soon.
Your nurse shakes her head when she sees me, "She is amazing, again". She tells me what I know.

I place Ellie under your IV arm, wrap your cozy on the pillow next to your cheek
and find a stool for my shaking legs to fold under.
My thumb and forefinger endlessly loop in a small cursive "l" on your forehead and you somehow smile.
Your eyes close in peaceful sleep in this noise-wracked room
and all the tears I have held back on this long day spill down my cheeks.

The nurse smiles and pats my shoulder as she hands me the kleenex box.
This, too, she has seen before.
-end-

An Introduction

2006-02-09T05:41:00.000-08:00

Madison May Draper appears, in many ways, to be a very normal eight year old girl.

She is in the third grade where she is a great student.

She loves American Girl Dolls, scrapbooking and DANCE class!!

Madi, however, is quite different than most other eight year old girls.

She has had 22 major surgeries due to severe congenital scoliosis.

(visit www.iscoliosis.com) for further medical information.

Madi is part of the Children's Hospital of Pittsburgh Titanium Rib Project under the direction of Dr. V. Deeney. Pittsburgh may be home of the SuperBowl Champs, but it isn't home to Madi...she travels about eight hours for each appointment and/or surgery. (for more information about the Titanium Rib, visit www.veptr.com).

As Madi's Mom, I feel blessed in many ways. Strange ways, perhaps, to Moms of "ordinary children" (although, I think, perhaps, I have yet to meet an "ordinary" child)!

Madi is a bundle of energy... a non-stop fighter and top notch sales gal on all accounts (from candy bars for dance company fees to girl scout cookies). She is comfortable with people of all ages and a fierce friend. She remembers everything and everyone and finds a smile inside her that shines on the outside no matter what she is feeling.

Madi wasn't supposed to run or skip or dance. She wasn't supposed to walk. She wasn't supposed to live very long.

She is full of life.

She is my life.