Madison's Story

Sunday, January 22, 2012

The trip of a lifetime!

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!!

Sunday, July 10, 2011

Summertime and the living IS

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!:)

Wednesday, January 26, 2011

Here we go... again!

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!

Wednesday, October 13, 2010

The Eyes

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!

Monday, October 11, 2010

Update

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....

Tuesday, July 13, 2010

Update...it's time...

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!

Tuesday, February 02, 2010

Surgery #36

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.