Chronically...Frustrated
It has been a LONG Fall and Winter for Madi. Bursitis in her hip; sprained knee; WEEKS of pain and crutches. Cough, sinus infection, "maybe" bronchitis... stomach issues, major headaches, dizzy spells. Fatigue, tears, and FRUSTRATION for both her and I.
Being chronically injured and/or ill is simply NOT fun.
To the people who don't believe her... or who "poo poo" her... or who count her out, leave her out and shut her out... I say SHAME on you.
Riding in the KIA yesterday, I happened on an NPR radio interview with Laurie Edwards who was plugging her newly released book, "In the Kingdom of the Sick", and pulled over to listen intently.
Everything she said hit home. WE ARE NOT ALONE.
I have ordered both of her books, started following her blog and her FB page, and hope that her words give Madi some strength.
Madi plugs on... still singing, dancing as she can and feeling "blue".
I took her to visit dear friends in Georgia over Spring break and we stopped in Virginia on the way home to see my Aunt and Uncle... and cooking with Great Aunt Tina made her smile. We brought Grampa along and NOTHING makes Madi happier than time with him... her BEST friend.
I am thankful for Pittsburgh. For Joanne Londino and Dr. Vincent Deeney and their continued partnership in this medical battle. For their belief that the physical causes a mental attitude-- and NOT the opposite.
Fight on... Fighting on...
Madison is 15. I cannot believe that I started this blog when she was 7, and already 7 years into her medical journey.
Medical update: A visit to Children's Hospital of Pittsburgh to see "her crew" in August was amazing.
Dr. Deeney says the VEPTR is holding. What this means, is that, for the forseeable future, she need not consider her final fusion surgery. This surgery is HUGE- long surgery followed by 6-8 weeks in hospital, followed by 7-10 months laid up at home. The vision of My Madi going through that stand still in her life is heart breaking.
She was so relieved... She practically collapsed in the hall when we left the Dr. She is such a great actress, I did not comprehend how heavy this had been weighing on her.
Bones still break easily; eyes still have cataracts; lung capacity can be scary; left ear has some hearing loss; and she is only 4'5 inches....forever "pocket sized", or, as she states, "legally, I'm a midget".
Her dear friend, Kaeleigh, made the trip with us this year. We had a great deal of fun... visiting the music therapy room and hanging with Madi's favorite child life specialist staff in the universe...lunching with favorite nurses from a lifetime of loving care...and a day at the terrific Pittsburgh Zoo.
Madi and Kaeleigh entertained Dr. Deeney's office staff with some vocals as they were both very busy in musical theater last summer: performing in Godspell and having leads in Camp Rock. Currently, Madi is a sophomore at Watertown High School where her life revolves around Sophomore select and she will perform the first week of October in their musical FAME as Lambchops.
She spent two weeks at Summer Fame at SUNY Oswego this Summer...and continues to be an active company dancer at my studio, Rhonda's FooteWorks.
She LOVES assisting with our new Open Hearts, Open Dance Program -- a free dance program offered monthly for exceptional and special needs children. Her dream is to go to Fredonia State and become an art or music therapist and work (tada) at Children's Hospital of Pittsburgh... giving back some of the love she received as a patient there for nine years.
As her mom, I worry less about some things and more about others. Even if your child is perfectly healthy, Mom worries.... As the Mom to this incredible teen who has conquered so much and continues to fight and achieve miracles daily, the worry is a dull throb in the middle of my glowing heart. It is the tear that forms in my eye for no known reason and the gnawing in my belly when the day is fabulous.
Unless you have "been there", it is difficult to describe. Once you have "been there", it is impossible to shake.
To all the other Moms out there who do know... I offer heart felt hugs. I don't know what else to offer.
Today, she is off to her school looking all the teen girl in her Fall clothes and sassy style. After school, we will get her homecoming dress altered so it is Madi-fied for that big event. She will go to musical rehearsal, I will go to work, and tonight she will wrap up homework and then hit her lap top, music blaring from her room as she sings along. This is our normal right now.... and it feels wonderful!
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!!
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!:)
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!
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!
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....
