Monday, September 24, 2012

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!

4 Comments:

At 1:22 PM, Blogger Heather said...

Hi,

I have a quick question about your blog, do you think you could e-mail me?

Heather

 
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At 3:03 AM, Blogger Our Family Adventures!! said...

A friend just sent me the link to your blog. We're considering VEPTR for our daughter. However, our daughter has already had her spine partially fused (5 vertebra bone fusion plus entire thoracic spine fused with steel rods and bolts/hooks). It's fused in such a way that her rib cage as well as her spine can't grow at all resulting in thoracic insufficiency syndrome (meaning lungs won't be allowed to develop fully as her fusion was done at the age of 3 and 4 yrs old). I know the final fusion surgery can be very scary, but our daughter came through it just fine (Both times) and recovered very quickly. It seems like we've reserved, we did fusion first and now we're considering VEPTR if we can get her into the program whereas you all did VEPTR first. I'm so glad my friend sent me your blog. It's been great reading everything involving VEPTR to get an idea of what to expect. I know our path will be slightly different due to a different diagnosis, but this as least gives me somewhat of an idea what she will have to deal with.

 

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