Madison's Story

Madi's 12th Birthday!

posted by Rhonda Foote @ 6:53 PM 0 comments

Miracle Dinner '09

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!!!!

posted by Rhonda Foote @ 5:34 AM 0 comments

recovering

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!

posted by Rhonda Foote @ 4:13 PM 1 comments

Surgery July 9th

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!

posted by Rhonda Foote @ 7:52 PM 1 comments

Not arthritis... snap, crackle, POP!

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
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posted by Rhonda Foote @ 6:31 AM 0 comments

Arthritis?

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....

posted by Rhonda Foote @ 7:11 AM 0 comments

HOME

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.

posted by Rhonda Foote @ 6:40 AM 0 comments