Gotta make a move to a town that's right for me,
Town to keep me movin', keep me groovin' with some energy...
Before Lipps, Inc. busted onto the music scene with the catchy lyrics and electronic pulse of Funky Town, I wonder if they were inspired by a late evening visit to CHOP's MRI Department. OK, you are saying..he's finally lost it...why am I reading this...and...I thought this was supposed to be about Maddie. So here's the story:
Last night Maddie had her 7 PM MRI appointment at Children's Hospital of Philadelphia. Now, if you've been to a city hospital at night you expect to see some interesting things and we did. However, we did not expect Mr. Funky Town. More later...
The doctors require a brain MRI prior to initiating the Myozyme treatments. According to our doctor at CHOP and neurology.org, strokes related to intracranial aneurysm have been reported in three late-onset Pompe patients so, while very rare, they run a baseline test to determine if there are any issues. Maddie was very brave through the whole process. From getting an IV line in her hand so they could add contrast media, to lying in the MRI machine for an hour, to trying to imagine a symphony made from the annoying banging sounds the machine makes, she was a trooper. She was a bit scared and tired after the ordeal, but left the hospital in her usual positive self saying, "Well at least that's behind me."
Back to Mr. Funky Town. So here we are in the waiting room at 7 PM with four adults all looking much more tired than I felt and doing what they could - in silence - to keep calm while their kids where having MRIs. That was until the silence was broken by a cell tone playing the tune we all know and love, Funky Town. Then came the guessing, who's was it? The young couple playing the Connect Four game in the corner? The lady fast at sleep in the chair next to us? Or, the well kept Grandfather who was carefully reading his paper?
Of course it was Grandpa who casually reached into his coat and answered the phone like it was nothing, not once, but twice. That's right, Grandpa's got soul!
As expected Maddie turned to us with eyes raised and a little smile that made the night OK. When we drove onto the highway, I told Maddie that it will be those moments that keep us sane on our Pompe Adventure. Sometimes, laughter is the best medicine.
Gotta move on, Gotta move on...
Have a great weekend,
Matt
Credit to: Lipps, Inc., "Funky Town"
Town to keep me movin', keep me groovin' with some energy...
Before Lipps, Inc. busted onto the music scene with the catchy lyrics and electronic pulse of Funky Town, I wonder if they were inspired by a late evening visit to CHOP's MRI Department. OK, you are saying..he's finally lost it...why am I reading this...and...I thought this was supposed to be about Maddie. So here's the story:
Last night Maddie had her 7 PM MRI appointment at Children's Hospital of Philadelphia. Now, if you've been to a city hospital at night you expect to see some interesting things and we did. However, we did not expect Mr. Funky Town. More later...
The doctors require a brain MRI prior to initiating the Myozyme treatments. According to our doctor at CHOP and neurology.org, strokes related to intracranial aneurysm have been reported in three late-onset Pompe patients so, while very rare, they run a baseline test to determine if there are any issues. Maddie was very brave through the whole process. From getting an IV line in her hand so they could add contrast media, to lying in the MRI machine for an hour, to trying to imagine a symphony made from the annoying banging sounds the machine makes, she was a trooper. She was a bit scared and tired after the ordeal, but left the hospital in her usual positive self saying, "Well at least that's behind me."
Back to Mr. Funky Town. So here we are in the waiting room at 7 PM with four adults all looking much more tired than I felt and doing what they could - in silence - to keep calm while their kids where having MRIs. That was until the silence was broken by a cell tone playing the tune we all know and love, Funky Town. Then came the guessing, who's was it? The young couple playing the Connect Four game in the corner? The lady fast at sleep in the chair next to us? Or, the well kept Grandfather who was carefully reading his paper?
Of course it was Grandpa who casually reached into his coat and answered the phone like it was nothing, not once, but twice. That's right, Grandpa's got soul!
As expected Maddie turned to us with eyes raised and a little smile that made the night OK. When we drove onto the highway, I told Maddie that it will be those moments that keep us sane on our Pompe Adventure. Sometimes, laughter is the best medicine.
Gotta move on, Gotta move on...
Have a great weekend,
Matt
Credit to: Lipps, Inc., "Funky Town"
It does help if you talk about it, talk about it, talk about moving..... .....
ReplyDelete“I believe that imagination is stronger than knowledge - myth is more potent than history - dreams are more powerful than facts - hope always triumphs over experience - laughter is the cure for grief - love is stronger than death”
ReplyDeleteRobert Fulghum
Hi Donna and Matt,
ReplyDeleteDad has been keeping me posted on your progress with Maddie. You are real troopers and it sounds like things are moving along well. Take care and love to all.
Karen (Oulds) Battaglia.
Laughter and tears are both responses to frustration and exhaustion. I myself prefer to laugh, since there is less cleaning up to do afterward. ~Kurt Vonnegut
ReplyDeleteI hope the Crowley's are well.
ReplyDeleteMy day is complete. I heard a child laugh.
ReplyDeleteEverytime you smile at someone, it is an action of love, a gift to that person, a beautiful thing. ~Mother Teresa
ReplyDeleteSome noteworthy people of the name Crowley
ReplyDelete* Sir Brian Crowley, Australian Jockey Club * Admiral George Crowley, * Thomas Crowley, Ministry of Defence * Air Marshall Sir Dennis Crowley, * Edward Aleister Crowley (1875-1947), English poet and author * Robert Crowley (b. 1954), English stage designer
I would like to add Maddie Jane Crowley to this list.
I like smiles
ReplyDeleteDogs laugh, but they laugh with their tails. What puts man in a higher state of evolution is that he has got his laugh on the right end. ~Max Eastman
ReplyDeleteFredo is the man!
It's one of nature's way that we often feel closer to distant generations than to the generation immediately preceding us. ~Igor Stravinsky
ReplyDeleteI think Funkytown won a "Grammy" last night.
ReplyDelete