PA Picnic After Effects & NEW NEWS!
Posted: Sun Oct 05, 2003 3:04 pm
Wow! What a day! This time I chose the best seat in the house - I ushered people in and out (sorry!) of Dr. Nath's room and this way I got to meet EVERYONE!!! How cool can that be!! We started at 9 am and finished at 6:10 with a short break for a presentation and lunch. 49 kids!! Some new families were there (fortunately and unfortunately). It was so much fun watching the kids meet each other, play with each other and just have so much fun in the pool and in the Little Gym program. The weather was awful which makes it so exciting that we now have this wonderful indoor venue.
Dr. Nath announced that they have set up a relationship with Dr. DeSouza - a top doc neurologist in NJ. Dr. Nath will come to NJ 4 times a year to this office in Morristown, NJ (north jersey) for clinic and will come a 5th time to our PA picnic - so we'll have him around more! He feels that Dr. DeSouza will be a great asset to the families in this area for followup, EMG testing, therapy, e-stim, etc. He said that over the years, Dr. DeSouza has referred a great many patients to TCH and that is followup care has been exemplary and that is why Dr. Nath decided to contact him to set up this relationship.
There are a number of families who are on the message board that are already seeing him... here's his contact information:
Dr. Trevor DeSouza
Pediatric Neurology Associates, P.A.
111 Madison Avenue, Suite 310
Morristown, NJ 07960
Tel: (973) 993-8777
Office hours are Monday through Friday from 9:30 a.m. to 5:00 p.m.
We also learned about and saw 3D CT scans !!!! UNBELIEVABLE!!! It was obvious that this scan is what the kids should be having done. It gives you a COMPLETE look at what your child looks like inside.... as if you have just been handed a plastic skeleton that copies what your child looks like inside...it couldn't be any more clear than that!
With this technology Dr. Nath has learned that there is now a "structural" reason for dislocation. In our children the acromion grows too long (because nothing is stopping its growth, when a normal ball would be stopping its growth) and it gets in the way. Of course even though I've heard this explained just 2 times yesterday, I'm not totally sure I completely understand it so Dr. Nath will be writing it up for me and sending me the jpgs so I can put it on a page for all of you to see.
He said that the "fix" for this is very easy - they actually just take a bit of the end of this bone off - very simple stuff, short splinting time, etc. It's called "acromioplasty".
He was SO happy to share this news with us. I can't wait for you to see the pictures of this....the minute he gets them to me I will have them up!
Many thanks to Tom and Trish Cirino for everything!! The place was great - the food great - the clown and the Little Gym people - the crafts were great. The Cirinos do SO MUCH to get this together. And what you might not know is that they run a GOLF outing day in the summer to fundraise to make this happen. (Their fundraising helps fund the picnic and money also goes to bpi research [many facilities], and to help families in need, and more...) Although there was a cost to the picnic that covered admittance and a portion of the food costs, the Cirinos fundraising efforts payed for the rest of the food costs, the cost of renting all of the rooms and gymnasium, the costs of the clown and the Little Gym - and the costs for all those who have a bpi. There's more than you know that goes into this picnic - it's quite an event!
They don't come to the message boards -but here is their email address if you want to drop them a note.
brachial@aol.com - Tom & Trish Cirino
Also- thanks to Nancy Birk who drove the distance (from Ohio) to support the PA group and meet with families. YAY Nancy!!
Thanks to Dr. Kozin and his group that came to meet with families - they came prepared with all different kinds of splints and more to answer questions, etc.
And thanks to Dr. Nath for evaluating all the kids and especially for bringing that tiny computer of his which showed the 3D CT scans.
Hope those who came to the picnic got home safely and had a great day!
-francine
Dr. Nath announced that they have set up a relationship with Dr. DeSouza - a top doc neurologist in NJ. Dr. Nath will come to NJ 4 times a year to this office in Morristown, NJ (north jersey) for clinic and will come a 5th time to our PA picnic - so we'll have him around more! He feels that Dr. DeSouza will be a great asset to the families in this area for followup, EMG testing, therapy, e-stim, etc. He said that over the years, Dr. DeSouza has referred a great many patients to TCH and that is followup care has been exemplary and that is why Dr. Nath decided to contact him to set up this relationship.
There are a number of families who are on the message board that are already seeing him... here's his contact information:
Dr. Trevor DeSouza
Pediatric Neurology Associates, P.A.
111 Madison Avenue, Suite 310
Morristown, NJ 07960
Tel: (973) 993-8777
Office hours are Monday through Friday from 9:30 a.m. to 5:00 p.m.
We also learned about and saw 3D CT scans !!!! UNBELIEVABLE!!! It was obvious that this scan is what the kids should be having done. It gives you a COMPLETE look at what your child looks like inside.... as if you have just been handed a plastic skeleton that copies what your child looks like inside...it couldn't be any more clear than that!
With this technology Dr. Nath has learned that there is now a "structural" reason for dislocation. In our children the acromion grows too long (because nothing is stopping its growth, when a normal ball would be stopping its growth) and it gets in the way. Of course even though I've heard this explained just 2 times yesterday, I'm not totally sure I completely understand it so Dr. Nath will be writing it up for me and sending me the jpgs so I can put it on a page for all of you to see.
He said that the "fix" for this is very easy - they actually just take a bit of the end of this bone off - very simple stuff, short splinting time, etc. It's called "acromioplasty".
He was SO happy to share this news with us. I can't wait for you to see the pictures of this....the minute he gets them to me I will have them up!
Many thanks to Tom and Trish Cirino for everything!! The place was great - the food great - the clown and the Little Gym people - the crafts were great. The Cirinos do SO MUCH to get this together. And what you might not know is that they run a GOLF outing day in the summer to fundraise to make this happen. (Their fundraising helps fund the picnic and money also goes to bpi research [many facilities], and to help families in need, and more...) Although there was a cost to the picnic that covered admittance and a portion of the food costs, the Cirinos fundraising efforts payed for the rest of the food costs, the cost of renting all of the rooms and gymnasium, the costs of the clown and the Little Gym - and the costs for all those who have a bpi. There's more than you know that goes into this picnic - it's quite an event!
They don't come to the message boards -but here is their email address if you want to drop them a note.
brachial@aol.com - Tom & Trish Cirino
Also- thanks to Nancy Birk who drove the distance (from Ohio) to support the PA group and meet with families. YAY Nancy!!
Thanks to Dr. Kozin and his group that came to meet with families - they came prepared with all different kinds of splints and more to answer questions, etc.
And thanks to Dr. Nath for evaluating all the kids and especially for bringing that tiny computer of his which showed the 3D CT scans.
Hope those who came to the picnic got home safely and had a great day!
-francine