Thanks for sharing. Time will tell how Nathan will do.
Actually, I may have asked you this same question a year or two ago
J .
. .it is nice to have someone to check in with who has been there.
Take care,
Vickie
From:
MarshallSyndrome@yahoogroups.com [mailto:MarshallSyndrome@yahoogroups.com] On
Behalf Of Christy Hill Sent: Thursday, September 18, 2008 12:49 AM To: MarshallSyndrome@yahoogroups.com Subject: RE: [MarshallSyndrome] (unknown)
Vickie,
I'm one of the fortunate ones with Marshall's that do not have severe joint
issues. I would say I didn't get achy joints or soreness issues until I was
about 33
years old. I do get stiff now, but not what I read from folks who have
Stickler's. I
feel that I'm very fortunate. I'm not as bad off as others with this syndrome.
The
older I get now (I'm now 43) the more I noticed stiffer joints. I also noticed
that
damper climates are more of an issue.
Hey! Great we have discussion here! WHOO HOOO!!! Yeah, I have some of the facial features of Marshall's. I have extremely narrow hips, very short legs, but...
Christy, Thanks for sharing. Time will tell how Nathan will do. Actually, I may have asked you this same question a year or two ago :) . . .it is nice to...
Hey Christy, Lalo will turn one on October 18th. It is amazing how fast time flies! We are throwing him a cowboy party, it is going to be a blast! hope you...
... birthday? ... National Institute of ... an MRI on my heart ... with Turner's ... was when they said I ... consistent with ... saw many people ... point is,...
Hi everyone: When my son James was born, then did a number of tests and determined that he had a bicuspic (?) aortic valve, but they also said that it was not...
Hey Deb, We live in Southern California, in San Pedro, south of L.A. it is cool how close their birthdays are! Although he does not have a cleft palate, it...
WOW! , ... I have lived in San Pedro back in 1996, then moved to Torrance from '96 - 2000. I now live in the San Diego area :-) Moved here 6 months ago. From...
Dear Michel & Aaron:  I am sure that I will need advice getting James to wear his glasses. I know he will need them as he often brings things very close to...
Hi Deborah, My name is Mandy and my son Dean has been wearing glasses and hearing aides since he was approximately 4 months old. Dean also did the birth to 3...
Hi Mandy:  Thanks for the info. James also has Pierre Robin and Marshalls. When did they fix Dean's palate? And how is his speech now? Have you had...
Dean's palate was repaired on his first birthday...unfortunately we had to go to gainesville and have it taken apart and redone this past may. I wish I had...
Why did they have to repair the palate? Was it repaired incorrectly the first time? Is there anything I should be looking for as far a problems. And some...
The second repair was for speech issues...the varangyl (sp?) flap was insufficient. Basically Dean outgrew his palate. Unfortunately we only had 1 plastic...
Thanks for the pictures - your children are beautiful. James has a eye doctor appointment on October 23rd, so we will see what the Dr. says, and try to get...
CONGRATS!!! on the first year...it truly is the hardest one to get through. It should get lots easier as time goes on. You are taking James to a pediatriac...
Hi: How do the cataracts affect Dean's vision. And if he can't go to a regular eye doctor, who will he go to when he is an adult?  James sees a pediatric...
Hi, sorry its taken me so long to get back to you. James is so adorable....I hate to say it, but Dean wasn't that handsome as an infant. He has really had...
Hi Everyone: Mandy, I appreciate all of the information you gave me, and it sure sounds like you have a great medical team. We live in Northern Wisconsin so...
It sounds like we have very similar teams...ours is called the cranio-facial team so they don't just concentrate on clefts...but I think they make up the...
Hi: I was wondering if you could clue me in on what the recovery is like for palate surgery. How long before he can eat, pain management, etc. It makes us...
The first palate surgery was easier than having a feeding tube placed for Dean. The morning after surgery he was sitting up in an oxygen tent and playing...
Hello everyone:  James is walking!! 13 months old, so just about the same time as our daughter started. We are looking forward to our surgery consult on...
Having problems with message search?
Offline 
Send Email