Posted by Rachael
on 9/10/2009, 4:46 pm, in reply to "please help our son"
86.160.189.2
Hello,
I am glad your wife was able to help your son. Having a child with PRS can be very scary to say the least. My son is now 14 months old and has had a lip to tongue adhesion, g-tube, mandibular distraction, ear tubes, and his cleft repaired. My advice is to find a Children's Hospital that has Dr.'s and specialists who have experience working with PRS babies. ASAP. We stayed too long at a hospital who performed outdated procedures on our poor son (Lip to tongue adhesion) that in my opinion wasted our time and nearly cost us our son's life. Please find a hospital who can help your family. We love All Children's Hospital in St. Petersburg FL if you are near the area.
God Bless
--Previous Message--
: Hello,
:
: My son's name is Ashton. He is 7 weeks old
: and was diagnosed with prs. He also has
: crainosystosis. His breathing was fine at
: birth and he has been able to bottle feed
: quite well. Last week Ashton spit up and was
: unable to breathe. He turned blue and my
: wife had to preform cpr on him. The Dr.s are
: torn on the options for Ashton. They agree
: his blockage in his airway is moderate. He
: seems to have developed a problem swallowing
: his spit. He also sounds very stuffy like
: there is some congestion. Does anyone know
: if this congestion will pass? If anyone has
: any advice please share, my wife and I are
: beginning to feel overwhelmed.
:
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