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| Pediatric Tracheostomies For parents and caregivers of children with tracheostomies. Please limit discussion to seeking and sharing of information pertaining to tracheostomy care, medical issues, special needs, disabilities, networking and moral support. |
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#1
03-07-2007, 11:06 AM
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Update on Jasmin
Hi Everyone,
My husband and I were very excited on Monday after attending the pediatric neurology appointment in Portland, ME. It turns out that Jasmin has what is called 'shuddering episodes'. Dr. Rioux reports that it is rare. One in a thousand. He let us know that she should grow out of these episodes, and they do not predispose her to seizures in the future.  Our daughter has given us a run for our money since the moment of her birth....and she just won't stop. But she is the light of our life and we wouldn't have it any other way. She is so full of life and energy.....Her eyes tell it all. Has anyone worked trying to teach their child sign language? I am trying to be more vigilant about using this mode of communication but have not done so good as of yet. (Jasmin will not be able to speak/make noise until she begins having reconstructive surgery).  
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#2
03-07-2007, 11:15 AM
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We are working on signing with Sebastian but he is only 13 months ( developmentally 9 1/2 ) so it is still more about *US* learning it . He is starting to catch on to a few words though. We had planned on using signs before he was ever born though because my friend's young son is deaf .
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May Mommy to Sebastian(1-24-06), hardcore former 26 wk preemie, had and kicked butt of many issues, dealing with a few more , including autism. Trached 4/16/06 @ 3 months due to severe BPD and mild Tracheomalacia. Decanned 9-9-09 and doin' just fine !  http://sebastiansjourney.blogspot.com/
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#3
03-07-2007, 11:20 AM
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Sam does really well with his signs now, and because he can finger spell the alphabet now he spells words out to me that he doesn't know, which is so "cool".
What are the 'shuddering episodes' like. Sam does this sometimes and we thought it was due to his cardiac arrythmias but haven't got a real reason yet, just wondered if they were the same. He just sort of goes all stiff and shudders for a few seconds then is back to normal again. Is this what happens with Jasmin? "Love" Julie
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  Sam Feb 11 2003 Opitz G/BBB syndrome, mickey, nissen, autistic,supraventricular tachycardia, bronchiolitis obliterans. decanned May 30 2009. 2 brothers Jonathan (23) James (14). I am first and foremost a child
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#4
03-07-2007, 01:08 PM
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My advice to parents who are considering signing: do it right away and do it all the time! We have been signing to Nathan since he was in the NICU. My husband did "hand over hand" and taught Nathan his first sign the night he was born--hooked up to the vent and post trach surgery!
We have been very intentional with Nathan and in our efforts to learn ASL, and it has paid off big time. Nathan is one week shy of 18 months old and has probably 120+ signs. He signs constantly and is now putting 2 signs together regularly to form sentences. He will even sign in 3 word sentences--maybe once or twice a day. Signing has given him the freedom to communicate with us and with others who can sign. He "chatters" and "babbles" in sign non-stop. It is amazing! We taught ourselves by checking out some ASL books from the library and then buing the ones we liked the best. We use the Signing Smart flash cards and a Scholastic ASL book. Nathan even flips through the flashcards and books and "practices" the signs he sees. I look forward to the time he is finger spelling like Julie's little Sam. Kids are incredible in their ability to learn ASL! Good luck and have fun with the signing! I'm glad you got good news at your dr appointment 
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Kristy Nathan is 7! Trached at 2 hours old--laryngeal atresia. Double stage LTP 5/26/06, double stage LTP 1/23/09 and single stage LTP 4/21/09. Airway has restenosed, but we're still trach free 9/2012. Ding dong, the trach is gone!!
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#5
03-07-2007, 01:30 PM
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I'm so glad you got good news at your appointment! Thank you for updating us!!
Lara
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Parents to Isaac, born 12/8/06, idiopathic bilateral vocal cord paralysis, trach'd since 11 days old, repair of acquired tracheomalacia and Decannulated on May 15, 2008, still with some vocal cord paresis (decreased motion)  
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