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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
01-18-2011, 10:54 PM
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Jacob's First Word!
I got home from work today and Jacob gave me a big smile and said, "hi" clear as anything
 I was in shock and probably wouldn't have believed it, except our nanny was there and heard it too. She said, "It sounded like he said hi." I said, "oh good, I thought it was just me." He's been wearing his voice valve regularly now and has really started figuring out his voice, which he's quite excited about, as are we! I never dared hope he might formulate a word???!!!
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Mom to Jacob, 26 Weeker - Our miracle boy, hero  and the light of our lives Born 06/25/06; trached 10/17/06 for bilateral vocal cord paralysis, laryngomalasia, tracheamalasia, acquired subglottic stenosis, Failed Double Stage LTP 2009, Failed Single Stage LTP 09/16/10, Retrached 10/03/10;CP.
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#2
01-18-2011, 11:01 PM
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That must have felt wonderful
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Kate, mother to Madalynn born full term 5/1/10, laryngomalacia and Left Vocal Cord Paralysis (resolved 1/2011), failed supraglottoplasty  5/17/10, trach 5/28/10, g-tube 6/30/10, home for the first time 7/3/10  decannulated 9/21/11 http://www.youtube.com/watch?v=nUijY...lUI&feature=BF http://www.youtube.com/user/theranso.../0/CJthuhZ3y3U
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#3
01-18-2011, 11:03 PM
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That's realllllly awesome!
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SUSAN - Mom to Ainsley (age 6 - DOB 10/18/06) + Evie (age 12) and Adrian (age 9). Adorable and Trached since 11/06 (scarred vocal cords & OSA) but capping with mixed success since 1/09, sagittal craniosynostosis (cranial reconstructions 1/07 & 7/07), MicKey G-tube 06/07, Nissen 10/08, unusual form of cerebellar hypoplasia, hip dysplasia (Surgery 11/07 & 4/10), ptosis(post-surgery). Blog Link: http://ainsleyrae.blogspot.com/ 
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#4
01-18-2011, 11:12 PM
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Fantastic
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  Life is not measured by the number of breaths we take, but by the moments that take our breath away. Mum to an ex 24wk prem now 4 yrs old with Chronic lung disease, chryocid web, immobile vocal cords and vision impaired from ROP. Decanned 10th March 2011 , plan to repeat LTR due to body reabsorbing graph, date unknown 
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#6
01-19-2011, 01:45 AM
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KIM THATS AWESOME!!! How exciting!!!! YEAH Jacob!!
I hope things are going well for you...I miss you!!  
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Katie-mom to Mitchell, DOB 12/16/04 trisomy 13 mosaic, severe laryngotracheobronchomalacia trached 5/04, cleft lip and palate DECANNULATED 12/16/10 A GREAT BIRTHDAY GIFT! www.caringbridge.org/mn/mitchelljohncragg 
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#7
01-19-2011, 07:42 AM
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Thats awesome!!
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 Gretchen, mom to Jorie born 5/23/08, looking for diagnosis. Trach and GTube August 2008. Home since 1/14/09, Been almost completely vent free for the last two months!! Left hip osteotomy 11/19/09, right hip osteotomy 12/17/09 - spica cast free now and trying to get those little legs working.
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#8
01-19-2011, 07:47 AM
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Wahoo!!!! Wish Jacob could hear all the virtual "Hi!!!s" he is getting right back!
check out my blog at www.momofmanyneeds.com
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Amanda's mom, deb.
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#9
01-19-2011, 07:56 AM
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Yay!! WTG Jacob!
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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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