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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
09-17-2007, 03:14 PM
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Update - and good news!
We took Sam to see the neurologist today. The cyst on his brain is 'reasonably large' but not that big to cause concern at this point. He plans to scan him again in about a years time and if it hasn't grown significantly then he will leave well alone. He thinks that this has probably always been there and is just the way Sam's brain has developed and very much doubt it will cause any problems in future - unless Sam starts to get floppy, has headaches or seizures. His only advice was to avoid contact sports! Don't think we'll be planning any of that in the near future!
Juliex
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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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#2
09-17-2007, 04:23 PM
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Oh Julie!!! That's wonderful news!! ::
 hew!!::: I am so relieved for you, I can't tell you. I would have felt sick if this had needed intervention, though I'm sure it would have paled into insignificance compared to what you would have felt. Sitting here deflating....... Kate XXXXX 
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Kate, Mum to: Angus 27/6/04-24/11/10 My star of a boy who was vent and O2 dependent 24/7. One of the loveliest kids you could ever have met. Pics and vids Blog Juliet 28/9/99 perfectly healthy and beautiful Alasdair 28/9/10 Delightful, easy-going boy I'm a 'dawk'  
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#3
09-17-2007, 04:29 PM
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That IS great news!!!
 
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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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#4
09-17-2007, 05:15 PM
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That's great Julie! I hope you can put it out of your mind for awhile now.
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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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#5
09-17-2007, 05:55 PM
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You needed a bit of good news these days! Glad to hear it.
Suzanne
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Suzanne Mom to: Berkeley (June 2002),Griffin (July 2004), and Parker (November 2006) My family blog: http://www.mylifewithboys.typepad.com Parker's LTP Blog: www.parkersplace.wordpress.com 
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#6
09-17-2007, 06:20 PM
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Love good news. Karen
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Karen, married to Charlie. Mom to Gilbete', Jeanette , Andrea, Ben, Ciara, Brian and Brady. Also mom to Alize who is with God. Grandmother to Marek, Paige, Vincent, Leilani and Cayden, Emma and Samuel. 
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#7
09-17-2007, 06:44 PM
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Glad to hear the wonderful news!!!! It must be a relief.
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#8
09-17-2007, 07:50 PM
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  Awesome new!!! I am so happy for you.
__________________
Rene, Mom to my Angel, Tommy. Born 9/25/06 at 33 weeks, with Single Ventricle Heart Defects and Cricopharyngeal Achalasia (Gtube dependant, poor swallow). Trached at 2 months for Severe Subglottic Stenosis. My little flirt died unexpectly 8/20/08 from complications from undiagnosed bronchopneumonia.  Forever, Tommy's Mommy http://www.musingsofaheartfamily.blogspot.com/
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#9
09-17-2007, 08:20 PM
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Oh Julie! That IS good news! Big hugs to you and Sam from across the pond!
Here's to even more good news for you! Jennie
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Mommy to Hannah 8/2/03: fmr 25-weeker, trached 11/03 for subglottic stenosis, LTP 4/05, CTR 4/06, LTP 1/07. Decannulated 1/19/2007!! Gearing up for reconstruction #4; Also Mom to Brianna, 2/22/98: fmr 24-weeker, a little dramaqueen. My amazing gifts.
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