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Reload this Page Good news so far, but the mystery continues.

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  #1  
Old 01-23-2009, 07:00 PM
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Gretchen(Celia's mom) Gretchen(Celia's mom) is offline
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Default Good news so far, but the mystery continues.
Copied and pasted from our blog,,I'm tired!! lol

Everything went GREAT!!! I can not say enough about Childrens hospital!! They ROCK!!!
The neurosurgeon sees nothing critical!! Woo-hoo , no hydro and no tethered cord!! The NS does want her to see the rehab specialty doctors to evaluate her and see if they can figure out where all these symptoms are coming from and if her filum is too tight. He will also talk to the ortho to see if he has any thoughts as to if her filum is too tight.
So all in all GREAT news so far, but the mystery continues.
Thanks for all the thoughts and prayers!!!!!
We will be heading home tomorrow(Sat.), it is snowing here right now, pray it stops and we don't run into any on the way home!!!
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Gretch mom to, Heather(22), Aimee(19), and Celia(14) Dandy-Walker syndrome,cleft palate(repaired at 9 yo!),t-tubes,asd, left pulminary arterial stenosis,trach,aspiration,reflux,fundo,g-tube,npo,dysphagia,kidney defect,neurogenic bladder & bowel,spina bifida,scoliosis,seizures,hip dysplasia, sensory issues, ADHD,vasomotor rhinitis,autistic like behaviors, hearing aides.
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Old 01-23-2009, 07:28 PM
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That's fantastic news, Gretchen! I'm sorry it leaves you hanging, but I'm really glad it's not either of those two things.
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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).

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Old 01-23-2009, 08:42 PM
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Hmmm... wishing you had answers, but this "no news" is good news!
Hope
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custodial g-ma to Shelby ~~ premie born 9/28/05 with choanal atresia, trached 12/28/05 -- sub-glottic stenosis due to repeated intubations, decanned 3/10/08

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Old 01-24-2009, 05:54 AM
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I wish you'd gotten some answers but at least you rules out some stuff. Our kids can be such mysteries! Be careful coming home. Deb
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24 weeker now almost 11 years old and in third grade!
trach-decanned for good in 2008, gtube, asthma, CP, MR, GERD, latex allergy, osteopenia, aplastic cerebellum, ADHD/OCD, 60 lbs of humor and fiest, 4'4" tall, patient at Shreveport Shriners Childrens Hospital,, and I may be leaving something out but she is happy and growing and the light of our lives! DECANNED 6-17-08
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Old 01-24-2009, 06:16 AM
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Congrats on the good news. Have a safe trip home.
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Has a daughter who is vent dependent.
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Old 01-24-2009, 08:26 AM
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Well, at least it was good news and yet though you are still hanging-it wasn't bad news! That's great! Take care and drive safe.
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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!
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Old 01-24-2009, 10:07 AM
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We are always happy to hear good news. Good luck getting home.
Tess
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Tess-mom to Abigail 9 yrs old. DX Central Congenital Hypoventilation Syndrome and has a pace maker. Abby was decannulated April 15, 2010. She now sleeps with a V-pap machine and mask. Also mom to a fiesty red head named Olivia who is 6. I am the happiest mommy right now, all is good.
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Old 01-24-2009, 12:55 PM
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Glad to hear the great news. At least you can start checking items off the list of "could be's".

Have a safe trip home!
~Christy
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Christy, Mom to Murphy, (8), Harlie (6) and Cooper (4). Harlie has Goldenhar Syndrome & VACTERL Assoc. Missing left ear/canal, left eye anomalies, g-tube & trached due to underdeveloped jaw, 5 open surgeries, three jaw reconstructions (still trached, though), spinal fusion surgery, 30 surgeries total so far. www.lifesinceharlie.blogspot.com
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