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Old 01-19-2011, 05:57 PM
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Jordansmommy Jordansmommy is offline
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Default So Exciting!
So Jordan is 19 months old he has very low tone and he just rolled over on his own for the first time tonight!!! I am so proud of my little man! Although the reason he rolled was because he is into playing with his cuff on his trach and it flopped to the other side of his neck and thats what he was going to grab! We tell him not to touch the cuff but it helped him to roll so yay for that!
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Jordan was born on June 19th 2009. Has an undiagnosed Congenital Myopathy and excess Glycogen storage disease unknown. Trached/ vent/ g -tube in August 2009. Big sister Alexis is 3 1/2 and healthy.
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Old 01-19-2011, 06:09 PM
Billy'smom Billy'smom is offline
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Woo hoo! Way to go, Jordan! I remember when my kids finally rolled over. It was so exciting.
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Sue, mom to:
Chris (21)-neurodegenerative disease, thalamus lesions, nystagmus, mild MR, g-tube, gastropheresis, Girdlestone on both hips, spinal fusion, nonwalker/talker, WWE fanatic (especially the scantily clad Divas)
Billy (20)-neurodegenerative disease, thalamus lesions, nystagmus, mild MR, g-tube, fundo, Girdlestone on RT hip, spinal fusion, Baclofen pump, larynotracheamalacia, trach, LTV1000 24/7, nonwalker/talker, and now full body stiffening from what cause I do not know.
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Old 01-19-2011, 06:12 PM
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jamie jamie is offline
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yay!
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Old 01-19-2011, 06:18 PM
Alex's mom Alex's mom is offline
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Go Jordon!!!
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Has a daughter who is vent dependent.
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Old 01-19-2011, 06:41 PM
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Yoanna Yoanna is offline
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I can see some new house rules coming into effect

1. Clean up your toys
2.Make your bed
3. Play with your trach cuff

LOL congrats!
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~Mom to Fatemah, born @ 28 w/gestation in 2009 w/grade 4 IVH on l/r sides of brain, post-hemorragic hydrocephalus - currently has VP shunt, beckwith-wiedemann syndrome, macroglossia (corrected with surgery 01/10/2011), tracheostomy, broncho-pulmonary dysplasia, slight hemiparesis on right side, g-tube, myringotomy w/tubes 01/10/2011, malignant epithilial tumour (surgery 06.03.2011), cyst on brain stem (surgery 06/06/2011), diagnosed diplegia Cerebral Palsy[/b])~
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Old 01-19-2011, 09:17 PM
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lynn lynn is offline
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Way to go Jordan!!!
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Lynn, mother of Brooke(19), Haely(17), Sydney(12)Dominic(1) and Joseph(DOB 11/03/06)DX:Jeune's Syndrome:trach 12/12/06:vent depend: Sprinting 12 Hrs a day!!!!EE:GERD:Hydronephrosis:Situs Inversus:Aortic Stenosis:Myocardial Hypertrophy:Kidney Transplant 08/18/10 http://www.caringbridge.org/visit/josephmollica
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Old 01-20-2011, 12:37 AM
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glowingpurpleaura glowingpurpleaura is offline
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wtg jordan!
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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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Old 01-20-2011, 02:05 AM
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JWorthington JWorthington is offline
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wooho!
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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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Old 01-20-2011, 06:30 AM
jaysmom jaysmom is offline
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Horray!
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Old 01-21-2011, 07:00 PM
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Ainsley's Mom Ainsley's Mom is offline
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Congrats on the big milestone!
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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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