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Reload this Page Video of Ainsley Cruising (While Capped)

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Old 04-26-2012, 12:53 AM
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Ainsley's Mom Ainsley's Mom is offline
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Default Video of Ainsley Cruising (While Capped)
YouTube Video
ERROR: If you can see this, then YouTube is down or you don't have Flash installed.
Ainsley did the most amazing thing yesterday, I had to show you all! It's on the blog but I'm going to try to embed it here, though sometimes it takes a few times before I can get it to work. Anyway I'd been outside doing yard work and came in for a minute and she was in the kitchen with the nurse looking like she wanted to cruise and transfer from one countertop to the other. So I setup a little PT game and put cherries on all the kitchen countertops. She had to go all the way around the island and transfer twice, once to get to the side where the dishwasher is and again to the side where the oven is. She didn't have the AFO's or her shoes on because it happened spur of the moment. I was glad I thought to video it though by that time she'd already done it once and she was getting tired. Even so she signed more again at the end, she was having so much fun. We're so proud!

On another note, though I never did get the video of her being vocal wearing the valve with the 3.0 you can see her here wearing the 3.5 and a cap. Her vocalization in this video is pretty average for her. She's pretty physically active too. There are times that her breathing gets very loud though I think it's pretty good during this video. It's been awhile since I've shown her wearing her cap so I thought it might be interesting for some of you to see.
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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/
Last edited by Ainsley's Mom : 04-26-2012 at 12:59 AM.
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Old 04-26-2012, 03:55 AM
koko koko is offline
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What a great activity! Her motor planning is awesome! Go Ainsley!
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30 y/o adult with chronic respiratory failure. Trach, g-tube, port. Oxygen/vent-dependent.
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Old 04-26-2012, 06:11 AM
Sweet Harrison's mommy Sweet Harrison's mommy is offline
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This is awesome Way to go, Ainsley!!!
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SUSAN-mom to Harrison, born full-term(11/1/10) with an undiagnosed congenital diaphragmatic hernia (CDH), hypoplastic right lung (caused by hernia), trached at 4 months, g-tube and fundo at 6 weeks. Home in March 2011. Weaned completely off of the vent in July Wearing PMV 24/7, 02 at night, failed decannulation in October. Hoping for better results next time!
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Old 04-26-2012, 06:48 AM
lovemy3 lovemy3 is offline
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Susan that was amazing! Totally made my day!! I love the motor planning activity and I am going to steal that for my daughter. I love her confidence too!!!
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Old 04-26-2012, 01:17 PM
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that is wonderful
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Old 04-26-2012, 03:16 PM
san123 san123 is offline
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Way to go Ainsley!!!
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Old 04-26-2012, 08:23 PM
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She is precious! What a great video
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Mom to Aven, healthy as anything, 5 and Caleb ,born 39 weeks,9.9.11, Trach, Gtube,Nissen,10.6.11, Mandibular distraction 8.8.11,tonsils/ adenoids 2/27/13, DECANNED 4/18/13!!no official diagnoses,profound hearing loss in left ear,cardiac abnormalities,extra T4 vertebrae. Pierre Robin Sequence
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"For you created my inmost being; you knit me together in my mother's womb.. I am wonderfully made." Psalm 139:13-14
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Old 04-26-2012, 09:39 PM
SammyJo SammyJo is offline
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Beautiful sight! It must have felt amazing! Way to go Ainsley!


On a side note, has Ainsley always sounded loud while capped? Sam sounds like that and it is getting worsens of the last week. I think it bothers me more than her. Hoping for a granuloma and not airway changes. Just curious from your experience if that is a normal capped sound?
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Alex, mom to Samantha born 38 weeks on March 7th, 2011 with Congenital Nasal Pyriform Aperture Stenosis, trached 3.30.11. Grade I Congenital SGS, diagnosed 11/30/11. Also mom to big brother Luke (3).
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Old 04-26-2012, 09:48 PM
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Susan, thank you for sharing, brought tears to my eyes watching how amazing Ainsley is. Go Ainsley!!!!!!!
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Kara. Mom to Bailey (3/14/2006), Mason Premie (09/17/2007), and Cillian - Digeorge Syndrome, Tetralogy of Fallot, ASD, VSD, Pulm artresia, non functioning pulm valve (replaced with human homograft valve 8/2011), mild tricuspid valve failure (repaired 8/2011), tracheostomy, g tube, nisson fundo, double hernia surgery, submucosal cleft palate, aortic stents, pulm hypertension, tracheobronchial malacia born 1/10/2009. Three sweet angels.
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Old 04-27-2012, 12:05 AM
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What a great video...

Thank you for making my night!

I am so happy for you & Ainsley!
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