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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
10-13-2006, 01:15 PM
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We went to UCP of mobile today and had an evaluation for communication devices and he has a very low tech one right now it has to choices basic things, but he accurately got it. Then they tried him on one that was really high tech and he could choose from four things and with a little bit of help he accurately identified and answered questions.
 I knew he was smart but i didn't know he was ready for something like. I'm on cloud nine This is a picture of what he has now and the choices he can make and then in a couple of months after his eye exam next mont and he gets his new glasses we'll go back in a see about a new device.  sorry that the pics are big but if they were smaller you couldn't see it. becca
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becca, mom to jonah dob 11-25-03.treacher collins extremely delayed but the light of our lives and very determined to prove everyone wrong especially the doctors. 
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#2
10-13-2006, 01:21 PM
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Allison used the PECS cards (second picture) and system successfully for about 2 years and then decided she wanted to talk. They are reall a good way to get communication started. Making choices is a very important part of the process. When I was an aide at school we had a few kids who used the "switch" boxes like the first photo as well. I dont remember exactly what they were called though. There are boards that have like up to 9 choices I think. They work great as well. Im really happy that Jonah is going to having more and motre opportunities to communicate his wants and needs! He will really "bloom" doing it. Deb
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Grateful thorns have roses 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 [IMG] [IMG]
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#3
10-13-2006, 01:40 PM
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That looks like fun. I am sure that Jonah will be a pro at it in no time at all.
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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#4
10-13-2006, 04:31 PM
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Donovan has been using PECS for about a year. We are looking at an assistive device soon perhaps. The little stink still doesn't want to talk, but signs well and used the PECS. He has the capacity but either he's too stubborn to talk or he has some aphasia. Either way, it has helped.
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Melisande H. Mother to The Preeminent Grand Poohba Donovan (5/27/03), still some "resolving" apnea, on the autism spectrum and some cerebellar malformations. Trached since he was 6 weeks old. Recently DECANNULATED 4/16/09!! Big brother to Conrad! 
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#5
10-13-2006, 05:54 PM
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Sounds like it will be a great thing for Jonah. Nate currently uses a basic big mac switch. We're still in the very early stages of using it. But I'm hopeful that eventually he'll be able to use something like that for communication.
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 ~Marcie~Mom to Nate (8); trached at 5 wks due to chronic aspiration; CP, hypoglycemia (controlled with diet and meds), seizures, g-tube fed; Also mom to Brianna (16), Allison (14) and Delaney (3) My blog Life Is Good
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#6
10-13-2006, 06:05 PM
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That is awesome. i am so glad he has a way of communicating with you.
Jennifer
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I am the mom to a former 28 week monster. Elizabeth is now 2 and keeps me on my toes. We have a CTR and Decan scheduled for May 17, 2007. Now rescheduled for June 7, 2007. If they change this date one more time I swera I am going to  Mine and Elizabeth's my space page: http://www.myspace.com/tigeress1026
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#7
10-13-2006, 10:32 PM
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That's so excellent Jonah!!!
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Sarah, Mommy to Malakai (9), Aubrey (8), and Keturah (6) trach, vent, Chiari I, BVCP, CCHS http://s109.photobucket.com/albums/n73/lovemymak/  
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#8
10-14-2006, 10:51 AM
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Well done Jonah!
We love progress - he is such a clever boy  Julie
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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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