Vignesh has found a new love. Right from the time he was a few months old, singing a rhyme would bring smile on his face. So, we got him a rhymes CD a few months back but he didn't seem to show any interest at that time.
About two days back, Vignesh and I were bored. I remembered about the CD and played it on the TV. Ever since then he has just fallen in love with it. Once in a while he turns back and gives me a brief smile and goes back to watching the rhymes again. I'm not sure if its the rhyme or the colorful background or both that has won his liking. And, Its so cute to see him sit by himself (refuses to sit on my lap while watching TV), leaning forward and watching television with so much of interest. Will get a photo of that soon. When I made him stand, he began to wave both his hands up and down. Thats probably his dance move :-)
Another achievement at PT today. He was able to stand holding to the walker for a little over five minutes. Thats definitely an improvement from him previous record of about 2 minutes. We're planning to order a standing frame for Vignesh with the hope that it can work the same magic as his chair.
And, I'm extremely excited! We're expecting the PMV tomorrow or at the most by Friday morning. So, next time when I tickle him, I would probably be able to hear him laugh instead of the noise of secretion that I hear now. Isn't that something to truly rejoice about!
SOunds like a great dance move - that is awesome
ReplyDeleteMusic and motion are such wonderful therapies in themselves - for people with special needs and people with unspecial needs
Sumithra,
ReplyDeleteWe did not use a saturation monitor for Gage with the PMV, consider the PMV like capping the trach, it pushes air up past the trach, kind of like capping. You will be able to see if Vignesh is able to tolerate it. Gage started out up to fifteen minutes a day, until he was able to tolerate it all day. You will be able to be the judge at how long he can tolerate it. He will cry at first as the first sensation with it being on will probably be uncomfortable for him and most likely scare him as he is not used to be able to breathe through his nose and mouth.
( Take in mind some children can not tolerate the PMV)
(I think some people get holes drilled in theirs if they aren't able to tolerate it)
Just to verify this go on to the trach forum and find some old threads that have got to do with the PMV.
Now when you say vent, do you mean oxygen or moisture machine?
The PMV does dry out secretions, with Gage he is able to produce them through his nose and mouth.
When you get your PMV if Vignesh is on the vent there are specific guidelines for that. I am almost positive you should receive a Passy-Muir tracheostomy and ventilator speaking valve instruction booklet.
Did this help you at all?
Fantastic music therapy.....Vignesh you sound like a dancing machine now. YIPPEE!!
Hugs,
Lisa
Wow, lots of great things happening at your house! I think it is so cute that Vignesh has all the right dance moves!!! You sound great, Sumithra. I am happy for you!!!
ReplyDeleteSumithra try holding the trach in place with one hand and turning the PMV on so it's on really tight.
ReplyDeleteLet me know if this works.
Best,
Lisa
Hmmmmmm, are you holding the trach and then pushing the valve on and turning it so it feels tight?
ReplyDeleteTake in mind with forceful pressure that PMV can pop off but shouldn't just pop after a tiny cough.
Does the PMV feel lose around Vignesh's trach? It should fit quite snug.
Best,
Lisa
How is the valve working?
ReplyDeleteWhat did you think of hearing Vignesh being able to make sounds?
I am so anxious to hear your thoughts on this and to hear how he is tolerating the PMV.
Hugs and all the love in the universe.
Lisa
Sumithra,
ReplyDeleteGAGE SAID HIS FIRST WORD,
it is on video on my blog!
I am overwhelmed right now, and so happy!
Best,
Lisa