PMV trials

It was so cool!!! We took Faith to see Dr. Guarin yesterday to test out her new PMV (Passy Muir Valve) and she did really well with it! I did bring the video camera and Kim (speech language pathologist) was kind enough to video it for me.

First Dr. Guarin wanted to show me how to use something else - a new trach connector for giving Faith inhaler treatments which just happened to make a whistle sound when Faith tried it out. Faith thought that was pretty funny and wanted to keep doing it (we didn't tape that since it wasn't really why we were there, but too bad since she was pretty cute about it).
Then, after checking her pulse oxygen level, we put on the PMV and Faith acted like it was nothing, no big deal, didn't bother her a bit and then slowly she started realizing she could make more sounds than normal with it on and she just got louder and louder and louder and we were all laughing and Kim started tearing up!! She wanted to know why it wasn't making me tear up, but it wasn't the first time I had heard it -- I had been plugging her trach with my finger while she was exhaling for a couple weeks now and I knew how much of a difference it made. I was only afraid my expectations/hopes were going to be too high, as I have heard many stories about other children not tolerating the valve and blowing it right off. Faith loved having the valve on and being able to play with her voice and was upset when we took it off. We are only trying it out twice a day for 5 mins the first day, 10 the 2nd, 15 the 3rd and then we can move up in 15 min increments, to 30 mins, 45, etc. But I think within a couple of weeks Faith might be wearing the valve full time! We did the second 5 minute trial last night at the dinner table and Faith loved it again and we realized she is going to give both Fred and Anthony a run for their money on being the loudest Kargoll in our house! How crazy is that when you remember she couldn't make any sound for the first few months of her life!! We will never forget her early Dolphin sounds and luckily those are caught on tape as well.

I will have upgrade my Babysite account so I will be able to post videos!! I promise to give that a try this weekend.
By the way, you all are way to kind about my website skills - this whole website format is completely provided by Babysites and I'm just adding the text and pictures. This is so easy, all of you could do it - and it's free (until I upgrade anyway, but even that is cheap - just a small annual fee).

Love from all of us!

P.S. I wanted to share something very special about this Passy Muir Valve - I learned that it was invented by a young man in his 20s, a quadriplegic, David Muir, who suffered from muscular distrophy and eventually had to be trached and ventilated. His story is truly amazing, please check it out on www.passy-muir.com and go to the about us section. He is another amazing example of how people with severe disabilities in life have a capacity to succeed in life that makes me certain that Faith's disabilities will also become her strengths.