OK. We have dealt with a problrm akin to this since the trach surgery. "Professionals" in the medical community, from Aides all the way up to Doctors, look at Vivian and ask US what they do with her. They have no clue when they see an otherwise healthy trach baby. Can you tell this is a sore point for me?!

But this last one took the cake. We gat approved for speech therapy through the state. They said, "Oh yeah, she needs it to be able to use her muscles when she gets the trach out." It's throughj EI through the state, thank god, it will cost us nothing. But is it even worth that?!! The woman shows up at our house for her first session, and says, "OK, What do I do?" That is WORD FOR WORD from her! Makes me wonder mhat type of training she has! But then again, beggars can't be choosers ,right?

I am just so annoyed with the medical community looking at Vivian like she is a 3 headed monster!

So, I guess we just stick with making funny faces at Viv, trying to get her to immitate ,and thank god for the Signing times videos!

Mom to:
Matt (1991) Megan (1994) and ^Eric Jr^ Levi and Vivian (2003) at 26 weeks

Hi Erika,

I am sorry that you are having a hard time getting a good speech therapist for Vivian. If you feel that her therapist is not qualified to work with her, call your coordinator and get someone else. How about the original therapist that determined that she was eligible for the services, would he/she be any better, if she is not available, maybe she can recommend someone. We have had a great experience with EI. We only had one therapist that was useless. My son Drew would not eat "people food" at 18 months so we started o/t to work on his sensory issues. The first therapist that they sent out told me that because he could crawl on the carpet he did not have any sensory issues!?!? I guess it didn't matter to her that he would not eat! I called my coordinator and got her replaced with no problem.

I hope that you find a great therapist for little Vivian! I'm glad that you are finding the Signing Times videos useful.

Take care,

Kelly

Kelly
Ben, Jack & Drew 05/28/02
Charlie 07/06/06
Aunt to: Liam, Aidan & Connor 03/05/08
www.outnumberedmommy.blogspot.com

Erika- Emma was also a "healthy normal kid" with a trach (her trach has been out for 2 months). Noone knew what to do with her, so she hasn't recieved any services! She now has her trach out, and we were told to go for speech therapy. My additude is "why now, when you couldn't figure out what to do with her before?" My SIL is an SLP, we reference her whenever we have questions about speech. Emma never had any valves or speech specific trachs, because her airway was so narrow. She now speaks in a whisper (as if she has laryngitis). She speaks very cleary, but her vocal cords are still underresponsive due to lack of use. They should get stronger with time.

I don't know what to tell you about your SLP. They literally don't know what to do with our kids. I would be glad to share any info I have about speech and how to assist with trach and after removal. Email me if you have questions that you want me to ask my SIL, she will be glad to share her info! Good luck!

~Melissa mom to Sarah, Ryan, & Emma. Post 26 weekers weighing 1lb 7 oz each. Visit our web sites at: http://www.tracheostomy.com/trachkids/kids17/emma.htm , http://www.gkmom.org

erika,
I'm sorry your have a less than helpful speech therapist. that is so frustrating.
The person that came and did the speech eval on my son came right in and within literally a minute was trying to pick him up and was saying "will you let me hold you?" (all the while he is screaming, kicking, trying to get away). Then she continued to tell us she thinks he is autistic, etc (by now she had only been here for 3 minutes...) and i was furious. we already knew that Charles most likely did have autism, but she was NOBODY to walk in our home, yank him out of my arms and then declare his diagnosis. I was irrate. Plus she smoked (i have nothing against smokers, but the smell of it makes me nauseous and i don't want my kids smelling like it)
but i was hesitant to request someone else because here, SLPs are few and far between. But I called and said i needed someone else and i got a new person within 2 weeks, and it was well worth the wait.
Anyway, now is a good time of year to ask for a new one because a lot of the EI SLPs are losing their case loads as kids go to preschool so hopefully someone will have an opening for Vivian.
Sorry so long winded, i can just relate to totally incompetant therapists. they aren't worth your precious time.
Good luck!!

Meg

Kelly, I can never thank you enough for the videos! As I sit here and pump, (and type) Vivian is in there intently watching, which she does every morning while Levi takes his morning nap. It's amazing, and she seems to be picking some of it up...

Melissa, I will keep your offer of speech help in mind, thank you. Vivian has a 90% stenosis, we will never have a Passy Muir Valve or anything like it either, the only hope for speech is decannulation. And then there's the Left Vocal Chord Paresis, making odds of "whispering Voice" all that much higher.

Meg, I wouldn't let a smoker around our kids as a therapist. I quit smoking before we implanted the embryos, and I won't let family that smokes hold them without either fresh clothing on or a blanket covering them. There are over 4,000 chemicals in smoke left on clothing, and their fragile lungs need none of them! I would have been irate in the situation you were in also.

I will look into getting a new speech therapist. I don't count on it happening, though. It seems that there just aren't that many resources by way of specialized care in this part of the country, atleast that has been our experience so far. I usually end up thinking she is better off if I research and do things on our own, and BONUS, that way she is not around extra people that have the potential of getting her sick after leaving the house of a sick child and not thinking about it...

Mom to:
Matt (1991) Megan (1994) and ^Eric Jr^ Levi and Vivian (2003) at 26 weeks

The ST should do an evaluation and have goals that they must work towards and also have set times and length of time for eash ST session. You should have a copy of this before they even started. You need to contact the case worker in EI regarding this. Hope that helps out!

Danielle
Easton, Blake & Hunter
1-24-99

they gave me a sheet stating goals, but when she got to our house, she says, well i don't know what to do since she doesn't make any noise...she asked me what we are supposed to do to help her..

Mom to:
Matt (1991) Megan (1994) and ^Eric Jr^ Levi and Vivian (2003) at 26 weeks

ask for someone that knows sign language.
basically they visit and play while they sign all toys and emotions. it's neat if you can handle the "company"
kate

Kate Miller mom to Charlie, Katelyn, and Sarah born 9/02.
28wks