Heart Problems and CMTC - Page 3 - Vascular Birthmarks Foundation Forum
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  #21  
Old 02-26-2010, 11:31 AM
missy missy is offline
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Does she respond to normal, every day sounds? Perhaps she has an ear infection?

Can you go ahead and take her to the doc and will they set her up with the audiologist?

Missy
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  #22  
Old 02-26-2010, 11:42 AM
abatie abatie is offline
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We had "thought" she was hearing normal sounds. She has always been very visual - suprisingly so compared to our other three. What we think what we thought was listening to sounds is actually her watching. The thing with babies is that so much is in close contact you are doing visual and audio input at the same time. Nobody suspected it. The person evaluating and I realized what was happening at the same time (I used to be a special education teacher). We did a bunch more informal tests last night and every time if there was visual input she would pick up on what was going on but without it she didn't.

She will be going to see the audiologist but it is a matter of where because of the limited services provided near our home. The school staff feels that it would be better for Mayo to do it since she already has such a complete record there.
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  #23  
Old 02-27-2010, 01:36 PM
missy missy is offline
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Well, keep us updated. Would the school staff agree to doing an eval first and then going to see the people at Mayo? I mean, doing both? With our son, we always found it was good to get multiple agencies to do their own evals... one professional would always catch something the other missed and vise versa.

Missy
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  #24  
Old 02-27-2010, 03:25 PM
abatie abatie is offline
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Missy,
The school did go ahead an evaluate with the test materials they had when we realized what was happening (things move really fast in a school with less than t200 students and parents who are both at school to sign consents). They were the ones that then called our family doctor and I was able to be in on the phone call between the family doctor and speech therapist. Our family doctor agreed that Mayo was the place for the evaluation. She called yesterday and got an appointment for us while we are there in March. She had talked to the nurse that works with the pediatrician we are seeing and she then talked to him and he agreed that based on everything going on with Becca that it needs to be evaluated. She has an appointment with their ENT first but they are fully aware that the evaluation will probably be needed. From what I read about their department they are all in one office working together so that will make it easier to get the appointment for the evaluation while we are there (they may have just scheduled it that way for all I know). Everyone here is shocked by this because we all thought her hearing was fine. It has been amazing the different things we have noticed since the initial evaluation a couple of days ago. She is doing just about everything by visual input. I will be really surprised if they don't find some kind of loss.
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  #25  
Old 03-06-2010, 01:17 AM
abatie abatie is offline
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We go back to Mayo on Monday. Becca will be seeing a pediatrician who has interests in vascular malformations and long term care, GI, radiology, ENT, and PM&R. We have our own questions and questions from the Birth to Three therapists. Hopefully we will get some more answers (and probably even more questions). The limb length descrepency is getting much worse so I am hoping the pediatrician will have some answers (he works with KT Syndrome cases so he probably will). The hearing issue is also a real concern. We will update throughout the appointments so everyone can keep up on the findings. You can also check Becca's CaringBridge -http://www.caringbridge.org/visit/beccabatie Watch for updates.
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  #26  
Old 03-06-2010, 02:56 PM
missy missy is offline
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We will keep checking in with you and will be praying that all your questions have god answers on Monday!

Missy
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  #27  
Old 03-06-2010, 04:53 PM
abatie abatie is offline
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Missy,
Did you ever hear back from the CMTC expert on my questions?
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  #28  
Old 03-06-2010, 10:27 PM
missy missy is offline
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I have not heard back from her yet. I will forward her replies when I do.

Missy
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  #29  
Old 03-28-2010, 01:23 AM
abatie abatie is offline
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Amazing update-Becca crawled for the first time last night (there was concern that she might not be able to) and she got herself to a sitting position independently for the first time tonight! So exciting!
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  #30  
Old 03-28-2010, 02:28 PM
missy missy is offline
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Wow... Go, Becca!! That's a couple of milestones in as many days!

Missy
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