Wednesday, December 31, 2008

Christmas Morning at the Barrie's

Well, as you have probably figured out by now I am not as good about updating the blog as I was in China. I guess if I was up at 3am here like I was over there, that would help. I wanted to upload this video of Molly's first Christmas experience. It was quite overwhelming for her. We gave her about 8 or 9 gifts and ended up letting her hold on to about 2 of them. By 10am she resembled a crazed junkie and so we quickly put away the smaller items and left her with her kitchen and her scooter..both which she loves. We woke up...did the present thing and had a nice quiet day...just the family. Rob cooked up a Christmas meal for us and we spent the day playing with our new toys.



On the hearing front we have continued to make phone calls in an attempt to get a handle on where Molly's hearing really is. One would think that this is a fairly simple request for information. My daughter is deaf, what can we do to find out where her hearing level is? The last place we took her told us it would take months and months of testing to determine this..and it would all be based on a behavioral response. We called another audiologist who said that she could see Molly at the end of January back in Birmingham but that she would be running the same behavioral test as well. An ABR is objective but requires testing for her being a sedation risk and hours of no food and water and sedation obviously. An OAE is pass/fail and doesn't really give you any information at all except what we already know...Molly has a hearing loss. So here we sit...home for a month and a half and we dont have any more information on where she is than we did when we left. We have experts in audiology, speech therapy, and auditory/verbal therapy all telling us what we HAVE to do and all experts in their fields and their advice all conflicts with one another. We are more dazed and confused than ever. The A/V therapy calls for a discontinuation of signing as a form of communication but every parent of a deaf child I have spoken with tell me that when they did that it was a complete disaster and quickly went back to signing. Speech therapists have also seconded the opinion that communication is key, signed or verbal.

All we want to know is how deaf she is and so we hope to find someone at some point who can help us answer that question that doesn't take us driving two hours every three months to put Molly in a booth and hope she reacts the right way.

4 comments:

Patientlywaiting said...

The video is too sweet. I love how big brother insisted that his little brother go first opening a present. Looks like Molly loved the kitchen set! Happy New Year!

Hugs,
Robin

Katherine said...

Good luck 2009,Happy new year~~!

Lindsey's mom said...

Great video..I pray you get the answers you need to get...I can not relate on the hearing issue..but on medical stuff and my kids I am so with you..it is HARD

Amy said...

First of all, I love the PUMA outfit! Molly sounds like quite an impressive little lady. :) When she's ready for company, we'd love to meet her. We'll be praying ofr some answers in the hearing department. I'll check with the program I worked with in DC and see if there's anything different they can offer. Would love to catch up over some coffee now that Cafe Domain has reopened. Happy New Year!