The first ENT we saw suggested Brigita return in 1 month, attempt the behavioral hearing test again, and assess Brigita for tubes then. I disagreed, explaining that she would not make enough progress in a month (after 7 1/2 years institutionalized) to complete the behavioral assessment and that Brigita needed every advantage she could get at this point in order to make more progress. After talking with the pediatrician, we both decided I would call for a consult now. Well, it went well! I love the new ENT. She works with the Down syndrome clinic here and also felt it was most beneficial to Brigita to go ahead and move. Unfortunately, we do not have know Brigita's heart history. We know she was thought to have been born with some issues that either healed or were never there when she was examined months after birth. Though all the doctors have agreed her heart sounds good, with the risks associated with down syndrome on the heart and with sedation, we all agreed to wait for the surgery after her cardiological assessment and ECHO, which is scheduled for 11/14/12. So, Brigita will have surgery on 11/20/12 to clean and drain her ears/ear drums, complete the sedated hearing test, and most likely put tubes in. I'm still struggling with the insurance company about getting an ophthamology appointment for Brigita. She is also scheduled to be seen in the GI clinic on 11/30/12. Lots of appointments.
On the home front, Brigita is doing well. She is doing self play more often. We are working on dressing and undressing and mostly she is cooperative and tries to help. We have been practicing with the toy where you stack the round donut shapes on the pole. She can now do this herself, though she doesn't notice the size differences/order. But initially I had to do everything with her hand. She can brush her teeth. She likes to "wash" dishes with me but gets very stressed out as to why she cannot get in the sink. She just doesn't understand this bathtub that the dishes go in. She loves bath time! That and swinging. She still loves to swing!
Please, put me in the swing!!
Here's some pics of her self play from this week so far
Talking to her bear
Mom made me play in the wagon. I wanted to swing some more! I'll throw her sweater out!
Mom, just let me do it, okay?
Self play with the swings
This camera case entertained her for about 30 minutes! She also hid
behind the curtain and under the high chair while playing with it.
Playing on the deck, because mom won't let me swing anymore! We were only out there for an hour!
She will also sit on the bike, not just pull it. She doesn't know how to push yet but lets me push a little bit
This is what she does when Mom doesn't see me sneaking
she gets in trouble down to the swings, does she?
Every chair gets tried and moved
We had our first post placement visit. With the guardianship, we had to have one within 30 days and then one completed every 3 months until she is adopted. The paperwork has been submitted from her country so my agency and I are getting the I800 completed to be sent. It will take 3-4 weeks to get that back after its submitted. Then we can get a court date and 2nd travel date for the actual adoption hearing!! I'm so excited! The remainder of the fees are due now (which I do have right now).
The final costs will be:
- travel for the 2nd and 3rd/final trip (Brigita only comes on the 3rd/final trip)
- lodging/travel/food for both trips
- cost of travel and other fees from first trip
- passport, medical, visa for Brigita for 3rd trip
I think that's it, but I'm probably wrong. In getting the paperwork from her country, I found out she was transferred to a children's hospital due to medical issues (she had jaundice, was diagnosed with Ds, and had suspected heart issues). She stayed there for about 2 1/2 weeks and then was sent to the orphanage. I know have the name of the orphanage she stayed in for her first four years of life. I love being able to put the pieces of her life together as best as possible. There is so much that I will never know about her and she will never be able to tell. Knowing anything about her life makes me feel like I have more for her and for me. I'm hoping to find someone that visited her baby house during the time there in case they may have a picture of her. The earliest pictures I have of her is from 2009 (she would have been 4). I feel very blessed to have the pictures I have though. I have pictures from 2009, numerous pictures from 2010 thanks to another family, a few from Dec. 2011, pictures from 2012, and then my pictures! We will be getting professional pictures done soon.
Reluctantly, I have to return to work next week! Its been a cloud hovering over me since I got home. I want more time with Brigita. I've missed 7 1/2 years of her life and don't want to miss anything more. She is so wonderful and I just love being with her. I've never been so happy!
Sounds like things are going really well, Dee. How do they conduct a sedated hearing test? Is that when they stick a wire partially in her ear canal and measure her ear drum's reaction to different frequencies?ReplyDelete
They did a wire to measure her ear drum already and it showed the ear drum was not moving well at all, a sign that she had fluid in her ears and needs tubes. The sedated hearing test (Auditory Brainstem Response) is used when sensory hearing issues are suspected. It measures how well sound travels from her ear through the nerve pathways to her brainstem while she is sedated.Delete