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Saturday, October 20, 2012

Hearing assessment

We had Brigita's hearing test and consultation last week. It was pretty unsuccessful. They, of course, wanted to try a hearing test based on behavioral responses, despite the fact that I told them Brigita would not be able to participate/respond appropriately. Sure enough, they could not get a good read on her. Sometimes she appeared to hear the sounds but ignored them, sometimes it appeared she really didn't hear, and sometimes she looked in the direction of the noise but it was before the noise officially started. Mostly she just wanted to play with me. They did say her ear drums were too stiff and one did appear to be gray in color (the doctor couldn't see the other due to how small her ear canals were), indicating there may be fluid behind the ears. However, the doctor's recommendation was not to go ahead and do a sedated hearing test or put tubes in her ears. Instead, she wants Brigita to go back in a month, try the behavioral test again, and see another doctor instead of her. We rescheduled to meet with the new ENT next Wed. where I will strongly advocate for immediate treatment instead of postponing the inevitable. Three doctors have seen her and observed her to have issues indicating she needs tubes in her ears. She needs to be able to hear! In addition, I am working on getting assessments for her through the school system. However, they will not do the testing until she has had a vision and hearing test.

The only aspect of the appointment that was helpful was when we went to get batteries for her hearing aid (the doctor said we could start working on wearing them though the ENT office did not recommend this until she had a hearing test and was seeing an audiologist). Anyway, we did get to test Brigita's response to having the hearing aid in and on. She definitely does not hear completely out of her right ear. Though she did not want the hearing aid in her ear, she did like being able to hear. She got very excited! It was cute. Then she threw the hearing aid from her ear. Brigita was such a trooper during our long day! The doctor appointment was an hour and half away. And her appointment was during lunch. I tried to get her to eat earlier but she didn't want to. She snacked on applesauce and kix cereal while we were there but that was it. But she was very good! She's also gotten better about not going up to every person and wanting them to hold her. After the appointment, we got us some Cracker Barrel!

In tummy news, things have still been up and down. We did the enemas and started myralax last week. She initially was still having issues with bloating and not having bowel movements. Now she's had diarrhea several times per day until the  past 2 days. This was expected when first starting the myralax. I'm starting to suspect though that Brigita may be lactose intolerant (or at least sensitive). I'm taking her off of dairy products for now to see how it affects her. She has a GI appointment in November.

We had a follow up appointment with her pediatrician Friday. Her pediatrician felt that Brigita is doing really well. We have some more appointments to schedule. I'm working on getting all these scheduled.

We attended Step Up for Down syndrome awareness walk yesterday. It was fun. On the way there, our tire went flat. So, we arrived about an hour or more later than we had intended. Brigita did well here as well. Though she was not feeling well due to her tummy. I really enjoyed the walk. Brigita walked a descent distance at the walk, considering how tired she was. And she didn't hit, bite, or pinch any children.


Last week I had to say goodbye to my Mazda Tribute and get a new-to-me vehicle. The Tribute had several small issues that add up to cost a lot. But the biggest is that the seal on the transmission is failing and a majjor oil leak. The transimission is is a common issue in the Tributes. I had hoped to get it to last until after the adoption was complete and then was going to see about getting this fixed. But the seal has recently messed up more and it is leaking badly. So, I already know the minimum it will cost to fix just the transmission. Considering all the issues the Tribute has and the high mileage and that I would have to use my money to fix the Tribute instead of going towards Brigita's adoption, I felt trading it in was my best option. I got a Ford Escape and LOVE IT!

Here's some pics of Brigita playing with some of her cousins. There are still issues with her hitting, biting, and pushing but she is learning to play.

Some other pics that I particularly like
She does nap sometimes!

Bath time is her favorite time of the day

This is my grandpa :) So glad to have this picture

Getting ready for church. She thought she was super cute!

More proof that she does nap sometimes
I love this little girl so much!!
Every day I can hardly believe she is actually with me. It feels like I'm living a dream, one of the best dreams of my life! Not to say there aren't frustrating times (hitting, biting, pinching). She is such an amazing little girl. She is funny, sweet, smart, mischevious, beautiful...and many other things I've yet to discover.
Please consider adoption
(domestic or international, special needs or "typical")
Its worth it!


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