Thursday was Vivian’s ABR test. We were up and out the door bright and early, arriving right on time. Shortly after arrival we went back for the nurse to take her vitals and get ready for the procedure. My favorite part was when Vivian made a monkey sound and handed her magna doodle to the nurse – she wanted her to draw a monkey. The nurse obliged but was quite embarassed by the final product. I personally love seeing everyone’s different renditions of Vivian’s requested animals. The anesthesiologist was quite a character, yelling “weeee, weeee, weeee” while pushing baby girl to the procedure room.
One of us was allowed to go back with her while she was put to sleep and I was the lucky one. The doctor put the mask over her face, I gave her a kiss and left her to take a very good nap. About 45 minutes later the doctor came out to share the results. Vivian doesn’t have any hearing loss. Everything about her hearing leading up to her brain works. That’s good news, of course – but what gives? Immediately I start wondering what was wrong with her brain. I suppose we’ll follow up with a neurologist to see if there’s anything that can be done or if they can provide us with any additional information, but I doubt it.
I think either way the test results came back, I would be upset. If she would have had hearing loss, that would be unfortunate, but most likely there would be something we can do to fix it. Of course I wouldn’t want that, but part of me was hoping that maybe she just needed a hearing aid. We would pop it in and all the sudden I would have a daughter that I could get to know better. She could tell me if she’s hungry, full, thirsty, hot, cold, tired; what she wants to play with, what she wants me to draw…she could tell me she loves me. Was this naive of me? Yes. Of course. But some part of me has to remain optimistic. Now here we are again with no real answers. We’ll play the cards we’re dealt and make the best of everything.
Baby girl doesn’t talk. She makes sounds, but no words. She has never said “hi” or “bye”. Mama and Dada typically only come out when she’s mad. Other than that, it’s a few animal sounds, “shhhh” and the occasional “yes”, “yea”, or “nah”. That’s about it.
For this reason, I took her to an ENT Doctor for a hearing evaluation. She’s had two traditional hearing tests, but it’s been a while. I believe both were done when she was under the age of two. The results were inconclusive, which makes sense because cognitively, she was not advanced enough to produce accurate results. She is still not. This Doctor thought he could do a different test in the office, but based on the fact that it took me holding her body, a nurse holding her head and all three of us needing earplugs just for him to examine her ears, he opted for an ABR with sedation.
What’s that? Good question. The simplest definition I’ve found is located here: http://www.asha.org/public/hearing/Auditory-Brainstem-Response/ Hopefully this will tell us if there’s a missing link somewhere. She may have trouble hearing different pitches, which may be why she can’t make certain sounds and doesn’t form words. I called Hopkins and made an appointment for July 9 (first available). Lucky for us, there was a cancellation! Vivian is now having this test performed on Thursday morning. She had her pre-op appointment last Tuesday and everything looks good. Next post, I’ll let you know how it went. Please keep Viv in your prayers, as she will be sedated for this test.
Sorry it’s been a while! A lot has been going on with baby girl, so I guess I’ll start somewhere. January 25 was her 3 year check-up. Almost 3 months after her birthday she weighed in at 31 pounds and was 40.5 inches long. My little pumpkin is of course still off the charts for her height, but jumped from the 5th to the 50th percentile for her weight. Go, Viv, go!
Vivian is relatively healthy, so we had only been to her primary care physician’s office about twice within the last year and hadn’t seen her doctor since December 2011. At every appointment thus far, the girls have known to take us back to the baby scale for weight and height, knowing she can’t use the ones in the rooms – much easier on me, not having to explain at every appointment we go to. I imagined that it was bolded in her chart somewhere “She can’t walk!”, but I learned it wasn’t. After explaining her situation briefly, we got her back to the baby scale and tortured her. No, not really, but to listen to her we might as well have been.
Now the fun part. I love her doctor. She is absolutely wonderful and I so enjoy Viv’s checkups with her. I filled her in on how she’s been progressing. I fought tears only once the whole visit, when I told her she still wasn’t walking, but I won. I did much better than her 2 year check-up when she asked if I needed to make an appointment just to talk. I left that checkup with my own box of tissues. I brought up concerns I had and left with 5 referrals, along with a few more I had to get later. Hence why I haven’t posted in a while.
What I loved most about this visit was that her doctor wanted to learn more about Vivian’s chromosome deletion. She also wanted to try and find a support group for me. She assigned us a case manager and told me she was going to make us her weekend project – which she did. She used her own time and found information and resources for us, then called me to explain them. I was very impressed, to say the least. Her doctor truly cares about us and that’s the kind of doctor we need.