(On our way to Clinic)
We spent all day in Craniofacial Clinic yesterday...with Clara and both babies.
We spent about an hour in the waiting area. They have tvs with cartoons playing, and they have games for the older kids, but Aiden was in a special kind of mood and if we were to let him out of his stroller, he would have taken off all over the place. So he was ill and not being very good. Johnnie ended up having to take him down to the truck to watch a movie and wait for us to get done because he was acting up so much. Clara and Kat on the other hand were good to go, they had electronics. :P
She had to see her entire team, including Audiology because it had been so long since she had a Clinic.
When the Audiology lady took Clara, I had Kat in the room with me. She had her tablet, so she wasn't really acting up as badly as she might have been without it, but boy did she give me a run for my money. She was getting ill because she couldn't figure out which games she wanted to download and because she wanted to stand up on the exam table to look out the window while holding her very expensive tablet out over the hard floor. She talked when the doctors came in to talk to me, and she threw fits that embarrassed me when I told her to stop talking over the doctors.
Taking babies to such an important doctor's appointment is a horrible idea. Unfortunately, we have a very hard time finding babysitters, especially on a weekday.
(Kat on her tablet, waiting for Clara to come back from Audiology)
Audiology came in first. They asked some questions to Clara and me, and took her up for testing. They took a really long time, which started to worry me. I was texting back and forth with Johnnie, who was also starting to wonder what was taking so long. While she was up on the 4th floor, all of her doctors came in looking for her, one at a time. They all talked to me for a bit and then had to go see other waiting patients and come back when Clara was back in the room.
When she got back, the look on the woman's face was full of concern. She handed me a paper with Clara's hearing test results and told me that Clara is going deaf in her right ear. She showed me the chart and said it is a significant hearing loss, she was suggesting a hearing aid for Clara, and for her to start back up with her ENT from when she was first born. I of course broke down in tears. To hear that your baby is indeed going deaf and could end up completely deaf in one or both ears is a hard pill to swallow. Of course Clara's reaction was, "It's nothing I can't handle." o.O
When Clara was first born, she had bad hearing problems. She was hearing like she was under water, and we were told that she could end up deaf. They put in tubes three or four times, finally clearing her and her hearing. So we stopped seeing the ENT. We thought she was fine. Now we know we should have kept making appointments. :( Because we thought she was going to go deaf as a baby, we taught her sign language. She used it a lot as a baby. But over the years, we have let it go. We will be picking it back up.
So then we saw her Orthodontist. He said the turns are looking good, to keep them up and that he would talk to us further when we were done with that.
After him, we saw her surgeon. He said that she is going to have surgery over the summer to do a bone graft that her Orthodontist wants her to have before he can move forward with his plans for her. He's going to use cadaver bone this time though because her last bone graft from her hip didn't go well for her. She was in a lot of pain for a long while and was even in a wheelchair for many weeks due to the pain of walking on her hip. He said he may even try to close her palate again.
He also said he wants to do some scar clean up around her top lip and nose.
He then explained to me that he is waiting to do anything about her deviated septum because she needs to get older and do some more growing first.
(In between each doctor, she had to have her phone. She is such a teenager already!)
After plastics, we saw Speech. He was very impressed with how well she can say her sounds. He said there are some discrepancies still in some sounds, but they should fix themselves when her palate is closed and her top teeth and top lip are fixed. So that's good news. :)
So then her dentist came in, her dental surgeon. He said that her top front two teeth may not be salvageable. He is going to do his best to save them, but he may end up having to build her fake teeth for the entirety of her upper teeth, starting with the top two front teeth. She is ok with that. She wants the fake teeth.
When we were done in Clinic, I went down to ENT and made her first appointment with them. Then we left just in time to hit Atlanta rush hour traffic. It took us a little over two hours to get home. The babies were not happy campers at all.
I had a bit of a rough time trying to wrap my head around this news. I still am really. I can not imagine her going deaf. I just can't. Right now, its just too much for me.
(Originally written on Clara's Blog on 03-12-2016)
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