Cleft Team Day

Sofie had her cleft team appointment yesterday. She was a rock star. She saw 6 different specialists in the morning and then had a group meeting in the afternoon with everyone including the ENT surgeon. I was a little nervous with her being in a room of about 10 medical people, but, in true Sofie fashion she flashed them all her huge smile and waved hello to all of them. She had a blast. Her repair looks great and no fistulas. They want to wait to start speech therapy for another 6 months in order to let her acquire more words.

They bad news is that we were hoping to put off another round of medical procedures with anesthesia for a while, but, it is not to be. At her first ENT appointment, it was noted that she had some hearing loss. We were hoping that it was just the wax and some fluid in her ears and that the ear tubes would take care of all that. She had a lot of wax in her ears. We had a hearing test at the audiologist yesterday and she was diagnosed with moderate hearing loss which will probably require hearing aids for the rest of her life. Neither Jim or I were prepared to hear that and it hit us pretty hard. Poor thing has been through so much and she just needed to catch a break. She will have so much to deal with throughout her life she just really didn't need this too. Oh well, things can always be worse so we will look at the bright side of things. She will deal with this like she does with everything else....with a smile!

The bad news is that she has to go for a ABR test (auditory brainstem response) and will need to have sedation for it. We have decided to do the dental surgery and the ABR together so she will once again have anesthesia. The ABR will have to be done ASAP so we will not be able to put off anesthesia until November. Sofie just finally got over her pneumonia and now she will have to be put under again. I hope we can ward off the pneumonia this time. Her hearing loss affects her ability to hear common speech and without that she will not be able to hear and form the words she needs to for her to develop speech. I feel better about it today, it was just such a shock yesterday to hear that. I will keep everyone posted as to when the surgery will be :)