Monday, September 6, 2010


It's official, Sophie has started pulling out her hearing aids every chance she gets. I was hoping this day would never come, but now I guess I have to face this new challenge. The other day, I was showering and Sophie was playing in her jumper in the doorway to the bathroom. Not two seconds after I got in, I hear a loud buzzing, look out, and see her chewing on her right hearing aid. Stinker!! I jump out and take it from her, not bothering to put it back in because I am soaking wet. A few minutes later, I hear buzzing again! I peek out to see her left hearing aid just inches away from the open toilet. She literally yanked it out and threw it across the room! I hastily finished my shower and made a mental note to ALWAYS make sure the toilet seats are down-her hearing aids are expensive!

She has been very tolerant of her hearing aids so far, so I just hope this is a phase and not the beginning of a daily battle! I don't want to resort to making her wear a pilot cap to keep them on. Ugh!

On another note, I have been reflecting lately on the last few months and all of the information we have been bombarded with. It is a lot to take in and we still have several big decisions to make regarding Sophie's future, but I think the worst part is that I still feel like we are in limbo. We don't know the cause of Sophie's hearing loss and I'm not sure if we ever will. As I stated earlier, there is no history of hearing loss on either side of our family and there were no environmental factors during pregnancy or delivery that could be the culprit. There is a recessive gene, Connexin 26, that could possibly be the cause. Everybody has two copies of this gene, and if Jared or I carry a flawed copy and passed it to Sophie, that is the cause of her hearing loss. 1 in 33 people carry a flawed copy of this gene, so it is relatively common. Her ENT is going to test for Connexin when he performs the surgery for her cochlear implant(s). I wish he would test her sooner, but it requires a complicated blood draw and she needs to be sedated. If we are carriers of the flawed Connexin gene, then we have a 25% chance of having another child with hearing loss. At this point, I'm not sure what I even want. Part of me wants Connexin to be the reason because at least then we will have an answer.

Sometimes, I feel like our life is on hold and, in a way, that is one of the hardest parts of dealing with Sophie's hearing loss. We can't buy a new house because we have to save for Sophie's tuition instead. We don't want to plan for another child until we discover the cause of her hearing loss, if ever. And now, geographically, we must stay in St. Louis because Sophie's school is here. Not that we were wanting to move anyway, but we both always have job opportunities that would require relocation. I start thinking about all of this and get frustrated because other people don't have to deal with issues like this. They have normal every day stresses and their biggest concern is something trivial. Then I start to feel guilty for feeling this way because I realize that things could be a lot worse. Sophie is amazing and she is going to be fine. There are parents out there who are helping their children battle a much more severe disability than we are, so what I am complaining about? It's seriously a vicious cycle that I fight: feelings of anger and frustration, and then feelings of guilt. Luckily, as time has passed, I've gotten better. Most of the time, I'm able to stop thinking negatively I soon as I recognize I am doing it. I realize how incredibly lucky Jared and I are to have the resources and support to help Sophie in every way possible. I know there are parents that are not as blessed and my heart goes out to them and their families...


  1. You know you have a right to be frustrated, but the guilty feelings come as well. Try not to think about the frustration because you have one of the cutest babies I have ever seen.

  2. I know this must be SOOO hard for you. And while all the positive thinking helps, I'm sure it's still tough to feel in limbo all the time or to try and prepare for all the things that may be lurking around the next corner. But, if know anything about's that you are STRONG!!! I know that you'll do everything in your power to give that little girl a wonderful life and that you will NOT allow this to define her!!! I know it's tough, but you're tougher and you always seem to find a way to succeed in everything you do...this will be NO different!!!

  3. I remember these same feelings. I want you to know that it does get better. Most days I don't even think about it anymore. Lily is doing so well with her hearing and speaking. But I do remember the hearing aid days. I hated those days...I was so frustrated and sad because they squealed all the time, she would take them out, we had to put pilot caps on her, and they weren't even helping her hear! Hang in there...better days are coming. Also, I wanted to let you know that the blood test for Connexin should not be a big deal. Lily did not have to be sedated. They just drew some blood from her arm and the results were back in a few weeks. We had her blood drawn at Children's Hospital. The only reason I can think that Sophie would need to be sedated is if someone isn't experienced in drawing blood from an infant. We also had Lily's blood drawn when she was only 8 weeks old. Maybe since Sophie is older she would fight and move her arm too much. I'm not just seems funny that your ENT says he can't do it. Good luck!