Heading to St. Louis

So we decided to go to The Moog Center for the Deaf in St. Louis, MO for the 5 day parent workshop next week. Mom will take of Alexander during the day while Lily and I are in class. I'm excited and hoping that I will learn lots of new language activities for Lily and Alexander.

As far as hearing updates go, Alexander had a sound booth appointment at the end of May and he responded to speech at 10dB. So far, it looks like his hearing hasn't changed. However, Lily's sound booth appointment at the end of April didn't go as well. She responded to speech at 25dB. Not so bad, but she was responding to speech at 15dB four months ago. At the appointment, she was wearing her fancy Easter dress, which was noisy, and she wasn't fully cooperating at 8:15 in the morning. Who is, right? Sooo, we're going to try another sound booth in July to check in on her hearing.

Moog Center Summer Workshop

We're thinking of attending the Moog Center's summer workshop for parents of kids with deaf/hard of hearing kids. The workshop is in St. Louis, MO. It seems like a great workshop and I know that many of you with D/HH kids have attended this workshop. Is it worth the time and money to go? Did you learn lots of new things? Should we go? Please leave a comment with anything you would like to share. Thanks!

Sound Booth and Preschool

Alexander's last two sound booth tests went well. Last month, during an aided check (hearing aids on) he responded to speech at 20dB. This is great news as normal hearing is in the range of 0-20 dB. Last week, during an unaided check (hearing aids off) we learned that his hearing has not changed since birth. He responded to speech at 40dB. This is also good news because we know that there is a chance that his hearing loss could progress and his hearing could become worse. If his hearing continues to stay the same, he will not need cochlear implant surgery like Lily. He will only need to wear his hearing aids.

Lily is still doing fantastic with her hearing and speaking. She is speaking in sentences and picking up new words all the time. We are currently in the process of making a decision about preschool for Lily next year. It doesn't seem like she can be that old. It seems like just yesterday she was a tiny baby asleep in my arms. Now she is a toddler asleep in my arms; still my baby. :) She is potty trained and ready for school in the fall. We are leaning toward putting her in a mainstream preschool. The closest oral deaf preschool in our area is about an hour away and the children attend every day, all day. I don't think I'm ready for Lily to be at school that long when she is so young. I also can't imagine how exhausted she would be attending school all day and then riding to and from school for 2 hours. Also, because her birthday is in November, she will have to attend preschool for 3 full years before entering kindergarten, which seems like a lot of school. Therefore, we are thinking of sending her to a private church preschool next year that she will just attend one day a week and spend the other four days with my mom. She will continue her auditory verbal/speech therapy at Children's Hospital next year.

Since Lily will probably be going to a mainstream school next year, I made her a book on shutterfly.com about her ears. The teacher can read it to the class as a way of introducing the other children to her CIs. Here are a few pages from her book.

Sound Booth Testing

Lily and Alexander seem to be doing fantastic with their respective amplification. They both had sound booth testing last week. Lily responded to speech at 15dB and Alexander responded to speech at 30dB. A whisper is approximately 30dB so we are really happy with the results.

Alexander also had another ABR last week. This is the test they did to confirm his hearing loss. We have continued to do them to monitor his hearing since there is a chance that his hearing loss could be progressive. So far, no change. He still has a mild to moderate hearing loss in both ears. He is "talking" a lot more these days. He squeals, he giggles, he makes open and closed vowel sounds, and he is blowing raspberries.

Alexander's First Sound Booth

Alexander had his first hearing test in the sound booth at the end of November. The reliability of the test isn't great at such a young age, but we're pretty confident he responded to speech at 30dB. The audiologist explained that a normal hearing baby at this age wouldn't respond to speech under 30dB. So for now, Alexander appears to be hearing as well as normal hearing babies. YAY! We continue to pray that his hearing loss is not progressive. If his hearing stays where it is, he will not need cochlear implants...the hearing aids will be enough. Alexander is such a happy baby and we are enjoying every precious moment with him!


Lily is talking all.the.time. :) We love it! We met a normal hearing baby over the weekend who is 3 months older than Lily, and he isn't talking. It really made me appreciate all the hard work that Lily has done in therapy to be doing as well as she is. She is speaking in phrases quite well and even speaking in sentences some. Lately she has been saying to me, "I hear Alexander." She also loves to sing. She's been singing Disney princess songs and Christmas songs. I've been trying to get it on video to share with you all, but you know how it is when you want your toddler to perform on camera...doesn't usually happen.

Cat and Mouse

Happy Halloween from my little cat and mouse!

Alexander's Hearing Aids

Our ENT called and confirmed Alexander's diagnosis. His hearing loss is also caused by Connexin 26. It is fortunate that he has some hearing, but as I wrote before, we'll have to keep a close eye on him as the hearing loss can be progressive.

Yesterday Alexander got his hearing aids. It was really cool to watch him react to sounds in a way he never has before. He is turning to sounds a lot more now. When we were in a group of people, the noise was too much and he started pouting and then crying. He is going to have to go through an adjustment period. This is all very new to us because Lily's hearing aids did nothing for her.

With the good comes the bad. We are again immersed in a world of squealing from the hearing aid feedback. We are also struggling to keep the hearing aids on Alexander. He isn't pulling them out yet, they just keep falling out. I'm guessing the ear molds are already too small even though he just got them yesterday. The molds were made almost 3 weeks ago.

Here is Lily pointing to her baby brother's new ears.
Alexander's hearing journey has begun!