Lily's ENT and the surgeon who performed her bilateral cochlear implant surgery is leaving Nationwide Children's Hospital in Columbus at the end of December. We are sad to see him go. He gave our Lily the beautiful gift of hearing and we will forever be grateful for that! I made a video of Lily's "journey" to show Dr. Kang what his work has made possible. When I make videos like this, it takes me back to each moment and all the feelings of fear, anger, sadness, joy, excitement, etc. It has been an incredible journey!
Sunday, November 13, 2011
Alexander has a few words. He has been saying "hi" for quite a while, but it sounded more like "ha" and now it sounds perfectly like "hi." Here are the other words he has been saying in the last month: dog, cat, cow, moo, nose, good-bye, daddy, uh-oh. He babbles in sentences all the time. We have no idea what he is saying, but he does. :) It's a very different experience than we had with Lily. About 3 months after she was implanted she started imitating words. She babbled very little and she never babbled in sentences. She pretty much just started using words. The difference in the two kids could be so many things. Since Alexander's hearing loss is moderate, he has been able to hear some since birth. With his hearing aids (which he got at 2 months) we think he hears pretty well. So maybe the difference is earlier access to sound. Lily really didn't hear anything until one week before she turned 10 months old. I wonder if the difference has to do with HOW they hear. Lily hears electronically and Alexander hears acoustically. Maybe it's the difference in boys and girls or just personality. I don't know, but it certainly is a different hearing journey with Alexander. His hearing was tested in October and his hearing continues to remain stable, no significant changes.
Lily began attending Ohio Valley Voices full time two weeks ago. Her school day is 8:45-3:30. She goes Mon. Tues. Wed. and Fri. I can't even begin to explain what an amazing school OVV is. We have heard such big changes in Lily's language since she began the toddler program in August and even bigger changes in just a week of the full day program. I was cooking a few days ago and Lily said, "The water has to boil. It is very hot." She gets 2.5 hours of individualized/partner therapy EVERY DAY! This is what her schedule looks like.
8:45-9:00 Device Check
9:00-9:30 Morning Meeting
9:30-10:00 Vocabulary/Syntax (Individualized/Partner Therapy)
10:30-11:00 Speech/Auditory Training (Individualized/Partner Therapy)
11:00-11:30 Group Instruction
11:30-11:45 Conversational Language (Individualized/Partner Therapy)
11:45-12:00 Language Extension (Individualized/Partner Therapy)
2:00-2:30 Vocabulary Review/Sentence Cards (Individualized/Partner Therapy)
2:30-3:00 Individualized Instruction
3:00-3:30 Language Experience (Individualized/Partner Therapy)
3:30-3:35 Go home
She brings home a "My Day" paper every day so we know what vocabulary words and grammatical structures she is working on at school.
We also get a newsletter each week letting us know what they are learning in the regular classroom.
So far we LOVE her school. The drive is huge and certainly not easy for my mom or the kids. They are all getting into the new routine though. Lily wakes up a 6:00 a.m every day now (even the weekends). She is back to napping every day too. Lily loves her school and her friends too. She talks about them at home and asks when she can go to "Lily's school." So far, so good!
We celebrated Lily's third birthday last week. She had a princess birthday party and lots of fun!
Tuesday, September 27, 2011
So the last time I wrote we were heading to the Moog Center for Deaf Education in St. Louis for a parent workshop. I was worried that I wouldn't learn anything new and that it would be an expensive trip for nothing. So not true! I learned a lot (the most important being we always need to raise the bar and expect a little more language from our children) and the experience helped me decide on a preschool placement for Lily. Before visiting Moog I was convinced she was ready for mainstream preschool. They explained that, even though she has relatively good receptive and expressive language for her age, she probably would not continue to gain new vocabulary at the rate of her hearing peers in a typical preschool program. It is best that she is able to understand and speak complex sentences of 8-10 words before entering mainstream school. The problem with mainstream schools is that they don't teach children how to talk. Hearing children will learn most of their new vocabulary incidentally (just by hearing adults use it in conversation), but our hearing impaired kids won't learn nearly as much in the same way. They need direct, intensive language instruction to make the same gains.
Sooo, after visiting the two auditory oral programs in Columbus and Ohio Valley Voices (Moog curriculum school) in Cincinnati, I was convinced that Ohio Valley Voices in Cincinnati would give Lily the best chance at closing the language gap between her and her hearing peers so that she will be ready to enter mainstream kindergarten with little to no special education services. We hope that by the time she starts kindergarten, the only big obstacle she will have is learning to listen with all the background noise. At Ohio Valley Voices she gets 2.5 hours per day of direct, intensive speech/language and auditory therapy and 2.5 hours per day of academics. During therapy she learns new vocabulary, new grammatical structures, works on articulation and performs audition tasks to increase her auditory memory. She will begin this program in November when she turns 3. She is currently enrolled in the toddler program there, where she gets 1.5 hours per day in therapy.
Alexander is receiving 1 hour per week of therapy. That is another reason we chose to go to Cinci. At Children's Hospital in Columbus, we were told that Alexander was not far enough behind in his language development to receive therapy. Those who know me know that wasn't going to fly with me. I believe, with all my heart, that early intervention is soooo important. So I found a program that agrees with me. I often worry that Alexander will "slip through the cracks" since his hearing loss isn't profound. Another thing I learned from Moog in St. Louis, is that hearing aids don't "fix" hearing impairment like glasses "fix" vision impairment. I previously assumed that they did. As someone who wears glasses, I know that my glasses allow me to see perfectly. Not the case with Alexander and his hearing aids. The aids amplify sounds that he cannot hear without them, but the sound isn't clear and he may still miss some sounds completely. He will never hear like me and neither will Lily. So he needs early intervention also. At OVV, they can both receive therapy in one place. The on-site audiologist also sees both kids regularly for programming, ear molds, MAPping, repairs, etc. So we get everything in one place.
After deciding where I thought Lily should attend school, I spent the rest of the summer and first part of fall preparing for the IEP meeting. I knew I might meet resistance since I would be asking for our local school district to agree to send her to OVV in Cincinnati. To any of you going through the process or about to, buy the book "From Emotions to Advocacy" by Pam and Pete Wright. The book isn't specific to children with hearing loss, but it is about navigating the IEP process for your child with a disability. It teaches you to organize your child's file (audiograms, speech evaluations, etc.), document everything in writing (it even has several sample letters for different situations), know the law, know your rights, and advocate for your child. After writing a zillion letters, researching programs again and again, having a meeting to determine eligibility for special education services, we finally had the IEP meeting yesterday. After a lengthy 2.5 hours of writing and re-writing goals and objectives, determining services and the amount of time and frequency she should receive services, we were finally to the big question. WHERE will Lily receive these services so that she will have access to an appropriate education as a child with a profound bilateral hearing loss? Everyone's feathers got a bit ruffled, but we determined that Ohio Valley Voices is the appropriate placement for Lily for this year. So we do have school district support, which I am soooo happy about.
Here's to a great start to the school year! Remember my family as my mom travels with the kids to Cincinnati several times a week. I pray for safety and peace of mind (as Lily can sometimes be hard to get along with in the car). :)
Thursday, June 9, 2011
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.
Monday, April 11, 2011
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!
Saturday, April 9, 2011
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.
Saturday, January 1, 2011
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.