Tuesday, December 30

Drew and His Sister Playing at COSI

After the holiday, we have been going a bit stir crazy at home, and the mess is still beyond annoying, so I decided to take the kids to COSI today. Despite the fact that it was incredibly busy, we had a very fun day. The Sesame Street Exhibit was awesome, and the morning was enough to wear the kids out for an excellent afternoon nap!

It is amazing to me how much Drew has grown and changed, in so many ways, since our last trip. I'm so excited that we received a membership for Christmas, so now we can go to COSI whenever we want! Enjoy the video!

Drew absolutely loved the rat basketball. He probably could have watched them make baskets all day. Every time the rats would make a basket he would say, "Made it again," or "dunked it" or "see that?" It was awesome!

As a side note, I am loving my new Flip! camera. Thanks to this Mom for recommending it! It is so easy to trim and edit videos, and make a movie. I love it!

Thursday, December 25

Drew Singing On Christmas Day

Our Christmas day was filled with everything wonderful, as we truly enjoyed Drew and his sister as they experienced the magic of the season. This is the first year that they have both really enjoyed waiting on Santa's arrival, and they truly enjoyed opening their presents. (Although Drew felt that he needed to open, put together and play with each toy before opening another.)

The highlight of the day came in the form of a song, sung by Drew, while playing his new piano. It is a moment that will be forever etched in my memory, as time stood still. Everyone paused, a few of us cried, and we all gave thanks for the gift of Drew's hearing.

Two Christmas' ago, I thought this might never be possible. Hearing my little boy sing. I received many, many wonderful gifts today, but none greater than this.

We hope this finds you winding down a wonderful holiday. Merry Christmas from our family!

Sunday, December 21

My Two Front Teeth

We mentioned in a previous post that Drew's Sister had been practicing a tap dance routine for the holidays. Here is the video from her performance:

We are very proud to have the loudest singing tap dancer. It was so sweet after the performance - she was so proud of herself and had a smile on her face that lasted the rest of the day. We hope you enjoy her performance!

Merry Christmas!

Monday, December 15

Conversation with Santa

We took Drew and his sister to visit Santa this weekend.

In the days leading up, we practiced very hard with Drew:

Mommy: "What toy do you want for Christmas?"

Drew: "Biiiig train. Blue train." He decided on this by himself. Mommy did not help or give ideas at all. Very cool.

Mommy: "OK, Drew. When you sit on Santa's lap, tell him you want a big blue train."

Drew: "Okay."

Drew immediately warmed up to Jolly Old St. Nick. He walked right up to him, sat on his lap and gladly took a sucker from Santa. In fact, Drew enjoyed the sucker he was given so much that he lost all interest in Santa! All he wanted to do was unwrap and eat the sucker, and he forgot to ask Santa for any toys! When I tried to help him, he had no interest and kept saying, "sucker. SUCKER!"

So, it didn't go exactly as planned. But it was so fun to see Drew talking just like every other two year old visiting Santa. This is so much better than our previous Jingle Bell Experience.

Tuesday, December 9

Preschool Placement

It's hard to believe that Drew will soon be 2 1/2 years old! With that comes a whole new area of hearing loss to navigate: the transition from Early Intervention to Individualized Education Plan (IEP). We are very fortunate that we know Drew will be on an IEP, as his hearing loss is profound enough to automatically qualify him. We do, however, need to decide on an appropriate preschool placement for him.

I came across this Preschool Placement Checklist for Children who are Deaf and Hard of Hearing. It seems like an excellent, objective way to evaluate all of you preschool placement options for your deaf or hard of hearing child.

We have scheduled three preschool tours in January, and look to make a decision on the placement we would like for Drew by our 180 day out meeting in March. I'm thankful that so many of our virtual friends will be going through this IEP process at the same time. I am hoping that we can all learn from each other!

Monday, December 8

Tough Decisions

I guess the title really says it all. We have made some really difficult decisions recently regarding our Cochlear Implant team and the service level being provided to Drew. I am always reluctant to share these types of situations, as I have no way of knowing who is reading this blog, and I don't want to upset or offend anyone. However, I don't think that we are the only family that will experience these types of issues, so I want to be candid and share our story, in hopes of helping others in our similar situation.

We shared with you a few months ago that we have been having difficulty with Drew's new therapist through our Cochlear Implant team. After continuing to try to work through the issues, it became abundantly clear that this new therapist was never going to provide the level of service to which we were accustom, and have grown to expect. While she improved in areas of "lesson plans" and "homework," we continued to struggle during the session themselves. There were points of uncomfortable silence, where it seemed like she didn't know what to do or say, and was searching for something else to do.

I never felt like this new therapist ever really made an effort to "learn" or understand Drew. One glaring example, during our final session, was when working with the Ling 6 sounds. Drew has clearly mastered detection and imitation of these sounds over the past 17+ months. When we do a Ling 6 test with Drew, we test each ear individually, at a distance of 9-12 feet, with background noise, like the television or radio. During our final session, this therapist thought testing the Ling 6 at a 1/2 foot distance in silence, with both ears on, would be a good idea.

Overall, I felt that she really lacked the personality it takes to be the type of therapist our hearing impaired child needed. She was very passive and quite shy. And personality, no matter how many meetings I request, and suggestions I give, is not something that can be changed. So we decided to readjust our therapy schedule. We are now seeing our therapist through the Early Intervention program weekly, and we have added a weekly (in home) music therapy through We Joy Sing. Drew continues to have preschool one day a week, and beginning in January will be taking a gymnastics class. All of this combines to make an excellent language calendar, and keeps our boy very busy!

While we have been going thorough this struggle with therapy, we have also been having problems with Drew's audiology team. I have to say that this whole process has been very difficult. It's so difficult sometimes to advocate for your child, especially when he or she is exceeding expectations. I have often felt like my concerns are automatically dismissed because my child can talk at age level.

The problems surrounding audiology began in September, at Drew's mapping appointment. It had been nearly five months since Drew's last mapping appointment, and turned out to be a total disaster. Drew was asked to complete a language evaluation, which took the first 50 minutes of the appointment. This could have been completed at home, or therapy, to not waste precious mapping time. Then Drew's audiologist proceeded to look at his maps for about 10 minutes. That's 10 minutes combined. For both ears. Our audiologist wasn't even going to put Drew in the sound booth! She did so only at my request. The booth test lasted about three minutes and then we were sent on our way. During the appointment, Drew's audiologist only made adjustments to the map of his right ear.

I calmed myself down over the next few hours, but could not shake the feeling that Drew was not properly mapped. I contacted other parents, who all found the fact that no adjustments were made to an ear after five months quite odd. Then, the paperwork from the appointment was sent out incorrectly, indicating that changes had been made to his left ear, when in fact they were made to his right. The whole ordeal left me questioning whether or not Drew was appropriately mapped.

Within days, Drew's Dad and I began to notice that Drew was confusing the /o/ and /m/ sounds. Even at a close distance. His therapist noted this as well. This was alarming, and I brought my concerns to Drew's audiologist. I insisted on have a full booth test done for Drew, including results for each ear individually. Drew's audiologist was very open to this and scheduled the appointment for the following week. But the booth test was again disappointing, as she only tested Drew with both ears on, and only did environmental sounds. When the audiogram was complete, she handed to it me and said that everything was fine. I immediately noticed that Drew was hearing at 25db for the low frequencies, and around 20db for higher frequencies.

I continued to question Drew's maps. The one thing I knew was that Drew continued to confuse the /o/ and /m/ sounds. I felt like something was wrong with Drew's maps.

I decided to take Drew for a second opinion, at another CI program in our state. I did not tell the audiologist of any of my concerns. I simply wanted her to evaluate, on her own, Drew's maps, looking for reassurance that everything was OK. This new audiologist started the cochlear implant mapping appointment with a booth test (something I had asked our old audiologist for, to no avail). The new audiologist was able to test each ear individually, with the booth test lasting over 50 minutes! Coming out of the booth I felt such a sense of relief, knowing that we would have a very clear understanding of exactly what Drew was hearing with each ear.

Within minutes of analyzing Drew's two audiograms, the new audiologist looked and me and said, "Are you noticing Drew confusing the /o/ and /m/ sounds at all?"

I nearly feel off of my chair. "Um, yeah, that's exactly why I'm here," I thought. I told the new audiologist that Drew had been confusing those two sounds. Within fifteen minutes the new audiologist had made the necessary adjustments, and I watched as she tested Drew in front of me, go from confusing the sounds to clearing recognizing them. My confidence was instantly restored in Drew's maps.

But I left the second opinion appointment that day with a tough decision to make. Should we continue to have Drew mapped with his original audiologist, or move all of our services for audiology to a different hospital? This question has weighed heavily on my mind for the last two months. I have thought about this question a lot, and have finally come to the decision that we are going to move Drew's audiology services to another program.

I have had several conversations with our old audiology department about my concerns, and I was really starting to feel like there was an attitude with our program like, "Lady. Your kid can hear. What else do you want? Maybe he will confuse the sounds sometimes. At least he can hear something." At one point, we were even told that we have really high expectations. It just became clear that no matter what I do, I will never have the confidence in our former audiologist as a result of this situation. And since our program only offers one mapping audiologist, we have no choice but to go elsewhere.

I guess the moral of this (really long) story to parents is to follow your gut instinct. If you don't feel like you child is hearing something, go with that feeling and have it checked out. If we would not have sought out a second opinion, who knows when Drew's map would have been adjusted appropriately, and think of all the language time we would have lost as a result. As parents, we know our children best and really need to follow our feelings. This has been a really hard decision to make, as we have such respect for our surgeon and the program he is trying to build, but we have made a decision in the best in interest of Drew.

Saturday, December 6

Christmas Cards

As I was relaxing last night, winding down from a long week of work, I saw an advertisement on TV for Hallmark. They have a line of cards this holiday season, where you can record a message in the card! I immediately thought that this would make a wonderful Christmas present for Drew's therapists and surgeon! I think it is wonderful that we can record his sweet voice today, and then look back on it for years to come. I just know that his therapists and doctor are going to love it!

Hallmark was also advertising Christmas ornaments where you can record your child's voice! I am going to start a tradition of buying one of these each year for my children, and then as they grow we can see how their little voices and language develop and change over the years! I am so happy that we live in a time of such technology, and we are able to keep videos, ornaments, holiday cards, etc. with our kids ever-changing voices!

Also, feel free to try SendOutCards this holiday season. You can make custom photo pictures (printed in your own handwriting!) and they are printed, stamped and mailed automatically from your computer. We've been using it all this year and always get comments on how amazing our thank you cards or birthday cards are. We ar excited to send out Christmas cards this year to see how people like it. Try sending a test card for free by clicking here.

Monday, December 1

All I Want for Christmas

Drew's Sister has been practicing for her first tap dance performance! She is going to dance to "All I Want for Christmas is my Two Front Teeth." Her tap class has been practicing their dance for several weeks now, and the teacher sent home the dance steps, requesting that we practice at home.

I love to dance, and have always loved to dance. So, of course this homework was right up my ally! Drew's Sister and I, for about the last week or so, have been practicing after dinner her tap dance routine. I will say the instructions, and then she will do the dance move. It goes something like, "Bam. Bam. Bam, bam together. Bam. Bam. Bam, bam together. Jump out. Jump in. Sing, If only I could whistle!" (It sounds rather silly as I write it out, but I promise, Drew's Sister understands!)

Yesterday as we were playing in the morning, Drew's Sister started doing her dance moves, and Drew said, "Bam! Bam! Together! Whistle!," and then imitated doing a whistle. It was so amazing, since we have never worked on this with him at all. He learned all of this language on his own, through incidental listening! Just amazing.