Surgery Date!!!

Happy Thanksgiving to everyone! On this holiday, we have so much for which to be thankful. Sometimes it's easy to get caught up in the all the feelings that go along with having a child with special needs, and it's easy to forget all the many things there are to be thankful. I'm thankful for his smile, his giggle, his energy, his determination, his curiosity, and his joyful little life. I'm so thankful for all that he's taught me about life and priorities this year. We just feel so lucky to have him in our life, it's hard to describe it in words.

We had a long day at CHOP yesterday, not surprisingly! We had a scheduled, sedated CT scan, but we ended up not having to sedate him! It was wonderful! One of the nurses suggested that we try it without sedation, so we patiently waited for him to fall asleep (Daddy did a greeaaaaat job)! The scan only takes 3-5 minutes, and that's such a short test for the hastle of sedation, not to mention the fact that Lucas doesn't need all of those drugs in his system! We then saw ENT for our pre-op appointment, and officially signed the papers for Lucas' right ear to be implanted on DECEMBER 26th! Yes, the day after Christmas! It's actually perfect timing, as Nate and I will have the entire week off after surgery. We are thrilled and excitedly counting down the days!

Now the decision as to which company to choose... we have about 2 weeks left to make our decision, because they need time to order the implant. We're leaning towards Cochlear at this point, because of the babyworn processor option, but we haven't made our final decision yet! I'm sure that we'll be pleased with either company (the other choice is Advanced Bionics - our surgeon won't use Med El). Then we get to pick the color of the processor... oh, decisions, decisions! Happy Thanksgiving!

Beautiful

This video was featured on one of the listservs that I'm on, and I wanted to share. I'm not a big Christina Aquilera fan or anything, but this is a great song with a beautiful message, and an even more beautiful ASL video. I want so badly for Lucas to grow up with a great sense of worth and beauty in regards to his hearing loss. This video really expresses that! Enjoy!!!

CI candidacy approval!

It's hard to believe that Lucas is 10 months old today! What an active, happy boy he is too! He army crawls so efficiently that he's not particularly interested in learning to crawl with his belly off the ground... oh well! He's pulling himself up, climbing over things and follows us around the house. He's very social and still vocal, even when he's not wearing his hearing aids. He still continues to sign "milk", and we think "eat" also. He also waves and babbles in sign! That's really fun to see!

It's been an eventful month for Lucas! On October 7th, we had 6 appointments with Lucas at CHOP, including his team evaluation for the CI. We met with a social worker, a SLP, an educational consultant and one of the CI audiologists. Lucas had more booth testing, and we finally have an audiogram! His unaided pure tone average is 120+ dB bilaterally. Response to speech information was obtained at 105 dB in each ear. Repeatable responses were noted at 110 dB at 250 Hz for each ear also. The CI audiologist also noted that although the responses were consistent, they may have been due to vibrotactile stimulation and not necessarily auditory stimulation. Basically, Lucas is quite profoundly deaf, and is getting NO benefit from his hearing aids because of the level of profoundness.

A week after those appointments we got a phone call informing us that Lucas is indeed a candidate for CI surgery from an audiological standpoint. We also had a phone call from Dr. K at the beginning of October with the results of Lucas' most recent MRI. His inner ear structures are all intact, meaning the cochleas are not malformed and the auditory nerves are present. That's great news for CI surgery! He did inform us, however, that Lucas has enlarged vestibular aqueducts (EVA) in both ears. Normally, the concern with EVA is progressive hearing loss, but Lucas' loss is so profound that it doesn't matter. I still have a lot to learn about EVA, but I don't think that it has any other implications, nor is it treatable, so it's just kind of there, and is simply helping us piece the puzzle together as to why Lucas is deaf. Dr. K also told us that from his standpoint, Lucas is also a CI candidate.

So, we have approval from audiology, ENT and insurance, so all we need is a surgery date. Yippee!!! Well, there are a few more steps, but the candidacy process is over, and this dream will soon be a reality! It still doesn't seem real that we're at this point already.

Last Friday Lucas had ear tubes put it at CHOP. We left the house at 4:45 AM to arrive at 6:15. It was a simple procedure, although he still had to be under general anesthesia. We were home by 2 PM on Friday and then had the weekend to be with Lucas following surgery. Now when Lucas has his CI surgery, they won't have to postpone it at all because of fluid on the ears. I'm also interested to see if he tests any higher in the booth because of the tubes. We'll see at Thanksgiving.

Because of his level of hearing loss and lack of benefit from hearing aids, the CI decision for us is a no brainer. The earliest he can be implanted is Christmas. We plan to implant in January and activate in February. Pending official approval next week, I will be taking a leave of absence from my teaching job for the rest of the school year following activation, and not returning until next September. I submitted my request on Tuesday. Lucas' therapy sessions will increase to once a week each (SLP and TOD), and we will be heading down to CHOP regularly for follow-up appointments. His needs will best be met with me at home, and that's where I really want to be. We know that a CI is not a cure for hearing loss, and that Lucas will not magically hear upon activation. It will take time, lots of work and even more comprehensible input to help him make sense of the noise that he will be hearing. And I'm so excited about it.

For now, we continue to sign with him as much as possible and to the best of our ability. It will not be as much of a priority after activation, but we still have 3 months until surgery, and 4 months until activation. We also want him to appreciate deaf culture and be able to be an integral part of it if he so chooses. Plus, he needs another language under his belt in addition to learning German and Spanish from Mommy and Daddy very, very soon (wink, wink).

Lucas signs milk!!

You might think that I just won the lottery, or that Lucas said Mommy or something. No, but after a good 6 months of signing milk to him, he signed it back to me today, and I am seriously on top of the world. I thought I was just imagining things, but he did it a few times. I even got it on video, so I hope you enjoy. Watch his right hand very carefully! This is a big milestone, because it indicates that we have bridged the communication gap with him, and he knows that language exists. What a joyous moment.

And the school year begins...

So, I'm back to work again. I enjoyed my summer immensely though, and I wouldn't trade spending 10 weeks at home with Lucas for anything in the world. There are many great things about being a teacher, like having the summer off. But, work is never finished, and I can never just leave school at school. I always have something to grade or create, and I feel like I'm not able to be either an excellent teacher or mother, but somewhere in between both. After school is Lucas time though, and school work waits until he's in bed, whether it gets done or not. It will be an interesting year, trying to balance a busy teaching load with a busy special baby.

Interestingly. there's a new hearing impaired classroom in our school district, so I'm anxious to visit. Nate also has a new job teaching where I teach. We now make up more than half of the World Languages department at Manheim Central! (there are 3.5 of us... the .5 is a part-time teacher) Nate is closer to home and I love having him right next door to where I teach! We're able to spend more time together and devote more time to Lucas together.

Last week's MRI went pretty well. I'm glad it's over, and they better as heck have the slices of film that they need to determine the status of his cochlear implant candidacy this time. We're still waiting to hear about the results from Dr. Kazahaya. The insurance review has been completed. Our private insurance will not cover the surgery (what a surprise!), but our public insurance will, so we're very lucky about that. We're headed back down to CHOP on October 6 for an audiology appointment, and on October 7 for the next stage of the CI process. We meet with one of the CI audiologists, a social worker, and a SLP. All three appointments are right in a row. Then we have a pre-surgery appointment for the ear tubes and a meeting with anesthesiology. Ear tubes will be put in sometime in October. We don't have a surgery date yet, because I wanted to combine dates with our 10/6 & 10/7 appointments so that I can save my sick days as much as possible. The surgeon's calendar wasn't available yet, but I hope to hear soon. I want a Friday surgery date so I can spend the weekend afterwards with Lucas before going back to work. I'm so picky! But at least I know what I want.

Lucas popped 5 teeth this month is starting to be very mobile! He's not exactly crawling on all 4s, but he's doing an army crawl, which is getting him where he wants to go. He's still not really sitting on his own, although it's getting better... mostly because he wants to either crawl or stand, and doesn't have the patience to sit! We still get no response to sound, but he continues to vocalize, so we're pleased about that! We're just kind of in a waiting game. We continue to meet twice a month with his SLP, his TOD, and his OT, so that's keeping us busy! And we're still using baby signs with him to teach him pre-language. We need a way to communicate with him, since he responds to nothing. He is beautiful, happy and we couldn't imagine life without him. He has taught us SOOOOOOOOOOOOO much about life these past 8 months - what's important, what's not, and that his hearing is our number one priority.

August appointments

Wow! What a week! We drove 10 hours home from North Carolina on Sunday, then we traveled back and forth to Philly on Monday, Tuesday, and Wednesday. Then today was Lucas' IFSP (baby IEP) 6 month review. I'm ready to do nothing tomorrow, but I need to get my classroom ready for the school year. My pretend life as a stay-at-home is soon coming to an abrupt end. I will just have to look forward to next summer.

Our appointments went alright. Nate and I went without Lucas on Monday for our CI information meeting. I will admit that I didn't learn that much, but it was still nice to talk to someone about it and I got to see the implant and processors. We also discussed the three different companies that make the implant, so that we can make an informed decision on which one to choose. It's like picking out a car. We get to choose the make/model, and even the color!

On Tuesday we met with the AV therapist for an evaluation. Because he doesn't react to any sounds, we didn't really get anywhere, but continue to learn AV strategies, that we will definitely be employing when he gets implanted. It's not too early to learn these strategies.

Then we met with audiology on Tuesday, for new hearing aid molds and booth testing. Testing was quick, because we didn't get any responses. We'll try again next time. Nate and I also decided to get Lucas blue and white swirl ear molds. I thought it would come just in time for Penn State's football season. When Erin (our awesome audiologist!) asked if we wanted to get something other than clear, Nate and I both responded "sure, why not?" I think it's a good indication that we're finally accepting his hearing aids. Before we wanted to draw as little attention to them as possible, and now we want to add a little flair. Tuesday was good, because we like to chat with our audiologist(s) quite a lot! (Melissa too, if you're reading!!)

On Wednesday we met with Lucas' new ENT doctor, Dr. K. We learned 2 things. First, the MRI we had done on July 3 was not good enough. I'm not so happy with the local MRI group right now for their lack of knowledge and lack of professionalism for not calling me to let me know that they didn't know how to effectively perform the scan that I requested. So, he will have a repeat MRI next Wednesday August 20. Yippee.

The doctor also found fluid in his ears, although there was no infection. He wants to put tubes in his ears, so that when/if he's implanted, it won't postpone the surgery. I guess if there's either fluid or an ear infection, they won't implant. So, that surgery will be some time in late September or early October. I'm still working on those details. It's a simple procedure, that's supposed to take 7 or 8 minutes, but they still have to put him under general anesthesia.

So, we got some news we weren't expecting, but generally we had good appointments. I was hoping to have Lucas under anesthesia only 1 more time in the next 6 months, and instead it will be 3.

Although everything still looks good for CI candidacy, Lucas has definitely not been approved yet. We're still at the beginning of the process, with quite a few steps left before official candidacy. I talk about it a lot though, because I just have to believe that it's going to happen. It's our only hope.

Hearing Aid "Magic"

I hope you enjoy this video of Lucas as much as I do. It really puts a smile on my face every morning when I put his hearing aids in. Sometimes he vocalizes more, but I was just happy that he was performing for the camera! Enjoy!