CI surgery tomorrow! Oh, and Merry Christmas!

Please pray for Lucas's CI surgery tomorrow. Our arrival time in Philadelphia is 6:15 AM, which has us leaving Lancaster at about 4. AHHHH! I just can't wait until tomorrow is over. I'm so nervous. Lucas had surgery in October, and my feelings of nervousness then were nothing compared to now. I think I feel really torn. I know we're making the right decision, but it doesn't make it any easier right now, knowing that my baby will have surgery tomorrow.

Merry Christmas! One year ago today, I was discharged from the hospital without my baby, who spent 6 more days in the NICU after being born early. That was really tough on us, and I wouldn't wish it on my worst enemy (if I had any). I felt guilty about having delivered 5 weeks early, as if it were my fault, and then he had to be hospitalized for 8 days. While in the NICU, they kept giving us bad news too: a heart murmur, a failed newborn hearing screen (3 times), among other things. It had never even occured to me that his hearing could be a problem. We left the hospital with 3 follow-up specialist appointments in January, and a lot of despair. We weren't that worried about his hearing, because they told us it was probably fluid or something (sound familiar?). We were much more worried about his heart, because the neonatologist scared the heck out of us in the hospital, telling us that our baby could die soon! I'll never forget the meeting with that doctor, and how incredibly sick I felt after talking to him. He should NOT be allowed to work with NICU parents. I never would have predicted a year ago that his heart condition would be manageable, and his hearing loss significant.

In January the audi got no response on any level from him, but told us he was too little to get accurate results, and that we should return in another month. On February 12, we returned. It was a snowy day, and Nate came home from school early because of the weather, so we headed to the appointment early. It was on that day that we found out Lucas was deaf. They (of course) called it "severe-profound hearing loss" but never called him deaf. I think for a while, I thought (and secretly hoped) that that level of hearing loss was in a different category than actually being deaf, but I soon came to realize it was one in the same, just some fancy politically correct term. They then referred us to CHOP, because of the CI program. That was also the first time we'd every really heard the buzz word, CI. Look where we are now.

This Christmas, I'm just really glad to have a beautifully happy, healthy baby boy. I am so in love with this kid! I never knew that I could feel love like this! He was our Christmas gift last year, and this year, we are giving him the gift of hearing. Isn't that amazing? Now, we just have to get through tomorrow...

Happy Birthday Lucas! You're the big 1 today!

Lucas's 1st year

1st birthday party

Yesterday was Lucas's wonderful 1st birthday party. I'm really quite pleased with how it went. I wanted it to be special, unique, memorable, and I believe that it was. We had mostly family and a few close friends, about 25 people. The video is of everyone signing "Happy Birthday" to Lucas while we sang. It was very emotional for me. On one hand, it was really cool that everyone was willing to learn and sign it, but on the other hand, Lucas had no idea that we were actually singing to him. In fact, he has no idea what singing is. Next year will be a different story, I hope! The video is a little long... I just didn't know how to shorten it. It will probably get boring after about 1 minute. The rest of the time is him slowly digging into his cake. He puts everything else on God's green earth in his mouth right away, but was quite dainty with the cake. Go figure. It was almost like it wasn't as much fun to get into, because he was allowed to get into it!!! In the end, he still got pretty messy, but it just took him a while. I think he just enjoyed the texture too. Don't forget to turn the playlist off first, before you watch the video.

Lucas got some very nice gifts... thanks everyone! We always seem to have therapy in the back of our minds, and Lucas got some toys that will complement his work with his speech therapist quite well. His Oma (my Mom) bought him a bunch of Snappy Sound books, based on the recommendation of Lucas's speech therapist. They're really fun! He also got a bunch of Little People toys, also based on her recommendation. She said that they provide lots of opportunity for descriptions and narration. So, we're set! Now we just need to turn on that hearing. 5 days until surgery, but whose counting?

This is a picture of the really cool lamb cake that my Nanny made for him to dig into! She made one for me on my 1st birthday too. It will be a tradition.

This is what we were left with!!! The long sleeved "shirt" bib worked really well!

The theme was "The Big 1"! I had these pictures printed in wallet sizes and gave them out as favors. They were a big hit! Lucas's birthday is on Tuesday (the 23rd). What a week we have ahead of us! I'm hoping and praying that surgery on Friday goes as well as his birthday party did!

10 days and counting...

Ahhhh... only 10 days left until surgery. I'm very excited, yet also very anxious and nervous for surgery. Life is really hectic right now too! I can't seem to stay on top of my school work, I'm trying to plan the *perfect* 1st birthday bash, and I'm trying to get ready for Christmas! Oh yeah, and I have a baby to take care of. I'm hoping for a 2-hour delay tomorrow to catch up a bit...

I called CHOP today to request the make, model and color for Lucas's car, I mean ear. I'm still not totally convinced, but have chosen the beige/skin-toned Cochlear Freedom. Blue would be fun, but maybe not when he's 15? I saw on the website that you can buy stickers to jazz it up too, so there's an option. I've been getting a lot of questions lately from friends and family about what it will look like, whether you'll be able to see the implant, whether it will need to be replaced as he grows, etc., so I'm going to make some educational posts. I've gotten many resources from other blogs, so thanks. Check out this cochlear implant explanation. It has a very comprehensive explanation about how the CI works.

Well, enjoy your own countdown to Christmas, as I look forward to a birthday party, Christmas, and the gift of hearing for my baby boy.

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).