Wednesday, July 30, 2008

MRI Results

Dr. K (CI ENT @ CHOP) called last week and left a message for me about Lucas' MRI results. At first, I was mad that I chose not to answer the call (because it was a random phone number), but then I was glad to have his message on my voice mail, because I listened to it like 10 times and got something different out of it every time I listened to it (and still continue to...).

He said that it appears that Lucas has auditory nerves in both ears and he said "that's good!" Without auditory nerves the CI would not be possible, because the CI bypasses the cochlea and stimulates the nerve directly to create "sound". So I'm really excited that physically he should be a candidate! That's what we were hoping for. I'm sure that we will learn more August 11-13, when we are able to ask the many questions that we have!

Usually I don't look forward to going to CHOP, as it's just another reminder of Lucas' deafness. This time, however, I'm kind of excited. We will have our CI info meeting, an appointment with his AV therapist, another booth testing appointment to see if we can chart his hearing loss anymore (and be fitted with new ear molds) and then an appointment with this new CI ENT, who can discuss the MRI with us at length. Hopefully we can then move forward with planning his CI surgery. For now, it's off to a relaxing week at the beach on Sunday before that all takes place!

Monday, July 21, 2008

This, That and the Other Thing...

I think it's time for another post! This picture was taken yesterday at my nephew's baptism. We decided to get a family shot, as we don't have many of the 3 of us looking nice.

Lucas is almost 7 months old and he is so joyful! He is pleasant, curious and he doesn't miss a beat with his eyes. He can't quite sit on his own, but he's trying! I think he would prefer to stand all the time anyway. He reaches and grabs for objects, and my Nanny taught him to lift his hands if you put yours out to him. His giggle is contagious and he has a great belly laugh. And he's a water baby! He can spend an hour or more in the water and not get bored. He likes to float on his back, throw his head back in the water and kick, kick, kick! I'm so glad that he likes the water, as Nate and I love to swim. He started eating solids about a month ago. So far he's had: rice, oatmeal, barley, carrots, sweet potatoes, butternut squash, green beans and sweet peas. He seemed not to like the green beans too much, but he didn't completely reject them either. He's also teething. It looks as if his top front teeth will come in before the bottom ones. What a surprise. Not much else has followed "textbook" progression with him, so why would he start now? (big smiley face) I regularly forget that he is profoundly deaf. Then reality hits me square in the face.

I no longer feel the need to refer to his hearing loss as severe-profound, as he has yet to test in the severe range. And, the last report we got from CHOP lists his responses to speech stimuli as "consistent with profound hearing loss, bilaterally." I often think about how different it would be if his hearing loss were only moderate. He could at least hear me call his name. I know it really wouldn't be any easier, but the grass always seems greener on the other side of the fence.

We still have yet to elicit any kind of reaction from him. But, I am absolutely convinced that when I put his hearing aids in every day, he starts to vocalize within 30 seconds, without fail. My Mom has confirmed it and so has Nate, so I'm not just imagining things either. So maybe he can hear himself a bit with his hearing aids in. I would agree that he's at least getting sound awareness.

Lucas is now a celebrity! I've passed the blog along to all of the (many) healthcare professionals that he works with, and I was contacted by CHOP to see if I would allow them to use the blog picture of Lucas in their publications! How exciting! And now I'm going to praise CHOP. Lucas is enrolled in their "CATIPIHLER" program (CHOP's Assessment and Treatment Implementation Program for Infants and toddlers with Hearing Loss - Enhancing (Re)habilitation). Two of the MAJOR benefits of the program are loaner hearing aids and free hearing aid molds for the first year! If he is a CI candidate, we will never have to purchase hearing aids on our own then. Other benefits include: speech and language assessments and intervention sessions with certified AV therapists, consultation with an educational consultant, meeting with a counselor or social worker, and assistance with referrals to other specialists, if needed. It has been very helpful, especially when I'm trying to schedule more than one appointment on one day, I've contacted CATIPIHLER and they've helped me get it done more efficiently. If I have one complaint about CHOP, it's been some incompetent support staff (receptionists, etc.) and this program has helped me bypass those frustrations. I'm very impressed with the ENT and audiologist we've been working with, so CHOP gets an A so far (Can you tell I'm a teacher?). That comment reminds me of when Lucas was admitted to the hospital over Easter with RSV with an oxygen saturation level of 80%. Initially, Nate and I were like "that's not so bad, it's a low B"... haha, now we know much better! We head to the Outer Banks in 2 weeks, then we return for marathon CHOP appointments - August 11, 12, 13 & 20. Oh yeah, I hand delivered his MRI CD to CHOP last Tuesday, and the ENT we were seeing called to re-schedule with me with one of the CI ENT surgeons, so we will see him on August 13. We will know the results of the MRI by then, at the latest.

Thursday, July 10, 2008

Quick Update

Just to give a quick update...

We won't know the results of the MRI for a while, because I guess the radiologists in Lancaster are too inexperienced to read the MRI for what I'm looking for. It's been a long few days of many phone calls and frustrations, but I've realized that I will have to send the films to CHOP and have them read them there. Who knows how long that will take. The next appointment with the ENT at CHOP is August 20, so we might not even know until then. I really hope sooner though, as I am very, very anxious to hear.

On a different note, Lucas now has a speech-language pathologist (SLP) who has a lot of experience with HOH kids, and despite a very busy schedule, is willing to take on Lucas because she has a big heart for HOH kids. I have heard so many good things about her, and I really look forward to working with her.

Although we are signing with Lucas, it is no longer our first priority. It will be an excellent way to bridge the communication gap with our son (as it is with all babies), but our real goal is for him to listen and speak. I really figured that out when I sat down with the AV therapist at CHOP and we made up a dream sheet. She asked me where I wanted Lucas to be in a year, in 5 years, in 10 years. I realized that my goal is not for him to be fluent in sign language, but rather to be speaking and listening, period. Although we're not throwing signing out, AVT (auditory-verbal therapy) is our new priority. Some families with profoundly deaf children do not sign at all, so it's not impossible, it's just a different way of thinking. We're still doing Total Communication, but with a big AV emphasis.

Thursday, July 3, 2008


I'm really glad today is over. It started at 1 AM, when I woke Lucas up to give him a bottle for the last time before the MRI. We arrived at the hospital at 6 AM, and Lucas slept the whole time we were there until he had the MRI. It really went quite smoothly. I discussed with the anesthesiologist not sedating Lucas, because I was convinced he would be asleep the whole time. The MRI was to take about 1 1/2 hours, so he didn't want to chance it. So, sedation it was. At 7:30 they wheeled me down to radiology holding Lucas and it was there that I had to give him over to the staff (that's never fun). But he was at least sleeping, so he didn't know any better. They gave him anesthesia through a mask, then put in an IV to continue giving meds, so he actually didn't shed any tears today (hooray!). That was comforting. The last two times we were in the hospital because he was sick, he cried a lot because they had to do painful procedures on him (like restarting an IV line 3 times in a row at 2 in morning).

Nate and I then went to the cafeteria to get some breakfast, he left for grad school and I went to day surgery to wait. I was told the MRI would take about an hour and half, so I was figuring I would hear from the doctor by 9:15. From about 9:20-10:00, when I still hadn't heard anything, I got pretty worried. Since there are risks associated with sedating babies, I was terrified. Instead of continuing my worst-case scenario thoughts, I asked the desk to call and find out what was going on. They said he would be in post-op in 10 minutes. I was so relieved. Soon thereafter, I met with the anesthesiologist who said Lucas did really well, and then I got to go to recovery and see my baby. The MRI just lasted longer than anticipated, as the radiologist wanted some additional pictures with contrast.

When I got there, I was told that the nurses were fighting over who got to hold him. He woke up groggy, but pleasant. He was happy to see me. He drank half a bottle and then was wide awake, standing on my lap, smiling, waving his arms, and flirting with all the nurses. And so continued his day. He had absolutely no side effects from the anesthesia! That's good to note for future reference. We both had a good nap together in the afternoon, then went swimming at Grandma's pool. You'd never know that he had had general anesthesia this morning.

At this point, we have no idea what the MRI showed. It has to be read by a radiologist, then relayed to our pediatrician, then we can find out the results. I hope to hear by the middle of next week. I'm just trying not to think about it. These results will either make or break his chances of CI candidacy, and his chance to ever hear.