Drew's sister returned home today. She stayed at Gam-ma's yesterday while we were with Drew during his surgery. She had a fun time at Gam-ma's house. She went with Gam-ma and Aunt Angie to the zoo. She had a blast!
When she got home today she immediately noticed the bandages on Drew's head. She was a little scared at first, so I explained that his ears had a "boo-boo." That's the best two-year-old term I know. I told her that this would allow Drew to hear in just a couple of weeks. She looked at me, shrugged her shoulders and went on with playing.
Later she looked at Drew, pointed to his bandages and said, "Boo-boo." I nodded. Then she said, "he hear."
"That's right," I said, in my typical motherly intonation. "What would you like to tell Drew when he can hear?" I asked.
She paused. I had really thrown her a curve ball. What would she like to tell Drew about? She gave me one of those, "I'm thinking" looks, drawing her fore finger to her mouth. "Santa," she said in the cheeriest of voices. "Toys and presents." She had such a huge smile on her face, like she is really excited to tell Drew all about Santa Claus!
There you have it. Drew is going to learn all about Santa, toys and presents from his sister as soon as he can hear!
Thursday, June 7
In recovery.
The next morning.Wednesday, June 6
Surgery Complete - We're Home
We are now home. I just fed Drew and put him to bed - hopefully for the night, but we will see.
We arrived at the hospital at 8:30 AM this morning for the pre-op work. We then waited until 11:40 AM, Drew's surgery time. He was such a wonderful patient! Despite being hungry (and tired) he managed to remain a happy little boy. He was even flirting with the nurses and showing off his cute laughter!
The nurses took him to the operating room around 11:15 AM. It was a lot harder to let him go than what we thought it would be. We tried to each lunch shortly thereafter, but neither Drew's Dad nor I had much of an appetite.
The surgery lasted about 3 1/2 hours. Dr. Kang was very pleased with the insertion of each of the electrode arrays and there were no surgical complications. Drew had a bit of fluid in his right ear but nothing that complicated the surgery. In addition, Drew's audiologist tested both arrays and they are working beautifully! We are very happy with the results and look forward to activation day on June 28th.
It took Drew about one hour to wake up after surgery. He woke up fairly happy and VERY hungry! He ate four ounces of pedialyte in just a few short minutes. I could tell that he was not quite himself; he didn't want to play with his toys very much and he just laid in my arms, very different from my wiggle worm. Since he was able to keep his food down the nurse released him from the hospital a little before 6 PM.
We would like to thank each of your for your thoughts and prayers for Drew. They certainly worked!
We arrived at the hospital at 8:30 AM this morning for the pre-op work. We then waited until 11:40 AM, Drew's surgery time. He was such a wonderful patient! Despite being hungry (and tired) he managed to remain a happy little boy. He was even flirting with the nurses and showing off his cute laughter!
The nurses took him to the operating room around 11:15 AM. It was a lot harder to let him go than what we thought it would be. We tried to each lunch shortly thereafter, but neither Drew's Dad nor I had much of an appetite.
The surgery lasted about 3 1/2 hours. Dr. Kang was very pleased with the insertion of each of the electrode arrays and there were no surgical complications. Drew had a bit of fluid in his right ear but nothing that complicated the surgery. In addition, Drew's audiologist tested both arrays and they are working beautifully! We are very happy with the results and look forward to activation day on June 28th.
It took Drew about one hour to wake up after surgery. He woke up fairly happy and VERY hungry! He ate four ounces of pedialyte in just a few short minutes. I could tell that he was not quite himself; he didn't want to play with his toys very much and he just laid in my arms, very different from my wiggle worm. Since he was able to keep his food down the nurse released him from the hospital a little before 6 PM.
We would like to thank each of your for your thoughts and prayers for Drew. They certainly worked!
Monday, June 4
We're Headed to Italy!
It's true! Our trip to Italy starts first thing tomorrow morning. There was a time about seven months ago when I thought I might never get to take Drew, but after months of planning we are finally ready to go!We aren't going to arrive there tomorrow. There will likely be delays, flat tires, pit stops, and even lay overs. Some of these may be longer and more frustrating than what we think we can endure. We may even ask ourselves, "Are we there yet?" But I am looking forward to the journey just as much as I am looking forward to the destination. When you think about it, it is actually very special that we will get to visit so many places with Drew along the way. Not many people bound for Italy get to stop as many places as we will and relish in those moments. We are going to have so many that will shape the person Drew will become. I can not wait to watch the transformation, from beautiful Deaf baby to a hearing, speaking, communicating deaf child.
We are nervous for the beginning. Once we get through this I think we can handle the rest. We will let you know how our trip begins as soon as we can tomorrow.
Ciao!
Thanks to Drew's Mom
I was sitting alone on the hospital couch which had served as my bed the night before. I think I was using my laptop, or reading - I don't recall. Drew's Mom was enjoying her first shower after becoming a Mom to her little boy.
A soft 'knock' pierced the silence, and I rose and strode across the linoleum floor gently. I slowly swung the door open and saw a girl (now a grown woman) that sat next to me while we practiced our first cursive letters in first grade. My old first grade classmate was now an audiologist working for the hospital.
We exchanged "hellos" and she asked where Drew's Mom was. I explained that she had just entered the shower and she said she'd come back in a bit. However, at my gentle insistence (don't want to bother mom with this), we sat down on the couch I had just vacated to go over the papers she held in her hand.
I glanced at the front page and saw different graphs with lines on them, and medical jargon. It was Drew's newborn hearing screening paperwork, indicating the results of his ABR and OAE tests. He had not passed. My friend left the room and I sat there alone. Alone in the silent room, I wondered what the test really meant, and how it would affect my son's life. I had no answers.
Luckily for me (and Drew), I was not really alone. Soon after, my wife emerged from the shower.
From the time she sat down on that hospital couch and I told her what I had learned, she has taken constant action to help all of us find information of deafness, information on genetic defects, seek out and meet medical and educational professionals, share that information with others, set appointments, attend appointments, set appointments to set more appointments which will lead to further appointments, (and attend all those appointments!) and so on.
From the beginning, when we walked into a meeting, we were prepared. We rode in there with a list of specific questions that both of us carefully thought about, an attitude that said "we will only accept the best", and the 15 pound maroon binder which Drew's Mom tabbed and organized. That binder holds all of Drew's test results, medical information, lists of prior questions, and all other material that we felt anyone might need to know about Drew to help us make the proper decisions. We usually got a laugh from nurses or doctors because they'd never seen such preparedness.
We didn't go in to these meetings asking "What's an implant do?", we asked "Is there any indication of whether Drew's deafness was caused by the mutated Connexin-26 gene or if it was caused by the mitochondrial abnormality." We didn't ask "Will Drew ever hear?", we asked "Now I understand that much of the speech banana is at a lower level of about 30 decibels. If Drew has a bilateral loss of approximately 95 decibels, where exactly will his CI-aided hearing fall?" At our last meeting with Dr. Kang, he didn't even go into a long speech about the surgery. He knew we had researched everything and just let us ask specific questions before he talked for a short while.
I can't detail here all the work that Drew's Mom has put in over the last 8+ months, but I do want people to know that it made a difference. I know I couldn't have gotten to this point with all the knowledge and comfort that I have, if I had to do it alone.
It's no stretch to say that Drew is going to have his cochlear implant surgery this Wednesday, Thanks to Drew's Mom.
A soft 'knock' pierced the silence, and I rose and strode across the linoleum floor gently. I slowly swung the door open and saw a girl (now a grown woman) that sat next to me while we practiced our first cursive letters in first grade. My old first grade classmate was now an audiologist working for the hospital.
We exchanged "hellos" and she asked where Drew's Mom was. I explained that she had just entered the shower and she said she'd come back in a bit. However, at my gentle insistence (don't want to bother mom with this), we sat down on the couch I had just vacated to go over the papers she held in her hand.
I glanced at the front page and saw different graphs with lines on them, and medical jargon. It was Drew's newborn hearing screening paperwork, indicating the results of his ABR and OAE tests. He had not passed. My friend left the room and I sat there alone. Alone in the silent room, I wondered what the test really meant, and how it would affect my son's life. I had no answers.
Luckily for me (and Drew), I was not really alone. Soon after, my wife emerged from the shower.
From the time she sat down on that hospital couch and I told her what I had learned, she has taken constant action to help all of us find information of deafness, information on genetic defects, seek out and meet medical and educational professionals, share that information with others, set appointments, attend appointments, set appointments to set more appointments which will lead to further appointments, (and attend all those appointments!) and so on.
From the beginning, when we walked into a meeting, we were prepared. We rode in there with a list of specific questions that both of us carefully thought about, an attitude that said "we will only accept the best", and the 15 pound maroon binder which Drew's Mom tabbed and organized. That binder holds all of Drew's test results, medical information, lists of prior questions, and all other material that we felt anyone might need to know about Drew to help us make the proper decisions. We usually got a laugh from nurses or doctors because they'd never seen such preparedness.
We didn't go in to these meetings asking "What's an implant do?", we asked "Is there any indication of whether Drew's deafness was caused by the mutated Connexin-26 gene or if it was caused by the mitochondrial abnormality." We didn't ask "Will Drew ever hear?", we asked "Now I understand that much of the speech banana is at a lower level of about 30 decibels. If Drew has a bilateral loss of approximately 95 decibels, where exactly will his CI-aided hearing fall?" At our last meeting with Dr. Kang, he didn't even go into a long speech about the surgery. He knew we had researched everything and just let us ask specific questions before he talked for a short while.
I can't detail here all the work that Drew's Mom has put in over the last 8+ months, but I do want people to know that it made a difference. I know I couldn't have gotten to this point with all the knowledge and comfort that I have, if I had to do it alone.
It's no stretch to say that Drew is going to have his cochlear implant surgery this Wednesday, Thanks to Drew's Mom.
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