(Read Part 1)
(Read Part 2)
The month leading up to Malachi's sedated ABR felt like a lifetime to me. The more I watched him the more I suspected that he wasn't hearing. We had Skyped with a deaf friend and she even told us that she didn't think he heard anything because of the way he was wasn't reacting to thinks going on around him.
Then for some reason Malachi's ABR had to be pushed back a week. I can't remember why. Something to do with OR availability. I was so angry. They moved it to his first birthday and two days before we were planned to fly out to Oregon to visit my family for two weeks. I was already going to be stressed out and crazy busy! Not to mention getting sedated with general anesthesia is a really good way to ruin a birthday.
Finally, the day came and we arrived at MUSC. Malachi had started to get a cold. I should mention that Malachi gets ear infections sooo easily. If he gets any sort of mucous in his nose, it drains and aggravates his asthma, makes him cough and then he gets an ear infection. I'm not kidding. I stayed up the whole night before listening to Malachi cough. I knew if he had an ear infection they wouldn't be able to do the test, and then we would have to wait 2+ weeks until we got back from Oregon. I was on the verge of having a panic attack. Lucky for us he did have some fluid in his ears but no infection. Hooray!
The audiologist told us it would take 45 minutes to an hour. And an hour would be the absolute max. After an hour and 15 minutes of waiting my brain started to implode. What was going on in there? Did they find something bad? WHERE IS MY BABY?! Just after the front desk nurse called back there the audiologist came out and got us.
We were walking in the OR halls and she pulled us off to the side. It was all very serial...like we were in a movie. I always thought it was unrealistic that doctors in movies would give people the bad news in the middle of a hall with no privacy. Oh no people. It's real. It happened to us.
She said "He doesn't hear anything." We said together, "Okay."
I think she was surprised by our un-reaction. We had mostly come to terms with the fact that Malachi had hearing loss. I just wasn't quite expecting that he heard nothing. She continued to tell us that the machine only tested up to 90 decibels and they didn't get any readings up to that point on either side. We almost felt relieved. Now we know what's wrong and everything made sense. We spent months worrying about what could be wrong and now we knew that the only thing wrong was deafness. I could deal with that.
The next thing she said surprised us. "I think he'd be a great candidate for cochlear implants and if you want we can schedule an appointment with a pediatric ENT here and get him on the fast track." I didn't think cochlear implants were even on our radar. I had heard that insurance didn't cover them, and they were about $60,000 a pop. I had friends who were very against cochlear implants and here this doctor was talking like we could get them, just like that. I was confused so we told her we needed to think over things on vacation and we would contact her when we got back.
Malachi's mini birthday party later that evening with the family sort of flopped because he was still pretty drugged up. He didn't want to eat cake and went to bed an hour early. I was so disappointed. Birthdays are a big deal to me and I felt like we had ruined Malachi's first one. We were using the Insanity workouts at the time and after the boys got to bed we started working out. That's finally when the heaviness of the day's events came slamming down on my shoulders. I just started bawling. Not pretty sighs and weeping. Crazy, mad-woman-like bawling and sobbing. I wasn't sad because Malachi was deaf. I was sad because I felt unqualified. I had no idea how to raise a deaf child. I am terrible at languages. I joke I can barely speak English. How in the world was I going to be able to learn ASL? What school would he go to? Will he have any friends? Am I going to be interpreting for him forever? It was all so overwhelming I just had to go to bed. I couldn't keep my brain from going crazy over questions that I just couldn't answer right then.
Little did I know that our two week vacation in Oregon would help us make one of the biggest decisions of our lives.
To be continued....
Showing posts with label the beginning. Show all posts
Showing posts with label the beginning. Show all posts
Thursday, September 22, 2011
Wednesday, September 21, 2011
The Beginning: Part 2
(Read Part 1)
Months went by and we didn't suspect anything. Then he wasn't sitting at 6 months. I figured he'd be a late bloomer, he is sooo relaxed and content. When his 9 month well child visit came up and he still wasn't sitting independently or rolling or babbling (nothing other than raspberry/snorting type noises) I was pretty concerned. I knew in my gut something was off. We were very lucky to have an amazing doctor who listened to everything I had to say. She did a very thorough exam and noticed he had low muscle tone in his stomach. She told me she wanted Malachi to see a pediatric neurologist at MUSC as well as get Malachi set up with BabyNet, a early intervention program for delayed children in South Carolina.
The pediatrician had to make the appointment...not us. A few days later the office called me and told me that we could not just get an appointment with the pediatric neurologist. We had to see a developmental delay doctor first. And in order to see her we had to fill out a packet about Malachi, send it in, and wait for a phone call to be accepted and set up an appointment. I thought for sure it was going to take forever, and I just wasn't willing to wait for some doctor to decide Malachi's fate. So I started searching for any other pediatric neurologists that would see Malachi. To no avail. The only pediatric neurologists in the state, under our insurance that would see a child for developmental delay was at MUSC. I gave in and filled out the paper work expecting to not hear anything from them for weeks.
About a week later I got a phone call from DD (developmental delay) at MUSC asking if we could come in the next day. Some meetings had been cancelled that freed up a doctor to see Malachi. Lucky for us it was spring break so Brian didn't even have to request time off.
The next day we were sitting in a room waiting for the doctors (you see a resident first, then both the resident and attending). I remember it being hot. I was so nervous. When the resident came in she asked a ton of questions about Malachi's habits, gestures, milestones, eating. All that fun stuff. I felt drained. What more could I tell them? Then they start doing some play tests to assess his fine and gross motor skills. I felt embarrassed Obviously he was behind normal development. I felt like it was my fault. Did I leave him in his bouncy seat or swing too often? Was I not talking to him enough? I felt like a horrid mother.
The action plan was to do a general brain MRI just to make sure there wasn't anything obvious, and since he had failed hearing tests in the past she wanted him to see a pediatric audiologist there at MUSC. We also made an appointment with the pediatric neurologist. The MRI and audiologist appointment were made for two weeks later and we couldn't get into the neurologist for over 3 months.
We also had Malachi assessed by BabyNet. He failed all three categories: physical, speech, and cognitive. He mostly failed cognitive because at that point there was no way to tell otherwise how his problem solving skills were. For a 10 month child if they fail physically and speech wise, they almost always fail cognitive as well because the categories cross over into each other. That enabled us to get physical therapy, speech therapy, as well as a early interventionist coordinator that would work with him and the family.
Two weeks passed and we traveled back down to MUSC. The MRI was sedated and that was the first time Malachi had an IV. I was a nervous wreck. I hated having to hold him down while the nurses poked him. When I asked the nurses how it went, they said obviously nothing major was found because they are letting you go home! That was a relief.
All we had to do next was the audiologist. She ended up setting us up in the sound booth. Malachi wasn't being very cooperative and I was thinking "great! now we're just going to have to come back to do the test again!". Some of the sounds were so loud that my ears and brain felt like they were rattling. When it was all done she came into the booth and said, "I'm sorry but I don't think his is hearing much if anything at all." We were stunned. What? She checked his ears for fluid and everything seemed normal so anything hearing loss was permanent. She said she wanted to do a sedated ABR (we laughed at that because we seriously JUST had him sedated less than an hour before...). She told me that any hearing tests done on a small infant while awake are usually unreliable.
We walked out of there in a daze. It wasn't until we were half way home and I was telling my mom of the details that I realized what had happened. Oh. My. Word. We don't think Malachi hears very well! I wasn't convinced that he was completely deaf. I had seen him react to sound! Or so I thought. Malachi's sedated ABR was scheduled a month away. The longest month of my life.
To be continued.
Months went by and we didn't suspect anything. Then he wasn't sitting at 6 months. I figured he'd be a late bloomer, he is sooo relaxed and content. When his 9 month well child visit came up and he still wasn't sitting independently or rolling or babbling (nothing other than raspberry/snorting type noises) I was pretty concerned. I knew in my gut something was off. We were very lucky to have an amazing doctor who listened to everything I had to say. She did a very thorough exam and noticed he had low muscle tone in his stomach. She told me she wanted Malachi to see a pediatric neurologist at MUSC as well as get Malachi set up with BabyNet, a early intervention program for delayed children in South Carolina.
The pediatrician had to make the appointment...not us. A few days later the office called me and told me that we could not just get an appointment with the pediatric neurologist. We had to see a developmental delay doctor first. And in order to see her we had to fill out a packet about Malachi, send it in, and wait for a phone call to be accepted and set up an appointment. I thought for sure it was going to take forever, and I just wasn't willing to wait for some doctor to decide Malachi's fate. So I started searching for any other pediatric neurologists that would see Malachi. To no avail. The only pediatric neurologists in the state, under our insurance that would see a child for developmental delay was at MUSC. I gave in and filled out the paper work expecting to not hear anything from them for weeks.
About a week later I got a phone call from DD (developmental delay) at MUSC asking if we could come in the next day. Some meetings had been cancelled that freed up a doctor to see Malachi. Lucky for us it was spring break so Brian didn't even have to request time off.
The next day we were sitting in a room waiting for the doctors (you see a resident first, then both the resident and attending). I remember it being hot. I was so nervous. When the resident came in she asked a ton of questions about Malachi's habits, gestures, milestones, eating. All that fun stuff. I felt drained. What more could I tell them? Then they start doing some play tests to assess his fine and gross motor skills. I felt embarrassed Obviously he was behind normal development. I felt like it was my fault. Did I leave him in his bouncy seat or swing too often? Was I not talking to him enough? I felt like a horrid mother.
The action plan was to do a general brain MRI just to make sure there wasn't anything obvious, and since he had failed hearing tests in the past she wanted him to see a pediatric audiologist there at MUSC. We also made an appointment with the pediatric neurologist. The MRI and audiologist appointment were made for two weeks later and we couldn't get into the neurologist for over 3 months.
We also had Malachi assessed by BabyNet. He failed all three categories: physical, speech, and cognitive. He mostly failed cognitive because at that point there was no way to tell otherwise how his problem solving skills were. For a 10 month child if they fail physically and speech wise, they almost always fail cognitive as well because the categories cross over into each other. That enabled us to get physical therapy, speech therapy, as well as a early interventionist coordinator that would work with him and the family.
Two weeks passed and we traveled back down to MUSC. The MRI was sedated and that was the first time Malachi had an IV. I was a nervous wreck. I hated having to hold him down while the nurses poked him. When I asked the nurses how it went, they said obviously nothing major was found because they are letting you go home! That was a relief.
All we had to do next was the audiologist. She ended up setting us up in the sound booth. Malachi wasn't being very cooperative and I was thinking "great! now we're just going to have to come back to do the test again!". Some of the sounds were so loud that my ears and brain felt like they were rattling. When it was all done she came into the booth and said, "I'm sorry but I don't think his is hearing much if anything at all." We were stunned. What? She checked his ears for fluid and everything seemed normal so anything hearing loss was permanent. She said she wanted to do a sedated ABR (we laughed at that because we seriously JUST had him sedated less than an hour before...). She told me that any hearing tests done on a small infant while awake are usually unreliable.
We walked out of there in a daze. It wasn't until we were half way home and I was telling my mom of the details that I realized what had happened. Oh. My. Word. We don't think Malachi hears very well! I wasn't convinced that he was completely deaf. I had seen him react to sound! Or so I thought. Malachi's sedated ABR was scheduled a month away. The longest month of my life.
To be continued.
Saturday, September 10, 2011
The Beginning: Part 1
I started this blog when Malachi was 14 months old. A friend made a good point that when people are confused and looking for help and support is before and leading up to the big decision and where we are at now. I am going to start from the beginning and write several posts leading up to this point.
June 22, 2010- Malachi was born. The labor was perfect. The doctor said that the umbilical cord was wrapped around his neck, but he didn't seem concerned. The doctor was able to unwrap the cord pretty quickly, and Malachi's AGAR score was a 9 (out of 10). Malachi was never even a little jaundice (because he was a champion eater). So no worries. Before we left the hospital Malachi had the routine newborn hearing screening. They asked me to feed him so he would sleep through it. I called them to come pick Malachi up after a feeding and they didn't come for near an hour and half. I knew he was going to be hungry during the test. They said he wasn't very cooperative and cried during parts of the test. He failed his left ear and passed his right. They told me not to worry because sometimes baby's have vernix in their ears and it kind of clogs them up. We would need to go in an have him screened again in one month just to make sure.
At one month we went to a hearing center to get another screening done. He didn't pass either ear. He was pretty cooperative that time and she thought maybe his ear canals were just a little too small because they didn't have the small plugs that the hospital has. So we can back a month later, he was now 2 months old. Again, he didn't pass either ear at all and he was cooperative. She decided to refer us to an otolaryngology clinic.
September 2010 - The otolaryngology appointment was a couple of weeks later. Malachi was almost 3 months old. The doctor decided to clean out his left ear because there was quite a bit of wax in it before they proceeded with the ABR. I had tried to time the appointment right after he had eaten but with all the waiting and then having his ear cleaned out he was ready for a feeding and was annoyed from being messed with. He was really uncooperative and I remember thinking that we would have to come back in for another test. I ended up feeding him during part of the test and then he would drift off to sleep, then wake up and eat again. Then he would get upset about the stuff on his head and ears and cry. After what seemed like forever, she told me that she "hesitantly" passed him. I was a bit confused how that worked, I didn't know anything about hearing tests. She told me to watch out for any signs that he wasn't hearing and if something seemed off by the time he was 12 months to come back in for a retest. That was good enough for me, I assumed nothing was wrong. I called family and friends and told everyone that Malachi was fine.
To be continued
June 22, 2010- Malachi was born. The labor was perfect. The doctor said that the umbilical cord was wrapped around his neck, but he didn't seem concerned. The doctor was able to unwrap the cord pretty quickly, and Malachi's AGAR score was a 9 (out of 10). Malachi was never even a little jaundice (because he was a champion eater). So no worries. Before we left the hospital Malachi had the routine newborn hearing screening. They asked me to feed him so he would sleep through it. I called them to come pick Malachi up after a feeding and they didn't come for near an hour and half. I knew he was going to be hungry during the test. They said he wasn't very cooperative and cried during parts of the test. He failed his left ear and passed his right. They told me not to worry because sometimes baby's have vernix in their ears and it kind of clogs them up. We would need to go in an have him screened again in one month just to make sure.
At one month we went to a hearing center to get another screening done. He didn't pass either ear. He was pretty cooperative that time and she thought maybe his ear canals were just a little too small because they didn't have the small plugs that the hospital has. So we can back a month later, he was now 2 months old. Again, he didn't pass either ear at all and he was cooperative. She decided to refer us to an otolaryngology clinic.
September 2010 - The otolaryngology appointment was a couple of weeks later. Malachi was almost 3 months old. The doctor decided to clean out his left ear because there was quite a bit of wax in it before they proceeded with the ABR. I had tried to time the appointment right after he had eaten but with all the waiting and then having his ear cleaned out he was ready for a feeding and was annoyed from being messed with. He was really uncooperative and I remember thinking that we would have to come back in for another test. I ended up feeding him during part of the test and then he would drift off to sleep, then wake up and eat again. Then he would get upset about the stuff on his head and ears and cry. After what seemed like forever, she told me that she "hesitantly" passed him. I was a bit confused how that worked, I didn't know anything about hearing tests. She told me to watch out for any signs that he wasn't hearing and if something seemed off by the time he was 12 months to come back in for a retest. That was good enough for me, I assumed nothing was wrong. I called family and friends and told everyone that Malachi was fine.
To be continued
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