The two-is weeks between visits didn't feel as long as the first time, but it still wasn't easy picking up even more indications and trying not to get our hopes up for this next round of tests. Or adding more to the growing tally of questions and worries. Had I played music to loud in the car- her car seat was by a door with a speaker. Could the fluid test have been wrong? Could we still just need tubes? Was it a problem with her brain?
It was more of a relief this time to be going in. The Hubs and I were sure we were going to come out with clear answers we could act on to help Tiny.
I am not ashamed to admit that the day before her appointment we tried to run her ragged, kept her up past her bedtime, and woke her up early the next day and kept her going and going and going until it was time to get in the car for the appointment. Bug came this time, because as it turns out, she was very worried for her little sister and even though she had fun with cousins the last time, she was very upset that we didn't take her.
She told us she wanted to be there for her little sister so she wasn't scared. She is very smart and attentive for her age and she had heard us talking about everything and had started to form her own worries. She also knew Doctor visits could be scary, so for this second visit we let her go with us.
We went prepared this time too. We packed a bag full of toys and treats and a portable DVD player with a small case full of favorite movies, hoping we wouldn't need any of it. I prayed and prayed she would fall asleep and we left extra early so we could drive around, because falling asleep in the car was one of the sure fire ways to get her to take a nap.
We drove around looking at the outside of a few of the houses we had scheduled to see with our realtor later and tried to keep the atmosphere in the car calm and relaxing to help. Fifteen minutes into the ride I had almost given up hope that she was going to fall asleep, but then her eyes drooped and a minute later she was out!
I pulled as close to the front door as we could because the wind had picked up and that was one sure fire way to wake her up. The Hubs managed to get her out and into the building still asleep while I parked the car, checked us in and they let us go straight back to a room to help keep her asleep. I got Bug settled in with a book and a snack while we waited for Dr. W.
We carefully got the electrodes placed on her head, she stirred a little but Dr. W managed to get her all hooked up. He decided while she was asleep he wanted to rerun the fluid and OAE tests. We got all the way through those- still no fluid and no response from her eardums from the OAE, it was just conclusive now. I still tried to hold on to hope while we were finishing getting her hooked up for the ABR. Then she started to stir.
My heart sank, she rarely settled back into sleep after stirring. I hurried and pulled out the DVD player to be ready and got Curious George fired up. He's her very favorite. She looked around at all of us and for a moment looked like she was going to be upset, but then she saw the movie and I sighed with relief as she sat and watched and let Dr. W start running the ABR on her right ear.
A little note about the ABR, it is a test that checks to see if the nerves in the inner ear are connecting properly with the brain. It is one of, if not the, conclusive test about whether or not someone is deaf or partially deaf and at what range you can hear. I only knew enough at this point to know it could tell me if my child was deaf and I was certainly ready to know for sure if she could hear anything.
So back to the test. We needed her to sit still and be quite for at least 30 minutes, probably longer. Now that she was awake I worried if this was going to work and wished we hadn't wasted time running the other tests and lost precious unconscious minutes, but she sat there.
The longer she sat, the more I was sure we were finally going to get some answers. I watched Dr. W's screen as he pressed different buttons. There were lines on the screen that looked a little like heart monitor blips and I watched as he tested things and new lines showed up that he highlighted and dragged up to compare to a line that didn't change and had a word like standard or sample next to it.
The more I watched, the less hopeful I was. I tried not to be, telling myself I had no idea what those blips meant. Bug was surprisingly quite and when she did talk or ask me questions she whispered. Dr. W let her look at some model ears and hearing aids and she snuck out twice to get a candy from the very nice receptionist and a drink.
The test lasted about a little over and hour for her right ear and when tried to do the left, she was done, done, done. She didn't want anyone touching her head or coming close to her ears. Still, we'd gotten one ear done, right?
Dr. W took a breath, "Well, without being able to do both ears I can't really give you a full diagnosis. I don't want to tell you something that could be untrue."
ARE YOU KIDDING ME?
He kept going, "If she were my child, I would try and schedule a sedated ABR." He told us he thought we could do one in a town 45 minutes from us but if it was him, he'd go to the Primary Children's Hospital that was 4 hours away. We agreed we wanted to go to a place that specialized in Children's medicine and Diagnosis because then we could be sure about what they told us and they could refer us to anyone else we might see.
Dr. W couldn't refer us to their Audiology Department himself, I still don't know why, but he would write a recommendation for our pediatrician Dr. P to review and send on for his referral that day. Dr. W let us know he was there for us for any questions we had while we waited for that appointment and any subsequent hearing needs we might have in the future. He was really nice and despite the fact that we left with no definite answers again I felt he did the best he could under the circumstances.
Had I known what a trial it was going to be actually getting our referral through our Pedatrician's office to Primary Children's I might have just asked if we couldn't try again.
It was hard walking out of that office again with no answers. It was hard watching from day to day and wondering if Tiny could hear anything. It was hard, but I kept telling myself, at least it's another step in the right direction.
This is all a process, and sometimes as a parent I've wanted to take a chainsaw to all the red tape and forms and insurance messes and the medical bureaucracy, and just say "This is crap. You're supposed to be helping me not leaving me with more questions and more weight on my already heavy shoulders!" But, if there is one thing I've come to realize it's this- even having to fight to go forward, it was still forward.
Thursday, January 29, 2015
Audiologist- Visit #1
February is a busy month for us generally as we prepare for Bug's
birthday and Valentines Day and it always seems to have a lot of
activities for a cold month. Besides all this our family started looking
for our first home, so the month was busy, but I still dreaded the appointment at the end, but the day finally came. At this point we had contacted our families and asked for prayers and good thoughts that if possible Tiny's hearing could be restored or that it was something minor that could be fixed easily. We'd done a little research and we were really hoping it was going to be a drainage problem and that tubes could be the solution to her not hearing, but we were also trying not to get our hopes up.
I had a wonderful sister offer to watch Bug so the Hubs and I could focus completely on Tiny and what the doctor was saying. We got to the small front office of the audiologist and there was an older couple waiting. We got the paperwork and sat down to fill it out, finished it and sat and waited to be taken back.
Tiny was a bit of handful as there wasn't really kid stuff for her to do, but she was having fun being with her Dad who is her all time favorite person 99% of the time and other other 1% he's probably still her favorite but she's sassy like that.
I couldn't help but look at all the informational posters and art around the small room. The thing that drew my attention over and over though was a framed quote by Helen Keller. It read, "Blindness separates people from things; deafness separates people from people."
It broke my heart to admit to myself, but I could fully relate to this. During the time after the first hearing test in our home and this appointment, I realized just how disconnected Tiny was from us. She would interact with the world around her, but moments of connection with people, even with us her family, weren't long or really deep. It also compounded what a nursery teacher had said to me not to long before this visit. "We love your daughter and she is mostly sweet, but she doesn't really play with the other kids. She either fights over a toy and gets angry or lately she just finds a toy and goes and sits in a corner. Is this normal for her?"
I decided to tell her a little about what was going on and that I appreciated that she was keeping an eye on my daughter and had felt comfortable voicing her concerns. If we hadn't already been on this journey, I might have been offended at the implication that something was "wrong" with my child, but by this point, I was finally really letting myself see Tiny's situation for what is was- not normal.
Even knowing that her ears weren't working properly, the almost month it took before this first appointment was frustrating. I kept having to remind myself, "She can't hear you and yelling is never a good option," especially when her older sister was around to hear it or was the cause of it. What good did yelling do? Nothing. Not even for my hearing daughter, it only made her sad and scared and me feel foolish and sad I had done it. I did my best to remember that, and to not yell but it was still hard.
So back to the audiologists visit. They finally called us back and the nurse tried to put probes in her ears, but the secretary came and needed something from me, a copy of an insurance card or something, so I got up and left to finish up what they needed. She gave me a few candies when we were done because we could both hear Tiny down the hall in the other room freaking out.
Candy worked for a few minutes when I got back, but she still was trying to pull the probes out before the tests were finished. Her Dad managed to get her to hold still long enough to get some readings and the nurse left. Then the Audiologist came in, Dr. W.
He looked over the readings and wanted to try one more time, nothing doing, she would not leave the probes in long enough. So he decided he'd like to try some booth tests.
For those of you that don't know what that is, they take your child into a semi-soundproof box and try and see if they respond to different tones, pitches, frequencies and at different decibels to see when/if they respond. They also have lights that flick on and off and some have screens in them that flash pictures.
Before the booth test he wanted to talk to us and get some more history. We told him how she passed her newborn screening, how she had started to talk, how we noticed things that made me worry, about the visit with Dr. P the new pediatrician, all of it. He took notes and asked about family history.
Tiny was squirming all over and since we'd moved rooms, she wanted to explore and touch everything, including all the fall apart ear models in the room and the machines and computers. We were trying to keep her interested in the toys and snacks we brought while we talked to him, but she just wasn't very happy about it all.
So we cut to the chase and tried the booth test. She wouldn't go in.
So her Dad went in and she shut him in and stayed out. So we went back to the receptionist, got another candy and tried to bribe her to go in with her Dad. She did, but wanted to come right back out after getting the candy.
I helped keep the door shut while he tried to play with her on his lap with a few toys that happened to be in the booth. She finally stayed in but went in a corner and refused to let him hold her or look at anyone. After she calmed down, she let her Dad hold her over his shoulder, but since she wasn't facing the flashing lights and every time he tried to turn so she might be, she freaked out. So, finally Dr. W shook his head and said we were done.
He asked us if she still took naps and what times those were and we told him, she hadn't been a regular napper for a few months now, we could count on a nap maybe every other day or ever three days and the time could be anywhere in a four block time frame that she went down. It was at this point I regretted not being a mom that made my kids have regular daily naps at a regular time, or at least Tiny.
Still, he suggested we make another appointment and try and come back while she was sleeping. We should make it an extra long appointment as well, because if we could get her to be asleep, they could run a lot more tests without her pulling on things and he specifically wanted to run a test call an ABR or Automated Brain stem Response test and she needed to be quite and still for a long time with that one.
He told us he didn't want to make any judgements yet, since the OAE tests never got to fully finish with her pulling on the probes, but they had been able to get results from the fluid tests and it didn't appear she had any fluid behind her eardrums that would keep them from functioning.
I felt sick. I also felt frustrated. We still didn't really have answers. We had to come again and hope that we could have her be asleep and stay asleep long enough to get any. All of these were big maybes because who knew if she would go to sleep at the time we wanted, or STAY asleep for that matter, but what choice did we really have?
So we gathered up our stuff, went to the front office and scheduled another appoint. It was the end of February by now and the next appointment they had available with the extended time we needed, and in their office here in our town, wasn't until the middle of March. It was hard, I wanted answers now. I took a breath and sucked it up, and asked they call us if there were any cancellations and we could come in sooner, then we left.
My eyes read the quote again as we left, "Blindness separates people from things; deafness separates people from people."
My heart ached and I wondered and worried at how separate Tiny was from us. Did she feel it? Did she know we loved her? Did she feel alone and confused? I knew she had heard us when she was a baby, but when had she stopped hearing us? What was the last thing I said, that she really heard? Was I yelling and angry at her because she was 'ignoring' me? Was it the sound of my voice saying something kind?
I can't lie and say I haven't shouted since that day, I know I have- in frustration and in upset- at her sister or life or even her despite the fact that she can't hear me. But when I have I almost always regret it and apologize to both my girls, the one that can hear my voice and the one that can't. I try and remind myself that not only do words matter, but how we say them, and how loudly we say them can matter just as much. Sometimes, even if people can't hear us, the words are worth saying anyway.
Observations: I wish, when initially making this appointment, I had asked what kind of tests they would be running and what we could do to help make them go more smoothly. Had I known it was better she be asleep, I would have tried from this initial visit. I also would have brought more than a fruit snack and a favorite stuffed animal and water bottle if I'd known they didn't see kids often so there wasn't much for Tiny to do or look at. I knew generalities, but not specifics, and I learned since this appointment to ask more initial questions to save ourselves rescheduling and frustration.
I had a wonderful sister offer to watch Bug so the Hubs and I could focus completely on Tiny and what the doctor was saying. We got to the small front office of the audiologist and there was an older couple waiting. We got the paperwork and sat down to fill it out, finished it and sat and waited to be taken back.
Tiny was a bit of handful as there wasn't really kid stuff for her to do, but she was having fun being with her Dad who is her all time favorite person 99% of the time and other other 1% he's probably still her favorite but she's sassy like that.
I couldn't help but look at all the informational posters and art around the small room. The thing that drew my attention over and over though was a framed quote by Helen Keller. It read, "Blindness separates people from things; deafness separates people from people."
It broke my heart to admit to myself, but I could fully relate to this. During the time after the first hearing test in our home and this appointment, I realized just how disconnected Tiny was from us. She would interact with the world around her, but moments of connection with people, even with us her family, weren't long or really deep. It also compounded what a nursery teacher had said to me not to long before this visit. "We love your daughter and she is mostly sweet, but she doesn't really play with the other kids. She either fights over a toy and gets angry or lately she just finds a toy and goes and sits in a corner. Is this normal for her?"
I decided to tell her a little about what was going on and that I appreciated that she was keeping an eye on my daughter and had felt comfortable voicing her concerns. If we hadn't already been on this journey, I might have been offended at the implication that something was "wrong" with my child, but by this point, I was finally really letting myself see Tiny's situation for what is was- not normal.
Even knowing that her ears weren't working properly, the almost month it took before this first appointment was frustrating. I kept having to remind myself, "She can't hear you and yelling is never a good option," especially when her older sister was around to hear it or was the cause of it. What good did yelling do? Nothing. Not even for my hearing daughter, it only made her sad and scared and me feel foolish and sad I had done it. I did my best to remember that, and to not yell but it was still hard.
So back to the audiologists visit. They finally called us back and the nurse tried to put probes in her ears, but the secretary came and needed something from me, a copy of an insurance card or something, so I got up and left to finish up what they needed. She gave me a few candies when we were done because we could both hear Tiny down the hall in the other room freaking out.
Candy worked for a few minutes when I got back, but she still was trying to pull the probes out before the tests were finished. Her Dad managed to get her to hold still long enough to get some readings and the nurse left. Then the Audiologist came in, Dr. W.
He looked over the readings and wanted to try one more time, nothing doing, she would not leave the probes in long enough. So he decided he'd like to try some booth tests.
For those of you that don't know what that is, they take your child into a semi-soundproof box and try and see if they respond to different tones, pitches, frequencies and at different decibels to see when/if they respond. They also have lights that flick on and off and some have screens in them that flash pictures.
Before the booth test he wanted to talk to us and get some more history. We told him how she passed her newborn screening, how she had started to talk, how we noticed things that made me worry, about the visit with Dr. P the new pediatrician, all of it. He took notes and asked about family history.
Tiny was squirming all over and since we'd moved rooms, she wanted to explore and touch everything, including all the fall apart ear models in the room and the machines and computers. We were trying to keep her interested in the toys and snacks we brought while we talked to him, but she just wasn't very happy about it all.
So we cut to the chase and tried the booth test. She wouldn't go in.
So her Dad went in and she shut him in and stayed out. So we went back to the receptionist, got another candy and tried to bribe her to go in with her Dad. She did, but wanted to come right back out after getting the candy.
I helped keep the door shut while he tried to play with her on his lap with a few toys that happened to be in the booth. She finally stayed in but went in a corner and refused to let him hold her or look at anyone. After she calmed down, she let her Dad hold her over his shoulder, but since she wasn't facing the flashing lights and every time he tried to turn so she might be, she freaked out. So, finally Dr. W shook his head and said we were done.
He asked us if she still took naps and what times those were and we told him, she hadn't been a regular napper for a few months now, we could count on a nap maybe every other day or ever three days and the time could be anywhere in a four block time frame that she went down. It was at this point I regretted not being a mom that made my kids have regular daily naps at a regular time, or at least Tiny.
Still, he suggested we make another appointment and try and come back while she was sleeping. We should make it an extra long appointment as well, because if we could get her to be asleep, they could run a lot more tests without her pulling on things and he specifically wanted to run a test call an ABR or Automated Brain stem Response test and she needed to be quite and still for a long time with that one.
He told us he didn't want to make any judgements yet, since the OAE tests never got to fully finish with her pulling on the probes, but they had been able to get results from the fluid tests and it didn't appear she had any fluid behind her eardrums that would keep them from functioning.
I felt sick. I also felt frustrated. We still didn't really have answers. We had to come again and hope that we could have her be asleep and stay asleep long enough to get any. All of these were big maybes because who knew if she would go to sleep at the time we wanted, or STAY asleep for that matter, but what choice did we really have?
So we gathered up our stuff, went to the front office and scheduled another appoint. It was the end of February by now and the next appointment they had available with the extended time we needed, and in their office here in our town, wasn't until the middle of March. It was hard, I wanted answers now. I took a breath and sucked it up, and asked they call us if there were any cancellations and we could come in sooner, then we left.
My eyes read the quote again as we left, "Blindness separates people from things; deafness separates people from people."
My heart ached and I wondered and worried at how separate Tiny was from us. Did she feel it? Did she know we loved her? Did she feel alone and confused? I knew she had heard us when she was a baby, but when had she stopped hearing us? What was the last thing I said, that she really heard? Was I yelling and angry at her because she was 'ignoring' me? Was it the sound of my voice saying something kind?
I can't lie and say I haven't shouted since that day, I know I have- in frustration and in upset- at her sister or life or even her despite the fact that she can't hear me. But when I have I almost always regret it and apologize to both my girls, the one that can hear my voice and the one that can't. I try and remind myself that not only do words matter, but how we say them, and how loudly we say them can matter just as much. Sometimes, even if people can't hear us, the words are worth saying anyway.
Observations: I wish, when initially making this appointment, I had asked what kind of tests they would be running and what we could do to help make them go more smoothly. Had I known it was better she be asleep, I would have tried from this initial visit. I also would have brought more than a fruit snack and a favorite stuffed animal and water bottle if I'd known they didn't see kids often so there wasn't much for Tiny to do or look at. I knew generalities, but not specifics, and I learned since this appointment to ask more initial questions to save ourselves rescheduling and frustration.
Following the "Mommy Instincts"
So after the doctors visit I looked into the early intervention in our area. It's run by the college and I knew people that had taken their kids there. I'd gotten mixed reviews from parents. Some said it was great for their child, others said their child screamed and wouldn't calm down and hated it. Some loved the teachers, others felt like they didn't listen to their concerns. So then I got mixed feelings about it.
It was also the end of October/beginning of November and their next session or semester didn't start until January, and while they probably would have started the process of getting us enrolled, the Holiday's were really pulling at my attention strings. I love Halloween and Thanksgiving and Christmas are big family times.
So, we just kept treating Tiny like she could hear us, but more and more I realized I didn't want to take her in to speech therapy if she couldn't hear what was going on. How could speech therapy help my child if she couldn't hear?
So I decided to get another hearing test done. Tiny was a home birth, it was hard and amazing and also considered "uneventful", except you know, the whole birthing a baby part. She was on time and healthy. At the time she was born my midwife didn't do hearing screenings, but I learned from a friend who had her baby after me that she did them now and since we had birthed with her, she would do it for free.
I admit, even though I loved her, I was terribly scared to call and set up the appointment. What if all my fears were true? What if the test wasn't conclusive? It took me until the middle of December to drum up enough courage and then busy schedules and holidays took more time until we could get an appointment.
Then, one early morning in January when the girls were first up and the hubs had just gotten to bed after his night shift, she texted me, "I'm coming into town, I have my kit with me, can I just swing by and we can do the test?"
I immediately texted back "That would be great! Thanks so much!"
Twenty minutes later there was a quiet knock on my door and I let her in. She got her machine out and tested it to make sure it was working properly. Then we got Tiny on my lap and distracted by watching a movie on the TV so she'd leave the probes in her ears.
She pushed some buttons and we all stayed quiet, I tried not to watch the little screens as she "hummed" and decided to check her machine again. Then she ran the test again.
I could feel my panic rising as she took the probes and started to coil the tubes. "I'm so sorry, I'm not getting a reading," I held my breath, "in either ear."
I pursed my lips, and held Tiny a little closer while I nodded and asked, "What does that mean?"
She shook her head, "I can't say for sure, but I would get her into an audiologist immediately. I'd also try and make noises behind her, turn on the vacuum or loud music right behind her and and see if you can get any response in the mean time. I'm so sorry."
She gave me the number to one she recommended in town and a hug and then had to be off to her next appointment.
I sat back on the couch, silently watching Tiny watch Elmo as tears threatened to slip down my face. Bug wanted breakfast and we had things planned for the day, so I needed to hold it together.
I did cry a little over the scrambled eggs and cereal I got my girls and then I went into my office and forced myself to work on a design project I was mocking up for someone. Every few seconds my thoughts would turn to the worries, and every few minutes I would look at her and wonder. Two hours of this, and I'd gotten little done. I wanted to wake my husband, but I didn't. He'd gotten to bed late, had mentioned it had been a rough night at his job, and he had work again tonight. Besides, one test only told us she couldn't hear, not what had caused it or if it was reversible, right? It still took everything in my power not to go and wake him up.
I did finally try and startle her. I quietly got the vacuum and plugged it in and set it up right behind her. She didn't notice. We have a vacuum you can turn on and it is loud, but it doesn't rumble and the brushes don't move until you flip another switch. So I did the first, nothing. My heart sank. So I turned on the second switch and tipped the vacuum so the brush would activate and vibrate the floor. She jumped. More heart sinking and I hurried and put it away and ran back into my office panicked.
I look back and maybe I ought to have woken my husband at this point, but I called my mom and told her what had happened, and I cried, a lot, with my office door closed, gushing all my fears and worries. "I just had to tell someone. I feel like I'm going crazy and Josh needs his sleep." She's a mom, so she could understand. She listened, tried to help me gain some calm, and said she'd pray for us and told me to call and make an appointment.
I pulled it together, called and left a message when there was no answer, then the girls and I went and ran the errands that needed doing for the day. By the time we got back my husband was up and I couldn't hold it together any longer. The minute I started crying, he knew something was up. I told him what the midwife had said, that I'd already called to set up and appointment and maybe it was nothing.
He said something my mom said, "Well, look at it this way, if she can't hear at least we can take comfort in the fact that she wasn't just ignoring us this whole time." It was a small comfort, but I knew what he meant.
When the weekend was over, I got a call back from the Audiologist. His office was actually a satellite office in our town and he was only there Tuesdays and Thursdays, we couldn't get an appointment for another few weeks, almost a month.
So now there was more waiting, and only a little relief from the nagging in my head. I had one answer, that only served to open up a million more.
I'm not sure I'll ever be able to forgive myself for ignoring my instincts, denying my doubts about what family and friends were saying, or even our well meaning doctor, for so long. I don't know if I'll ever be able to let go of the guilt of "what might have been" if I'd just listened to myself at the start, but I hope someday Tiny will be able to.
((At the end of a lot of my subsequent posts I plan to put things we should have taken note of sooner or asked about at a specific time or appointment, instead of waiting. Hopefully these Observations might help someone else.
Observations: One clue we should have picked up on, but chose to ignore, was that she would push the volume buttons way up high on the TV, but then would never cared if we put the MUTE on. At first we just figured she liked the pictures more than the sounds or simply didn't care because we kept the TV pretty quite when there was something on. We also should have noticed that when I first started to worry, she rarely startled, and after this point, unless you touched her or she could feel you coming or you jumped out at her and she could see you, she didn't really startle at all. She liked to stomp almost anytime we were walking. We figure it was because she enjoyed the feeling or could feel the floor of our rental vibrate. She tended to like toys that lit up or moved, but didn't really care about the baby piano that just made noise. She'd push on it, but when it didn't do anything, she lost interest pretty fast. Some of these things can be behavior things, but some of them can be signs. If you're worried, don't wait, make an appointment with and Audiologist.))
It was also the end of October/beginning of November and their next session or semester didn't start until January, and while they probably would have started the process of getting us enrolled, the Holiday's were really pulling at my attention strings. I love Halloween and Thanksgiving and Christmas are big family times.
So, we just kept treating Tiny like she could hear us, but more and more I realized I didn't want to take her in to speech therapy if she couldn't hear what was going on. How could speech therapy help my child if she couldn't hear?
So I decided to get another hearing test done. Tiny was a home birth, it was hard and amazing and also considered "uneventful", except you know, the whole birthing a baby part. She was on time and healthy. At the time she was born my midwife didn't do hearing screenings, but I learned from a friend who had her baby after me that she did them now and since we had birthed with her, she would do it for free.
I admit, even though I loved her, I was terribly scared to call and set up the appointment. What if all my fears were true? What if the test wasn't conclusive? It took me until the middle of December to drum up enough courage and then busy schedules and holidays took more time until we could get an appointment.
Then, one early morning in January when the girls were first up and the hubs had just gotten to bed after his night shift, she texted me, "I'm coming into town, I have my kit with me, can I just swing by and we can do the test?"
I immediately texted back "That would be great! Thanks so much!"
Twenty minutes later there was a quiet knock on my door and I let her in. She got her machine out and tested it to make sure it was working properly. Then we got Tiny on my lap and distracted by watching a movie on the TV so she'd leave the probes in her ears.
She pushed some buttons and we all stayed quiet, I tried not to watch the little screens as she "hummed" and decided to check her machine again. Then she ran the test again.
I could feel my panic rising as she took the probes and started to coil the tubes. "I'm so sorry, I'm not getting a reading," I held my breath, "in either ear."
I pursed my lips, and held Tiny a little closer while I nodded and asked, "What does that mean?"
She shook her head, "I can't say for sure, but I would get her into an audiologist immediately. I'd also try and make noises behind her, turn on the vacuum or loud music right behind her and and see if you can get any response in the mean time. I'm so sorry."
She gave me the number to one she recommended in town and a hug and then had to be off to her next appointment.
I sat back on the couch, silently watching Tiny watch Elmo as tears threatened to slip down my face. Bug wanted breakfast and we had things planned for the day, so I needed to hold it together.
I did cry a little over the scrambled eggs and cereal I got my girls and then I went into my office and forced myself to work on a design project I was mocking up for someone. Every few seconds my thoughts would turn to the worries, and every few minutes I would look at her and wonder. Two hours of this, and I'd gotten little done. I wanted to wake my husband, but I didn't. He'd gotten to bed late, had mentioned it had been a rough night at his job, and he had work again tonight. Besides, one test only told us she couldn't hear, not what had caused it or if it was reversible, right? It still took everything in my power not to go and wake him up.
I did finally try and startle her. I quietly got the vacuum and plugged it in and set it up right behind her. She didn't notice. We have a vacuum you can turn on and it is loud, but it doesn't rumble and the brushes don't move until you flip another switch. So I did the first, nothing. My heart sank. So I turned on the second switch and tipped the vacuum so the brush would activate and vibrate the floor. She jumped. More heart sinking and I hurried and put it away and ran back into my office panicked.
I look back and maybe I ought to have woken my husband at this point, but I called my mom and told her what had happened, and I cried, a lot, with my office door closed, gushing all my fears and worries. "I just had to tell someone. I feel like I'm going crazy and Josh needs his sleep." She's a mom, so she could understand. She listened, tried to help me gain some calm, and said she'd pray for us and told me to call and make an appointment.
I pulled it together, called and left a message when there was no answer, then the girls and I went and ran the errands that needed doing for the day. By the time we got back my husband was up and I couldn't hold it together any longer. The minute I started crying, he knew something was up. I told him what the midwife had said, that I'd already called to set up and appointment and maybe it was nothing.
He said something my mom said, "Well, look at it this way, if she can't hear at least we can take comfort in the fact that she wasn't just ignoring us this whole time." It was a small comfort, but I knew what he meant.
When the weekend was over, I got a call back from the Audiologist. His office was actually a satellite office in our town and he was only there Tuesdays and Thursdays, we couldn't get an appointment for another few weeks, almost a month.
So now there was more waiting, and only a little relief from the nagging in my head. I had one answer, that only served to open up a million more.
I'm not sure I'll ever be able to forgive myself for ignoring my instincts, denying my doubts about what family and friends were saying, or even our well meaning doctor, for so long. I don't know if I'll ever be able to let go of the guilt of "what might have been" if I'd just listened to myself at the start, but I hope someday Tiny will be able to.
((At the end of a lot of my subsequent posts I plan to put things we should have taken note of sooner or asked about at a specific time or appointment, instead of waiting. Hopefully these Observations might help someone else.
Observations: One clue we should have picked up on, but chose to ignore, was that she would push the volume buttons way up high on the TV, but then would never cared if we put the MUTE on. At first we just figured she liked the pictures more than the sounds or simply didn't care because we kept the TV pretty quite when there was something on. We also should have noticed that when I first started to worry, she rarely startled, and after this point, unless you touched her or she could feel you coming or you jumped out at her and she could see you, she didn't really startle at all. She liked to stomp almost anytime we were walking. We figure it was because she enjoyed the feeling or could feel the floor of our rental vibrate. She tended to like toys that lit up or moved, but didn't really care about the baby piano that just made noise. She'd push on it, but when it didn't do anything, she lost interest pretty fast. Some of these things can be behavior things, but some of them can be signs. If you're worried, don't wait, make an appointment with and Audiologist.))
Monday, January 26, 2015
The first step - The Doctor's visit.
We have this funny spinning pie chart thing for the developmental stages
on our fridge I got while I was pregnant with Tiny. It had "typical milestones" and also a section letting you know that some kids develop faster and might be doing such and such and some kids were slower to do things and that was okay to.
I would walk by it almost daily and fix the part that spins to be on the wedge of Tiny's age because Bug liked to sit and spin it. Every time I would walk by it in the first months, I'd notice where she was right on track and where she was a little slower. First I worried about crawling and walking, because she did those a little later, but then things seemed to be on track for a wedge or two. Then I started to notice that while she was right on track with the physical milestones, she was slipping farther and farther behind with verbal skills.
So, around about the time Tiny turned 2, I turned the wedge to see where she should be at and my heart sank. She did not have even close to the number of words she was supposed to have by her age, she didn't even really have all the sounds and words from the wedge before it.
Not long after this realization, I made an appointment with the pediatrician.
When I called to make the appointment I was informed our pediatrician had moved and was asked if I'd like to see the recommended pediatrician instead. I really liked the doctors in the office I had seen myself so I said sure.
The day of the appointment came and I loaded my two girls up, let them play with the toys in the office with a cringe, honestly wondering what other germs we might be picking up from them, and filled out the forms. We waited, were taken back to get the pre-evaluation by the nurse so she could sum up my concerns to the new doctor and we waited some more, my girls getting more restless by the minute and me more nervous.
I kept wondering if I should even really be here, or if this "new guy" was going to think I was over reacting, that everything was fine. Another part of me was quietly sure he was going to deliver bad news.
It turns out I knew the new doctor, Dr. P, or of him, since I taught his son in church. He was often on call, so I really only knew his name and face. He came in, reviewed the chart, shared pleasantries, asked a few of the standard first visit questions and then asked me what my concerns were. I managed not to be irritated that I had just told the nurse and while I talked, he started to check Tiny out while she squirmed on my lap.
The conversation went something like this:
Dr. P is checking her heart, looking in her ears etc and nodding as he listens to me spill my guts.
"Well, she isn't talking... really. I'm just concerned. Her sister was a really big jabber box, and I've tried really hard not to compare them, because I know you're not supposed to but I just feel like there is something going on. People in our family said not to worry because we have a history of late talking on both sides, but both of those were boys and I know boys tend to talk later. I've also tried to not let her sister talk for her, because she does quite a bit, so I'm concerned it's a habit of not talking because she's used to having her sister do it. She's also really sassy, and a big tease so I've wondered if it's just an attitude thing, because if we shout her name or clap loud she'll turn so I'm not sure it's her ears but.... I think it might be her ears. We do have a nephew who had ear infections so bad his eardrums burst, but his parents didn't know because he was older but never complained. He seemed to have some of the same things with ignoring his parents so they took him in and it turned out he had extra skin grow over top of his eardrums so he had to have them burst and the skin removed, but he's been fine since and I don't know if that's genetic, but like I said, I'm just worried there's something wrong with her ears."
More nodding as my keys fall out of my lap and Tiny goes for them.
"Well her eardrums are clearly visible, there isn't a lot of buildup in there, and they don't look inflamed or damaged in anyway. Has she had a lot of ear infections that you'd be concerned about that?"
Tiny making a lot of noise while shaking the keys around and smacking them on the leg of the metal chair and me getting out a snack for her and Bug, who is tugging at my arm telling me she's hungry while I'm trying to keep my thoughts in order.
"Not that we know of. She had one that was treated here by Dr. (Old Pediatrician) with antibiotics when she was between three and six months, but other than that, just usual kid stuff a runny nose occasionally and she had croup a couple of times, but she's never really tugged at her ears or seemed to be bothered by them."
Dr.P nods some more and tries a few things.
"Well, I can't say for sure, but her ears look clear. There isn't any scar tissue I can see, but I can't test her ears here to see how they are working or for fluid behind her eardrums, but from all you've told me, it sounds like an attitude problem to me. I recommend we get her into early intervention and speech therapy."
Now I'm the one nodding, trying to feel relieved by the news as he gets a card out with the early intervention people's number on it while he tells me about how great they are and the success other patients have had over there. I take the card and thank him for seeing us.
I let his opinion reassure me, he knows what he's talking about, I'm just a worry wort! Thank goodness!
But then even as I'm leaving and loading my kids up, I can't completely shake the feeling that he's wrong. I tell myself it's just me, and even now I feel regret at letting myself be lulled into a false sense of ease for a few more months, even if they might not have made a difference.
I do not blame Dr. P for all that came after this. He is still a really nice doctor and we've seen him since, but Doctors are busy and even if they see you regularly, they aren't going to know or remember everything from visit to visit. I believe he honestly felt there was nothing wrong with my Daughter, but I wish when he told me he couldn't run further tests I would have requested he refer us to someone who could. I will be honest and say I know a part of me wanted nothing to be wrong, to just be the overprotective and worry wort mom and for him to be right.
He just wasn't.
I wish I wouldn't have had to learn these lessons with my child, but I have learned that I am the only one that can, and will, and has to advocate for more for her. She can't advocate for herself at this young age, and in general, the Doctors aren't going to. If you feel they've missed something, ask questions, explain your concerns again, and do not be afraid to ask for referrals. I've learned to take questions in with me, to ask them. Then to ask at the end of every appointment if there is anything else I should be looking into and researching, or if there is anyone that they can refer us to that could answer any lingering questions. If the doctor you are seeing doesn't help, get a second opinion, or a third if you need to. You know your child, you have been given instincts.
I was with Tiny almost every minute of every day. I knew her. I knew what I was feeling and even when I tried to ignore it as an attitude problem for awhile longer, I knew it wasn't. I knew what I needed to do to have real peace of mind, but I was oh so scared.
I would walk by it almost daily and fix the part that spins to be on the wedge of Tiny's age because Bug liked to sit and spin it. Every time I would walk by it in the first months, I'd notice where she was right on track and where she was a little slower. First I worried about crawling and walking, because she did those a little later, but then things seemed to be on track for a wedge or two. Then I started to notice that while she was right on track with the physical milestones, she was slipping farther and farther behind with verbal skills.
So, around about the time Tiny turned 2, I turned the wedge to see where she should be at and my heart sank. She did not have even close to the number of words she was supposed to have by her age, she didn't even really have all the sounds and words from the wedge before it.
Not long after this realization, I made an appointment with the pediatrician.
When I called to make the appointment I was informed our pediatrician had moved and was asked if I'd like to see the recommended pediatrician instead. I really liked the doctors in the office I had seen myself so I said sure.
The day of the appointment came and I loaded my two girls up, let them play with the toys in the office with a cringe, honestly wondering what other germs we might be picking up from them, and filled out the forms. We waited, were taken back to get the pre-evaluation by the nurse so she could sum up my concerns to the new doctor and we waited some more, my girls getting more restless by the minute and me more nervous.
I kept wondering if I should even really be here, or if this "new guy" was going to think I was over reacting, that everything was fine. Another part of me was quietly sure he was going to deliver bad news.
It turns out I knew the new doctor, Dr. P, or of him, since I taught his son in church. He was often on call, so I really only knew his name and face. He came in, reviewed the chart, shared pleasantries, asked a few of the standard first visit questions and then asked me what my concerns were. I managed not to be irritated that I had just told the nurse and while I talked, he started to check Tiny out while she squirmed on my lap.
The conversation went something like this:
Dr. P is checking her heart, looking in her ears etc and nodding as he listens to me spill my guts.
"Well, she isn't talking... really. I'm just concerned. Her sister was a really big jabber box, and I've tried really hard not to compare them, because I know you're not supposed to but I just feel like there is something going on. People in our family said not to worry because we have a history of late talking on both sides, but both of those were boys and I know boys tend to talk later. I've also tried to not let her sister talk for her, because she does quite a bit, so I'm concerned it's a habit of not talking because she's used to having her sister do it. She's also really sassy, and a big tease so I've wondered if it's just an attitude thing, because if we shout her name or clap loud she'll turn so I'm not sure it's her ears but.... I think it might be her ears. We do have a nephew who had ear infections so bad his eardrums burst, but his parents didn't know because he was older but never complained. He seemed to have some of the same things with ignoring his parents so they took him in and it turned out he had extra skin grow over top of his eardrums so he had to have them burst and the skin removed, but he's been fine since and I don't know if that's genetic, but like I said, I'm just worried there's something wrong with her ears."
More nodding as my keys fall out of my lap and Tiny goes for them.
"Well her eardrums are clearly visible, there isn't a lot of buildup in there, and they don't look inflamed or damaged in anyway. Has she had a lot of ear infections that you'd be concerned about that?"
Tiny making a lot of noise while shaking the keys around and smacking them on the leg of the metal chair and me getting out a snack for her and Bug, who is tugging at my arm telling me she's hungry while I'm trying to keep my thoughts in order.
"Not that we know of. She had one that was treated here by Dr. (Old Pediatrician) with antibiotics when she was between three and six months, but other than that, just usual kid stuff a runny nose occasionally and she had croup a couple of times, but she's never really tugged at her ears or seemed to be bothered by them."
Dr.P nods some more and tries a few things.
"Well, I can't say for sure, but her ears look clear. There isn't any scar tissue I can see, but I can't test her ears here to see how they are working or for fluid behind her eardrums, but from all you've told me, it sounds like an attitude problem to me. I recommend we get her into early intervention and speech therapy."
Now I'm the one nodding, trying to feel relieved by the news as he gets a card out with the early intervention people's number on it while he tells me about how great they are and the success other patients have had over there. I take the card and thank him for seeing us.
I let his opinion reassure me, he knows what he's talking about, I'm just a worry wort! Thank goodness!
But then even as I'm leaving and loading my kids up, I can't completely shake the feeling that he's wrong. I tell myself it's just me, and even now I feel regret at letting myself be lulled into a false sense of ease for a few more months, even if they might not have made a difference.
I do not blame Dr. P for all that came after this. He is still a really nice doctor and we've seen him since, but Doctors are busy and even if they see you regularly, they aren't going to know or remember everything from visit to visit. I believe he honestly felt there was nothing wrong with my Daughter, but I wish when he told me he couldn't run further tests I would have requested he refer us to someone who could. I will be honest and say I know a part of me wanted nothing to be wrong, to just be the overprotective and worry wort mom and for him to be right.
He just wasn't.
I wish I wouldn't have had to learn these lessons with my child, but I have learned that I am the only one that can, and will, and has to advocate for more for her. She can't advocate for herself at this young age, and in general, the Doctors aren't going to. If you feel they've missed something, ask questions, explain your concerns again, and do not be afraid to ask for referrals. I've learned to take questions in with me, to ask them. Then to ask at the end of every appointment if there is anything else I should be looking into and researching, or if there is anyone that they can refer us to that could answer any lingering questions. If the doctor you are seeing doesn't help, get a second opinion, or a third if you need to. You know your child, you have been given instincts.
I was with Tiny almost every minute of every day. I knew her. I knew what I was feeling and even when I tried to ignore it as an attitude problem for awhile longer, I knew it wasn't. I knew what I needed to do to have real peace of mind, but I was oh so scared.
Sunday, January 25, 2015
An Introduction ((And a preface))
It took me a long time to come to the decision to share our journey, but in the last few weeks I've felt a really strong need to unburden myself through writing. I know it's for me, but part of me hopes that if someone stumbles across this blog, or is referred to it during a similar journey, that they can find answers or comfort or just a feeling of camaraderie.
A little background. I have two beautiful daughters and a easy going husband who I love and who make my life full with adventures. I'll refer to my girls as Bug(5) and Tiny(3) as those are their nicknames around here. Tiny is the main reason I'm writing this blog, as at the age of 2 1/4 she was diagnosed with severe to profound hearing loss.
I'll give you a little background.
Tiny wasn't a surprise baby, but she was a difficult pregnancy for me. I was sick 24 hours a day for about 6 months, and on top of it, her dad was gearing up to deploy and then did, just as I started feeling better. She was actually born while he was gone and he saw her for the first time via Skype and he met her for the first time at 3 days shy of 2 months of age. She wrapped him up just as thoroughly as her big sister before her.
She was a full term baby with no complications and and "uneventful birth." She passed her initial Otoacoustic Emissions (OAE) test- which is the hearing screening for newborns, and grew and developed normally, though on the petite side. She wasn't super interested in crawling and walking since she loved to be held, and still does to this day. Becoming mobile was motivated by realizing she could get to the things she wanted to climb, which she did on the highest places she could get while my back was turned.
We realized pretty quickly that she was also a lot quieter than her big sister when it came to talking, though she did babble and would frequently force you to pay attention to her so she could shake a finger at you and make faces or put her hands on her hips or just make us watch her pretend to talk on the phone. She's all sorts of sass with the right amount of sugar most of the time.
When she did start to say things at around a year they were always surprising, and rarely repeated. She told me "Shoe's on" and her Dad "Go fishin" one time and one time only. She would say "I didit" on occasion, Ma and Da frequently, and make other sounds or random words frequently, but it was like pulling teeth to get her to say things.
We had done some baby sign with her, but she would shrug us off most of the time and point and throw a fit until we understood what she wanted.
At 16 months, I started to really be concerned and finally started to voice my concern to a few family members. "She won't turn unless I get loud. She doesn't really talk. I can clap my hands and she only looks at me and turns away most of the time."
The answers I got back were things like, "I wouldn't worry too much, she's a second child and Bug is a big personality and talks for her all the time, make her talk and tell her sister not to talk for her and she will." "Oh, don't worry about that, we have a history of late talking in our family."(From both sides there were brothers that didn't talk until a later age.) "She's just sassy and likes to ignore you because she can see she's getting a reaction out of you. Don't react and she'll learn to listen." And many other things that were meant to be reassuring, but only left me doubting my sanity about it all.
I tried to listen to all of the "don't worries" and the "she's fine's" but something kept nagging me in my gut, telling me there was something wrong. Had she been sick and we didn't know? Had my Tiny been hurt because I had been ignorant of signs I should have looked for? Had she bumped her head? Had I done something to her unintentionally hurt her while we were playing? Had she eaten something that had somehow messed up her brain? Was I not trying hard enough?
At 18 months I noticed she had pretty much stopped saying new things and just before her second birthday I finally decided I was done listening to other people, no matter how well intentioned, and have her go in and be checked out and that is when this journey really began.
((Preface: Some of you may be asking yourselves, Why didn't you voice your concerns to your pediatrician? At the time, the pediatrician we had started with had left the doctors office we were used to going to and I admit, I didn't look into who replaced him right away. We also didn't have great insurance at this point and my husband was still working on a degree and didn't have a great job so we couldn't afford doctor visits when for all intents and purposes our daughter appeared healthy.We also try to deal with things naturally at home if we can, and in general we are healthy folks who only go to the doctor when we really feel the need. This is our choice and I recognize it is not the choice a lot of people make. I hope you can respect that people have different ways of going about things. I respect your choice to do what you want with your kids and hope you can do the same. As it turns out, going to the pediatrician didn't really help us in the grand scheme of things, but I'll talk about that more in my next post.))
A little background. I have two beautiful daughters and a easy going husband who I love and who make my life full with adventures. I'll refer to my girls as Bug(5) and Tiny(3) as those are their nicknames around here. Tiny is the main reason I'm writing this blog, as at the age of 2 1/4 she was diagnosed with severe to profound hearing loss.
I'll give you a little background.
Tiny wasn't a surprise baby, but she was a difficult pregnancy for me. I was sick 24 hours a day for about 6 months, and on top of it, her dad was gearing up to deploy and then did, just as I started feeling better. She was actually born while he was gone and he saw her for the first time via Skype and he met her for the first time at 3 days shy of 2 months of age. She wrapped him up just as thoroughly as her big sister before her.
She was a full term baby with no complications and and "uneventful birth." She passed her initial Otoacoustic Emissions (OAE) test- which is the hearing screening for newborns, and grew and developed normally, though on the petite side. She wasn't super interested in crawling and walking since she loved to be held, and still does to this day. Becoming mobile was motivated by realizing she could get to the things she wanted to climb, which she did on the highest places she could get while my back was turned.
We realized pretty quickly that she was also a lot quieter than her big sister when it came to talking, though she did babble and would frequently force you to pay attention to her so she could shake a finger at you and make faces or put her hands on her hips or just make us watch her pretend to talk on the phone. She's all sorts of sass with the right amount of sugar most of the time.
When she did start to say things at around a year they were always surprising, and rarely repeated. She told me "Shoe's on" and her Dad "Go fishin" one time and one time only. She would say "I didit" on occasion, Ma and Da frequently, and make other sounds or random words frequently, but it was like pulling teeth to get her to say things.
We had done some baby sign with her, but she would shrug us off most of the time and point and throw a fit until we understood what she wanted.
At 16 months, I started to really be concerned and finally started to voice my concern to a few family members. "She won't turn unless I get loud. She doesn't really talk. I can clap my hands and she only looks at me and turns away most of the time."
The answers I got back were things like, "I wouldn't worry too much, she's a second child and Bug is a big personality and talks for her all the time, make her talk and tell her sister not to talk for her and she will." "Oh, don't worry about that, we have a history of late talking in our family."(From both sides there were brothers that didn't talk until a later age.) "She's just sassy and likes to ignore you because she can see she's getting a reaction out of you. Don't react and she'll learn to listen." And many other things that were meant to be reassuring, but only left me doubting my sanity about it all.
I tried to listen to all of the "don't worries" and the "she's fine's" but something kept nagging me in my gut, telling me there was something wrong. Had she been sick and we didn't know? Had my Tiny been hurt because I had been ignorant of signs I should have looked for? Had she bumped her head? Had I done something to her unintentionally hurt her while we were playing? Had she eaten something that had somehow messed up her brain? Was I not trying hard enough?
At 18 months I noticed she had pretty much stopped saying new things and just before her second birthday I finally decided I was done listening to other people, no matter how well intentioned, and have her go in and be checked out and that is when this journey really began.
((Preface: Some of you may be asking yourselves, Why didn't you voice your concerns to your pediatrician? At the time, the pediatrician we had started with had left the doctors office we were used to going to and I admit, I didn't look into who replaced him right away. We also didn't have great insurance at this point and my husband was still working on a degree and didn't have a great job so we couldn't afford doctor visits when for all intents and purposes our daughter appeared healthy.We also try to deal with things naturally at home if we can, and in general we are healthy folks who only go to the doctor when we really feel the need. This is our choice and I recognize it is not the choice a lot of people make. I hope you can respect that people have different ways of going about things. I respect your choice to do what you want with your kids and hope you can do the same. As it turns out, going to the pediatrician didn't really help us in the grand scheme of things, but I'll talk about that more in my next post.))
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