Our paradigm shift happened five years ago. Our beautiful little Ella was very slow to speak, not uttering more than "ma" at nearly three years old. She seemed slow to pick up on things, and we often wondered whether it was just her adjusting to life in a family. Things culminated one fall when she started 'blinking' and losing a second or two of time. She was diagnosed with epilepsy on the same day that a psychologist told us she had a low IQ and ADD. We, psychologist included, ignored his findings with our new knowledge of her brain activity. Who could possibly take any test while having seizures every few minutes?
That bout of visits with neurologists and psychologists gave us a little glimmer of her uncertain future. We first heard the words 'mental retardation' there, in relation to our daughter. Gone were visions of her in college, leaving our home to start one of her own. We joked about it at first. Around here, laughter seems to be the way we deal with things. I would say, "She's going to be with us forever, in our basement with 17 cats. She will love every minute of it."
Neither of us really, truly thought we were being serious.
I prayed for years that the Lord would "restore the years the locust had eaten" for Ella. As He began to reveal more of her to us; my prayers began to be "let us love her the way she is." He answered those prayers abundantly.
In the fall Ella got 'lost' at church. It's a small church, with only three hallways. She left her class and thought church was over so she waited in the foyer for me. She sat there and watched as the foyer full of people slowly emptied. She sat there thinking she had been left behind, all the while hearing the choir sing from the sanctuary. I finally found her, I guess she had just asked a stranger visiting our church where she could find her mommy. That scared me to death. It also made us think about her future in more realistic ways.
After speaking with our wonderful neurologist, we found ourselves in the lobby of a pediatric psychologist. I had spent the week filling out paperwork as both parent and teacher. I dug through our disorganized file cabinet and found IQ tests and neurologist reports for the last five years. We were both nervous about the next hour. I feared that they would scoff and tell us to send her to a public school where she could get services that she needed. I had a lot of fears that afternoon. Seth was my support, but from the beginning said that I would need to be the one talking. The two psychologists were young and friendly. I suppose their days are filled with anxious parents hoping that they have all of the answers. We were just two more worried faces.
Our interview went on for over an hour. I soon got to understand these ladies pretty well. The senior psychologist had the 'encouraging' habit of finishing our sentences. She had somehow picked up the amazing mind reading skill. We were peppered with questions starting at the beginning of Ella's adoption and running through the past seven years.
After being 'on' for so long I started to fade. My exhaustion hit me when one doctor asked how Ella was with puzzles and I just stared at her. Glancing from one corner of the room to another I nearly panicked. A little help from the psychic would have been appreciated but she, too, just stared at me with a smile on her face. My mind was a mess of frantic thoughts..."How is she with puzzles, sheesh. I'm a horrible mom! I can't think remember puzzles, do we do puzzles? Does she like puzzles? When did she do a puzzle last? Like 3 years ago? That's a terrible answer, I can't say that!"
I think I finally murmured, "She doesn't like puzzles too much." We quickly moved on and shortly after the appointment ended. They probably smelled my brain frying.
Seth went alone with Ella for the two sessions of three hour testing. Ella thought it was a fun treat to have snacks and play computer games with these doctors. She also fell asleep in the car on the way home and had double vision the rest of the day. Seth said that the last day the doctors escorted Ella out to the lobby and had a look of pity on their faces. He couldn't tell if it was a "pity you think this perfectly normal kid has delays" look or a "pity you will be met by the child protective services at the elevator" look or maybe even a "pity you have no idea what you are dealing with" look.
I went to the final meeting alone. Seth called in and joined us via speaker phone. All five kiddos were drawing pictures and doing mazes about the Myecean Greeks while he listened to our meeting from a quiet bedroom. Pacing back and forth, I'm sure.
The ladies looked at each other and one flushed bright red before she even began. They slid a stapled stack of papers toward me that had Ella's identifying information along the top. I felt myself begin to sweat and wondered why I had so many layers on. The senior psychologist began with, "This is the bell curve of normal IQs. Here at the bottom is 90 and the top is 110. Ella's right about here." She slid her pen nearly off the paper to the far left. Too far below what we expected, much farther than the previous test. Way down to 65.
I let a wheeze escape.
"Ummm, so what does that mean?" With the psychic doctor's help, we asked a few questions attempting to understand what this looks like as a child and an adult. They were very encouraging and supportive of Ella being homeschooled. They said she was thriving and gave me pages of resources to help in her educational journey.
Over the next hour I felt myself curling up into a ball. As much as I could without totally freaking these two ladies out. At one point I looked down and realized I had both arms wrapped completely around my torso and my legs crossed twice. I was turning into a pretzel.
She probably will never leave us. She will never drive a car or live on her own. She will need our help for the rest of our lives. We have already talked about how to plan so she will be taken care of when we are gone. She indeed may live in the basement with 17 cats. She probably will love it.
Sometimes.
She talks about being a mommy one day. She wants to get married. She wants to be a vet or a plumber or a dog when she grows up. She's beautiful and easily confused. Her best friends are four and five year old kids. She can read, but doesn't understand what she's reading. She can multiply, but doesn't understand why she's doing it. She wants to play with the girls her age, but she can't understand what they are doing and resorts to being goofy to make them laugh.
These test results should not have been a surprise to either of us. We've watched our daughter fall farther behind her peers. I've held her back in school and dropped curricula mid-year because I was losing her. I've tailored programs and done funky multi-sensory things trying to help her learn. Her little brother and sister have long since passed her in school, not that she knows it. But we did, and we should have expected her tests to be low.
That day I thanked the doctors and left their office. When I sat in the car I exhaled for about 5 minutes. My pretzel limbs loosened and I felt okay. I felt okay because nothing has changed in Ella. She's still the same Ella that she always has been. Our lovable, funny, God given, Ella.
Showing posts with label Ella's epilepsy. Show all posts
Showing posts with label Ella's epilepsy. Show all posts
March 26, 2012
March 12, 2010
Unexpected Hope
I'm curled up on a sofa in a hospital room. It's late and it feels oddly quiet for such a busy place. Ella lays in the hospital bed next to me. She's asleep though I can't imagine how she could be comfortable. Her head is covered in cords that run to a box next to her. Monitoring every little impulse coming from her brain. It seems that, despite our best efforts, we haven't been able to quiet those impulses.
Ella has epilepsy. Ella has seizures. We accept it.
This isn't something that we can conquer. This is something that we can manage. Or so I've been told. For the past year we have managed Ella's seizures. Ella's new neurologist was not pleased that she isn't completely seizure free. I guessed that she had about 10 a day. They are noticeable only if you are aware. A second or two and it's over. Her speech stops and eyes half close. It seems so minor until you imagine yourself doing that. Over and over again. Try learning to read. Or getting so close to understanding the math lesson and then...what did you say? Sorry, I blanked out for a second. Could you repeat that?
Maybe 3 times in 15 minutes. She's 'managing' them.
Until, this new neurologist gives us a glimmer of something better. So, we sat for 24 hours in a hospital room. I wondered many times if Ella really wasn't having many seizures. Next door a teenage girl wasn't allowed to be alone for fear she would fall to the floor without warning and injure herself. Our situation is so easy compared to that.
The next morning we read and do math. Anything that should trigger an 'episode' is encouraged. As Ella tries to sound out 'driver' from the book she's reading I see her eyes shudder and press the red alarm button. Alarms sound down the hall and two nurses run into the room. But, it's already over. I feel rather silly, hitting the emergency button when there isn't a real emergency. I feel like we've caused trouble and I've overestimated the number of seizures she's having. The nurses assure me that they want me to press the button so that the computer will mark the EEG. The video that has been recording since our arrival will be marked. I agree and find myself pressing that button 5 more times over the next few pages. I wonder how Ella can even follow the story with the activity in her brain being such a disruption.
Then the doctor arrives. He's seen seizures I didn't notice. All night while her brain is resting, electricity is bouncing around. It seems she's rarely without episodes. "And your last neurologist was okay with this?"
Maybe he was too busy when I told him at every appointment since her last EEG that she was still having seizures. Maybe I should have pressed him more when he said he was happy with her 'levels'. Maybe we should have researched other drugs more thoroughly.
Ella's started a new drug, something that's known specifically for her epileptic thumbprint.
We have high expectations for this new treatment, but for the next few weeks as drug levels build, we'll just manage. Now, I have hope that soon she will be able to read a book without a single interruption.
Ella has epilepsy. Ella has seizures. We accept it.
This isn't something that we can conquer. This is something that we can manage. Or so I've been told. For the past year we have managed Ella's seizures. Ella's new neurologist was not pleased that she isn't completely seizure free. I guessed that she had about 10 a day. They are noticeable only if you are aware. A second or two and it's over. Her speech stops and eyes half close. It seems so minor until you imagine yourself doing that. Over and over again. Try learning to read. Or getting so close to understanding the math lesson and then...what did you say? Sorry, I blanked out for a second. Could you repeat that?
Maybe 3 times in 15 minutes. She's 'managing' them.
Until, this new neurologist gives us a glimmer of something better. So, we sat for 24 hours in a hospital room. I wondered many times if Ella really wasn't having many seizures. Next door a teenage girl wasn't allowed to be alone for fear she would fall to the floor without warning and injure herself. Our situation is so easy compared to that.
The next morning we read and do math. Anything that should trigger an 'episode' is encouraged. As Ella tries to sound out 'driver' from the book she's reading I see her eyes shudder and press the red alarm button. Alarms sound down the hall and two nurses run into the room. But, it's already over. I feel rather silly, hitting the emergency button when there isn't a real emergency. I feel like we've caused trouble and I've overestimated the number of seizures she's having. The nurses assure me that they want me to press the button so that the computer will mark the EEG. The video that has been recording since our arrival will be marked. I agree and find myself pressing that button 5 more times over the next few pages. I wonder how Ella can even follow the story with the activity in her brain being such a disruption.
Then the doctor arrives. He's seen seizures I didn't notice. All night while her brain is resting, electricity is bouncing around. It seems she's rarely without episodes. "And your last neurologist was okay with this?"
Maybe he was too busy when I told him at every appointment since her last EEG that she was still having seizures. Maybe I should have pressed him more when he said he was happy with her 'levels'. Maybe we should have researched other drugs more thoroughly.
Ella's started a new drug, something that's known specifically for her epileptic thumbprint.
We have high expectations for this new treatment, but for the next few weeks as drug levels build, we'll just manage. Now, I have hope that soon she will be able to read a book without a single interruption.
August 21, 2009
Sheer Determination
I spent an afternoon coercing my mom to admit defeat in the potty training realm. I'm sure that the next administration will fund research to use dirty diapers to make clean fuel. Thus, keeping Sir Pudginess in diapers is actually doing an environmental service.
Second only to potty training is the Bike Riding Without Training Wheels Challenge. When my mother sees a grandchild on training wheels she takes it personally. No matter their age nor experience. I thought I had her convinced by saying, "Ella's neurologist said she CAN'T ride a bike without training wheels. She might have a seizure. And Sally just got that big bike, she doesn't even know how to stop yet."
No grandchild of hers will pedal with training wheels. I came outside one afternoon to be greeted by two girls careening down the driveway. Legs and arms akimbo, smashing into the gravel, and laughing the entire time. It took the three of them a week to master the balancing. Ella needed a mere afternoon to get the art of stopping and starting. Alas, Sally rides like a speed demon but is unable to stop herself. Her favored stopping method is aiming into the crowd of onlookers. They are softer than pavement.
I jest, but this is a feat for both girls. Ella's prosthetic and little hand are on her left side. She favors that side and leans to the right to pedal and steer. I used her epilepsy as an excuse to keep the training wheels on, but I really wanted to save her the heartache of crashing over and over again. Then being defeated because of her differences. I'm so glad I was wrong.
Second only to potty training is the Bike Riding Without Training Wheels Challenge. When my mother sees a grandchild on training wheels she takes it personally. No matter their age nor experience. I thought I had her convinced by saying, "Ella's neurologist said she CAN'T ride a bike without training wheels. She might have a seizure. And Sally just got that big bike, she doesn't even know how to stop yet."
No grandchild of hers will pedal with training wheels. I came outside one afternoon to be greeted by two girls careening down the driveway. Legs and arms akimbo, smashing into the gravel, and laughing the entire time. It took the three of them a week to master the balancing. Ella needed a mere afternoon to get the art of stopping and starting. Alas, Sally rides like a speed demon but is unable to stop herself. Her favored stopping method is aiming into the crowd of onlookers. They are softer than pavement.
I jest, but this is a feat for both girls. Ella's prosthetic and little hand are on her left side. She favors that side and leans to the right to pedal and steer. I used her epilepsy as an excuse to keep the training wheels on, but I really wanted to save her the heartache of crashing over and over again. Then being defeated because of her differences. I'm so glad I was wrong.
May 27, 2009
Ella and I just spent a harried four days with my dearest friends shuttling between Yale Medical School and my friend's house. I arranged the trip without realizing that Connecticut is indeed larger than my backyard and driving from one corner to another may require a few hours each way.
We were flown to Connecticut so that my little girl might take part in a study of children with absence epilepsy. The title is something like, "Are children with absence epilepsy really absent?" If I had to make an under-educated guess I would say that my child is absent pretty often. Especially if she isn't taking her drugs, getting at least 20 hours of sleep, and doing something engaging that she enjoys. All three of those planets are aligned once a year. Yeah, around here we deal with absent minded behavior on a regular basis. Going to Yale--on their dollar, visiting friends, and getting pictures of my daughter's brain WHILE she's having a seizure? Count me in.
Sadly, most of our visiting had to happen in the confines of my tiny rental car and the waiting area outside of the research MRI unit. For this, I apologize once again, girls. So, so sorry! We made the best of it and chatted up a storm. Most of the chatting probably one sided so that I could stay awake as I drove back and forth. I honestly thought that Ella would refuse to have the tests done. Previously we've had to completely knock her out for an MRI. That was a year and a half ago. She's older, wiser, and more easily bribed these days. They had to put an EEG cap on her to monitor her seizure activity, then put her into the MRI machine to 'photograph' her brain, and gave her a 'video game' to play during the whole thing. The idea is to get a picture of what is going on while she's seizing and trying to think at the same time. I thought she'd balk the first day, but she was a trooper and had two scans done.
It was a thrilling trip for her. She 'met' old friends and got to fly on a plane alone with Mommy. I'm such a fun travel buddy that I made her take a math test and do phonics work on our layovers. On the way home we realized that we didn't have gifts for the children who couldn't come. Traditionally, around here, if you make a trip--you return with gifts. I think that's taught by the three wise men. I should have just picked up a postcard at the grocery store, but I wasn't savvy enough. I was stuck buying Webkinz at the CNBC stand at the airport. Never has such an extravagant purchase been made on a trip. The usual fare is a book or some sort of crayola art product. Seth once forgot gifts and shelled out a dollar to each child with some quip about thinking they would enjoy buying their own souvenir at the Dollar Store. That worked. The webkinz ruled though, by far the best gift ever given and I imagine that the children will welcome my departure more often. Josiah stole the car Ella chose from the treasure chest at Yale, so he was placated also.
So, the peeling back of Ella's layers continues. It will be months before we get her results and possibly years before this study is complete. I'm pleased with every little tidbit that we can scrounge up that helps us to understand her.
We were flown to Connecticut so that my little girl might take part in a study of children with absence epilepsy. The title is something like, "Are children with absence epilepsy really absent?" If I had to make an under-educated guess I would say that my child is absent pretty often. Especially if she isn't taking her drugs, getting at least 20 hours of sleep, and doing something engaging that she enjoys. All three of those planets are aligned once a year. Yeah, around here we deal with absent minded behavior on a regular basis. Going to Yale--on their dollar, visiting friends, and getting pictures of my daughter's brain WHILE she's having a seizure? Count me in.
Sadly, most of our visiting had to happen in the confines of my tiny rental car and the waiting area outside of the research MRI unit. For this, I apologize once again, girls. So, so sorry! We made the best of it and chatted up a storm. Most of the chatting probably one sided so that I could stay awake as I drove back and forth. I honestly thought that Ella would refuse to have the tests done. Previously we've had to completely knock her out for an MRI. That was a year and a half ago. She's older, wiser, and more easily bribed these days. They had to put an EEG cap on her to monitor her seizure activity, then put her into the MRI machine to 'photograph' her brain, and gave her a 'video game' to play during the whole thing. The idea is to get a picture of what is going on while she's seizing and trying to think at the same time. I thought she'd balk the first day, but she was a trooper and had two scans done.
It was a thrilling trip for her. She 'met' old friends and got to fly on a plane alone with Mommy. I'm such a fun travel buddy that I made her take a math test and do phonics work on our layovers. On the way home we realized that we didn't have gifts for the children who couldn't come. Traditionally, around here, if you make a trip--you return with gifts. I think that's taught by the three wise men. I should have just picked up a postcard at the grocery store, but I wasn't savvy enough. I was stuck buying Webkinz at the CNBC stand at the airport. Never has such an extravagant purchase been made on a trip. The usual fare is a book or some sort of crayola art product. Seth once forgot gifts and shelled out a dollar to each child with some quip about thinking they would enjoy buying their own souvenir at the Dollar Store. That worked. The webkinz ruled though, by far the best gift ever given and I imagine that the children will welcome my departure more often. Josiah stole the car Ella chose from the treasure chest at Yale, so he was placated also.
So, the peeling back of Ella's layers continues. It will be months before we get her results and possibly years before this study is complete. I'm pleased with every little tidbit that we can scrounge up that helps us to understand her.
December 5, 2007
Encouragement
I have put off posting about this, unsure of how to handle it. I'll try to be short (yeah, right) and to the point. Ella is pretty delayed in all facets of learning. In an attempt to help her (and us) we visited a developmental pediatrician a few weeks ago. After describing some of the things that she was doing, he suggested IQ tests and an EEG. Back in September (when our van broke down), she started fluttering her eyelids and rolling her eyes around. It was that weekend that we were stranded, she was very stressed out, and we all figured it was just how she was handling the stress of...being without the van? When we got home the fluttering didn't stop, it was accompanied by her losing a few seconds of reality. Our pediatrician wasn't concerned about this, but wanted us to see this developmental pediatrician because of Ella's delays. When we described her symptoms and abilities he shocked us by saying that she may be having seizures and she may be mentally retarded.
Neither of these statements should have been shockers--Ella has febrile seizures and has had all sorts of tests run to figure that out. It's not a big deal, it's something she may grow out of, and we just pay close attention to medicating her while she's sick. It seemed strange to me that she would suddenly just start having seizures throughout the day, but I took her for an EEG. The results came back last week; they were abnormal, she is having seizures. Whoa.
Meanwhile, we were visiting a psychologist to see what's going on in Ella's head as far as development. Before he tested her, he spent an hour going over old tests and talking to Seth and I. He found a series of tests that the school system did several years ago. One of those tests generated an IQ score, the school system never told us about that test that they did. The results back then--Ella had an IQ of 71. Whoa.
It was a discouraging week to say the least. Monday morning we met with the psychologist again, this time prepared for the worst. Praise God he gave us good news, sort of. Ella's tests were low, but not because she is incapable of understanding the tests. She's unable to focus long enough to answer the questions (or in some cases even hear the questions). She's got inattentive type ADHD. Something we never would have thought about, because she is NOT hyperactive. As the doctor started talking about solutions to help her, Seth and I were seeing the light at the end of the tunnel. Then I blew it and mentioned her recent seizure diagnosis. Evidently, that causes a bit of a problem because most of the meds that treat ADHD can't be taken by people who have seizures.
Okay, we left the office a bit confused, hoping that a neurologist can help us get things straightened out. Last week, with the news of a referral not coming for a few months, I was in the middle of all of that. That was a little bit of relief for me, since I didn't know what was happening with Ella.
Yesterday, we heard that the family ahead of us in line accepted a referral of three siblings. That means we are next...
Neither of these statements should have been shockers--Ella has febrile seizures and has had all sorts of tests run to figure that out. It's not a big deal, it's something she may grow out of, and we just pay close attention to medicating her while she's sick. It seemed strange to me that she would suddenly just start having seizures throughout the day, but I took her for an EEG. The results came back last week; they were abnormal, she is having seizures. Whoa.
Meanwhile, we were visiting a psychologist to see what's going on in Ella's head as far as development. Before he tested her, he spent an hour going over old tests and talking to Seth and I. He found a series of tests that the school system did several years ago. One of those tests generated an IQ score, the school system never told us about that test that they did. The results back then--Ella had an IQ of 71. Whoa.
It was a discouraging week to say the least. Monday morning we met with the psychologist again, this time prepared for the worst. Praise God he gave us good news, sort of. Ella's tests were low, but not because she is incapable of understanding the tests. She's unable to focus long enough to answer the questions (or in some cases even hear the questions). She's got inattentive type ADHD. Something we never would have thought about, because she is NOT hyperactive. As the doctor started talking about solutions to help her, Seth and I were seeing the light at the end of the tunnel. Then I blew it and mentioned her recent seizure diagnosis. Evidently, that causes a bit of a problem because most of the meds that treat ADHD can't be taken by people who have seizures.
Okay, we left the office a bit confused, hoping that a neurologist can help us get things straightened out. Last week, with the news of a referral not coming for a few months, I was in the middle of all of that. That was a little bit of relief for me, since I didn't know what was happening with Ella.
Yesterday, we heard that the family ahead of us in line accepted a referral of three siblings. That means we are next...
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