My gorgeous girl!
Friday, September 4, 2009
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No longer scared of camera flash and loves to say "chee". One day she will get the "s" sound ;)
What do Seizures, T&A and Kindergarten have in common?
So, it's been a crazy couple months. Strap yourself in for a long update.
In mid-July we took a road trip to Ohio to see Emee & Papa. Sam did well with the drive. She seemed a little "off", but so did her siblings. I noticed while we were there that her tonsils were big and swollen again (had originally noticed this and ENT treated with antibiotics, back in February after getting a good view into her screaming throat while holding her down for her EEG). Even after all that we've been through, I will admit to feeling a bit intimidated by the medical community. I know there's an almost "moral" debate about what to treat and what to let heal on its own, especially in the Ear, Nose, Throat regions and I knew her pediatrician would blow us off unless she had a positive strep test. Which is totally confusing because what is "tonsilitis"? Isn't it something you want to treat? If it's "not treatable by antibiotics" then why did the antibiotics work last time?? Anyways, I knew this was an issue and when we got back in town I took her in and the doc tested Ellie for strep and said he'd treat them both if Ellie's was positive (her tonsils are also huge and red and swollen and Sam did NOT want to get swabbed). The test was negative and neither were going to be treated. That was Friday. I kept thinking that MAYBE I had seen very small seizures in Sam, but wasn't sure until I saw a definite seizure Monday morning. I was so bummed. I had been excited to bid seizures farewell six months before. I visited the Pediatrician who said he suspected the swollen tonsils were a trigger (basically an infection or being deprived of sleep by poor breathing can both raise your susceptibility to seizures). The neurologist, geneticist and ENT all agreed (MIRACLE) and by Wednesday Sam was in for a T&A (tonsillectomy and adenoidectomy). Her adenoids were "very large" and her tonsils were full of gunk that literally oozed out when the doc squeezed them (uggh... Trey was disappointed that the ENT forgot to save them and show us).
So, here we are, one week till school and I'm thinking we're good, we got this taken care of, she'll be great in a couple of days... Enter two weeks of living hell. I'm sure there are worse surgeries, but this was definitely the worst I've mothered a child through so far. For ten days she was lucky if she consumed 100 calories of liquid and she held down no creatine for eleven days. Now her eating/supplementing is back to normal but she is still having occasional seizures. I can't figure out if maybe her 'bout with anorexia' used up every molecule of creatine in her brain and we're on a build-up cycle now, but this one issue is very discouraging.
Because the recovery was so long, she started kindergarten a week late. She was so excited to get ready to go the first day. She loved her little uniform. Her excitement was obvious as she put on her backpack and went to the front door as if the bus were coming (like it did for her preschool in the past). The car ride there was great, still excited... and basically when I pulled into the parking lot she started falling apart. She was pulling against me with all her strength as I drug her in. When we got in the classroom the agreement had been that I would stay with her to make her feel safe and ease her into staying three hours, but she was a wreck, crying and saying "no no no no".
They had told the other kids a little about Sam the day before and the kids were all paying close attention to the entire event. One boy at her table said "She can't talk". Another said "Yes she can, I heard her! She said "no"!" Another said "I think maybe she can't talk because she can't hear, because I couldn't hear when I was born". All super cute kids.
One of the aides was especially helpful and came out into the hall with us and asked all about Sam and how she'd adjusted to preschool before. Her son (third grade I think?) is at the same school and has autism. I was so excited to hear that because obviously she wouldn't be thinking I was crazy for mainstreaming Sam and would have some experience that would help in working with Sam. She suggested that maybe Sam would do best without me there and I agreed, so she scooped up Sam and I hid behind a car in the parking lot while my daughter cried one of her only words "mama" and I had massive anxiety attacks about everything from, will she have seizures, wet her pants, self-explode?
She has now completed two weeks of school and has made huge improvements. Her teacher is great at keeping in touch with me and it seems that nearly everyday or so brings a new idea of something we can work together on (school and home). At first it was sitting with her legs crossed at circle time. We practiced this over and over at home and now she will sit like that for stories at home, while riding in the car, etc. "Following the line" has been lots of walking around the house with all the kids singing "we're following the leader". Her teacher has been a perfect fit for Sam it seems. She is accepting and kind, but also has strict boundaries and classroom rules and from what I am hearing, Sam is learning to follow the same rules as the other kids. She isn't able to do all the same academic things, but I think it's all about baby steps. She can't write her name when she's just learning to cross her legs, etc.
The second day I took Sam in and another little girl came in dragging her mom over to me and the mom said, "She has been talking about Sam all day and said I had to come in and meet her". A little boy getting into the car next to us said to his mom excitedly "Look mom! It's Sam!" I'm not sure why these kids are so fascinated and kind, but I am hoping it lasts. Sam will be at the same small school with the same kids for 10 years- so much better for her to feel secure and confident than the local elementary school with twice as many kids. I think the social experience this is giving Samantha is critical to her development right now and it's carrying over into how she is playing with Ellie and Will. She is much more engaged with them and bored less often.
About a week after the surgery, I noticed Sam was making some new sounds. Just sounding different than before... Hard to describe. And now since she's totally recovered her speech has improved amazingly. It is so different that it's almost like she can finally hear herself for the first time and is improving with practice. Two days ago she began making the "w" sound for the first time. Today she kept trying to say "water" at the dinner table for more to drink. She has begun yelling "YEAH" as clear as any child when I ask if she wants something that she loves (candy, whatever). All around there are just a lot of improved pronunciations. In her earliest and worst days of recovery her speech was completely gone. Not a "no" or "mama" or anything for many days and I was SO depressed. It really was some of my darkest days and I really feared that she had backslid a mile and that it would be six months before she got back to where she had been. Just one more time where I needed to get kicked in the butt to remember to have faith and patience because I never will know what is around the next corner... :)
Oh, also, last horseback trip (16 days post-surgery) Sam didn't even have to be told to straighten up, she was dead center and perfectly balanced and awesome. Also, I have enrolled her again for rock climbing because I am so excited to compare her abilities now to a year ago when she was undiagnosed/untreated and having chronic seizures! Should be good!
In mid-July we took a road trip to Ohio to see Emee & Papa. Sam did well with the drive. She seemed a little "off", but so did her siblings. I noticed while we were there that her tonsils were big and swollen again (had originally noticed this and ENT treated with antibiotics, back in February after getting a good view into her screaming throat while holding her down for her EEG). Even after all that we've been through, I will admit to feeling a bit intimidated by the medical community. I know there's an almost "moral" debate about what to treat and what to let heal on its own, especially in the Ear, Nose, Throat regions and I knew her pediatrician would blow us off unless she had a positive strep test. Which is totally confusing because what is "tonsilitis"? Isn't it something you want to treat? If it's "not treatable by antibiotics" then why did the antibiotics work last time?? Anyways, I knew this was an issue and when we got back in town I took her in and the doc tested Ellie for strep and said he'd treat them both if Ellie's was positive (her tonsils are also huge and red and swollen and Sam did NOT want to get swabbed). The test was negative and neither were going to be treated. That was Friday. I kept thinking that MAYBE I had seen very small seizures in Sam, but wasn't sure until I saw a definite seizure Monday morning. I was so bummed. I had been excited to bid seizures farewell six months before. I visited the Pediatrician who said he suspected the swollen tonsils were a trigger (basically an infection or being deprived of sleep by poor breathing can both raise your susceptibility to seizures). The neurologist, geneticist and ENT all agreed (MIRACLE) and by Wednesday Sam was in for a T&A (tonsillectomy and adenoidectomy). Her adenoids were "very large" and her tonsils were full of gunk that literally oozed out when the doc squeezed them (uggh... Trey was disappointed that the ENT forgot to save them and show us).
So, here we are, one week till school and I'm thinking we're good, we got this taken care of, she'll be great in a couple of days... Enter two weeks of living hell. I'm sure there are worse surgeries, but this was definitely the worst I've mothered a child through so far. For ten days she was lucky if she consumed 100 calories of liquid and she held down no creatine for eleven days. Now her eating/supplementing is back to normal but she is still having occasional seizures. I can't figure out if maybe her 'bout with anorexia' used up every molecule of creatine in her brain and we're on a build-up cycle now, but this one issue is very discouraging.
Because the recovery was so long, she started kindergarten a week late. She was so excited to get ready to go the first day. She loved her little uniform. Her excitement was obvious as she put on her backpack and went to the front door as if the bus were coming (like it did for her preschool in the past). The car ride there was great, still excited... and basically when I pulled into the parking lot she started falling apart. She was pulling against me with all her strength as I drug her in. When we got in the classroom the agreement had been that I would stay with her to make her feel safe and ease her into staying three hours, but she was a wreck, crying and saying "no no no no".
They had told the other kids a little about Sam the day before and the kids were all paying close attention to the entire event. One boy at her table said "She can't talk". Another said "Yes she can, I heard her! She said "no"!" Another said "I think maybe she can't talk because she can't hear, because I couldn't hear when I was born". All super cute kids.
One of the aides was especially helpful and came out into the hall with us and asked all about Sam and how she'd adjusted to preschool before. Her son (third grade I think?) is at the same school and has autism. I was so excited to hear that because obviously she wouldn't be thinking I was crazy for mainstreaming Sam and would have some experience that would help in working with Sam. She suggested that maybe Sam would do best without me there and I agreed, so she scooped up Sam and I hid behind a car in the parking lot while my daughter cried one of her only words "mama" and I had massive anxiety attacks about everything from, will she have seizures, wet her pants, self-explode?
She has now completed two weeks of school and has made huge improvements. Her teacher is great at keeping in touch with me and it seems that nearly everyday or so brings a new idea of something we can work together on (school and home). At first it was sitting with her legs crossed at circle time. We practiced this over and over at home and now she will sit like that for stories at home, while riding in the car, etc. "Following the line" has been lots of walking around the house with all the kids singing "we're following the leader". Her teacher has been a perfect fit for Sam it seems. She is accepting and kind, but also has strict boundaries and classroom rules and from what I am hearing, Sam is learning to follow the same rules as the other kids. She isn't able to do all the same academic things, but I think it's all about baby steps. She can't write her name when she's just learning to cross her legs, etc.
The second day I took Sam in and another little girl came in dragging her mom over to me and the mom said, "She has been talking about Sam all day and said I had to come in and meet her". A little boy getting into the car next to us said to his mom excitedly "Look mom! It's Sam!" I'm not sure why these kids are so fascinated and kind, but I am hoping it lasts. Sam will be at the same small school with the same kids for 10 years- so much better for her to feel secure and confident than the local elementary school with twice as many kids. I think the social experience this is giving Samantha is critical to her development right now and it's carrying over into how she is playing with Ellie and Will. She is much more engaged with them and bored less often.
About a week after the surgery, I noticed Sam was making some new sounds. Just sounding different than before... Hard to describe. And now since she's totally recovered her speech has improved amazingly. It is so different that it's almost like she can finally hear herself for the first time and is improving with practice. Two days ago she began making the "w" sound for the first time. Today she kept trying to say "water" at the dinner table for more to drink. She has begun yelling "YEAH" as clear as any child when I ask if she wants something that she loves (candy, whatever). All around there are just a lot of improved pronunciations. In her earliest and worst days of recovery her speech was completely gone. Not a "no" or "mama" or anything for many days and I was SO depressed. It really was some of my darkest days and I really feared that she had backslid a mile and that it would be six months before she got back to where she had been. Just one more time where I needed to get kicked in the butt to remember to have faith and patience because I never will know what is around the next corner... :)
Oh, also, last horseback trip (16 days post-surgery) Sam didn't even have to be told to straighten up, she was dead center and perfectly balanced and awesome. Also, I have enrolled her again for rock climbing because I am so excited to compare her abilities now to a year ago when she was undiagnosed/untreated and having chronic seizures! Should be good!
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