I'm a little late, but two weeks ago marked the one year anniversary for GAMT treatment for Sam. Her geneticist said that after a year of treatment we should feel like Sam is a totally different child. And, he was completely right! Reading over my last post I can't believe "boo-K" was such a short time ago. Here are some random updates of happiness:
Last week, while waiting in a very long drive-thru line at McDonald's for apples, Sam must have heard me mumble under my breath, because she began saying, with much spunk and attitude, "Come On!" Even more attitude comes out when I ask her to do something and she says "okay, gee!" as if totally put out by the request.
Today Sam made pretty much her best sentence so far, "Mom, I'm hungry" while looking in the fridge. My mouth gaped a little at the expression of what she was feeling inside her little self (not to mention the wonderful word that is now used about 600 times per day to get my attention "mom!"). It isn't the most words in a sentence ever, but the most expressive. So cool. :)
Sam is bonding with a baby doll. She carries it around, even talks to it a bit and cried when she had to leave it at home to go to school Monday. Her doll's name is "Jessica" and Sam can actually say it pretty clearly.
Sam can read many site words (25?). Her teacher tested her on her alphabet this week and Sam passed upper and lower case with flying colors. Her teacher was so excited she sent me, all the aides, the speech and resource teachers and the principal an email with the subject line "Hooray for Sam!" We've begun discussing a plan for Sam for first grade, so it looks like we will be able to continue "main-streaming"!
Sam started another course of "The Listening Program" in December and a week or so later her teacher said "The music you are having her listen to is really helping. I'm seeing a difference". Then in January she said "it's weird, but I look up in circle time now and Sam is staring right at me, listening. I used to look up and find her totally distracted with something else. She is actually listening now." Reading books at home is the same story. Sam is actually interested in books outside of her five favorites that we've read a million times.
Sam's class has a new song/poem every week. Sam's favorite is "are you sleeping brother john" which she can sing well enough that others recognize it.
Since January I have been volunteering in Sam's class two days a week while they work on centers (specific topics like math, reading, art- broken into groups of six kids). This is where she has struggled to stay on task as the subject matter gets deeper than listening to stories and singing songs. It has been a great opportunity to prod Sam towards living up to her potential in the classroom. Her teacher has seemed very surprised when Sam has read words from easy books with me. A great moment was when Sam mumbled to me something about "potty" and I told her she needed to ask her teacher. She turned and said "Mrs. Brown, need to potty". Her teacher seemed stunned. I was able to stay late one day and go to recess with the class. Sam was right in the thick of the play- climbing with the boys, running with the girls and when it was time to line up, several kids were arguing over who could be by Sam in line.
Also since January we have begun weekly speech therapy and bi-weekly occupational therapy (OT). The results with both have been great. Every week her speech therapist is surprised that she has mastered (or at least made huge progress) with her new materials from the week before. The therapist has been such a positive person to work with and is very optimistic about Sam's future progress. She said that Sam has "apraxia" which is basically a difficulty motor planning the mouth and tongue for making the many unique sounds in speech flow together. So, we have to work on each sound, then combining that sound with another (like S, then See, Saw, Say, Sew, Sigh). And after lots of practice she should start building up the skills to speak more clearly. Evidently many parents of kids with apraxia work for months on things that Sam is accomplishing in a week or two, so we are all very excited. OT has been great too. Sam's pencil grip has improved and she is starting to make some effort to color in certain areas of pictures, etc. Not writing yet, but we'll get there. She can now button large and medium buttons fairly well and can use scissors to cut (mostly a jagged line, but big progress over nothing!).
Developmentally the progress is amazing, especially for me when I try to recall the details of three months since my last post.
On the biological/medical end of things, Sam's blood tests have shown that she is getting good nutrition and things are pretty balanced for the most part. However, her seizures have continued. I started wondering if, when a year ago we started the creatine and had such an immediate end to her seizures, if that wasn't solely due to creatine, but that the magic combination of meds and creatine is what worked so well. We slowly took Sam off meds last June (sure that the meds were useless because they had done nothing for her before the creatine began) and she began having seizures again about four weeks later. So... Sam went back to her neurologist this week and we started lamotrigene again last night. Today was her great "Mom, I'm hungry" day, so she is seeming normal or even better-than-normal. If the seizures go away on the tiny dose we are starting her at, we will just keep the dose super low. The doc we talked to explained that these seizures have been doing no damage to her brain (only seizures that cause a loss of oxygen to the brain are actually damaging) but that the one thing they could effect is her ability to recall, which is crucial in the billion things we are trying to get her to learn right now. So, we are really hoping this is the magic cocktail that calms those little electrical storms in her brain.
Thanks to everyone for their love and support, especially my friends that have been babysitting Ellie & Bubba so much to allow me to help Sam in the classroom and in therapy.
Keep praying for Sam, it seems to be working. :)
Wednesday, March 17, 2010
Friday, December 18, 2009
Christmas Break is here...
After my post about arginine, we had a visit with the geneticist and nutritionist. Here is how they explained the very complicated systems involved in arginine metabolism and production: the body can make its own arginine. If Sam isn't eating enough protein, or if she over eats protein (ie has 20 grams instead of 13) her body will start making its own concoction of amino acids through the Urea cycle and some arginine will be produced. So the whole thing is a big teeter totter balancing act. The number one best way to keep the teeter totter leaning to the safe side (not making guanidino acetate from arginine and thus building up toxins) is to keep creatine and ornithine in her system. If we do this, the little bit of arginine she will eat in her 13 grams of protein a day should cause no problems. They did however admit that it's not a bad idea to do my own research and educate myself on foods that are very high in arginine. And if I know a food is high, like chocolate, peanut butter, raisins... then definitely avoid it! Basically, educate myself to make smart choices, but don't bother counting milligrams of arginine. Done. Inner geek satisfied. I will try not to bore you with this mumbo jumbo anymore, but there are other moms (three now) who are dealing with the same questions.
This year has been an amazing whirlwind in my life and by far, the most rewarding year of my life. It's such a unique perspective that I've been blessed with to notice every little tiny thing going on in Sam's life and enjoy so many celebrations along the way. It's normal human nature to hear your baby's first approximations and think "she's starting to talk! woo hoo!" and then just let most of it "happen" without noticing every critical step that she accomplishes. Who ever says "my child put on a final consonant today!!!!" and then cries with relief? Yes, it's hard, trying, exhausting, etc. but the joy I have felt watching my daughter progress this year is very hard to match. I am so thankful at this time of year for my many blessings, but I will admit that Sam's diagnosis is at the top of the list this year. I can't even explain why, but for all these years I've had faith that Sam would progress. That she wasn't simply "autistic" or in some other way unreachable- even while loved ones proposed "accepting her for how she was", I knew she hadn't reached her potential. It wasn't an angry or blind denial, it was something more. I am so thankful for that spirit of comfort that I've enjoyed over the years and I am especially thankful now for the amazing progress that Sam is making.
In the official study on GAMT that we received from our geneticist, it mentioned that out of the small initial group studied, many had made improvements in behavior but noone had progressed in speech enough to say ten words. Again, I read this and thought "whatever..." it didn't really phase me. And now I am ecstatic to say that this week Sam started putting together three word phrases such as "more apple please", "help me sock", "want bar please", "bye bye daddy", etc. I officially cannot list how many words she has.
Last week her teacher told me that the initial state of awe during class had worn off and a bit of a behavior problem has begun as she is starting to get bored. She can't do the work the other kids are doing because she's behind, so she's on the outside of things even with the materials I am sending in for her. This got my mind racing for ideas of how to help and I decided a week ago that my kids should stop watching TV. I know, I know, I've done this before. My sister-in-law agrees that it's good to de-tox your kids by taking them off TV for awhile. But this time it was more complicated. I decided that Sam now has so many skills, that it's crazy that her language component is lagging so far behind (she is recognizing numbers, colors, shapes, letters, basically meeting all her IEP goals from just six or so weeks ago). And I recognized TV as her escape from listening to the real world and from communicating with me. It was hard for about a day and now noone is asking for TV. Trey woke up to find all three kids sitting on stools lined up in a row listening to Ellie "read" a book to them. It's tons of little social and listening based things that have changed. So, what do you know, six days into it, Sam has made a huge leap forward in her progress. This is of course skipping the first change in speech which was the before mentioned final consonant. About three weeks ago? she said "booK" and pointed to the closet we keep the bedtime books in. It was the first "consonant, vowel, consonant" word she has pronounced clearly (not counting repetitive consonants like "dada", etc). Before it had been "boo" and I understood based on context and pointing, etc. It really felt like her first word when she said it. Her voice was pure and real and it was amazing to hear. Now she has moved onto two syllable combos like "buckle", two word phrases like "more please" and now three word phrases. Will someone pinch me?
So now tell me, should I "just accept her as she is" or be a crazy, granola, weird mom that puts my child through kooky activities, takes away the TV, makes her listen to therapeutic classical music listening programs, feeds her smoothies three times a day and creatine cocktails six times a day and swears she won't stop trying?
I think every parent plays a critical role in their child's progress through life and their overall potential for happiness. I'm honored to be playing that role in the life of a little angel who is, to me, as sweet and pure as a newborn fresh from heaven. Merry Christmas.
This year has been an amazing whirlwind in my life and by far, the most rewarding year of my life. It's such a unique perspective that I've been blessed with to notice every little tiny thing going on in Sam's life and enjoy so many celebrations along the way. It's normal human nature to hear your baby's first approximations and think "she's starting to talk! woo hoo!" and then just let most of it "happen" without noticing every critical step that she accomplishes. Who ever says "my child put on a final consonant today!!!!" and then cries with relief? Yes, it's hard, trying, exhausting, etc. but the joy I have felt watching my daughter progress this year is very hard to match. I am so thankful at this time of year for my many blessings, but I will admit that Sam's diagnosis is at the top of the list this year. I can't even explain why, but for all these years I've had faith that Sam would progress. That she wasn't simply "autistic" or in some other way unreachable- even while loved ones proposed "accepting her for how she was", I knew she hadn't reached her potential. It wasn't an angry or blind denial, it was something more. I am so thankful for that spirit of comfort that I've enjoyed over the years and I am especially thankful now for the amazing progress that Sam is making.
In the official study on GAMT that we received from our geneticist, it mentioned that out of the small initial group studied, many had made improvements in behavior but noone had progressed in speech enough to say ten words. Again, I read this and thought "whatever..." it didn't really phase me. And now I am ecstatic to say that this week Sam started putting together three word phrases such as "more apple please", "help me sock", "want bar please", "bye bye daddy", etc. I officially cannot list how many words she has.
Last week her teacher told me that the initial state of awe during class had worn off and a bit of a behavior problem has begun as she is starting to get bored. She can't do the work the other kids are doing because she's behind, so she's on the outside of things even with the materials I am sending in for her. This got my mind racing for ideas of how to help and I decided a week ago that my kids should stop watching TV. I know, I know, I've done this before. My sister-in-law agrees that it's good to de-tox your kids by taking them off TV for awhile. But this time it was more complicated. I decided that Sam now has so many skills, that it's crazy that her language component is lagging so far behind (she is recognizing numbers, colors, shapes, letters, basically meeting all her IEP goals from just six or so weeks ago). And I recognized TV as her escape from listening to the real world and from communicating with me. It was hard for about a day and now noone is asking for TV. Trey woke up to find all three kids sitting on stools lined up in a row listening to Ellie "read" a book to them. It's tons of little social and listening based things that have changed. So, what do you know, six days into it, Sam has made a huge leap forward in her progress. This is of course skipping the first change in speech which was the before mentioned final consonant. About three weeks ago? she said "booK" and pointed to the closet we keep the bedtime books in. It was the first "consonant, vowel, consonant" word she has pronounced clearly (not counting repetitive consonants like "dada", etc). Before it had been "boo" and I understood based on context and pointing, etc. It really felt like her first word when she said it. Her voice was pure and real and it was amazing to hear. Now she has moved onto two syllable combos like "buckle", two word phrases like "more please" and now three word phrases. Will someone pinch me?
So now tell me, should I "just accept her as she is" or be a crazy, granola, weird mom that puts my child through kooky activities, takes away the TV, makes her listen to therapeutic classical music listening programs, feeds her smoothies three times a day and creatine cocktails six times a day and swears she won't stop trying?
I think every parent plays a critical role in their child's progress through life and their overall potential for happiness. I'm honored to be playing that role in the life of a little angel who is, to me, as sweet and pure as a newborn fresh from heaven. Merry Christmas.
Tuesday, November 3, 2009
School & Life update
I've waited too long and can't keep straight what has happened and what I've already blogged, so forgive me if I repeat myself.
School is going good. Even when Sam is having a really rough morning and I'm worried about her, she goes to school and comes home renewed and happy. The school has continued to be amazingly helpful and accommodating. She leaves the classroom three days a week for an hour of resource and two days a week for speech. Her teacher does an activity called "Brain Dance" which is basically lots of big movements- stretching, crouching, etc. that we all practice as babies, set to classical music. She mentioned at Sam's IEP meeting that Sam was unable to copy any of the movements and would just stand there watching the other kids. By last week Sam was walking around the house doing all these little moves she'd picked up from "Brain Dance"!
Sam hit some major gross motor milestones in October. She climbed all the way to the top of the rock climbing wall three times on her last night of class as well as began climbing sideways across a "bouldering wall". The sideways climbing is really great for brain development as it involves "crossing center". By the way, the climbing wall is REALLY high. I'm guessing 30 feet? And I'm pretty sure I wouldn't be able to climb it once, let alone three times! She also officially is able to pedal her bike all the way around our cul-de-sac and can even back pedal to break and swerve to miss her little brother walking right in front of her. I think all of this was spurred on by her daily treadmill walk/run as prescribed by NACD.
Her speech has hit the point where she has so much ability, I think she just needs more motivation and internal desire. She can pronounce all sounds of the alphabet except for "f,s,l,ch,sh,v,z". And she is imitating the number of syllables when she approximates words. In other words, instead of "baby" being "bu" it's now "bu-be". She has an approximation for "I don't know" and now understand to throw "please" onto the end of her requests.
I think all of this is a natural progression that has to be built upon over time. It is frustrating that it can't be faster, but if I keep my perspective, it is exciting that she has made so much progress in the last two months. She's walking around saying colors all day. We now know that her favorite color is NOT yellow, but is pink. And she is about 900 times more responsive in general than she was in the summer. I asked her today "are you comfortable" and thought "hmm... I don't think she'll know what I'm talking about", but she said very calmly "yeah" and didn't seem confused at all.
Her seizures are not gone. They are nearly gone now, but as soon as I think it's been three days since I've seen one, she'll have a couple. They are still very short and non-convulsive. Her diet has been tweaked quite a bit to try to balance this out. We finally found a medical formula that she will drink. Basically this formula (similar to an infant formula) consists of protein that has only the essential amino acids, meaning it is arginine free. She drinks this in a fruit smoothie three times a day and it provides 9 grams of her protein along with a good part of the fat and calories she needs. From the foods she eats, she is allowed 13 grams of protein. I did come across (finally!) an official recommendation for how much arginine she should be taking in per day. And as I suspected all along, just going low protein doesn't guarantee that her arginine intake is low. A single slice of "low-protein" cinnamon raisin bread containing only one gram of protein, actually has more than a third of her day's recommended intake of arginine. If this were her favorite food and I was giving her ten slices a day, thinking I was in her 13 gram range, we'd be in big trouble. Unfortunately I can't completely use the guideline for arginine because the arginine content isn't available on all foods. The cinnamon raisin bread got me wondering if the craisins that she had become a big fan of since the same time the seizures began were a hidden carrier of arginine, but that information isn't available anywhere! I've even contacted Ocean Spray. So, it is pretty much guess work :( but she seems better off now that she is relying on the formula for so much of her nutrition.
Another big accomplishment was that she followed a three step command in order last week. Sounds bizarre, I know, but very important in developmental milestones.
School is going good. Even when Sam is having a really rough morning and I'm worried about her, she goes to school and comes home renewed and happy. The school has continued to be amazingly helpful and accommodating. She leaves the classroom three days a week for an hour of resource and two days a week for speech. Her teacher does an activity called "Brain Dance" which is basically lots of big movements- stretching, crouching, etc. that we all practice as babies, set to classical music. She mentioned at Sam's IEP meeting that Sam was unable to copy any of the movements and would just stand there watching the other kids. By last week Sam was walking around the house doing all these little moves she'd picked up from "Brain Dance"!
Sam hit some major gross motor milestones in October. She climbed all the way to the top of the rock climbing wall three times on her last night of class as well as began climbing sideways across a "bouldering wall". The sideways climbing is really great for brain development as it involves "crossing center". By the way, the climbing wall is REALLY high. I'm guessing 30 feet? And I'm pretty sure I wouldn't be able to climb it once, let alone three times! She also officially is able to pedal her bike all the way around our cul-de-sac and can even back pedal to break and swerve to miss her little brother walking right in front of her. I think all of this was spurred on by her daily treadmill walk/run as prescribed by NACD.
Her speech has hit the point where she has so much ability, I think she just needs more motivation and internal desire. She can pronounce all sounds of the alphabet except for "f,s,l,ch,sh,v,z". And she is imitating the number of syllables when she approximates words. In other words, instead of "baby" being "bu" it's now "bu-be". She has an approximation for "I don't know" and now understand to throw "please" onto the end of her requests.
I think all of this is a natural progression that has to be built upon over time. It is frustrating that it can't be faster, but if I keep my perspective, it is exciting that she has made so much progress in the last two months. She's walking around saying colors all day. We now know that her favorite color is NOT yellow, but is pink. And she is about 900 times more responsive in general than she was in the summer. I asked her today "are you comfortable" and thought "hmm... I don't think she'll know what I'm talking about", but she said very calmly "yeah" and didn't seem confused at all.
Her seizures are not gone. They are nearly gone now, but as soon as I think it's been three days since I've seen one, she'll have a couple. They are still very short and non-convulsive. Her diet has been tweaked quite a bit to try to balance this out. We finally found a medical formula that she will drink. Basically this formula (similar to an infant formula) consists of protein that has only the essential amino acids, meaning it is arginine free. She drinks this in a fruit smoothie three times a day and it provides 9 grams of her protein along with a good part of the fat and calories she needs. From the foods she eats, she is allowed 13 grams of protein. I did come across (finally!) an official recommendation for how much arginine she should be taking in per day. And as I suspected all along, just going low protein doesn't guarantee that her arginine intake is low. A single slice of "low-protein" cinnamon raisin bread containing only one gram of protein, actually has more than a third of her day's recommended intake of arginine. If this were her favorite food and I was giving her ten slices a day, thinking I was in her 13 gram range, we'd be in big trouble. Unfortunately I can't completely use the guideline for arginine because the arginine content isn't available on all foods. The cinnamon raisin bread got me wondering if the craisins that she had become a big fan of since the same time the seizures began were a hidden carrier of arginine, but that information isn't available anywhere! I've even contacted Ocean Spray. So, it is pretty much guess work :( but she seems better off now that she is relying on the formula for so much of her nutrition.
Another big accomplishment was that she followed a three step command in order last week. Sounds bizarre, I know, but very important in developmental milestones.
Friday, September 4, 2009
Multimedia message
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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