Here the nutz and bolts of the last three weeks.
Abigail has started having seizures again...mild at first with one per day. By this last weekend they were up to 4 per day and pretty severe. We also saw regression in alot of her previous less than charming behaviors.
However yesterday she only had one set, she was a little charmer all day today and maybe had one or two really small sets tonight.
All I can say is What the Frak! (if you can use that word on TV then I am going to use it here)
We are at loss as to what the issue is and what could be causing it, only speculation and guesses.
Her prescription writer...sorry neurologist... is at a loss and offered up more drugs for us to try. Such is the joys of Idiopathic Epilepsy. "We don't know" the doctors say "Lets try this drug with this drug and see what happens" they add.
Over all Abigail is great, she continues to improve her language skill set, we lowered her calorie intake and she is hungry at meals, the down and dirty meal battles are at an end for now, and after a week off from school was very excited to see all her friends.
I promise to not go so long with out a post again and the next one will be a little less frustrated in tone :)
Tuesday, March 31, 2009
Friday, March 13, 2009
Errgg
So the Darth Vader voice is no longer working. My Jedi mind tricks have failed. But Alas!! http://www.youtube.com/ to the rescue. Whats that you say Abigail...you want music with dinner. Why let me fire up the old laptop and see what we can find. Since we happen to be sitting at my desk/kitchen table it works out. What would you like to hear Miss A.
"I want Bum Bum" She says with a slight tone of glee. A crooked smile breaks over her face.
"Bum Bum it is" I say...5 seconds later and a quick search for Rhianna's Distrubia on YouTube and we are good to go. The woeful excuses for speakers in my laptop breaking out the latest beats from a chart topping artist. The song ends and we have two bites of food into Abigail who has been dancing and doing elaborate arm movements while pecking at her food.
'What now?" I ask hoping its anything but 'Bum Bum' again, so I can get the taste of that last song out of my head.
"Rock Star!!!" the young Miss A. squeals, waving her arms back in forth while chomping down a bite of keto pancake.
My soul screams for mercy, couldn't it have at least been the harmless melodies of Katy Perry? I can't disappoint Abigail as she reaches for the third to last bite of dinner. I type in 'Pink' and "so what' into the search engine of YouTube. Out spits 20 options of various forms and formats of the songs. I choose the shortest. Abigail once again rocks back and forth in her chair, her arms swinging wildly, two bites of pancake left. She sings along to the chorus..."So what!, Cause I'm a rockstar, and I still have my rock star moves!!!" Abigail really only gets the about every second word, so it came out more like "what, rockstar!, have rock moves!!!" with a mix of mumbling in between. The song ends with one bite left and Abigail's arms stretched over her head....she freezes at the last note and looks at me expectantly. Before I can even ask she blurts out....
"mmmbrlla"
OK that's not to bad...as long as I can find the remixed version with the Jay-Z intro we should be in good shape. I search for 'Rhianna' and 'Umbrella' and in the first three options find the version I want.
We close out dinner with me dancing Abigails now empty plate to the kitchen sink and her following close behind weaving her arms through the air and jumping up and down to the beat....where is a video camera when you need one.
Not a bad evening considering we were both in tears at lunch.
Now if I can only keep the damn lyrics from invading my already loosened sanity so I can sleep.......
"I want Bum Bum" She says with a slight tone of glee. A crooked smile breaks over her face.
"Bum Bum it is" I say...5 seconds later and a quick search for Rhianna's Distrubia on YouTube and we are good to go. The woeful excuses for speakers in my laptop breaking out the latest beats from a chart topping artist. The song ends and we have two bites of food into Abigail who has been dancing and doing elaborate arm movements while pecking at her food.
'What now?" I ask hoping its anything but 'Bum Bum' again, so I can get the taste of that last song out of my head.
"Rock Star!!!" the young Miss A. squeals, waving her arms back in forth while chomping down a bite of keto pancake.
My soul screams for mercy, couldn't it have at least been the harmless melodies of Katy Perry? I can't disappoint Abigail as she reaches for the third to last bite of dinner. I type in 'Pink' and "so what' into the search engine of YouTube. Out spits 20 options of various forms and formats of the songs. I choose the shortest. Abigail once again rocks back and forth in her chair, her arms swinging wildly, two bites of pancake left. She sings along to the chorus..."So what!, Cause I'm a rockstar, and I still have my rock star moves!!!" Abigail really only gets the about every second word, so it came out more like "what, rockstar!, have rock moves!!!" with a mix of mumbling in between. The song ends with one bite left and Abigail's arms stretched over her head....she freezes at the last note and looks at me expectantly. Before I can even ask she blurts out....
"mmmbrlla"
OK that's not to bad...as long as I can find the remixed version with the Jay-Z intro we should be in good shape. I search for 'Rhianna' and 'Umbrella' and in the first three options find the version I want.
We close out dinner with me dancing Abigails now empty plate to the kitchen sink and her following close behind weaving her arms through the air and jumping up and down to the beat....where is a video camera when you need one.
Not a bad evening considering we were both in tears at lunch.
Now if I can only keep the damn lyrics from invading my already loosened sanity so I can sleep.......
Friday, March 6, 2009
The force is strong in this one....
I fear that Abigail will grow up to be afraid of Darth Vader....or any movie that James Earl Jones might be in or doing a voice over in.
Meal time has become somewhat less stressful recently as Abigail is starting to eat with a little less coaxing. Coaxing is still required as it is difficult to get her to start eating. What has helped is Melinda has discovered some great recipies and a slew of calorie free, carb free dressings that Abigail is really enjoying.....however.
There are times where a firm, LOUD, voice is required to convince Abigail that she should take a bite. Often this is simply the first bite just to get her started.
Typical Breakfast in the Rosenfeld household:
Its 5:45 to 6am on any given day. I have gotten up with Abigail made her breakfast and myself a pot of coffee.
"Open your mouth Abigail and take a bite" I say calmly. I am sitting across the table from her halfway thru my first cup of coffee and am almost done checking the nightly logs for some of my clients servers.
Abigail draws in her shoulders and sucks her chin down to her chest, she looks at me from the tops of her eyes. I ignore this as its all part of the dance we do every morning. I finish the cup of coffee and retrieve more from the coffee maker in the kitchen.
Upon returning to the table Abigail still has not moved. I lower the lid to my computer, Facebook can wait a few more minutes.
"Take a bite now ....please" I say with a bit firmer tone.
Abigail pulls her best blank expression out of her bag of tricks somehow knowing this one look will set me off. I bite back the sudden pulse of pain behind my right eye and keep my face from twitching, hoping that last blood pressure spike wasn't a stroke. I take a long drink of coffee wistfully thinking about how nice some Jack Daniels would be mixed with it.
"Abigail take a bite NOW!" My voice is lowering and the vowels are getting emphasized. I am done with my second cup of coffee and its now 6:15. Abigail and I have been staring at each other for at least 10 minutes.
Abigail sucks in a deep breath and holds it, she clasps her hands in front of her and lowers her shoulders, braces her back against the chair and looks down at her lap.
I repeat the same phrase again..."Abigail take a bite NOW!" only this time Darth Vaders deep rumbling voice is channeling thru me and all the powers of the force both dark and light compel her to raise her hand, take hold of the fork...pause....and then take a bite. Her shoulders loosen, her posture straightens, her eyes look up, and she says "Nummy!"
I scream inward. But force a smile and say in a light merry voice "Good Job Abigail....see it is yummy!" I even manage a little clap for her as she digs into the rest of the plate of food.
My hands are shaking as I pour the third cup of coffee wondering if I really need it.
Meal time has become somewhat less stressful recently as Abigail is starting to eat with a little less coaxing. Coaxing is still required as it is difficult to get her to start eating. What has helped is Melinda has discovered some great recipies and a slew of calorie free, carb free dressings that Abigail is really enjoying.....however.
There are times where a firm, LOUD, voice is required to convince Abigail that she should take a bite. Often this is simply the first bite just to get her started.
Typical Breakfast in the Rosenfeld household:
Its 5:45 to 6am on any given day. I have gotten up with Abigail made her breakfast and myself a pot of coffee.
"Open your mouth Abigail and take a bite" I say calmly. I am sitting across the table from her halfway thru my first cup of coffee and am almost done checking the nightly logs for some of my clients servers.
Abigail draws in her shoulders and sucks her chin down to her chest, she looks at me from the tops of her eyes. I ignore this as its all part of the dance we do every morning. I finish the cup of coffee and retrieve more from the coffee maker in the kitchen.
Upon returning to the table Abigail still has not moved. I lower the lid to my computer, Facebook can wait a few more minutes.
"Take a bite now ....please" I say with a bit firmer tone.
Abigail pulls her best blank expression out of her bag of tricks somehow knowing this one look will set me off. I bite back the sudden pulse of pain behind my right eye and keep my face from twitching, hoping that last blood pressure spike wasn't a stroke. I take a long drink of coffee wistfully thinking about how nice some Jack Daniels would be mixed with it.
"Abigail take a bite NOW!" My voice is lowering and the vowels are getting emphasized. I am done with my second cup of coffee and its now 6:15. Abigail and I have been staring at each other for at least 10 minutes.
Abigail sucks in a deep breath and holds it, she clasps her hands in front of her and lowers her shoulders, braces her back against the chair and looks down at her lap.
I repeat the same phrase again..."Abigail take a bite NOW!" only this time Darth Vaders deep rumbling voice is channeling thru me and all the powers of the force both dark and light compel her to raise her hand, take hold of the fork...pause....and then take a bite. Her shoulders loosen, her posture straightens, her eyes look up, and she says "Nummy!"
I scream inward. But force a smile and say in a light merry voice "Good Job Abigail....see it is yummy!" I even manage a little clap for her as she digs into the rest of the plate of food.
My hands are shaking as I pour the third cup of coffee wondering if I really need it.
Monday, March 2, 2009
Keeps on Trucking.
and Abigail continues to do great. Meals are still stressful but she eats them more often than not. I have developed a "firm" voice that she has learned I mean business when she hears it. She is loving foods that she can dip into sauces. Breakfast has gotten easier since I started making "Cheese Sandwiches". These consist of scrambled eggs cooked in a pancake type fashion about 6" across....then cheese sprinkled one side...you fold the egg in half and then cut it into sections. The cheese melts and holds the two sides of the eggs together. Sound familiar, yes its an omelet :), but to Abigail it is a cheese sandwich.
Abigail continues to expand her vocabulary and sentence structure, she plays with her friends now, and even voices opinions that are age appropriate. The cutest things recently is she is starting to realize that she is adorable. "pretty hair" she says while holding it out with both hands. "pretty dress" she says while spinning slowly.
My current opinion on the seizures, even though we are not seeing them, is they are still there at some level. Picture the spines of an alligator going thru the water and leaving little wakes rippling across the mirrored surface of a pond. They disappear just as quickly as they appear. We don't see the monster but we still know its there.
Over all Abigail continues to improve in all areas and is starting to gain ground on some of her missed milestones. Everyday is a joy to watch and hang out with...she is also a terror with her toys. I must have cleaned up after her no less than 15 times this weekend. She has now been going to bed in her own bed for over a week with only two tough nights. Its weird to be able to move about the main floor of the house with out having to worry about waking her up!
Abigail continues to expand her vocabulary and sentence structure, she plays with her friends now, and even voices opinions that are age appropriate. The cutest things recently is she is starting to realize that she is adorable. "pretty hair" she says while holding it out with both hands. "pretty dress" she says while spinning slowly.
My current opinion on the seizures, even though we are not seeing them, is they are still there at some level. Picture the spines of an alligator going thru the water and leaving little wakes rippling across the mirrored surface of a pond. They disappear just as quickly as they appear. We don't see the monster but we still know its there.
Over all Abigail continues to improve in all areas and is starting to gain ground on some of her missed milestones. Everyday is a joy to watch and hang out with...she is also a terror with her toys. I must have cleaned up after her no less than 15 times this weekend. She has now been going to bed in her own bed for over a week with only two tough nights. Its weird to be able to move about the main floor of the house with out having to worry about waking her up!
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