For not having posted in so long its been a crazy summer. About two days before her EEG I crashed my bike and tore up my shoulder. Typing was wee bit difficult there for a while. Also the summer was just insane.
Lets see ... updates in a nutshell.
24 Hour Video EEG: shows they have no idea what is going on. Current official diagnosis. Intractable Idiopathic Epilepsy. And she has not one, not two, not three....get ready for this...four! distinct seizure types. I was in the waiting room at Abigail's neurologist waiting for Melinda to show up with Abigail to discuss the video eeg and look at the finer points of 24 hours in a small room with a 4 year old who has 30+ wires super glued to her head and a 15 foot tether..did I mention my shoulder was separated? I over heard the consult between her doctor and another neurologist. They never mentioned her name but I am pretty sure they were talking about her. He kept asking questions like ..."how old is she?"...."did you try this"..."what did the MRI's show"..."Have you tried combining this med with this med"..."What did the video eeg show?"....I am paraphrasing a bit as I don't speak the necessary Latin to describe some of the things they were talking about. The last words he said to Abigail's Doctor were "I don't know". That makes 5 different Neurologists who have looked at Abigail's records only to get the same answer...I am thinking t-shirts with that printed on it are in order.
Abigail now takes Banzel a recently approved drug for lennox gastaut...she does not have lennox gastaut...but she has LG type seizures, that took several attempts for Abigails neurologist to explain to us as we are already freaked that she might develop that. Another mystery that can't seemed to be explained. With in two weeks of her starting the drug she started speaking more and engaging with the world more. We think the drug is helping with some of the back round seizures that we never see, which in turn is allowing her to speak and have more cognitive ability. There seems to be no side effects which is nice.
July 14th...impaction. Yep the dreaded constipation turned turd plug. We make the calls to the Keto Team and her regular doc...and get the advice to take her to the ER. 10 days of no poo...many caps of miralax...lots of milk of magnesia, and a mental scarring (Melinda and I) suppository later we had nothing. So Melinda and I clear our afternoon and head to the ER.
It would take a small book to detail our 6 hours of fun...here is the brief recap thru snippets of conversation with various nurses and doctors.
Arrival at ER: "Ketogenic Diet? the check in nurse asks? "Oh she must be Autistic" she says.
We explain her condition and explain the diet, including possible side effects of constipation and such, and hand them the piece of paper with everything we just said that the Keto Team at Standford gave us.
"Oh she must be constipated...the poor dear....she really needs fruit, vegetables, and lots of fiber" She says. This is not a good start...."yes" we acknowledge... "but she cannot have any of those things" and we smile nicely pushing the point that we are aware of what is going on and just really need her to poop.
Check in to our room: We make it into our room in fairly short order. Our nurse comes in.
She is very nice and gets Abigail to smile at her. She asks what is going on. We say Abigail has not pooed in 9+ days. "Oh my goodness" she exclaims, "That is not good!" and looks at us like we are ogres. "She really needs fruits and vegetables....and fiber!" she says. Melinda and I exchange looks and give the nurse our best...yes we know smiles. "Perchance you can get the doctor now...please" I ask? ( I don't really say Perchance )
We explain the condition and the diet ....again. And request sedation of some kind since Abigail is really cranky and pissed off that she can't poop. The nurse has never heard of west syndrome or intractable idiopathic epilepsy, but does her best to pretend she understands what is going on. She leaves to get the doctor.
Queue Jeopardy's sound track for 30 minutes.
Doctor arrives...alas we only have to describe the condition because thankfully he has heard of the diet. "Well lets get this little kiddo pooping he says" He orders up a nice oral sedation and a double enema. I ask about the suspension of the oral sedative having sugar? He says it is grape flavored...."oh crap" I think to myself. I ask to have them mix it with out the suspension. The nurse is not smiling anymore.
More Jeopardy sound track 30 minutes: The nurse arrives and in a slightly irritated voice says this is going to be very bitter and that Abigail will probably spit it out. I explain nicely that Abigail already takes about 14 oral syringe fulls of bitter medicine everyday and it won't be an issue. I take the oral syringe from the nurse and Abigail takes the medicine like the trooper she is. We ask how long it is going to take to work and she says 30 to 45 minutes...and that she would be back in 30 minutes and then leaves. Pretty sure the door slammed on her way out. Melinda and I exchange looks along the lines of "What is her problem?" 15 minutes later Abigail can't even sit up straight and is super goofy. The best description is that she was really drunk. It wears off 15 minutes later and she is back to her crabby self. The nurse shows up with a second nurse 25 minutes after that...55 minutes after we gave the dose to Abigail. She is holding two enema bottles and bucket....better to be prepared I guess. Abigail is no longer sedated...Melinda is firmly denying them access to letting them do the enema with out sedation and I am wavering. One look from Melinda and I am back on board...I feel bad for having strayed from the path. Both nurses are saying it will be OK...we are not agreeing with them. Nurse number 2 leaves in a huff muttering something about having a better use of her time. Nurse number 1 is turning red. We mention that the meds wore off 30 minutes ago. "Well why didn't you come get us!!!" she exclaims ...."Excuse me??" I ask. "You never said anything about coming to get you!" I say. Melinda is no longer speaking for fear of what might come out of her mouth as it might involve them summoning security. I force a smile at this point and ask for a moment alone with Melinda to discuss the situation. The nurse leaves...and I take a deep breath. Melinda makes it very clear that we are not doing the procedure with out sedation. I get the message.
Negotiations: I exit the room and quietly shut the door. There is security guard posted outside our room and the room next door...It takes a second to realize the security guard is there for the teenage run away in the next room who is clearly doing her best to piss off everyone in earshot. I smile and nod at the guard. He glowers in return. I make eye contact with the nurse and beckon her to a side hallway. She is doing her best to smile and all the other nurses at the station are staring at us. She stops smiling when I start talking and explain our position on wanting more sedation before the enema. "but they have to special mix the sedation with out the suspension...and...the pharmacy is all the way on the other side of the hospital...and I would have to walk all the way over there ....AGAIN!" Alas we have the reason for why she was cranky
before. "You and your wife need to compromise!" she adds. "You are right?" I say. She seems slightly taken a back by my agreeableness. "My understanding of a compromise is its takes both parties, so why don't you start first" She is puzzled by this. "Why don't you go ask the doctor to come see us so we can have another dose and someone will be back 15 minutes after we give it to her and then we will go from there" her arms cross and all traces of pleasantness have gone. She turn on her heel and stomps off, leaving me in alone in the hallway.
10 minutes later...a 30 second conversation with the doctor..and we have a new order for another dose of the sedative.
Take Two: We got a new nurse...a veritable sweet heart of a women who swoops in and doses Abigail with no problem. She chats nicely with us for a few minutes and promises to be back with the enemas after she warms them up ...and a bucket. 12 minutes later Abigail is singing the ABC's like a drunken sailor and moving her arms to her own internal sound track. The new nurse shows up with another new nurse and they proceed to double enema Abigail in less than 10 seconds. They pop a pull up on her and mention we might want to stand back. I won't gross you out with the details ....but you could have played golf with what came out as it was of equal size and hardness...lets just leave it at that. We cleaned Abigail up and vacate the now Toxic zone we had just created. They hand me a sheaf of papers on the way out and wish us luck.
Its not till later that evening when I am going through the paper work and drinking a nice cold beer that I read the line about how to avoid constipation..."Be sure to feed your child lots of Fruits, Vegetables, and Fiber to avoid constipation in the future!" in big bold letters. I add the document to the shred pile and reach for the second bottle of beer.
Wednesday, September 2, 2009
Wednesday, June 3, 2009
24 Hours of...
Heading in for a 24 Hour Video EEG for Miss A. today. Will update as we progress and have info on how she does. My guess is she will do great...which is what she always does! It was easier when she had this done at 6 months of age...being almost 4 will add an interesting dynamic to it.
Sunday, April 19, 2009
24 hours
We met with A's neurologist last week. Nothing really good or bad came out of the check up. She says the eeg is still showing seizures and there still seems to be more of a focus on the left side. Our next step is to schedule a 24 hour video eeg......24 Hour video eeg...that spells FUN!
The doctor is hoping that this will maybe provide more solid data on where the focus is for the seizures. Then we can make more educated decisions as to maybe referring Abigail to a surgery specialist so they can run more in depth testing with newer imaging technologies. This does not mean we would do surgery but it would allow us to have the deeper testing done. Its any ones guess at this point as to what the heck is going on. Sometime I just feel like we are playing darts...and I suck at darts.
As far as the diet goes... Abigail is doing great. When we lowered the calories to 1170 a day she now eats with little to no issues. I guess you really can live on sausage and cream! All of Abigail's teachers regularly comment on how much more focused she is. Katy, her nanny, regularly comments about how happy and goofy Abigail is. Even though we see 1 to 2 seizures a day she is continuing to improve and develop at a normal rate, she is even catching up in some areas. Her words are clearer and there are more of them. She can swear in context now. I would take the blame for that last one but maybe her birth father was a sailor.....we will never know....actually one of Abigail's favorite songs is the "Pirate Ship" song........hmmmmm interesting.
Abigail has discovered "Flair"...not just a little "Flair" but a lot of "Flair", and she like to flaunt her "Flair". I have pictures that I need to download from the camera and will do so soon. She is often caught wearing 3-4 necklaces and as many bracelets on her wrists and ankles as possible.
The doctor is hoping that this will maybe provide more solid data on where the focus is for the seizures. Then we can make more educated decisions as to maybe referring Abigail to a surgery specialist so they can run more in depth testing with newer imaging technologies. This does not mean we would do surgery but it would allow us to have the deeper testing done. Its any ones guess at this point as to what the heck is going on. Sometime I just feel like we are playing darts...and I suck at darts.
As far as the diet goes... Abigail is doing great. When we lowered the calories to 1170 a day she now eats with little to no issues. I guess you really can live on sausage and cream! All of Abigail's teachers regularly comment on how much more focused she is. Katy, her nanny, regularly comments about how happy and goofy Abigail is. Even though we see 1 to 2 seizures a day she is continuing to improve and develop at a normal rate, she is even catching up in some areas. Her words are clearer and there are more of them. She can swear in context now. I would take the blame for that last one but maybe her birth father was a sailor.....we will never know....actually one of Abigail's favorite songs is the "Pirate Ship" song........hmmmmm interesting.
Abigail has discovered "Flair"...not just a little "Flair" but a lot of "Flair", and she like to flaunt her "Flair". I have pictures that I need to download from the camera and will do so soon. She is often caught wearing 3-4 necklaces and as many bracelets on her wrists and ankles as possible.
Thursday, April 9, 2009
Geezz
Abigail did great at the appointment. She let them stick all the wires to her head and was quiet for the whole thing. And here I was thinking she was going to be a demon. They wanted her sleep deprived so they could see her brain activity while asleep are close to sleep. Abigail's type of Epilepsy occurs most often when she is tired or before and after going to sleep. And since the seizures make her tired its a bitch of a vicious cycle.
She even had a seizure for the test so they could have it on record. I have been through enough of these EEGs I can read the test in real time now. Right as she started her seizure I asked the tech to turn the monitor my way so I could watch. Sure enough the familiar pattern was present across all regions of her brain. I watched it taper off and saw some fairly normal EEG readings with mild blips here and there, not sure what regions the activity was in but there were occasional excessive activity. I am not an expert but it looked better than some of her past EEG's. Not great but not bad either.
I have some pictures of her being really cute while they were affixing all the wires but I am getting errors when I try and upload the images. I will try again later.
She even had a seizure for the test so they could have it on record. I have been through enough of these EEGs I can read the test in real time now. Right as she started her seizure I asked the tech to turn the monitor my way so I could watch. Sure enough the familiar pattern was present across all regions of her brain. I watched it taper off and saw some fairly normal EEG readings with mild blips here and there, not sure what regions the activity was in but there were occasional excessive activity. I am not an expert but it looked better than some of her past EEG's. Not great but not bad either.
I have some pictures of her being really cute while they were affixing all the wires but I am getting errors when I try and upload the images. I will try again later.
Sleep Deprived EEG
What wonderful genius thought this procedure up.
Keep the poor kid up 2 hours past their normal bedtime.
Wake the poor kid up 2 hours early.
Then hope they goto sleep while they adhere 30+ wires to their head.
Melinda has been up with Abigail since 4am and I will be with her at the EEG this morning.
The poor kid is trying to learn how to sleep while sitting upright or leaning against walls at this point. Last night she was practically begging to be allowed to go to sleep. There is some sort of perverse justice in denying her sleep and I am trying not to enjoy it to much.
I have a feeling the car ride to the hospital will involve her window open, music, and lots of "Hey You!! Wake Up!"
Anyways....were off to see the wizard.
Keep the poor kid up 2 hours past their normal bedtime.
Wake the poor kid up 2 hours early.
Then hope they goto sleep while they adhere 30+ wires to their head.
Melinda has been up with Abigail since 4am and I will be with her at the EEG this morning.
The poor kid is trying to learn how to sleep while sitting upright or leaning against walls at this point. Last night she was practically begging to be allowed to go to sleep. There is some sort of perverse justice in denying her sleep and I am trying not to enjoy it to much.
I have a feeling the car ride to the hospital will involve her window open, music, and lots of "Hey You!! Wake Up!"
Anyways....were off to see the wizard.
Tuesday, March 31, 2009
Sorry its been awhile.
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 :)
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 :)
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!
Monday, February 23, 2009
"Dip Dip"
Melinda is a genius. We all knew that already...but she really really is.
She figured out that Abigail might not be liking the food because it does not have enough flavor. I can not believe I missed this. It makes total sense. This is a child who used to eat Jalapeno flavored potato chips...and like it!!
The last couple of meals have been pretty easy. For hot dogs Melinda discovered a calorie free ketchup, that Abigail gets to dip her hot dog bits into..."Dip Dip?" she asks suddenly excited for dinner. There is calorie free syrup for her ketopancakes that she gets to "Dip Dip" the pieces into. We are also letting her sit with the food for a few minutes and start to eat on her own time. It took about 15 minutes this morning but once she got the first bite in she plowed right thru the plate of butter soaked egg's and cheese.
Abigail's communication skills are also improving 10 fold. This morning I asked her if she wanted to drink her cream. "No" she says..."No drink cream". Do you want me to put it in a syringe? I ask. "Yes" she says..."Cream in syringe please" she answers. I fumbled around looking for a syringe for about 30 seconds while I recovered from the shock that I just had a conversation with my daughter.
I was away for the weekend with friends and Melinda tried putting Abigail to bed in her own bed and left her alone to fall asleep. It worked really well Saturday night. So when I got home last night I asked her is she wanted to go to sleep on the bed in the office like she always does or if she wanted to go to bed in her own bed.
"My own bed!!!" she yells and bolts for the stairs. "I go night night in my own bed" she chants as she goes up the stairs. I put her giggling wiggling mass of three year old to bed, read her a story, turned out the light, and left her alone. I heard her playing with her mass of stuffed animals and her xylophone for about 20 minutes before she quieted down and dozed off. Melinda and I only had to go up for about 5 minutes each to get her to drift the rest of the way to sleep. We have been talking about putting her to bed in her own room for sometime but there was always something that kept us from trying it. We used to put her to bed on the office bed so we were close at hand if she needed us. She used to have 2 or 3 sets of seizures before going to sleep and would often wake up several times a night with them as well. We would carry her up to her own bed when we were ready for bed. I am going to miss her drifting off to sleep on my chest.
She figured out that Abigail might not be liking the food because it does not have enough flavor. I can not believe I missed this. It makes total sense. This is a child who used to eat Jalapeno flavored potato chips...and like it!!
The last couple of meals have been pretty easy. For hot dogs Melinda discovered a calorie free ketchup, that Abigail gets to dip her hot dog bits into..."Dip Dip?" she asks suddenly excited for dinner. There is calorie free syrup for her ketopancakes that she gets to "Dip Dip" the pieces into. We are also letting her sit with the food for a few minutes and start to eat on her own time. It took about 15 minutes this morning but once she got the first bite in she plowed right thru the plate of butter soaked egg's and cheese.
Abigail's communication skills are also improving 10 fold. This morning I asked her if she wanted to drink her cream. "No" she says..."No drink cream". Do you want me to put it in a syringe? I ask. "Yes" she says..."Cream in syringe please" she answers. I fumbled around looking for a syringe for about 30 seconds while I recovered from the shock that I just had a conversation with my daughter.
I was away for the weekend with friends and Melinda tried putting Abigail to bed in her own bed and left her alone to fall asleep. It worked really well Saturday night. So when I got home last night I asked her is she wanted to go to sleep on the bed in the office like she always does or if she wanted to go to bed in her own bed.
"My own bed!!!" she yells and bolts for the stairs. "I go night night in my own bed" she chants as she goes up the stairs. I put her giggling wiggling mass of three year old to bed, read her a story, turned out the light, and left her alone. I heard her playing with her mass of stuffed animals and her xylophone for about 20 minutes before she quieted down and dozed off. Melinda and I only had to go up for about 5 minutes each to get her to drift the rest of the way to sleep. We have been talking about putting her to bed in her own room for sometime but there was always something that kept us from trying it. We used to put her to bed on the office bed so we were close at hand if she needed us. She used to have 2 or 3 sets of seizures before going to sleep and would often wake up several times a night with them as well. We would carry her up to her own bed when we were ready for bed. I am going to miss her drifting off to sleep on my chest.
Thursday, February 19, 2009
Wednesday, February 18, 2009
Sorry its been an interesting week.
We have all been sick. Shelby first, then Abigail, then me, then Melinda. That was one nasty cold.
Sorry I have not posted recently as with the colds we also had a party for Shelby's 11th birthday this weekend. She had a great time having a few friends over for a movie and then a sleep over.
The girls all had pizza and Melinda even made a little Keto Pizza for Abigail that she loved.
One of Abigail's new phrases is..."I watch TV....I watch Jeopardy!". The kid loves Jeopardy what can I say. When you think about it from the aspects of the evil that is TV it is not that evil. It is just one man asking really weird questions to an even weirder group of people who have way to much free time or miss wired brains that soak up anything and everything they come in contact with. Hey its even educational.
Abigail continues to improve with her language skills, and I can now leave her at her Tuesday and Thursday preschool for over two hours with out having to be there. I might even try and schedule some client time during those hours now.
Last week we thought we might have been seeing more micro seizures, she would get quiet and look around like she did before, but they were really quick and the moments would pass. This week however things are looking better.
Abigail also slept thru the night with out waking up once for the first time in three years this last week. She used to wake up multiple times a night due to the seizures, Melinda and I take turns going in with her until she goes back to sleep. This more often than not would result in us going to sleep as well. How many three years do you know that have a queen sized bed :) I hope she continues to improve her sleep habits.
Sorry I have not posted recently as with the colds we also had a party for Shelby's 11th birthday this weekend. She had a great time having a few friends over for a movie and then a sleep over.
The girls all had pizza and Melinda even made a little Keto Pizza for Abigail that she loved.
One of Abigail's new phrases is..."I watch TV....I watch Jeopardy!". The kid loves Jeopardy what can I say. When you think about it from the aspects of the evil that is TV it is not that evil. It is just one man asking really weird questions to an even weirder group of people who have way to much free time or miss wired brains that soak up anything and everything they come in contact with. Hey its even educational.
Abigail continues to improve with her language skills, and I can now leave her at her Tuesday and Thursday preschool for over two hours with out having to be there. I might even try and schedule some client time during those hours now.
Last week we thought we might have been seeing more micro seizures, she would get quiet and look around like she did before, but they were really quick and the moments would pass. This week however things are looking better.
Abigail also slept thru the night with out waking up once for the first time in three years this last week. She used to wake up multiple times a night due to the seizures, Melinda and I take turns going in with her until she goes back to sleep. This more often than not would result in us going to sleep as well. How many three years do you know that have a queen sized bed :) I hope she continues to improve her sleep habits.
Tuesday, February 10, 2009
were off to see the neurologist, the wonderful wonderful neurologist.
We took Abigail to see her regular neurologist today. She was very impressed with Abigail's improvements in all areas, she even got a big hug from Abigail as well. That was the first time A ever did that. We discussed her current medication, which is the Vigabatrin, and the consensus is to wait another two months before messing with the dosage. Things are going so well that we just don't want to start changing anything. Abigail's neurologist is normally very formal when we deal with her, she is good neurologist, but I think she keeps a very stoic front, which I imagine helps in dealing with some of her more stressful patients. However after seeing Abigail today she was smiling and her overall demeanor was almost one of relief, I even found out she has a teenage child. Who knew? About a year ago she was trying to find away to let us know that she thought that Abigail might be autistic, this base on very obvious autistic markers that Abigail had at the time, no direct eye contact, lack of verbal skills, lack of interest in her surroundings. The thing is......is she would only do these when she was super tired, which for some reason seemed to be during her appointments with the neurologist. The rest of the time she was a loving, joyful, I am going to squeeze your head till it pops or my shoulders dislocate sort of child. So for the doctor to be finally able to see Abigail at her best and not have to rely on our reports, it must be a relief to watch Abigail talking, playing, hugging normally, and being an overall cute 3.5 year old with french braids.
We continue to have some serious issues with getting Abigail to eat her regular meals. Dinner tonight wasn't to bad, Melinda made a chocolate milkshake that once we got the first sip in her she just loved. It was chocolate protein powder, cream, ice, and sugar free maple syrup. When we handed her the cup she looked at us like we were crazy, we had to bribe her to take the first sip but once she did....man it was all about the cup. She downed it all down in less than 2 minutes.
I miss Abigail's Fierce Hugs.
We continue to have some serious issues with getting Abigail to eat her regular meals. Dinner tonight wasn't to bad, Melinda made a chocolate milkshake that once we got the first sip in her she just loved. It was chocolate protein powder, cream, ice, and sugar free maple syrup. When we handed her the cup she looked at us like we were crazy, we had to bribe her to take the first sip but once she did....man it was all about the cup. She downed it all down in less than 2 minutes.
I miss Abigail's Fierce Hugs.
Saturday, February 7, 2009
Just what is normal.
Its either getting easier or we are getting used to it.
Maybe its a little of both. Routines are settling in and a new "normal" is being established. Abigail continues to be stubborn at meal time but will eventually eat her meal. Melinda continues to find new and interesting meals to keep Abigail more willing to eat.
Last night was one of the first times where we did something as a "normal" family and there were no melt downs, tantrums, or yelling. It was nothing special...we went for a spontaneous walk around the "block" (We don't have sidewalks where we live so the "block" is really a gravel road, and two really long paved streets).
We were outside trying to get Abigail to ride a training bike, one of those bikes with no pedals or cranks, just two wheels, a low slung frame, and a set of handlebars. Shelby was zipping up and down the street on her razor scooter and Abigail would yell "Run Run" every time she went by, which would make Melinda or I have to run while crouching and pushing Abigail on the bike with her feet making running motions. Its really cute, but murder on your back. After we were done riding Abigail decided it was time for us all to go for a walk, she walked the entire distance around the block, maybe a half mile, and was watching everything. When we got home Melinda and I sat at the table and talked, Abigail played quietly with various toys and Shelby played on the computer while talking to a friend on the phone....it was all very....normal.
Just what is normal? I really don't know. Since Abigails seizures have stopped, every day is different from what previous days have brought. I am not sure where we are going or when we will get there but the ride has changed from what it used to be, and what we used to think it would be. It has been almost a month since Abigails seizures stopped (I just knocked on some wood) and we are, just now, starting to allow ourselves to hope a little bit more each day that we all will see and end to her seizures.
Maybe its a little of both. Routines are settling in and a new "normal" is being established. Abigail continues to be stubborn at meal time but will eventually eat her meal. Melinda continues to find new and interesting meals to keep Abigail more willing to eat.
Last night was one of the first times where we did something as a "normal" family and there were no melt downs, tantrums, or yelling. It was nothing special...we went for a spontaneous walk around the "block" (We don't have sidewalks where we live so the "block" is really a gravel road, and two really long paved streets).
We were outside trying to get Abigail to ride a training bike, one of those bikes with no pedals or cranks, just two wheels, a low slung frame, and a set of handlebars. Shelby was zipping up and down the street on her razor scooter and Abigail would yell "Run Run" every time she went by, which would make Melinda or I have to run while crouching and pushing Abigail on the bike with her feet making running motions. Its really cute, but murder on your back. After we were done riding Abigail decided it was time for us all to go for a walk, she walked the entire distance around the block, maybe a half mile, and was watching everything. When we got home Melinda and I sat at the table and talked, Abigail played quietly with various toys and Shelby played on the computer while talking to a friend on the phone....it was all very....normal.
Just what is normal? I really don't know. Since Abigails seizures have stopped, every day is different from what previous days have brought. I am not sure where we are going or when we will get there but the ride has changed from what it used to be, and what we used to think it would be. It has been almost a month since Abigails seizures stopped (I just knocked on some wood) and we are, just now, starting to allow ourselves to hope a little bit more each day that we all will see and end to her seizures.
Tuesday, February 3, 2009
Stickers
Abigail is still really into blocks. However now she is crazy about stickers...stickers on little pieces of paper, on the table, the underside of her little while stool, my head. She walks around with two blocks and a handful of stickers and has never been happier.
Melinda made a chocolate substitute the other day! Its coconut oil, splenda, and chocolate protein powder. You freeze it and viola you have chocolate that goes down like fudge! Not only that, its also meal replacement and mild laxative in one attractive package! Coconut oil is a natural laxative. I am going to have to come up with a quick blurb for a commercial for that product....the possibilities are endless.
Melinda made a chocolate substitute the other day! Its coconut oil, splenda, and chocolate protein powder. You freeze it and viola you have chocolate that goes down like fudge! Not only that, its also meal replacement and mild laxative in one attractive package! Coconut oil is a natural laxative. I am going to have to come up with a quick blurb for a commercial for that product....the possibilities are endless.
Sunday, February 1, 2009
Sure why not.
It used to be that Abigail would walk for everyone except me. I used to carry her everywhere and would get brief respites of rest at say bank counters, the post office counter, or random bench's. I could even periodically get her to walk after pleading on behalf of my left arm. Abigail seemed to have a sixth sense as to when the last bit of feeling would come back into my arm and ask to be carried again. I think it comes down to the fact that she knows I am a sucker when it comes to my girls...."More carry me daddy!!!?" Abigails asks. Sure why not. "May I watch more TV dad?" Shelby asks. Sure why not "Can I have the shiny red convertible Dad" Both children will ask when they are old enough to drive. I will fight the words from escaping my mouth, but they will slip out and I will say "Sure why not".
The point of all of this is that Abigail now no longer wants me to carry her everywhere. We walk hand in hand, slowly but at a steady pace, almost everywhere now. She even knows to run fast when we cross streets or are in parking lots to keep up with my quickened pace. Her little fingers firmly grasping my left hand with a kind of frightened determination, as if finally wanting to explore the world on her own two feet, but still wanting that reassuring connection to me.
The point of all of this is that Abigail now no longer wants me to carry her everywhere. We walk hand in hand, slowly but at a steady pace, almost everywhere now. She even knows to run fast when we cross streets or are in parking lots to keep up with my quickened pace. Her little fingers firmly grasping my left hand with a kind of frightened determination, as if finally wanting to explore the world on her own two feet, but still wanting that reassuring connection to me.
Thursday, January 29, 2009
Kids say the darndest things.
"Does Abigail have a mommy?" Those exact words came out of one of Abigail's classmates mouths this afternoon. Since she has never met Melinda, I understand the 4 year old logic. This was also the same precocious 4 year who uttered the famous line.."Does Abigail speak English"? Morgans mother was mortified but relaxed when I almost choked laughing so hard.
I spend Tuesday and Thursday afternoons at Abigail's preschool so she can have social interaction with other kids her age. I play the role of a third set of hands to keep Abigail out of trouble. Back in the fall we had hoped she would be able to spend 2 or 3 hours at preschool with out one of us there but after 30 minutes it became clear that was not going to work due to her developmental delays and lack of speech skills. Melinda and I feel it is important that Abigail get the social contact, and since I have the more flexible schedule I get to spend my Tuesday and Thursday afternoons hanging out with 13 three to four year olds.
I spend Tuesday and Thursday afternoons at Abigail's preschool so she can have social interaction with other kids her age. I play the role of a third set of hands to keep Abigail out of trouble. Back in the fall we had hoped she would be able to spend 2 or 3 hours at preschool with out one of us there but after 30 minutes it became clear that was not going to work due to her developmental delays and lack of speech skills. Melinda and I feel it is important that Abigail get the social contact, and since I have the more flexible schedule I get to spend my Tuesday and Thursday afternoons hanging out with 13 three to four year olds.
I really enjoy it...a lot!
When I dropped Abigail off today, Will and Heather shooed me away and told me to come back in an hour. One tall mocha, one depressing newspaper, and a stroll thru the game section at Blockbusters later, I walked into the preschool not knowing what to expect....she didn't even know I had left! She had spent the hour playing at the sand table quietly. To think I was actually worried while I had been gone. I missed playing with the playdoh, popsicle sticks, and reading to a pile of kids. As happy as I am that I can leave Abigail the preschool for an extended period of time now I am really going to miss being there.
We received a great list of ketogenic recipes that don't require drinking the cream one of the followers of this blog ...Thanks Fawn!!! We really look forward to trying them out as Abigail does not enjoy drinking the cream anymore.
Abigail had another stupendous day! Lots of fun play times and interactions. Her big sister, Shelby, even commented on how nice it is to play with Abigail now.
Tuesday, January 27, 2009
So sad :(
It was the saddest sound I had ever heard. Melinda was feeding Abigail her new favorite dish, (the shiritaki noodles with cream sauce) when it was all done Abigail picked up the bowl then turned to look at Melinda and I, and started to cry...."More" she cried. "MORE PASTA!!!" she insisted. Tears were shed, screams were wrought. It got even better when we tried to make her drink her cream.
We have lowered her calories to 1300 per day and it seems to be finally helping. She is hungry come meal time and seems to get enough to eat after the meals. She more often than not will ask for more but can be distracted to think about something else. That being said she really really likes the pasta dish Melinda has worked up.
I think Abigail has had it with the whipping cream, not that I blame her, we regularly have to administer it now with an oral syringe.
Abigail had a great day, lots of play time, and she had fun at both her morning and afternoon preschools. I managed to slip out for some coffee this afternoon, during class, and she never even noticed I was gone. Her afternoon teachers have said that we might try extended time periods with me out of the room to see how she does. In the two hours we were at class today she never came looking for me once, well there was the brief visit she gave me at the arts and crafts table where she destroyed the Popsicle stick creation I had spent 30 minutes gluing together, piece by painstaking piece...I had forgotten how long Elmer's Glue takes to dry.
We are going back and forth with her neurologist team in California and her pediatrician here in Portland about the breathing change Abigail has started doing. They are short rapid breaths...almost pants and she does it quite often. Her pediatrician says it due to being in Ketosis and that if she stays alert and active that she should be fine. We are hoping to hear how the converstation between her Pediatrician and the Neurologist goes to see if they want any addtional tests. We test her urine at least once a day and the dip stick only gives us so much information.
Abigail is so much more aware of everything during the day it is amazing to watch her watch me, Melinda, Shelby, her friends, and Teachers. She is learning at such a rapid rate and picking up new words every day. We used to only see one or two multiple word sets per day. Now she is regularly making sentences and asking for things she wants.
We have lowered her calories to 1300 per day and it seems to be finally helping. She is hungry come meal time and seems to get enough to eat after the meals. She more often than not will ask for more but can be distracted to think about something else. That being said she really really likes the pasta dish Melinda has worked up.
I think Abigail has had it with the whipping cream, not that I blame her, we regularly have to administer it now with an oral syringe.
Abigail had a great day, lots of play time, and she had fun at both her morning and afternoon preschools. I managed to slip out for some coffee this afternoon, during class, and she never even noticed I was gone. Her afternoon teachers have said that we might try extended time periods with me out of the room to see how she does. In the two hours we were at class today she never came looking for me once, well there was the brief visit she gave me at the arts and crafts table where she destroyed the Popsicle stick creation I had spent 30 minutes gluing together, piece by painstaking piece...I had forgotten how long Elmer's Glue takes to dry.
We are going back and forth with her neurologist team in California and her pediatrician here in Portland about the breathing change Abigail has started doing. They are short rapid breaths...almost pants and she does it quite often. Her pediatrician says it due to being in Ketosis and that if she stays alert and active that she should be fine. We are hoping to hear how the converstation between her Pediatrician and the Neurologist goes to see if they want any addtional tests. We test her urine at least once a day and the dip stick only gives us so much information.
Abigail is so much more aware of everything during the day it is amazing to watch her watch me, Melinda, Shelby, her friends, and Teachers. She is learning at such a rapid rate and picking up new words every day. We used to only see one or two multiple word sets per day. Now she is regularly making sentences and asking for things she wants.
Monday, January 26, 2009
Getting there...
We are finally getting there with meals. They are getting a little easier to get into Abigail. Melinda has perfected the Shiritaki noodle dish to the point where Abigail will chant..."Pasta, Pasta, Pasta" (Every time she does it I hear Al Pacino's voice yelling Attica...Attica...Attica!). We have had two days now where it hasn't been a major issue to make sure she gets her daily calories. We are cutting the Calories back again to about 1300 a day with a minor drop in protein. We were worried we were not going to be able to drop the protein with the calories as it would have been almost impossible to keep the 4:1 ratio with the higher protein and the less calories. For the first time in three weeks Abigail has asked for more dinner which is actually a good sign.
Abigail had a great day, she went to the children's museum and painted her face(I have a picture I need to download of that)She interacted with the other kids at an appropriate age level and just had an over great time playing with all the toys.
Overall she is doing well, we are not seeing any seizures, just some periodic weird breathing that we are going to research and maybe ask the doctor about, but nothing that looks even remotely what her seizures used to look like. We have an appointment on the 11th of February with her local Neurologist and we may discuss cutting back her vigabatrin if everything continues to look good!
Sleep still sucks, but either we are getting used to it, or it might be getting better for her really really slowly. I have doubled my caffeine intake since the 1st of the year...not your normal New Years resolution. Thank goodness I am already in shape or I am sure I would be in trouble.
Abigail had a great day, she went to the children's museum and painted her face(I have a picture I need to download of that)She interacted with the other kids at an appropriate age level and just had an over great time playing with all the toys.
Overall she is doing well, we are not seeing any seizures, just some periodic weird breathing that we are going to research and maybe ask the doctor about, but nothing that looks even remotely what her seizures used to look like. We have an appointment on the 11th of February with her local Neurologist and we may discuss cutting back her vigabatrin if everything continues to look good!
Sleep still sucks, but either we are getting used to it, or it might be getting better for her really really slowly. I have doubled my caffeine intake since the 1st of the year...not your normal New Years resolution. Thank goodness I am already in shape or I am sure I would be in trouble.
Sunday, January 25, 2009
Found this on the camera
I love finding pictures on the camera that Katy (Abigails nanny) has taken.
Saturday, January 24, 2009
Duplos...OMG!
Abigail had a good day today! She discovered the Shirataki noodles with egg, butter, and cheese! I haven't seen her eat that fast in weeks! She kept asking for more!!!
Since Abigail now loves blocks so much Melinda bought 1000 off of craigslist for $40!! They needed to be washed as they were owned by several little boys before us! They fill the tub 12" deep!! Abigail keeps wanting to go in the bathroom where they are now drying to play with them!
Since Abigail now loves blocks so much Melinda bought 1000 off of craigslist for $40!! They needed to be washed as they were owned by several little boys before us! They fill the tub 12" deep!! Abigail keeps wanting to go in the bathroom where they are now drying to play with them!
Friday, January 23, 2009
I want to play with your watch...
Has to be one of the longest sentences I have ever heard Abigail say. Then the old Abigail came shining thru with a high pitched scream, when I did not respond quick enough due to the utter and complete shock I was trying to blink thru. When she was done with my watch, she handed it back to me and said "All done watch, daddy take".
Neither Melinda nor I have seen anything even remotely close to a seizure in over two days. We are still holding our breath and will continue to do so for a few more weeks as we have seen this before with some of the other drugs she has taken before. The main difference now is the rate at which she is catching up. Her age appropriate play and level of alertness is amazing. I feel that if she can be seizure free for at least a month then we may very well be onto something!
Food continues to be a challenge and more often than not we have to resort to shakes to get the calories in her. We had success tonight with her new favorite, that being the ketocal pancake!
Melinda emailed Abagail's dietitian to find out if we can lower the calories again because Abigail has actually gained 1.5+ pounds since leaving the hospital two weeks ago, one of the side effects of this diet is you loose weight, not gain it. We both feel if she were hungrier we would not have the issues with food we do now. She is sleeping moderately better which is a blessing as Melinda and I are slowly but surely catching up on sleep.
Abigail is all about blocks of any kind and has two sizes of Lego's and a hoard of bristle blocks that she plays with constantly. When we leave the house now she has to have three or four to entertain herself while driving around.
The roller coaster is slowing down but I have a feeling the designers have at a couple more loop de loops for us before we get of this crazy ride :)
Neither Melinda nor I have seen anything even remotely close to a seizure in over two days. We are still holding our breath and will continue to do so for a few more weeks as we have seen this before with some of the other drugs she has taken before. The main difference now is the rate at which she is catching up. Her age appropriate play and level of alertness is amazing. I feel that if she can be seizure free for at least a month then we may very well be onto something!
Food continues to be a challenge and more often than not we have to resort to shakes to get the calories in her. We had success tonight with her new favorite, that being the ketocal pancake!
Melinda emailed Abagail's dietitian to find out if we can lower the calories again because Abigail has actually gained 1.5+ pounds since leaving the hospital two weeks ago, one of the side effects of this diet is you loose weight, not gain it. We both feel if she were hungrier we would not have the issues with food we do now. She is sleeping moderately better which is a blessing as Melinda and I are slowly but surely catching up on sleep.
Abigail is all about blocks of any kind and has two sizes of Lego's and a hoard of bristle blocks that she plays with constantly. When we leave the house now she has to have three or four to entertain herself while driving around.
The roller coaster is slowing down but I have a feeling the designers have at a couple more loop de loops for us before we get of this crazy ride :)
Wednesday, January 21, 2009
Where does she get if from.....
She is so stubborn! I have no idea where it comes from. Melinda and I are like blades of grass in the wind we bend so easily and freely. (read sarcasm)
I gave Abigail her dinner tonight and got this look:
I swear she is thinking, "What!...are you kidding me...freaking muffins???"
We settled on the almond flour cookies and 44g's of cream. I have never seen a 3 year old be so grudgingly about something. I swear she was rolling her eyes at me...a trick she learned from her soon to be 11 year old sister no doubt.
Abigail is all about blocks and legos right now, she spends hours assembling small components that are later assembled into larger structures. The tower above was a partnership with her sister. I have a feeling she will be an Ikea design specialist when she grows up. Designing something that can be assembled with minimal cursing, blood letting, and only one small allen wrench in two hours or less.
She is back in her morning preschool and is adjusting well. Each day she gets better at being a part of the group again. She had a great time at her afternoon preschool yesterday and is looking forward to going tomorrow afternoon. Melinda is taking her to see her pediatrician tomorrow for vaccinations and a regular check up. Just normal stuff.
Over all she is doing well, we still have ongoing sleep and crankiness issues right now but I hope to see those get better soon.
I gave Abigail her dinner tonight and got this look:
I swear she is thinking, "What!...are you kidding me...freaking muffins???"
We settled on the almond flour cookies and 44g's of cream. I have never seen a 3 year old be so grudgingly about something. I swear she was rolling her eyes at me...a trick she learned from her soon to be 11 year old sister no doubt.
Abigail is all about blocks and legos right now, she spends hours assembling small components that are later assembled into larger structures. The tower above was a partnership with her sister. I have a feeling she will be an Ikea design specialist when she grows up. Designing something that can be assembled with minimal cursing, blood letting, and only one small allen wrench in two hours or less.
She is back in her morning preschool and is adjusting well. Each day she gets better at being a part of the group again. She had a great time at her afternoon preschool yesterday and is looking forward to going tomorrow afternoon. Melinda is taking her to see her pediatrician tomorrow for vaccinations and a regular check up. Just normal stuff.
Over all she is doing well, we still have ongoing sleep and crankiness issues right now but I hope to see those get better soon.
Monday, January 19, 2009
Oh man she is cute.
Abigail has started to take more of an interest in dress up and costuming! She got a hold of my running hat in the picture to the left...its was just so darn cute that I managed not to think about when the last time was that I washed that hat!
Abigail is doing really well, she continues to explore the world around her. She is interested in everything and everyone and listens to you. Her ability to follow direction is amazing.
Melinda's Mom Terri took Abigail and Shelby for a few hours yesterday, allowing us to go have a child free lunch and shopping time. It was very nice and we really appreciated it. Terri and Jim both commented on the difference in Abigail yesterday. The were impressed by how attentive and calm she was, as well as her ability to focus on what ever she would be playing with.
The biggest issue we are having right now is getting her to eat solid food. She really likes the shakes, so I guess as long as the ratio is right and she is getting what she needs then we will go with it for now. She is also not sleeping well, we are not sure what is going on, but she wakes up several times a night very upset and not willing to go back to sleep. We don't think its a seizure but she is clearly either not feeling well or is having bad dreams, I hope it smooths out soon.
Its been a crazy two weeks and I think things are starting to level out a little bit. We are adjusting her meal cycle to breakfast, snack, lunch, snack, and dinner. We feel this will work out well with snack times at her two schools. We really want her to stay social with her friends and taking her away at snack time would really affect that.
Abigail gets to go back to her Monday, Tuesday, Wednesday morning preschool tomorrow and I am excited to see how she does. Her snack will be 6g's of the fried cheese and 41g's of whipping cream. Its a pretty decent portion so I think she will be OK.
I could be biased...but she is really cute.
Sunday, January 18, 2009
Saturday, January 17, 2009
Peek a Boo
I feel like we are playing peek a boo with these seizures. I know she still has them but they are not like they were before.
Is it a seizure? Is it not a seizure? The head jerk and upper body sagging that we used to see is gone but there are times where she is clearly having what I would have to call an "episode", her breathing falls into line of what it used to be when she had a seizure before the diet, she wrings her hands, and looks confused. No head nod or other tells. She is fine in about 2 minutes and carries on like nothing happens. This only happens once or twice a day. Heck, I get confused and wring my hands at least once a day too, the sobbing and rocking in a fetal position maybe every other day.
Everyday Abigail continues to improve and has started gaining ground on some of her developmental delays. She speaks in complete sentences, plays with her sister and by herself, and is more curious about the world around her. She apparently has decided that nap time is for the weak, which makes me sad, because it was always a good excuse for me to take a nap as well.
Words of the day are "Fried Cheese" made by the Specialty Cheese Company, look it up and buy some. This stuff rocks! I am glad it comes in little packets other wise I would be eating it by the pound and there would be none left for Abigail! Its high in protein and fat; and it eats like a nice crunchy chip. 12g's of this wondrous cheese and 44g's of cream make for a nice 10:30 or 2:30 lunch for Abigail.
We are also modifying recipes so that all the food she can feed herself, her blossoming independence conflicts with us spreading butter or cream cheese on each bite of food.
Is it a seizure? Is it not a seizure? The head jerk and upper body sagging that we used to see is gone but there are times where she is clearly having what I would have to call an "episode", her breathing falls into line of what it used to be when she had a seizure before the diet, she wrings her hands, and looks confused. No head nod or other tells. She is fine in about 2 minutes and carries on like nothing happens. This only happens once or twice a day. Heck, I get confused and wring my hands at least once a day too, the sobbing and rocking in a fetal position maybe every other day.
Everyday Abigail continues to improve and has started gaining ground on some of her developmental delays. She speaks in complete sentences, plays with her sister and by herself, and is more curious about the world around her. She apparently has decided that nap time is for the weak, which makes me sad, because it was always a good excuse for me to take a nap as well.
Words of the day are "Fried Cheese" made by the Specialty Cheese Company, look it up and buy some. This stuff rocks! I am glad it comes in little packets other wise I would be eating it by the pound and there would be none left for Abigail! Its high in protein and fat; and it eats like a nice crunchy chip. 12g's of this wondrous cheese and 44g's of cream make for a nice 10:30 or 2:30 lunch for Abigail.
We are also modifying recipes so that all the food she can feed herself, her blossoming independence conflicts with us spreading butter or cream cheese on each bite of food.
Friday, January 16, 2009
Giant Frogs!
Yesterday was the best day ever...until about 6pm.
Good stuff first! Abigail was happy, calm, and was like a normal 3 year old. We went to Small Friends preschool and she greeted all her friends, played by herself, painted, worked on different art projects and was just a joy to watch. Her teachers were floored, the other parents were amazed. Its like Abigail has woken up from a two year nap and is finally engaging with the world! When we got home we played with large legos and baskets of other toys for almost 2 hours. It was great to be interacting with her on such a personal level.
At about 6pm Melinda says, "Does she feel warm to you?" one kiss test later I am digging out the digital thermometer and sticking it in Abigails arm pit. It jumps to 99 from the gun and climbs to 99.9...add a degree for armpits and she was at 100.9. We were at a loss as to what to do about the Tylenol to reduce the fever. All her old childrens meds have sugar, and no one makes tylenol in less than 500mg's she only needed regular strength. We could have ground up one 250mg tablet and put it in water for her. But no, we live in America where everything has to be "Super Sized" or "Extra Strength". Nothing is more frustrating than going thru the name brands and off name brands at 10pm at the store trying to find "regular" strength Tylenol. Melinda placed a call to the pediatrition on call while I was at the store and gave them my cell number. I was rescued by the doctor telling me to just use 200mg of Motrin ground up in water .......or use 250mg Tylenol suppositories....the only drug medium, not left, nor wanted to be "Super Sized". Based on my long silence after that recommendation, the doctor said the Motrin would be fine and would do the trick.
Abigail did not go to sleep last night until about 11:30 or 12, she was so miserable. She only had the cream from her afternoon lunch and we had to use a Keto Shake for dinner as she refuse her solid food due to how she felt.
This morning we could barely rouse her and once we did she could barely stand on her own. We decided to skip a solid food breakfast and went straight to a Keto Shake. The fever was gone which was good news, however she could not hold the sippy cup nor would she open her mouth to drink. I ended up having to open her mouth for her, hold the cup in place, and talk her thru drinking. Once she had a few sips she mustered up enough energy to drink more. At about the half way point she was able to lift her arms and hold the sippy cup on her own and finish the shake. She was able to situp and smile a huge warm smile at Melinda and I, as well as climb down from the bed and quietly demand that as long as both of us were standing around, at the very least one of us could read to her. By the time Katy got there she was hopping around and feeling much better.
Abigail had a great day...ate lunch one and lunch two, as well as a nice trip to the park to enjoy the sun.
One of my clients bought Abigail a stuffed frog! Its very soft and squeezable, that being one of Abigails favorite activities....squeezing hands, heads, faces, exposed pieces of flesh...those little fingers really hurt! She was not sure what to think of it at first but now she loves it!!!
Good stuff first! Abigail was happy, calm, and was like a normal 3 year old. We went to Small Friends preschool and she greeted all her friends, played by herself, painted, worked on different art projects and was just a joy to watch. Her teachers were floored, the other parents were amazed. Its like Abigail has woken up from a two year nap and is finally engaging with the world! When we got home we played with large legos and baskets of other toys for almost 2 hours. It was great to be interacting with her on such a personal level.
At about 6pm Melinda says, "Does she feel warm to you?" one kiss test later I am digging out the digital thermometer and sticking it in Abigails arm pit. It jumps to 99 from the gun and climbs to 99.9...add a degree for armpits and she was at 100.9. We were at a loss as to what to do about the Tylenol to reduce the fever. All her old childrens meds have sugar, and no one makes tylenol in less than 500mg's she only needed regular strength. We could have ground up one 250mg tablet and put it in water for her. But no, we live in America where everything has to be "Super Sized" or "Extra Strength". Nothing is more frustrating than going thru the name brands and off name brands at 10pm at the store trying to find "regular" strength Tylenol. Melinda placed a call to the pediatrition on call while I was at the store and gave them my cell number. I was rescued by the doctor telling me to just use 200mg of Motrin ground up in water .......or use 250mg Tylenol suppositories....the only drug medium, not left, nor wanted to be "Super Sized". Based on my long silence after that recommendation, the doctor said the Motrin would be fine and would do the trick.
Abigail did not go to sleep last night until about 11:30 or 12, she was so miserable. She only had the cream from her afternoon lunch and we had to use a Keto Shake for dinner as she refuse her solid food due to how she felt.
This morning we could barely rouse her and once we did she could barely stand on her own. We decided to skip a solid food breakfast and went straight to a Keto Shake. The fever was gone which was good news, however she could not hold the sippy cup nor would she open her mouth to drink. I ended up having to open her mouth for her, hold the cup in place, and talk her thru drinking. Once she had a few sips she mustered up enough energy to drink more. At about the half way point she was able to lift her arms and hold the sippy cup on her own and finish the shake. She was able to situp and smile a huge warm smile at Melinda and I, as well as climb down from the bed and quietly demand that as long as both of us were standing around, at the very least one of us could read to her. By the time Katy got there she was hopping around and feeling much better.
Abigail had a great day...ate lunch one and lunch two, as well as a nice trip to the park to enjoy the sun.
One of my clients bought Abigail a stuffed frog! Its very soft and squeezable, that being one of Abigails favorite activities....squeezing hands, heads, faces, exposed pieces of flesh...those little fingers really hurt! She was not sure what to think of it at first but now she loves it!!!
Wednesday, January 14, 2009
Moving right along
Abigail continues to amaze me as to how tough she is and is moving right along in getting back to her normal happy self. My wonderful wife is a kick butt researcher, she found a great recipe and made KetoCal muffins tonight for Abigail. Abigail loved them. She is still more emotional than normal but she is more aware of her surroundings these days and is engaged in everything she does.Please excuse the messy kitchen table that doubles as my desk I try to keep it clear but it is a losing battle!
That's Shelby in the back ground suffering thru 5th grade math homework.
The best way to describe the muffins as very dense corn bread slathered in butter.....mmmmm buttttterrrrr
Tuesday, January 13, 2009
Eggsellent
Much better day.
Better food consumption, who wouldn't like pork rinds with butter on them! And less temper issues.
I want to know who designed this roller coaster ride we are on right now so I can send a complaint letter.
Melinda found a recipe for a pancake from the people who make the Keto Cal shake mix! Its an almost perfect 4:1 ratio. It produced a 6" pancake (that's 15cm for any reader outside the US :-) )
It was the fastest I have seen Abigail eat in over a week! She loved it and keeps asking for more, she got every last bit!! I would compare it to a Dutch Baby pancake. Dense and eggy. All that was missing was a bath of pure maple syrup...which of course I know she can't have. We will try the melted butter with sugar free flavoring in it as a syrup next time.
Abigail had a great time at her Tuesday/Thursday afternoon preschool. We only went for an hour but she was excited to see all her friends. She wouldn't stop talking about "Teacher Will" and "Teacher Heather" on the way there. As soon as we walked in the door she got all shy and quiet. It was rather cute.
Reset Button
In my line of work as an IT consultant nothing strikes fear into me quite like someone saying "I hit the reset button....just like you told me not to". These usually end up taking 8 to 9 hours on the phone getting it all working again.
I hit the internal reset button last night and got 8 hours of good sleep. Red lined frustration levels are now in the clear, all pressure relief valves are with in normal parameters.
Abigail was so happy to see her nanny, Katy, for the first time in two weeks this morning. She ran to Katy and gave her a gigantic hug and kiss and then proceeded to try and convince Katy it was time to go somewhere...anywhere...just get her away from these crazy people who claim to be her parents. Katy and Abigail go on adventures everyday! Parks, OMSI, Zoo, Target, the Bank, anywhere but here is always exciting to Abigail! I have a feeling Abigail was just getting fed up with being cooped up with the same people everyday, all day.
Melinda and I are going to try and get Abigail's daily routine as back to normal as we can. We both feel this will help her have a sense of normalcy. I am going to take her to preschool for a little bit this afternoon, after she wakes up, and see how she does. I am planning to take her out before snack time at 2:30 and will continue to do so until she is fully adjusted to the diet. She has a special preschool thru the county on Monday, Tuesday, and Wednesday mornings it is thru the the Portland Public Schools and provides speech therapy as well as cognitive and physical therapy to help with the learning and speech delays she has as a direct result of the epilepsy. Her teachers are terrific in both schools and Abigail's enjoys going immensely. We are not sure how we are going to handle snacks at the morning preschool yet, Abigail's diet regimen does not account for, or allow for snacks. I am going to call and discuss options this afternoon with the director.
Abigail's had a great morning with Katy, they went to the park and enjoyed the first sunny day in weeks here in Portland.
We are still seeing seizures, only one or two per day. The ones we are seeing however are barely perceptible with little to no head nodding. Abigail remains cognitively present and they pass quickly. The results have been so quick and positive that it makes everything else that is going on worth it! I hope it continues so we can try and cut back on the Vigabatrin in the next 4 weeks or so!
I want to say thanks to everyone for the good thoughts and support over the last week as we get the diet started, it mean a lot to Melinda and I!!!
I hit the internal reset button last night and got 8 hours of good sleep. Red lined frustration levels are now in the clear, all pressure relief valves are with in normal parameters.
Abigail was so happy to see her nanny, Katy, for the first time in two weeks this morning. She ran to Katy and gave her a gigantic hug and kiss and then proceeded to try and convince Katy it was time to go somewhere...anywhere...just get her away from these crazy people who claim to be her parents. Katy and Abigail go on adventures everyday! Parks, OMSI, Zoo, Target, the Bank, anywhere but here is always exciting to Abigail! I have a feeling Abigail was just getting fed up with being cooped up with the same people everyday, all day.
Melinda and I are going to try and get Abigail's daily routine as back to normal as we can. We both feel this will help her have a sense of normalcy. I am going to take her to preschool for a little bit this afternoon, after she wakes up, and see how she does. I am planning to take her out before snack time at 2:30 and will continue to do so until she is fully adjusted to the diet. She has a special preschool thru the county on Monday, Tuesday, and Wednesday mornings it is thru the the Portland Public Schools and provides speech therapy as well as cognitive and physical therapy to help with the learning and speech delays she has as a direct result of the epilepsy. Her teachers are terrific in both schools and Abigail's enjoys going immensely. We are not sure how we are going to handle snacks at the morning preschool yet, Abigail's diet regimen does not account for, or allow for snacks. I am going to call and discuss options this afternoon with the director.
Abigail's had a great morning with Katy, they went to the park and enjoyed the first sunny day in weeks here in Portland.
We are still seeing seizures, only one or two per day. The ones we are seeing however are barely perceptible with little to no head nodding. Abigail remains cognitively present and they pass quickly. The results have been so quick and positive that it makes everything else that is going on worth it! I hope it continues so we can try and cut back on the Vigabatrin in the next 4 weeks or so!
I want to say thanks to everyone for the good thoughts and support over the last week as we get the diet started, it mean a lot to Melinda and I!!!
Monday, January 12, 2009
Are we there yet?
Remember the long car rides you used to take in the summer with your parents as kids. Your older sister on one side, your older brother on the other. The car is small, loud, and has no air conditioner? The snacks lovingly packed by your mother are hours gone. The sun has turned any uncovered vinyl to a searing punishment that keeps you from moving. You feel the words forming in your mouth and you fight to keep them in. Not five minute before; your father had threatened to pull this "beeping" car over if he hears one more peep out of any of us, and your mother had backed him up by screaming "Sit on your hands" in a rarely used voice. You know you are going to pay, but the option of getting out of the car; even for 5 minutes while you get yelled at is a better than staying in the car for one more minute. Plus your hands go numb after 5 minutes of sitting on them anyways. The words emerge from the corner of your mouth and get louder as the sentence continues...."Are we there yet?" you blurt out rapidly.... You smile as the squealing of brakes and the pressure of the 1970's lap belt squeezes your mid section.
Thats kind of how I feel right now.
Are we there yet?
I am not sure where is, but Abigail had a really tough day. She flat out refused to eat dinner, I barely got lunch 2 into her, she didn't eat all of lunch 1, and breakfast was an effort due to the lack of coffee, for me....not her. She is tired, cranky, and seems to have started channeling a small demon I believe to be from the 6th layer of hell. We gave in on dinner and had her drink a keto shake just to get the calories in her.
I spent 15 minutes tinkering with my cyclocross bike and found some form or fashion enough of zen to help get her ready for bed.
I have a feeling we only have a week or so more of this before she fully adjusts.
Thats kind of how I feel right now.
Are we there yet?
I am not sure where is, but Abigail had a really tough day. She flat out refused to eat dinner, I barely got lunch 2 into her, she didn't eat all of lunch 1, and breakfast was an effort due to the lack of coffee, for me....not her. She is tired, cranky, and seems to have started channeling a small demon I believe to be from the 6th layer of hell. We gave in on dinner and had her drink a keto shake just to get the calories in her.
I spent 15 minutes tinkering with my cyclocross bike and found some form or fashion enough of zen to help get her ready for bed.
I have a feeling we only have a week or so more of this before she fully adjusts.
Sunday, January 11, 2009
Oh the humanity!!!
Abigail had a slightly better day. She was not as cranky, but she was also not her usual gleeful self. As of this moment we have only seen one seizure today. That being said, we are seeing a well developed range of emotions. She has always played the happy or sad card fairly well. Now she has developed several new cards to add to the mix and throws them at you like a 10 year boy at a Pokemon convention.Lets see....we have:
I am so pissed I am going throw everything within reach card.
I am going to cry (actual tears no less) at the drop of a hat card.
I am going to giggle, laugh maniacally, and scream a high pitched burst all in the space of 3 seconds card.
I am going to be playing quietly listening to calm music one second and then lunge at my sister and head lock her in a hug while screaming KISS HUG...KISS HUG...KISS HUG!!!!!!!!!!! card.
I compare that last one to Inspector Clouseau's (original pink panther movies) man servants random kung fu attacks.
Fortunately we are used to emotional side effects for Abigail when it comes to medications, since we are using food as a medication we are not surprised to see side effects.
Abigail has tried many different Anti Epilepsy medications. ACTH (cushingoid effects made her look like the Michelin Man's love child), Topamax (No effect), Zonegran (Horrendous emotional instability..no effect on the epilepsy), Lamictil (No effect), Vigabatrin, stopped the seizures for about 9 months, we took her off the meds and they came back. We put her back on Vigabatrin and the seizures dropped in frequency and intensity but have never fully gone away again. I am sure there are more meds but I can remember them all right now.
I am sure Abigail is going to balance out as her brain and body adjust to the new chemistry her body is producing. Even when she is cranky these days she is communicating her needs verbally which is more than she has done before.
I thought you all might want a picture to make you go...awe....
Saturday, January 10, 2009
Bad days, Demented Hamsters, and Butter
Today was a bad day for Abigail. Though Abigail only had two seizures for the whole day, she was just a cranky mess. Melinda and I took turns holding her as that was the only method that would consul her. It wasn't so much that she was hungry or tired but rather nothing made her happy all day. Not sure what the problem is but my guess would be that it has to do with blood sugar levels.
I can not imagine what it is like to be unable to eat any sugar or carbohydrates. Maybe I should go cold turkey on my daily caffeine intake? Ban all coffee, tea, and energy drinks so I can feel what she is feeling. Maybe that is just crazy talk......maybe its not a bad idea?
I took Shelby out to the movies today. I thought it would be good for her and I to do something that was just the two of us. We went to see Bolt in 3D, which I have to say was pretty cool, the 3d at least. I spent most of the movie placing the voices of the characters to other characters in other Disney Pixar movies. I have to say my favorite character was the demented hamster, his voice was done by the evil genius from the Incredibles. There was a line of at least 200 people at the theater and I was worried for about 2 seconds before I realized the self serve ticket machines did not have a line. Shelby and I walked right up, bought our tickets and went right in to load up on popcorn and soft drinks. I don't understand why people don't use those machines to by pass the lines but I hope they don't figure it out anytime soon. Shelby and I had a great time. In return Melinda gets to disappear for the evening, I hope she is having fun. Her idea of "fun" is shopping at all the thrift stores in the area looking for the cutest possible outfits for her girls. A mega shopping spree only puts us back $25, and the girls do look pretty darn cute.
This was Abigail's dinner tonight. Cheese, Butter, Cream, Water, and Hot Dog. The crayons were for coloring however I have been tempted to see if there is any nutritional info anywhere for those things? Considering the amount of time they spend in her mouth. The trick with the butter is to put a piece of hot dog on the fork first and top it with butter, then hand her the fork and she does not notice it. Every time I watch her eat the butter I remember the story I have been hearing on and off again over the years about my father eating sticks of butter while working in the family grocery store, in Chicago back in the 1930's and 40's.
mmmmmm...butter.
I can not imagine what it is like to be unable to eat any sugar or carbohydrates. Maybe I should go cold turkey on my daily caffeine intake? Ban all coffee, tea, and energy drinks so I can feel what she is feeling. Maybe that is just crazy talk......maybe its not a bad idea?
I took Shelby out to the movies today. I thought it would be good for her and I to do something that was just the two of us. We went to see Bolt in 3D, which I have to say was pretty cool, the 3d at least. I spent most of the movie placing the voices of the characters to other characters in other Disney Pixar movies. I have to say my favorite character was the demented hamster, his voice was done by the evil genius from the Incredibles. There was a line of at least 200 people at the theater and I was worried for about 2 seconds before I realized the self serve ticket machines did not have a line. Shelby and I walked right up, bought our tickets and went right in to load up on popcorn and soft drinks. I don't understand why people don't use those machines to by pass the lines but I hope they don't figure it out anytime soon. Shelby and I had a great time. In return Melinda gets to disappear for the evening, I hope she is having fun. Her idea of "fun" is shopping at all the thrift stores in the area looking for the cutest possible outfits for her girls. A mega shopping spree only puts us back $25, and the girls do look pretty darn cute.
This was Abigail's dinner tonight. Cheese, Butter, Cream, Water, and Hot Dog. The crayons were for coloring however I have been tempted to see if there is any nutritional info anywhere for those things? Considering the amount of time they spend in her mouth. The trick with the butter is to put a piece of hot dog on the fork first and top it with butter, then hand her the fork and she does not notice it. Every time I watch her eat the butter I remember the story I have been hearing on and off again over the years about my father eating sticks of butter while working in the family grocery store, in Chicago back in the 1930's and 40's.
mmmmmm...butter.
Friday, January 9, 2009
Holy Crap
Is all I can say. In the last 30 minutes Abigail has identified two colors, sat still with her sister while they colored, asked for multiple items, and is using complete sentences that don't need translation protocols or guides.
I know it does not seem like that big a deal but when your child is 12 months delayed and has cognitive and speech issues, its all I can do to not let myself hope a little more than I have been.
I know its only been five days but the differences are so noticeable.
So far today she has only had one noticeable seizure. That is 1/8th what she normally has.
I know it does not seem like that big a deal but when your child is 12 months delayed and has cognitive and speech issues, its all I can do to not let myself hope a little more than I have been.
I know its only been five days but the differences are so noticeable.
So far today she has only had one noticeable seizure. That is 1/8th what she normally has.
Awake.
This is going to sound weird but when Abigail is awake now...she is just more awake. She is aware, and engaged with her surroundings and people. She wants to play with you more, she looks you in the eye more, and she is expressing herself more with works. She can sit at activities longer now as well.
Due to her low blood sugar she is still very tired. This could take a few weeks to go away, but for right now she is sleeping very well at night and several naps during the day. Her blood sugar will continue to be low but her body will get used to the lower blood sugar and she will not be so tired.
She slept in till 7:40 this morning, as did we. She has been our alarm clock for ages now. She always woke up at 5:30 on the nose every day. Looks like we are going to have to pay more attention to setting our bedside alarm.
It is very nice to hear her expressing her needs verbally:
Sit down abigail daddy. (translation: sit your fat butt down and play with me old man)
Water more milk cup pleeeeeaaassseee (does the sign for please as well) (translation: stop what your doing and give me more darn fluids)
Abigail go bye bye car now. (translation: I am bored...I want to blow this Popsicle stand)
It has only been a few days but with the noticeable reduction in seizures and her being more aware I would say all the work we have put in and all the work to come has and will be worth it.
Due to her low blood sugar she is still very tired. This could take a few weeks to go away, but for right now she is sleeping very well at night and several naps during the day. Her blood sugar will continue to be low but her body will get used to the lower blood sugar and she will not be so tired.
She slept in till 7:40 this morning, as did we. She has been our alarm clock for ages now. She always woke up at 5:30 on the nose every day. Looks like we are going to have to pay more attention to setting our bedside alarm.
It is very nice to hear her expressing her needs verbally:
Sit down abigail daddy. (translation: sit your fat butt down and play with me old man)
Water more milk cup pleeeeeaaassseee (does the sign for please as well) (translation: stop what your doing and give me more darn fluids)
Abigail go bye bye car now. (translation: I am bored...I want to blow this Popsicle stand)
It has only been a few days but with the noticeable reduction in seizures and her being more aware I would say all the work we have put in and all the work to come has and will be worth it.
Noodles
Kelp noodles....almost completely void of nutrition...and taste.
However they look and feel like spaghetti and to any three year old, pasta is the most important thing in life, in any shape and form!!
When you add high fat pesto and some high fat meat to the mix and heat it up...you have a perfect Ketogenic Spaghetti meal.
However they look and feel like spaghetti and to any three year old, pasta is the most important thing in life, in any shape and form!!
When you add high fat pesto and some high fat meat to the mix and heat it up...you have a perfect Ketogenic Spaghetti meal.
Thursday, January 8, 2009
Mmmmm and not so Mmmmm
Just realized I have not posted what one of the meals looks like. We are having issues with Abigail not eating her 2:30 (2nd lunch) meal. We are working really hard to maintain the 4:1 ratio even when she doesn't eat everything. The picture to the right is her 2:30 meal. 19g of Salami, 15g of cheddar cheese, 36g of HWC, and 24g of butter. Between salami pieces is the cheddar cheese and butter. Abigail is sporting a sweet creamstash.
Here were today's meals.
Breakfast 6:30am: 7g of bacon (2/3rd of a slice), 33g of eggs (2/3rd of an egg), 70g of HWC, 14g of butter. We spread the butter on each bite of egg and it worked well.
Lunch 1 10:30am: 57g of HWC, 14g of Pork Rinds, 21g of Butter. Spread the butter on the Pork Rinds and she ate it all with a smile on her face.
Lunch 2 2:30: 19g of Salami, 15g of cheddar cheese, 36g of HWC, and 24g of butter. She drank all the HWC and ate two mini sandwiches of salami, cheese, and butter. We maintained the 4:1 ratio by giving some extra HWC
Dinner 6:30pm: 39g HWC, 50g of Organic Kosher Hot Dog, 13g of Butter, 10g of Cheddar Cheese. I have a feeling she will eat it all!
Next week if Abigail is still not eating the afternoon meal we will lower her daily calories spread over the four meals and see what happens.
We are going to pick up some sugar free multi vitamins tonight so we can make sure to balance out her daily needs as much as possible.
At this point we have a 50% reduction in seizures and are hoping for more. 50% was one of the goals we wanted when we started this diet. We want 100% but will take any reduction we can get. It is also to soon to know if the diet is causing the 50% reduction or just the shock to the system. She does seem more aware and is more focused when playing with toys and interacting with other kids.
Abigail has also taken on the sweet smell of butter and bacon...mmmm....bacon....its the candy bar of meats.
Which button again?
Melinda and I were glad to be sleeping in our own beds last night. Being home makes it easier for figuring out the meals for Abigail.
The gram scale we got is easy to use...two buttons, however at 6am I kept hitting the off button to zero out the scale. Did it twice.
Breakfast was a modest affair of Eggs, Bacon, Heavy Whipping Cream(HWC), and Butter.
Lunch Number One: HWC, Pork Rinds (calling them chips) with butter on them. Special thanks to Melinda (the vegetarian) for smearing the butter on the pork rinds.
Many jokes abound about the vegetarian who married the Jew, and are serving dairy and pork on the same plate to their child.
We are planning out lunch number two and dinner. Abigail has stopped liking mayonnaise and we are looking at Brie as a replacement.
Abigail's eating schedule:
Breakfast: 6:30
Lunch 1: 10:30
Lunch 2: 2:30
Dinner: 6:30
We have yet to figure out daycare snacks and how to handle that but we have till next week to get it all nailed down.
We are going to spend today and tomorrow focusing on meal planning and experimenting with different foods.
We miss Shelby and look forward to seeing her when she gets outs of school today! Abigail keeps asking for her and I am sure will lock her into a fierce headlock the instant she sees her!
Abigail loves the pork rinds with butter...I have been watching her chow them down with great gusto.
The gram scale we got is easy to use...two buttons, however at 6am I kept hitting the off button to zero out the scale. Did it twice.
Breakfast was a modest affair of Eggs, Bacon, Heavy Whipping Cream(HWC), and Butter.
Lunch Number One: HWC, Pork Rinds (calling them chips) with butter on them. Special thanks to Melinda (the vegetarian) for smearing the butter on the pork rinds.
Many jokes abound about the vegetarian who married the Jew, and are serving dairy and pork on the same plate to their child.
We are planning out lunch number two and dinner. Abigail has stopped liking mayonnaise and we are looking at Brie as a replacement.
Abigail's eating schedule:
Breakfast: 6:30
Lunch 1: 10:30
Lunch 2: 2:30
Dinner: 6:30
We have yet to figure out daycare snacks and how to handle that but we have till next week to get it all nailed down.
We are going to spend today and tomorrow focusing on meal planning and experimenting with different foods.
We miss Shelby and look forward to seeing her when she gets outs of school today! Abigail keeps asking for her and I am sure will lock her into a fierce headlock the instant she sees her!
Abigail loves the pork rinds with butter...I have been watching her chow them down with great gusto.
Wednesday, January 7, 2009
Get the Heck Out
Just a quick note for today. I will write more about today...tomorrow. Everything is fine its just been a hectic day.
Abigail went so smoothly, medically, onto the diet that they kicked us out of the hospital!! Well they didn't kick us out but they said we could go home. I am writing this from my own kitchen table and not propped on the sleeper couch in her hospital room. Dr. Olson and his team were very impressed with how well Abigail went into ketosis and is handling the diet. She is still cranky and a bit lethargic from her low blood sugar levels, but over all she is accepting the diet very nicely. They felt there was no need to keep her in the hospital any longer. Every child is different when going onto this diet which is why they feel its best to hospitalize at the start of the diet. She is still asking for her favorite foods like chips and cookies but we have plans to do some interesting things with pork rinds to replace the chips.
Abigail went so smoothly, medically, onto the diet that they kicked us out of the hospital!! Well they didn't kick us out but they said we could go home. I am writing this from my own kitchen table and not propped on the sleeper couch in her hospital room. Dr. Olson and his team were very impressed with how well Abigail went into ketosis and is handling the diet. She is still cranky and a bit lethargic from her low blood sugar levels, but over all she is accepting the diet very nicely. They felt there was no need to keep her in the hospital any longer. Every child is different when going onto this diet which is why they feel its best to hospitalize at the start of the diet. She is still asking for her favorite foods like chips and cookies but we have plans to do some interesting things with pork rinds to replace the chips.
Tuesday, January 6, 2009
Ladies and Gentleman we have Ketosis!....and watch out for mountain lions.
We have achieved Ketosis! Abigail woke up nice and cranky this morning with a super low blood sugar count and the darkest purple (3+) ketone marker on the tester. The nutritionist said it was a perfect Ketosis. The doctor had told us a sure fire sign of Ketosis is lethargy. This make take several weeks to go away. On Monday during the day it was all we could do to keep her in the room, this morning it was all we could do to keep her awake. She got to eat a 2/3 rd portion meal at 9:30 today. Bacon, Butter, and Heavy Whipping cream! She gobbled the bacon down then chugged the Cream and butter mixed together. Immediately afterward she was raring to go for about an hour, followed by a nice long nap.
The doctor and the nutritionist were so happy with her progress they let her have a full portion meal for lunch 414 Calories with a 4 to 1 ratio. The ratio is fat to combined protein/carbohydrates with proteins taking priority over the carbohydrates.
Melinda and I spent several hours with the nutritionist and the nurse practitioner today going over meal prep, planning, and the keto calculator program.
There is even talk of letting us go home tomorrow afternoon if she continues to make progress and handles the food well! We don't want to get our hopes up but it would be nice to be home an d in our own space.
I just took a nice long run at a place call the "Dish" it was a 3.5 mile loop either going up or down then two miles back to the hotel. There were two very large radio telescopes at the summit of the park. Not to mention the signs warning me of Mountain Lions. Whats the trick with lions....make a lot of noise? Play dead? Run away?...just kidding on the last one.
Melinda and I have settled into a nice sharing of duties. I take the night shift (this spares Melinda's bad back) we share the mornings, and I get afternoons off. Its all working out nicely.
Have I mentioned how much of a trooper Abigail is??
This is Abgail and Melinda finishing up Lunch. Cheese 1 large piece, mayonaise, heavy whipping cream, and 3/4 of a hot dog. Abigail loved it!
The doctor and the nutritionist were so happy with her progress they let her have a full portion meal for lunch 414 Calories with a 4 to 1 ratio. The ratio is fat to combined protein/carbohydrates with proteins taking priority over the carbohydrates.
Melinda and I spent several hours with the nutritionist and the nurse practitioner today going over meal prep, planning, and the keto calculator program.
There is even talk of letting us go home tomorrow afternoon if she continues to make progress and handles the food well! We don't want to get our hopes up but it would be nice to be home an d in our own space.
I just took a nice long run at a place call the "Dish" it was a 3.5 mile loop either going up or down then two miles back to the hotel. There were two very large radio telescopes at the summit of the park. Not to mention the signs warning me of Mountain Lions. Whats the trick with lions....make a lot of noise? Play dead? Run away?...just kidding on the last one.
Melinda and I have settled into a nice sharing of duties. I take the night shift (this spares Melinda's bad back) we share the mornings, and I get afternoons off. Its all working out nicely.
Have I mentioned how much of a trooper Abigail is??
This is Abgail and Melinda finishing up Lunch. Cheese 1 large piece, mayonaise, heavy whipping cream, and 3/4 of a hot dog. Abigail loved it!
Monday, January 5, 2009
Only Positive
Positive things from today:
Abigail is a true warrior. The kid is just darn tough.
The hospital rocks...truly a place designed with children in mind.
The nurses and doctors are heros in my books. Some of these kids are really really sick.
Our family rocks for all the support they have and are giving us, we could not do this with out them.
Abigail only had four seizures today....to soon to tell but that is a heck of a damn good sign.
My wonderful wife Melinda...no words to describe how much I love her.
The creators of energy drinks...all I can say is thanks.
Abigail is a true warrior. The kid is just darn tough.
The hospital rocks...truly a place designed with children in mind.
The nurses and doctors are heros in my books. Some of these kids are really really sick.
Our family rocks for all the support they have and are giving us, we could not do this with out them.
Abigail only had four seizures today....to soon to tell but that is a heck of a damn good sign.
My wonderful wife Melinda...no words to describe how much I love her.
The creators of energy drinks...all I can say is thanks.
FOOD!
Abigail got to eat again at 3:30 and 6:30 today. 1/8th of a hot dog 1 teaspoon of mayonnaise, and 1 ounce of heavy whipping cream each time. She really likes mayonnaise!!!
Abigail actually did very well today and is starting to show signs of ketosis. She is slowing down and is not as frenetic as she usually is. She isn't really asking for food that much, but I have a feeling tomorrow may be a little difficult.
She met with Dr. Olson today and charmed the heck out of him :) She has done that with everyone she has met. Not a single person in the hallway today went with out a loud HIIII!!!! Many a sad person had a smile on their face after meeting with Abigail.
Here is Nurse Julia at the receiving end of one of Abigail's Patented Fierce Hugs!!!
Tomorrow we start receiving instruction on how to use the gram scale, measure portions, count calories, maximize fat calories, use a special program to determine fat content to protein and carbohydrate levels.
Here is a picture from the failed Metabolic test, Abigail really did not enjoy it, but as I said we have had to do worse tests before.
There are lots of nice balconies and even a roof top atrium however judging from this I don't think they want kids climbing around to much on the railing!! I always knew Californians were a bit different.
Abigail is doing well, Melinda and I are holding up. Monster energy drinks and large cups of coffee are my friends....very...very...very...good friends.
Abigail actually did very well today and is starting to show signs of ketosis. She is slowing down and is not as frenetic as she usually is. She isn't really asking for food that much, but I have a feeling tomorrow may be a little difficult.
She met with Dr. Olson today and charmed the heck out of him :) She has done that with everyone she has met. Not a single person in the hallway today went with out a loud HIIII!!!! Many a sad person had a smile on their face after meeting with Abigail.
Here is Nurse Julia at the receiving end of one of Abigail's Patented Fierce Hugs!!!
Tomorrow we start receiving instruction on how to use the gram scale, measure portions, count calories, maximize fat calories, use a special program to determine fat content to protein and carbohydrate levels.
Here is a picture from the failed Metabolic test, Abigail really did not enjoy it, but as I said we have had to do worse tests before.
There are lots of nice balconies and even a roof top atrium however judging from this I don't think they want kids climbing around to much on the railing!! I always knew Californians were a bit different.
Abigail is doing well, Melinda and I are holding up. Monster energy drinks and large cups of coffee are my friends....very...very...very...good friends.
The fun never ends
Woke up nice and early.
Took a cab to the hospital. Got checked in and only had to wait an hour and a half for a room.
We are sharing a room with a very small newborn. Not sure what his issues are yet. We have asked about a private room but really doubt we will get one. We are more concerned about Abigail bothering another patient then the other way around. Abigail is not really willing to lay in a bed all day. They have lots of things to do for kids. There is a pre-school we can go to from 10am to 12pm everyday, and 4pm to 6pm.
The metabolic test was a bust as she screamed for the whole 25 minutes. The were trying to figure out how many calories a day she would need based on her co2 levels. It was not one of the worst tests we have had to do over the years....but it definitely was not fun.
They let Abigail have something to eat! 1/3 of a meal size that she will eventually be on. I should have taken a picture and will get one of the afternoon meal. One piece of cheese (1inch by 1inch)
teaspoon of Mayonnaise, and 1 ounce of heavy whipping cream. She is starting to slow down the more into Ketosis she goes. This will help keep her from bouncing off the walls.
Overall Abigail is doing great. Melinda and I are on our 3rd round of coffee for the day. Melinda is going to nap with Abigail and I am off in search of food of some kind...what ever the hospital cafeteria has to offer.
Took a cab to the hospital. Got checked in and only had to wait an hour and a half for a room.
We are sharing a room with a very small newborn. Not sure what his issues are yet. We have asked about a private room but really doubt we will get one. We are more concerned about Abigail bothering another patient then the other way around. Abigail is not really willing to lay in a bed all day. They have lots of things to do for kids. There is a pre-school we can go to from 10am to 12pm everyday, and 4pm to 6pm.
The metabolic test was a bust as she screamed for the whole 25 minutes. The were trying to figure out how many calories a day she would need based on her co2 levels. It was not one of the worst tests we have had to do over the years....but it definitely was not fun.
They let Abigail have something to eat! 1/3 of a meal size that she will eventually be on. I should have taken a picture and will get one of the afternoon meal. One piece of cheese (1inch by 1inch)
teaspoon of Mayonnaise, and 1 ounce of heavy whipping cream. She is starting to slow down the more into Ketosis she goes. This will help keep her from bouncing off the walls.
Overall Abigail is doing great. Melinda and I are on our 3rd round of coffee for the day. Melinda is going to nap with Abigail and I am off in search of food of some kind...what ever the hospital cafeteria has to offer.
Sunday, January 4, 2009
Planes, Training Pants, and Car rides.
Left cold dark Portland this morning for chilly sunny San Francisco. I believe it was Mark Twain who said "The coldest winter I ever had was a summer in San Francisco" Its 50+ degrees and beautiful down here, but it feels colder than Portland, everywhere we went there were people on bikes enjoying the sunshine.
The flight was OK..not great..when we were descending Abigail swallowed a life saver wrong, she didn't choke, but it clearly went down wrong. It took several air sickness bags to get over that. It wasn't too bad just a little nerve wracking. I think the people around us fared far worse than we did. Once we landed we had to sit on the tarmac for 30 minutes as there was no one there to drive the gate out to the plane.
Melinda's wonderful friend Kathy was waiting for us and took us to our Hotel by the hospital. The room was not what we expected but they understood and moved us to a better room with more sunlight. We didn't really want to complain as the hotel offers a 50% discount to anyone staying there who has a child in the hospital. It probably didn't help that we checked in while really hungry and cranky.
Kathy took our cranky butts to find some food and our day was vastly improved. We spent the rest of the day hanging out at Kathy's house with her husband Chris and her two kids, Laurel (2.75 years old) and Mary Ann (10 months). Abigail and Laurel went to the park, played in mud puddles, chased each other screaming in high pitched voices, and pointedly refused to take naps.
Abigail's last meal that is primarily carbohydrates for the next two years was pizza. Kind of wish she had eaten more.
Tomorrow brings the 8am metabolic test then the possibility of waiting all day for a room while trying to explain to her why we can't feed her. Not to mention multiple blood and urine tests thru out the day.
On a positive note Abigail went from morning till early evening in the same pull up!!! 14 hours and 5 potty uses, the end of potty training is in sight!
One thing about the bay area that has become clear to me, in my last two visits, is just how much you have to drive to get anywhere around here. Kathy is a rock star in the extreme. We can't thank her enough for helping us.
Abigail had a couple of bad sets of seizures this afternoon and evening, watching them just drove home the importance of what we are doing here and just how much we hope this works.
The flight was OK..not great..when we were descending Abigail swallowed a life saver wrong, she didn't choke, but it clearly went down wrong. It took several air sickness bags to get over that. It wasn't too bad just a little nerve wracking. I think the people around us fared far worse than we did. Once we landed we had to sit on the tarmac for 30 minutes as there was no one there to drive the gate out to the plane.
Melinda's wonderful friend Kathy was waiting for us and took us to our Hotel by the hospital. The room was not what we expected but they understood and moved us to a better room with more sunlight. We didn't really want to complain as the hotel offers a 50% discount to anyone staying there who has a child in the hospital. It probably didn't help that we checked in while really hungry and cranky.
Kathy took our cranky butts to find some food and our day was vastly improved. We spent the rest of the day hanging out at Kathy's house with her husband Chris and her two kids, Laurel (2.75 years old) and Mary Ann (10 months). Abigail and Laurel went to the park, played in mud puddles, chased each other screaming in high pitched voices, and pointedly refused to take naps.
Abigail's last meal that is primarily carbohydrates for the next two years was pizza. Kind of wish she had eaten more.
Tomorrow brings the 8am metabolic test then the possibility of waiting all day for a room while trying to explain to her why we can't feed her. Not to mention multiple blood and urine tests thru out the day.
On a positive note Abigail went from morning till early evening in the same pull up!!! 14 hours and 5 potty uses, the end of potty training is in sight!
One thing about the bay area that has become clear to me, in my last two visits, is just how much you have to drive to get anywhere around here. Kathy is a rock star in the extreme. We can't thank her enough for helping us.
Abigail had a couple of bad sets of seizures this afternoon and evening, watching them just drove home the importance of what we are doing here and just how much we hope this works.
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