Friday, July 30, 2010
Update
Will start blogging again soon. Abigail is no longer on the Ketodiet and we got her cholesterol down from 600 to 125. I will try to get something more posted soon!
Thursday, February 25, 2010
really quick...I want to be a cyborg too.
I am so jealous. Abigail is one step closer to being a cyborg than I am. Better living through technology I always say. I want to be signed up for a memory impant.
Abgail did really well in the surgery and is recovering nicely. The only complication was some O2 saturation levels being to low. They kept her in the hospital an extra half a day to check that out. Everything turned out fine and they let us go home on Tuesday evening.
The surgeon said she had a good looking vagis nerve. Must be surgeon speak for everything was fine and we have nothing to worry about.
At this point we are scheduled to activate it on the 8th of March.
Abgail did really well in the surgery and is recovering nicely. The only complication was some O2 saturation levels being to low. They kept her in the hospital an extra half a day to check that out. Everything turned out fine and they let us go home on Tuesday evening.
The surgeon said she had a good looking vagis nerve. Must be surgeon speak for everything was fine and we have nothing to worry about.
At this point we are scheduled to activate it on the 8th of March.
Monday, February 15, 2010
Small Update
Once again sorry for no recent updates. It has been a crazy winter. Here is the last few months in a nut shell.
Abigail is now on a 2:1 ratio with a net carb intake of about 10grams per day. Not really Ketogenic diet anymore but more like Atkins for Seizures.
Once again tried some new meds to no affects.
We are considering ending the diet due to some irregularities in her red blood cell size. We have an appointment with a Hematologist in March. Thoughts at this point are that the diet is stressing her bone marrow. We will know more after the appointment.
Abigail is now on Depokote after a four day stay in the hospital in November. They put her on Depakon (sp?) an IV version of Depokote to get her to therapeutic levels quickly due to her constantly seizing. She was having 3 or 4 episodes per hour for almost a day before they were able to break the cycle with the Depakon. She is fine now and back to her "normal" 4 to 6 seizures per day.
With the failure of the 9th medication that we have tried, we are now going to do the Vagis Nerve Stimulator . It was a long hard decision but at this point we feel is the right one. She is scheduled for surgery on the 22nd. Just a week away. The Neural Surgeon is great and we looking forward to getting this done. They won't turn it on until two weeks after the surgery...and it will take months to get her to full dosage as well as fine tuning it.
An interesting coincidence occurred while we were in the waiting room at the surgeons office. I had met a mother online through Facebook of a another child in Portland who has Epilepsy. She had questions about the Ketogenic diet and has actually put her son on the Low Glycimic (sp?) Diet which is where we hope to get Abigail at some point. She was waiting to see the same surgeon as us! It was a crazy way to meet! Her son had received the implant 3 months ago, and is doing great. She was very helpful in answering all the questions Melinda and I had about the device as well as what the post surgery recovery was like. We hope to stay in contact with her so we can compare notes and experiences with the device.
Over all we are hopeful about the VNS implant but have become a bit jaded after so many failures. The thought of implanting something to control the seizures is terrifying but I keep telling myself; if Abigail had a heart condition I would not think twice about a pacemaker.
Over all Abigail is doing great developmental wise, still working on building her vocabulary, and we are now starting assessments for Kindergarten in the fall. She love the early intervention class she goes to on Monday, Tuesday, and Wednesday mornings. There is some talk of having her in a general classroom with a helper, and spending some parts of the day in the special needs classroom. Right now the plan is to do Kindergarten twice, half days the first year and full days the second. I don't want to plan to far into the future but it makes me feel better to do so, so I do it :)
I will try and post some updates from the hospital next week!
Abigail is now on a 2:1 ratio with a net carb intake of about 10grams per day. Not really Ketogenic diet anymore but more like Atkins for Seizures.
Once again tried some new meds to no affects.
We are considering ending the diet due to some irregularities in her red blood cell size. We have an appointment with a Hematologist in March. Thoughts at this point are that the diet is stressing her bone marrow. We will know more after the appointment.
Abigail is now on Depokote after a four day stay in the hospital in November. They put her on Depakon (sp?) an IV version of Depokote to get her to therapeutic levels quickly due to her constantly seizing. She was having 3 or 4 episodes per hour for almost a day before they were able to break the cycle with the Depakon. She is fine now and back to her "normal" 4 to 6 seizures per day.
With the failure of the 9th medication that we have tried, we are now going to do the Vagis Nerve Stimulator . It was a long hard decision but at this point we feel is the right one. She is scheduled for surgery on the 22nd. Just a week away. The Neural Surgeon is great and we looking forward to getting this done. They won't turn it on until two weeks after the surgery...and it will take months to get her to full dosage as well as fine tuning it.
An interesting coincidence occurred while we were in the waiting room at the surgeons office. I had met a mother online through Facebook of a another child in Portland who has Epilepsy. She had questions about the Ketogenic diet and has actually put her son on the Low Glycimic (sp?) Diet which is where we hope to get Abigail at some point. She was waiting to see the same surgeon as us! It was a crazy way to meet! Her son had received the implant 3 months ago, and is doing great. She was very helpful in answering all the questions Melinda and I had about the device as well as what the post surgery recovery was like. We hope to stay in contact with her so we can compare notes and experiences with the device.
Over all we are hopeful about the VNS implant but have become a bit jaded after so many failures. The thought of implanting something to control the seizures is terrifying but I keep telling myself; if Abigail had a heart condition I would not think twice about a pacemaker.
Over all Abigail is doing great developmental wise, still working on building her vocabulary, and we are now starting assessments for Kindergarten in the fall. She love the early intervention class she goes to on Monday, Tuesday, and Wednesday mornings. There is some talk of having her in a general classroom with a helper, and spending some parts of the day in the special needs classroom. Right now the plan is to do Kindergarten twice, half days the first year and full days the second. I don't want to plan to far into the future but it makes me feel better to do so, so I do it :)
I will try and post some updates from the hospital next week!
Wednesday, September 2, 2009
oops...sorry
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.
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, 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.
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