Tuesday, May 31, 2011
Sunday, May 29, 2011
Stronger
This week has just been one of those, when it comes to Cole. He has needed rescue meds every day but Tuesday, with no apparent illness. This, has never happened. It is something that would have most likely sent a former version of myself into a depressed state. However, I have felt more empowered this week than hopeless.
I think things started to change about a month ago. After that first liberating experience of continuing to do what we had planned on, after a major seizure, we have been approaching things differently. I can only accredit this change in myself to time and support from other warriors. Now, occasionally I have just been stupid and tried to risk things that were SO not worth it. Case in point, I took Cole to the store for the first time in forever, it was a horrible experience. The only thing we really got out of it was groceries, and I could have sent Brian to get them on his way home. However, sometimes you just have to test your boundaries and see what is going to happen. Some days he can handle being in public, other days, not so much. Yet, doing something that is worth the risk is becoming easier to imagine.
In between things like our printer breaking for the second time, losing one of Cole's FL-41 lenses (and thankfully recovering it hours later), I have had plans. Like, real plans! For those of you who know me personally, you understand what this means to me. I'm a list maker; an organizer. Living for the last year and a half or so by the seat of my pants has not been easy. However, it has also taught me to have flexibility...and that the world won't end if I am 5 minutes late (well, maybe it won't). I planned on having some lovely ladies over to my home one night. Cole was having clusters, but he was in his father's capable hands. We planned on breaking out of the house once or twice while we had company in town. Cole had major seizures on both occasions, but we STAYED. This was a freakishly tough/great experience. I had my doubts if we would even leave the house after the week that Cole has had. He is still not eating well. I took him in for a blood draw on Thursday and they could only get half of a tube. He needed 6. They were closed on Fri, Mon is a holiday, so we have to try again on Tues. We need to see where all of his levels are before we can move forward with an action plan. I have been so confused. Do we go back on the full ketogenic diet? Do we up the depakote? Do we up the Keppra? Do we lower something? Do we? Do we? Do we? It has been mentally exhausting.
I am so grateful to Brian's brother, who is willing to put his pleasure vacation on the back burner. He didn't get to go to an amusement park, or museums, or many of the other attractions that one would come to our area to see. He wanted to spend as much time with his nephews as possible, taking into account Cole's restrictions. That is saying a lot for a single guy. Cole really misses him.
He even watched Cole for 3 hours so that Brian and I could go to church together. It was wonderful! People were worried. They came up and asked if Cole was okay and wondered why we were together! :) Can't wait for those nursing hours to be put to good use! It was also nice that they noticed.
We went back and forth on what to do on Saturday since the week had been rough and Cole was still struggling on Friday night. We eventually settled on trying out a beach that is within an hour of our home. I brought every thing I could think of to make it easier. Note to self: purchase a beach umbrella, immediately. We were not there for even 20 minutes before the excitement, light and noise got to my boy. He had a full on tonic clonic in the sand, with his O2 dropping into the 60s. I sent Brian back to the car for the oxygen tank, low and behold we didn't have any tubing! It's a good thing that he popped back up into semi-normal range within a few minutes. The seizure took two rescue meds to stop, but we just decided that we were going to tough it out. Cole wanted to be up and going fairly quickly, but did not want anything to do with the sand or the water. So he just stumbled/wandered for a while with his dad tagging along to make sure he was okay. It probably helped that a family near us had their disabled daughter in the bay. Her pink wheelchair was parked right on the sand and they carried her in to the surf. She was definitely more disabled than Cole and was older too. Probably around 11 or 12. However, I could still see the joy in her face while the waves bobbed her body up and down as two of her loved ones carried her in the brackish water. Her squeals of delight made me smile and think, "If they can do it, so can I".
I remember our friends from Australia recounting the story of their daughter having two major seizures on an airplane over the Pacific Ocean. I seriously thought they were crazy. Who would take a risk like that? I also remember talking to other parents about how they went hiking, swimming and even camping with their Dravet kids. I thought to myself, "It is going to take me a long time before I get there."
I am just proving to myself that I am stronger than I thought. Well, Cole is proving it to me too. After the meds wore off, he got in the water and played like any other three year old would. He was doing so well that we even went to a small museum afterwards. Risky? Most certainly. However, it was so good to just be together, doing something besides wanting to pull my hair out.
Brian and his brothers are off at the National Memorial Day Concert on the lawn of the capitol and I am here at home with Cole. Tomorrow, there will probably also be some activities that Cole and I won't be able to attend; but this weekend, we have been more active than we have been in probably a year. It had some highs and some lows. I'm not ready to fly over the ocean, or even drive in the car for more than an hour. There is also no way that I am going to adventure somewhere that doesn't have a decent hospital close by. Yet, I think that we have proved to ourselves that Mini-Hulk is so resilient that he is stronger than we think. Maybe I am too.
I think things started to change about a month ago. After that first liberating experience of continuing to do what we had planned on, after a major seizure, we have been approaching things differently. I can only accredit this change in myself to time and support from other warriors. Now, occasionally I have just been stupid and tried to risk things that were SO not worth it. Case in point, I took Cole to the store for the first time in forever, it was a horrible experience. The only thing we really got out of it was groceries, and I could have sent Brian to get them on his way home. However, sometimes you just have to test your boundaries and see what is going to happen. Some days he can handle being in public, other days, not so much. Yet, doing something that is worth the risk is becoming easier to imagine.
In between things like our printer breaking for the second time, losing one of Cole's FL-41 lenses (and thankfully recovering it hours later), I have had plans. Like, real plans! For those of you who know me personally, you understand what this means to me. I'm a list maker; an organizer. Living for the last year and a half or so by the seat of my pants has not been easy. However, it has also taught me to have flexibility...and that the world won't end if I am 5 minutes late (well, maybe it won't). I planned on having some lovely ladies over to my home one night. Cole was having clusters, but he was in his father's capable hands. We planned on breaking out of the house once or twice while we had company in town. Cole had major seizures on both occasions, but we STAYED. This was a freakishly tough/great experience. I had my doubts if we would even leave the house after the week that Cole has had. He is still not eating well. I took him in for a blood draw on Thursday and they could only get half of a tube. He needed 6. They were closed on Fri, Mon is a holiday, so we have to try again on Tues. We need to see where all of his levels are before we can move forward with an action plan. I have been so confused. Do we go back on the full ketogenic diet? Do we up the depakote? Do we up the Keppra? Do we lower something? Do we? Do we? Do we? It has been mentally exhausting.
I am so grateful to Brian's brother, who is willing to put his pleasure vacation on the back burner. He didn't get to go to an amusement park, or museums, or many of the other attractions that one would come to our area to see. He wanted to spend as much time with his nephews as possible, taking into account Cole's restrictions. That is saying a lot for a single guy. Cole really misses him.
He even watched Cole for 3 hours so that Brian and I could go to church together. It was wonderful! People were worried. They came up and asked if Cole was okay and wondered why we were together! :) Can't wait for those nursing hours to be put to good use! It was also nice that they noticed.We went back and forth on what to do on Saturday since the week had been rough and Cole was still struggling on Friday night. We eventually settled on trying out a beach that is within an hour of our home. I brought every thing I could think of to make it easier. Note to self: purchase a beach umbrella, immediately. We were not there for even 20 minutes before the excitement, light and noise got to my boy. He had a full on tonic clonic in the sand, with his O2 dropping into the 60s. I sent Brian back to the car for the oxygen tank, low and behold we didn't have any tubing! It's a good thing that he popped back up into semi-normal range within a few minutes. The seizure took two rescue meds to stop, but we just decided that we were going to tough it out. Cole wanted to be up and going fairly quickly, but did not want anything to do with the sand or the water. So he just stumbled/wandered for a while with his dad tagging along to make sure he was okay. It probably helped that a family near us had their disabled daughter in the bay. Her pink wheelchair was parked right on the sand and they carried her in to the surf. She was definitely more disabled than Cole and was older too. Probably around 11 or 12. However, I could still see the joy in her face while the waves bobbed her body up and down as two of her loved ones carried her in the brackish water. Her squeals of delight made me smile and think, "If they can do it, so can I".
I remember our friends from Australia recounting the story of their daughter having two major seizures on an airplane over the Pacific Ocean. I seriously thought they were crazy. Who would take a risk like that? I also remember talking to other parents about how they went hiking, swimming and even camping with their Dravet kids. I thought to myself, "It is going to take me a long time before I get there." I am just proving to myself that I am stronger than I thought. Well, Cole is proving it to me too. After the meds wore off, he got in the water and played like any other three year old would. He was doing so well that we even went to a small museum afterwards. Risky? Most certainly. However, it was so good to just be together, doing something besides wanting to pull my hair out.
Brian and his brothers are off at the National Memorial Day Concert on the lawn of the capitol and I am here at home with Cole. Tomorrow, there will probably also be some activities that Cole and I won't be able to attend; but this weekend, we have been more active than we have been in probably a year. It had some highs and some lows. I'm not ready to fly over the ocean, or even drive in the car for more than an hour. There is also no way that I am going to adventure somewhere that doesn't have a decent hospital close by. Yet, I think that we have proved to ourselves that Mini-Hulk is so resilient that he is stronger than we think. Maybe I am too.
Thursday, May 26, 2011
Ebb and Flow
Just like the waves, change is constant. In and out, good days and bad days.
In exchange for our great weekend, we have been rewarded with a couple of tough days.
Cole is still not eating very much. I'm pushing fluids through his tube, so he is hydrated, but I'm wondering how much longer we can hold out, waiting for him to decide that he wants food again.
After all of that stress about, "How am I supposed to send seizure shirts to the dog if he isn't having big seizures?"; I got two in 48 hours. Lucky. I should be careful what I wish for! I actually said, "This is great!" when he started seizing. Oy! I have issues. Now if I could only make it to Fed Ex within 24 hours :)
Yesterday we finally had that pre-school testing we have been waiting for since we arrived. Cole performed like a champ...he was perfectly charming, social and carrying on a full conversation. This kid is going to be the demise of me. How can he turn on the "I'm perfect, I don't have a disability" switch when I need him to show his true colors most? Why couldn't he have acted like he did when the Medicaid Waiver people were here? Oh, I'll never know. All in all, we might have to go through the same thing here that we did in Utah. His scores are just barely borderline. They are not sure if he will qualify. Well, that is because you caught him on a good day, on a new medication. Tomorrow will be different. Next week will be different, and so on. Now we just hurry up and wait for their decision. At least the testing staff here are nice, huge plus!
Last night I had a little get-together and all of the new people sent Cole into clusters. We tried out the Valium by g tube and it worked great! Walking, talking, just dandy. I'm sure feeling warm and fuzzy as compared to dizzy and weird is a plus in any one's book! I was so behind in getting things together. Brian's train got stuck on the track, sending him home later than usual. Cole also decided to seize Tues night, canceling my plans for prep, due to me having to watch him stumble around in a post ictal haze. Then, Wed morning, we were at the school testing, until just an hour or so before people were supposed to arrive. Hey, this is our life! My cupcakes got ruined, I was still running around making food and the table was not even set when people started coming in; but I've just learned to roll with it. In my previous life, I would have been so high strung about everything going perfect, that I wouldn't have enjoyed myself. Believe me, there are worse things in life than serving food that doesn't look straight out of a magazine shoot! Or having your kitchen be cluttered. As long as it tastes good and eventually is set out, that is all you need to worry about. It was great for me to have a conversation with adult women. I have really missed my friends, so it is great to finally be making some new ones.
Hopefully, Cole can have another great weekend. His favorite Uncle is coming into town for a couple of days. Seeing him in person is going to be much more exciting than talking to him on the phone at least twice a day (which he does every day). We'll probably take some risks this weekend to play with him. Let's just hope that Cole's brain decides to cooperate. If it doesn't, then we'll roll with that too.
In exchange for our great weekend, we have been rewarded with a couple of tough days.
Cole is still not eating very much. I'm pushing fluids through his tube, so he is hydrated, but I'm wondering how much longer we can hold out, waiting for him to decide that he wants food again.
After all of that stress about, "How am I supposed to send seizure shirts to the dog if he isn't having big seizures?"; I got two in 48 hours. Lucky. I should be careful what I wish for! I actually said, "This is great!" when he started seizing. Oy! I have issues. Now if I could only make it to Fed Ex within 24 hours :)
Yesterday we finally had that pre-school testing we have been waiting for since we arrived. Cole performed like a champ...he was perfectly charming, social and carrying on a full conversation. This kid is going to be the demise of me. How can he turn on the "I'm perfect, I don't have a disability" switch when I need him to show his true colors most? Why couldn't he have acted like he did when the Medicaid Waiver people were here? Oh, I'll never know. All in all, we might have to go through the same thing here that we did in Utah. His scores are just barely borderline. They are not sure if he will qualify. Well, that is because you caught him on a good day, on a new medication. Tomorrow will be different. Next week will be different, and so on. Now we just hurry up and wait for their decision. At least the testing staff here are nice, huge plus!
Last night I had a little get-together and all of the new people sent Cole into clusters. We tried out the Valium by g tube and it worked great! Walking, talking, just dandy. I'm sure feeling warm and fuzzy as compared to dizzy and weird is a plus in any one's book! I was so behind in getting things together. Brian's train got stuck on the track, sending him home later than usual. Cole also decided to seize Tues night, canceling my plans for prep, due to me having to watch him stumble around in a post ictal haze. Then, Wed morning, we were at the school testing, until just an hour or so before people were supposed to arrive. Hey, this is our life! My cupcakes got ruined, I was still running around making food and the table was not even set when people started coming in; but I've just learned to roll with it. In my previous life, I would have been so high strung about everything going perfect, that I wouldn't have enjoyed myself. Believe me, there are worse things in life than serving food that doesn't look straight out of a magazine shoot! Or having your kitchen be cluttered. As long as it tastes good and eventually is set out, that is all you need to worry about. It was great for me to have a conversation with adult women. I have really missed my friends, so it is great to finally be making some new ones.
Hopefully, Cole can have another great weekend. His favorite Uncle is coming into town for a couple of days. Seeing him in person is going to be much more exciting than talking to him on the phone at least twice a day (which he does every day). We'll probably take some risks this weekend to play with him. Let's just hope that Cole's brain decides to cooperate. If it doesn't, then we'll roll with that too.
Monday, May 23, 2011
Love Letter To Depakote
Dear Depakote Sprinkles,
I just want you to know how you have made the last few days have the ultimate silver lining. See Depakote, I've been in a funk. You know that I always try to keep it real, right? Sometimes I have been downright blue lately, occasionally just bursting into tears without even knowing why. However, my little boy has been able to experience some things this week that all little boys should, because of you. This is what has been keeping me going.
He has been outside more in the last week than he has in the last year. We did yard work as a family this weekend. He even pushed around his toy lawnmower...you know, the one he discovered in the hospital so long ago? That has never happened to us. We were out there for four hours, Depakote! He is talking more than ever and saying hilarious stuff like, "Good morning, Captain Mommy!" All because of you. Well, you and a whole bunch of other stuff like elevation, diet and a variety of cocktailed medications. Still Depakote, you are something special right now.
Even when he had his first big seizure in 4 weeks yesterday, you were working your magic. His oxygen stayed up, he did not go unconscious. He only needed one dose of rescue medication, and it was only about 10 minutes long (instead of the usual 20). This, was a very great thing.
I know that it won't always be this way between us. Alas, my pronouncement of love may be very premature. The whole going anorexic thing could really put a damper on this. Oh, and the possibility of you damaging his liver, like you often do to others. Or the low platelets. Plus, you are kind of difficult to administer. Yes, Depakote, we may not be close for long, but I want you to know that you are giving a special boy a better life right now. Hopefully, you can stick around for a while.
Love,
Cole's Mommy
I just want you to know how you have made the last few days have the ultimate silver lining. See Depakote, I've been in a funk. You know that I always try to keep it real, right? Sometimes I have been downright blue lately, occasionally just bursting into tears without even knowing why. However, my little boy has been able to experience some things this week that all little boys should, because of you. This is what has been keeping me going.
He has been outside more in the last week than he has in the last year. We did yard work as a family this weekend. He even pushed around his toy lawnmower...you know, the one he discovered in the hospital so long ago? That has never happened to us. We were out there for four hours, Depakote! He is talking more than ever and saying hilarious stuff like, "Good morning, Captain Mommy!" All because of you. Well, you and a whole bunch of other stuff like elevation, diet and a variety of cocktailed medications. Still Depakote, you are something special right now.
Even when he had his first big seizure in 4 weeks yesterday, you were working your magic. His oxygen stayed up, he did not go unconscious. He only needed one dose of rescue medication, and it was only about 10 minutes long (instead of the usual 20). This, was a very great thing.
I know that it won't always be this way between us. Alas, my pronouncement of love may be very premature. The whole going anorexic thing could really put a damper on this. Oh, and the possibility of you damaging his liver, like you often do to others. Or the low platelets. Plus, you are kind of difficult to administer. Yes, Depakote, we may not be close for long, but I want you to know that you are giving a special boy a better life right now. Hopefully, you can stick around for a while.
Love,
Cole's Mommy
Sunday, May 22, 2011
A View Inside MCH
I'll finally get to that mini-tour of Miami Childrens Hospital. We really loved all of the beautiful murals. Each one was unique. This one is outside of the playroom on the 3rd floor.
They even painted small corners.
Cole liked the lights around the ceiling at the main entrance.
The colors were all so beautiful.
This was on our floor. The little shiny circles are mirrors.
Cole loved the Radio Lollipop staff and their contests. It was fun to have a live radio show coming from down the hall!
Cole really loved exploring the halls once he was unhooked. He of course gravitated towards the fish tank in the neurosurgery waiting room. The boy loves his animals!
Here is a picture of the waiting room at the Brain Institute, where they hold the Dravet Clinic. Notice how it is white, without many patterns. Still a great room though.
All of the elevators are decorated different.
This is down in the main lobby.
Here is another one of the murals that incorporates mirrors. I really like how they have used so many different mediums in the entire hospital.
This is one of my favorites. I've always loved flamingos.
All in all, the entire hospital was decorated beautifully. This is just a small preview of the thought and care that has been put into its design.
They even painted small corners.
Cole liked the lights around the ceiling at the main entrance.
The colors were all so beautiful.
This was on our floor. The little shiny circles are mirrors.
Cole loved the Radio Lollipop staff and their contests. It was fun to have a live radio show coming from down the hall!
Cole really loved exploring the halls once he was unhooked. He of course gravitated towards the fish tank in the neurosurgery waiting room. The boy loves his animals!
Here is a picture of the waiting room at the Brain Institute, where they hold the Dravet Clinic. Notice how it is white, without many patterns. Still a great room though.
All of the elevators are decorated different.
This is down in the main lobby.
Here is another one of the murals that incorporates mirrors. I really like how they have used so many different mediums in the entire hospital.
This is one of my favorites. I've always loved flamingos.
All in all, the entire hospital was decorated beautifully. This is just a small preview of the thought and care that has been put into its design.
Thursday, May 19, 2011
Contradiction
Hey peeps, I know I promised pictures and a video. Sorry!
As a testament to me losing my mind...this week has turned out to be one after another one of those manifestations where what should be happening, and what really happens are totally opposite.
Med changes are always hard on every body. It's not just the meds though that are being inconsistent. Let's start with Monday. We did not get in bed until after 1 am due to flight delays. We were an extra hour in the air and an extra half hour on the ground. Let's just say, Cole did not take it very well. He slept in, which was great! The depakote has definitely made him sleepier. His naps are longer and he was sleeping through the night most nights since we have gotten back. However, once again that has changed. Darn full moon! Anyway, back to Monday-I get up and throw on some sweats and do a quick brush of my teeth so that I am at least properly dressed when the oxygen people come to pick up their very expensive concentrator that we did not even end up using. Having the peace of mind that it was available was great, but I don't know how much more our wallet can handle when it comes to travel oxygen. I am in the midst of an appeal with the insurance company. Really guys, it will be cheaper for you if you just pay for one. Then I can stop submitting reimbursements and appeals.Try to make a bean counter believe that one.
So, Cole is still roaming in his pajamas, which are stained since everything else is in the suitcase, still packed, or in the laundry. I hear a knock on the door and totally assume it is the oxygen company. Low and behold, it is the Medicaid Waiver worker. WHAT?! They were not supposed to come until next Monday...at least that is what my phone said. I have been waiting for this day for a month and a half now. Surely, they are here on the wrong day? Nope. I ushered her in with a shocked look on my face and told her to sit down. I did not have a single thing ready for our meeting, but I was not going to lose my appointment. I knew that they could not fit us in again until the end of June. Needless to say, I scrambled and stumbled around trying to gather information for the caseworker and the nurse that showed up later. Cole put on a terrific show and they saw us in all of our glory. He hit me, spit on me, broke two things, threw other objects, spilled stuff on my rug, yelled at me to take off his clothes, etc. He proved loud and clear that he is a handful. At the end of the meeting, the worker said that she had no doubt we would be approved and she has never had anyone that has been rejected that she personally felt qualified. That was wonderful news to my ears! A definitely different Cole than the charming, flirtatious boy from Miami. It will still take some time to get all of the nurses lined up and interviewed, but we are thrilled! I asked her advice on what agency to go with. None of the agencies she prefers are covered by my insurance or have school contracts, so it looks like I will be working with more than one agency. We still do not know how many Personal Care Assistant hours we will have, the Medicaid board approves that. Hopefully, it will be at least 4 hours a day for the weekdays. Maybe I can start cooking more than twice a week again! :) The nursing will only be 240 hours a year, which means less than a day per month and you have to access hours each month or you lose your place on the waiver. However, that is at least one night a month that Brian and I could go somewhere and know that we had a totally qualified, free caregiver for Cole.
We have noticed on the depakote that Cole has reverted back to not eating. Seriously, he could take or leave food. We are right back to where we were before the g tube, but bless it-we are not in the hospital for failure to thrive. He is not dehydrated and is still getting all of his meds and supplements. It really is one of the smartest decisions we have ever made for his care. I am really worried about him not eating again. This means re-adjusting the diet, probably re-adjusting the Keppra and a whole bunch of other things. How am I going to know what is really making the difference? It is hard to tell when you change a bunch of things at one time. Get this, here comes the contradiction...depakote is supposed to be an appetite stimulant. Hey, we are talking about Mini Hulk here, he defies all "norms". The doctors are as confused as I am and the only answer that I am getting right now is to liberalize the diet he is on right now, which is more of a Modified Atkins. They want him to eat more fruit and starchy vegetables. He's not even eating his favorite foods, how am I going to get him to eat more than usual?
Right now our treatment is:
Keppra 800 mg (400 morning and night)
Depakote 500 mg (250 morning and night)
Nano VM Multivitamin powder (replacing his Calcium, magnesium, old multivitamin, K phos)
Carnitor 7.5 mL
Vitamin D 800 IU
and a skewampus version of the ketogenic diet
I know that it is not the multivitamin causing this because we did not start it until yesterday. He has not really eaten since we started the depakote, so I can only name it as the changing factor. For something that sometimes makes people gain too much weight, it sure is working opposite on my boy. The doctors said that I should just tube feed him, but I am not ready for that yet. Just because he has a g tube doesn't mean that I have to use it to feed him. I think that he has the potential to just become anorexic and stop eating completely. It has happened to two of my close friends children, why not?
Really, there are so many things lately that are supposed to be working one way and end up doing the opposite. SO, I guess the theme of this week is contradiction. Maybe next week can be something like beating the odds? We have almost gone a full month without rescue meds for a status seizure! That, has not happened in over a year. Which is kind of hilarious, because we are supposed to be sending shirts to his seizure dog every week. For the first time ever, we WANT him to have at least one big seizure a week! The more shirts we send, the better they can train the dog. Cole is also speaking more clearly than he ever has and is picking up new words daily. We were worried the depakote would impair his speech. My little contradiction:)
As a testament to me losing my mind...this week has turned out to be one after another one of those manifestations where what should be happening, and what really happens are totally opposite.
Med changes are always hard on every body. It's not just the meds though that are being inconsistent. Let's start with Monday. We did not get in bed until after 1 am due to flight delays. We were an extra hour in the air and an extra half hour on the ground. Let's just say, Cole did not take it very well. He slept in, which was great! The depakote has definitely made him sleepier. His naps are longer and he was sleeping through the night most nights since we have gotten back. However, once again that has changed. Darn full moon! Anyway, back to Monday-I get up and throw on some sweats and do a quick brush of my teeth so that I am at least properly dressed when the oxygen people come to pick up their very expensive concentrator that we did not even end up using. Having the peace of mind that it was available was great, but I don't know how much more our wallet can handle when it comes to travel oxygen. I am in the midst of an appeal with the insurance company. Really guys, it will be cheaper for you if you just pay for one. Then I can stop submitting reimbursements and appeals.Try to make a bean counter believe that one.
So, Cole is still roaming in his pajamas, which are stained since everything else is in the suitcase, still packed, or in the laundry. I hear a knock on the door and totally assume it is the oxygen company. Low and behold, it is the Medicaid Waiver worker. WHAT?! They were not supposed to come until next Monday...at least that is what my phone said. I have been waiting for this day for a month and a half now. Surely, they are here on the wrong day? Nope. I ushered her in with a shocked look on my face and told her to sit down. I did not have a single thing ready for our meeting, but I was not going to lose my appointment. I knew that they could not fit us in again until the end of June. Needless to say, I scrambled and stumbled around trying to gather information for the caseworker and the nurse that showed up later. Cole put on a terrific show and they saw us in all of our glory. He hit me, spit on me, broke two things, threw other objects, spilled stuff on my rug, yelled at me to take off his clothes, etc. He proved loud and clear that he is a handful. At the end of the meeting, the worker said that she had no doubt we would be approved and she has never had anyone that has been rejected that she personally felt qualified. That was wonderful news to my ears! A definitely different Cole than the charming, flirtatious boy from Miami. It will still take some time to get all of the nurses lined up and interviewed, but we are thrilled! I asked her advice on what agency to go with. None of the agencies she prefers are covered by my insurance or have school contracts, so it looks like I will be working with more than one agency. We still do not know how many Personal Care Assistant hours we will have, the Medicaid board approves that. Hopefully, it will be at least 4 hours a day for the weekdays. Maybe I can start cooking more than twice a week again! :) The nursing will only be 240 hours a year, which means less than a day per month and you have to access hours each month or you lose your place on the waiver. However, that is at least one night a month that Brian and I could go somewhere and know that we had a totally qualified, free caregiver for Cole.
We have noticed on the depakote that Cole has reverted back to not eating. Seriously, he could take or leave food. We are right back to where we were before the g tube, but bless it-we are not in the hospital for failure to thrive. He is not dehydrated and is still getting all of his meds and supplements. It really is one of the smartest decisions we have ever made for his care. I am really worried about him not eating again. This means re-adjusting the diet, probably re-adjusting the Keppra and a whole bunch of other things. How am I going to know what is really making the difference? It is hard to tell when you change a bunch of things at one time. Get this, here comes the contradiction...depakote is supposed to be an appetite stimulant. Hey, we are talking about Mini Hulk here, he defies all "norms". The doctors are as confused as I am and the only answer that I am getting right now is to liberalize the diet he is on right now, which is more of a Modified Atkins. They want him to eat more fruit and starchy vegetables. He's not even eating his favorite foods, how am I going to get him to eat more than usual?
Right now our treatment is:
Keppra 800 mg (400 morning and night)
Depakote 500 mg (250 morning and night)
Nano VM Multivitamin powder (replacing his Calcium, magnesium, old multivitamin, K phos)
Carnitor 7.5 mL
Vitamin D 800 IU
and a skewampus version of the ketogenic diet
I know that it is not the multivitamin causing this because we did not start it until yesterday. He has not really eaten since we started the depakote, so I can only name it as the changing factor. For something that sometimes makes people gain too much weight, it sure is working opposite on my boy. The doctors said that I should just tube feed him, but I am not ready for that yet. Just because he has a g tube doesn't mean that I have to use it to feed him. I think that he has the potential to just become anorexic and stop eating completely. It has happened to two of my close friends children, why not?
Really, there are so many things lately that are supposed to be working one way and end up doing the opposite. SO, I guess the theme of this week is contradiction. Maybe next week can be something like beating the odds? We have almost gone a full month without rescue meds for a status seizure! That, has not happened in over a year. Which is kind of hilarious, because we are supposed to be sending shirts to his seizure dog every week. For the first time ever, we WANT him to have at least one big seizure a week! The more shirts we send, the better they can train the dog. Cole is also speaking more clearly than he ever has and is picking up new words daily. We were worried the depakote would impair his speech. My little contradiction:)
Sunday, May 15, 2011
This Confusion Has Been Brought To You By Blogger
Sorry to those of you who subscribe to us through a reader. Blogger had a lot of issues this week. I have been really happy with blogspot and know that there are ups and downs with any server. However, two whole days of malfunctions was a little rough. I wish it could have happened during a "maybe blog once a week" period, instead of the three posts a day time we've been having lately, but que sera sera.
I lost all of the comments, right dates and labels so I had to go back and tweak some things. Once again, sorry for all of the repeats in your reader...we're back in business now!
Soon to come, the remaining posts from Miami and maybe even a video :)
I lost all of the comments, right dates and labels so I had to go back and tweak some things. Once again, sorry for all of the repeats in your reader...we're back in business now!
Soon to come, the remaining posts from Miami and maybe even a video :)
Friday, May 13, 2011
Vacation?
va·ca·tion/vāˈkāSHən/
noun
1. A period of time devoted to pleasure, rest, or relaxation, especially one with pay granted to an employee.
2. a. A holiday.
b. A fixed period of holidays, especially one during which a school, court, or business suspends activities.
3. Archaic The act or an instance of vacating.
intr.verb. va·ca·tioned, va·ca·tion·ing, va·ca·tions
To take or spend a vacation.
People have been saying that they hope I am having a good time on my vacation.
Thing is, this is anything but. I may have gone overboard comparing this place to Disney. I am more than ever, being reminded of my life's circumstances. There has been no rest, relaxation or pleasure. The only one who is having any fun per se, is Cole. That is, in between the torture. Today on his activities list were things like a nephrology consult, someone scrubbing his scalp violently with acetone to remove 5 day old superglue, a fasting blood draw, adjusting to a new medication, a kidney ultrasound, the usual daily poking and prodding, a very long process of washing his scalp and laboriously combing out the remnants of the glue...5 times. Not exactly what I would call fun.
I don't know of any retreat that requires bringing three binders full of medical records as part of your luggage. Brian does not have paid time off built up yet, so technically, this is not even a vacation in his employer's eyes. We are going without pay to be here. We get the unique pleasure of sitting in a small room, in uncomfortable chairs all day and speaking to doctors. There has been very little rest on my part. It's not easy to sleep in a hospital bed, with a restless toddler whose knees are in your back, arms flying everywhere. To top it off, you have to hold a button in your hand and be poised, ready to hit the trigger at the slightest movement throughout the entire night. The only one who gets room service, is Cole. The rest of us are left to fend for ourselves, cafeteria style. The anxiety of the entire thing has done a number on my stomach and it will probably take a couple of weeks to get back to normal. I wish that I was actually in Miami to lay on the beach with a pina colada (virgin) in my hand. Really, we could be in North Dakota for all that we have seen of this town. We're not even close to South Beach and the only sights we have seen are the 3 floors of MCH.
The truth is, we are here because things have been getting worse...not better. Just because we have had access to great doctors and nurses here, does not mean that Cole is going to be cured or that he won't still have to struggle every day for the rest of his life. We are just hoping to give him the best chance possible at having some freedom from seizures. To actually want your child to have seizures, is one of the strangest phenomenons I can think of. Especially when you have been praying for almost his entire life that he won't have them. To wish him struggle and pain, just makes me sad.
Believe me, I wish we were in Florida to take our 3 year old to a theme park. Truth is, the money (which we don't have a lot of) spent and lost from time off, on this trip could have taken us all on a Disney Cruise...and then some. Honestly, I am worried about paying our rent. However, this is the right place for Cole. I have felt it every day, multiple times a day since we set foot on campus. It helps when every one who comes in the room tells me how adorable he is and how they wish all patients were as cute as him. Even some random older woman, who brought a couple of toys to give to children, was paraded directly to our room with a staff member to present Cole with a Handy Manny flashlight. The staff knew that he would give the perfect reaction and a gracious "thank you!".
One of my friends sent me an e-mail the other day exclaiming that reading the blog has made her "homesick for Miami". She brought her son here a few months ago. Now, I don't know anyone that wants to pack their bags and go to a hospital. I think I know exactly what she means though. She misses the support. She misses having everyone already understand, to an extent, what her little boy is going through. She misses not having to explain herself over and over. She misses the peace of mind knowing that while she is within these walls, everything humanly possible is being done for her child. So even though Brian got to go water skiing and we spent an hour and a half at the beach, this has still been a hospitalization. A tough one. Yet, the opportunity to meet other families, swap war stories and get state-of-the-art treatment for our son has made it bearable. I would do anything for Cole. Anything. And this hospital is going to help me do that.
Dr. Ian Miller, physician extraordinaire
noun
1. A period of time devoted to pleasure, rest, or relaxation, especially one with pay granted to an employee.
2. a. A holiday.
b. A fixed period of holidays, especially one during which a school, court, or business suspends activities.
3. Archaic The act or an instance of vacating.
intr.verb. va·ca·tioned, va·ca·tion·ing, va·ca·tions
To take or spend a vacation.
People have been saying that they hope I am having a good time on my vacation.
Thing is, this is anything but. I may have gone overboard comparing this place to Disney. I am more than ever, being reminded of my life's circumstances. There has been no rest, relaxation or pleasure. The only one who is having any fun per se, is Cole. That is, in between the torture. Today on his activities list were things like a nephrology consult, someone scrubbing his scalp violently with acetone to remove 5 day old superglue, a fasting blood draw, adjusting to a new medication, a kidney ultrasound, the usual daily poking and prodding, a very long process of washing his scalp and laboriously combing out the remnants of the glue...5 times. Not exactly what I would call fun.
I don't know of any retreat that requires bringing three binders full of medical records as part of your luggage. Brian does not have paid time off built up yet, so technically, this is not even a vacation in his employer's eyes. We are going without pay to be here. We get the unique pleasure of sitting in a small room, in uncomfortable chairs all day and speaking to doctors. There has been very little rest on my part. It's not easy to sleep in a hospital bed, with a restless toddler whose knees are in your back, arms flying everywhere. To top it off, you have to hold a button in your hand and be poised, ready to hit the trigger at the slightest movement throughout the entire night. The only one who gets room service, is Cole. The rest of us are left to fend for ourselves, cafeteria style. The anxiety of the entire thing has done a number on my stomach and it will probably take a couple of weeks to get back to normal. I wish that I was actually in Miami to lay on the beach with a pina colada (virgin) in my hand. Really, we could be in North Dakota for all that we have seen of this town. We're not even close to South Beach and the only sights we have seen are the 3 floors of MCH.
The truth is, we are here because things have been getting worse...not better. Just because we have had access to great doctors and nurses here, does not mean that Cole is going to be cured or that he won't still have to struggle every day for the rest of his life. We are just hoping to give him the best chance possible at having some freedom from seizures. To actually want your child to have seizures, is one of the strangest phenomenons I can think of. Especially when you have been praying for almost his entire life that he won't have them. To wish him struggle and pain, just makes me sad. Believe me, I wish we were in Florida to take our 3 year old to a theme park. Truth is, the money (which we don't have a lot of) spent and lost from time off, on this trip could have taken us all on a Disney Cruise...and then some. Honestly, I am worried about paying our rent. However, this is the right place for Cole. I have felt it every day, multiple times a day since we set foot on campus. It helps when every one who comes in the room tells me how adorable he is and how they wish all patients were as cute as him. Even some random older woman, who brought a couple of toys to give to children, was paraded directly to our room with a staff member to present Cole with a Handy Manny flashlight. The staff knew that he would give the perfect reaction and a gracious "thank you!".
One of my friends sent me an e-mail the other day exclaiming that reading the blog has made her "homesick for Miami". She brought her son here a few months ago. Now, I don't know anyone that wants to pack their bags and go to a hospital. I think I know exactly what she means though. She misses the support. She misses having everyone already understand, to an extent, what her little boy is going through. She misses not having to explain herself over and over. She misses the peace of mind knowing that while she is within these walls, everything humanly possible is being done for her child. So even though Brian got to go water skiing and we spent an hour and a half at the beach, this has still been a hospitalization. A tough one. Yet, the opportunity to meet other families, swap war stories and get state-of-the-art treatment for our son has made it bearable. I would do anything for Cole. Anything. And this hospital is going to help me do that.
Dr. Ian Miller, physician extraordinaire
Thursday, May 12, 2011
Medical Disneyland
Cole has been having the time of his life. This hospitalization has been more like a Christmas party, than the usual prison. There has been presents, games, toys, movies and magic.
We are so impressed with the staff at Miami Childrens. From the volunteers to the doctors. This campus is so clean and beautiful. I don't have a lot of pictures of it yet, because I keep forgetting to take my camera when I run down to get food. It is set right in the middle of a neighborhood, so it is quiet. Amenities are not far away though, the airport is probably 10 minutes from here and there are grocery stores, restaurants and other accommodations nearby. The hospital has even purchased an apartment complex nearby where families who are staying here for a long stretch can rent an apartment for a minimal fee. It sure helps our travel costs and has been nice to have a home base to shower, store all of our suitcases and be banished for a decent nights sleep every so often.
All of the entrances are shaded, even from the parking deck, so the children who are light sensitive are not exposed to sunlight. Obviously there are palm trees everywhere. A bonus for us! Both Brian and I really miss living in tropical climates. Everywhere you look, there are beautiful murals on the walls. Some even have mirrors incorporated for the children who like looking at their reflection. The pathways are easily marked by a color and coordinating animal, so if you do not speak English, you can get to where you need to by following the green line with the turtle, etc. The family center downstairs has a movie theatre, library, computers, and even offers laundry service. Seriously, we took our laundry down, they did it and brought it back up to us for free! They also have a dry cleaners on campus, but you have to pay for it. On Wed, the parents can schedule 20 minute massages-for free!
The hospital has a live radio show with games and prizes. The Radio Lollipop staff even coms to visit the patients every day. We have had more volunteers come here to visit Cole in three days, than we have in three years of hospitalizations. They enter armed with carts full of toys, board games and art projects. Plus, they actually stick around and play with him...for hours! He loves his latin ladies :) Last night, Cole was having a hard time waking up from a three hour nap and was burrowed into Brian's lap. He wouldn't talk to me, wouldn't talk to Brian, wouldn't Skype with grandma...he was just not into it. Two beautiful latin nurses came in and he popped right up and said, "HI"! He started just chatting like he had been awake for hours. Naughty boy! We were a little offended, grandma was too, but the staff really are gracious.
The child life specialists are awesome and come in every day to make sure Cole is adjusting well. Obviously he has been in the hospital a time or two, but for kids, this can be a scary place. They have someone place a book in front of his face for blood draws so he doesn't have to look at the needle, and then he gets real, full size toys as a prize for being so brave. We are going home with a full size Buzz Lightyear action figure (that I considered getting for Christmas but it was too expensive), a Mickey Mouse bowling set and a V Tech computer, complete with a mouse.
He also got a mini pillow pet, a fleece blanket and bubbles. Don't know where I am going to find the room for all of this in our luggage, but he has been having a great time. He is relaxed and happy. Usually when he is participating in an EEG he is grumpy and restless because he can not leave the room.
He has had visits from three therapy dogs. We have gotten the opportunity to talk a lot about Cole's service dog. It has just made us more and more excited for the day when Cole gets to finally meet his puppy.
The "Bedside Buddies" come at least twice a day with their carts of fun. He's been playing Candy Land and making pictures with glitter. Everything here is decorated to be geared towards children. Even the floor cleaning machine (which comes by every day I might add) has little wisps of steam and gears painted on it. The nurses carts look like race cars and everyone has a smile.
We have seen the specialists in our room multiple times. They spend a lot of time consulting with us instead of the usual come in, get the history, go out manner that we are used to. We have seen genetics, endocrinology, neurology, epileptology, dietitian, nurse practitioners, neuropsychology, and probably some others that I can't remember. I think I've done enough gushing for now, but this is the fourth hospital Cole has been in and I have been in several others myself. This is, by far, my favorite.
We are so impressed with the staff at Miami Childrens. From the volunteers to the doctors. This campus is so clean and beautiful. I don't have a lot of pictures of it yet, because I keep forgetting to take my camera when I run down to get food. It is set right in the middle of a neighborhood, so it is quiet. Amenities are not far away though, the airport is probably 10 minutes from here and there are grocery stores, restaurants and other accommodations nearby. The hospital has even purchased an apartment complex nearby where families who are staying here for a long stretch can rent an apartment for a minimal fee. It sure helps our travel costs and has been nice to have a home base to shower, store all of our suitcases and be banished for a decent nights sleep every so often. All of the entrances are shaded, even from the parking deck, so the children who are light sensitive are not exposed to sunlight. Obviously there are palm trees everywhere. A bonus for us! Both Brian and I really miss living in tropical climates. Everywhere you look, there are beautiful murals on the walls. Some even have mirrors incorporated for the children who like looking at their reflection. The pathways are easily marked by a color and coordinating animal, so if you do not speak English, you can get to where you need to by following the green line with the turtle, etc. The family center downstairs has a movie theatre, library, computers, and even offers laundry service. Seriously, we took our laundry down, they did it and brought it back up to us for free! They also have a dry cleaners on campus, but you have to pay for it. On Wed, the parents can schedule 20 minute massages-for free!
The hospital has a live radio show with games and prizes. The Radio Lollipop staff even coms to visit the patients every day. We have had more volunteers come here to visit Cole in three days, than we have in three years of hospitalizations. They enter armed with carts full of toys, board games and art projects. Plus, they actually stick around and play with him...for hours! He loves his latin ladies :) Last night, Cole was having a hard time waking up from a three hour nap and was burrowed into Brian's lap. He wouldn't talk to me, wouldn't talk to Brian, wouldn't Skype with grandma...he was just not into it. Two beautiful latin nurses came in and he popped right up and said, "HI"! He started just chatting like he had been awake for hours. Naughty boy! We were a little offended, grandma was too, but the staff really are gracious.
The child life specialists are awesome and come in every day to make sure Cole is adjusting well. Obviously he has been in the hospital a time or two, but for kids, this can be a scary place. They have someone place a book in front of his face for blood draws so he doesn't have to look at the needle, and then he gets real, full size toys as a prize for being so brave. We are going home with a full size Buzz Lightyear action figure (that I considered getting for Christmas but it was too expensive), a Mickey Mouse bowling set and a V Tech computer, complete with a mouse.
He also got a mini pillow pet, a fleece blanket and bubbles. Don't know where I am going to find the room for all of this in our luggage, but he has been having a great time. He is relaxed and happy. Usually when he is participating in an EEG he is grumpy and restless because he can not leave the room.
He has had visits from three therapy dogs. We have gotten the opportunity to talk a lot about Cole's service dog. It has just made us more and more excited for the day when Cole gets to finally meet his puppy.
The "Bedside Buddies" come at least twice a day with their carts of fun. He's been playing Candy Land and making pictures with glitter. Everything here is decorated to be geared towards children. Even the floor cleaning machine (which comes by every day I might add) has little wisps of steam and gears painted on it. The nurses carts look like race cars and everyone has a smile.
We have seen the specialists in our room multiple times. They spend a lot of time consulting with us instead of the usual come in, get the history, go out manner that we are used to. We have seen genetics, endocrinology, neurology, epileptology, dietitian, nurse practitioners, neuropsychology, and probably some others that I can't remember. I think I've done enough gushing for now, but this is the fourth hospital Cole has been in and I have been in several others myself. This is, by far, my favorite.
Making A Difference
We loved getting to see some of our friends from the IDEA League yesterday. We greeted each other with hugs even though we have only met in person once before. It really was like a reunion. One of our friends that lives here in Florida has a non-profit foundation. When wondering what to do with her foundations money this year, she did something different. Usually she makes donations to the Brain Institute here at Miami Childrens, but she decided to give out iPads instead. She only had enough money for 6, but in her words, "this will change their life". She then launched into a sweet spill about how this was all because of me. WHAT?! People are getting free iPads because of me? Maybe Apple finally got my letter about the commission they owe me for being a traveling iPad salesman! :) Let's backtrack.....
When we got Cole's iPad, it changed our life. We are so grateful for another parent who introduced it to us as a tool for kids with special needs and not just a really cool tech toy. It doubled Cole's vocabulary, was a great tool for distraction at doctors appointments, in the car, and proved itself useful again and again with making the internet available in the grocery store and everywhere else. I could wax rhapsodical on the iPad for an extended period of time..and have been known to. It's no secret I love it. When we went to the IDEA League Conference in August, I brought it with me. I made demonstrations in the hall, ballrooms, and even one by the pool. I talked to doctors, parents, administrators and everyone else who would listen. I told them that even though it was expensive, it was cheaper than a laptop, communication device, or a lot of other medical equipment out there. I probably went overboard, but I knew how much it had helped Cole, and in turn me. One of my demonstrations was to this woman and her friends. I probably accosted them in the hall at some point since their room was near ours. We talked on multiple occasions during the conference, but I can't remember my particular demo to her. This is before the New York Times article.
She said that she went home, thought about it, but didn't really believe me. How could something made for hip, tech savvy people help her disabled daughter? She kept on thinking about my gushing adoration for it though. A couple of months later she bought one, and it rocked their world. So, when deciding how to use the donated funds this year, she bought six Dravet families an iPad and an iTunes gift card. She then went on to tell me that these people don't even know that their lives are going to change today, but soon they will...and it is all because of me. To say the least, I was flattered. I didn't deserve the ovation she gave, I just wanted to share something that made a difference in our lives. She pulled out a notepad and wrote down apps I had found useful while simultaneously downloading them on her daughters.
She then shared ones that she liked. I guess it just goes to show that my big mouth really did something useful for once. So for all of you that have had to hear me go on and on and on about the iPad...I'm probably going to keep doing it.
When we got Cole's iPad, it changed our life. We are so grateful for another parent who introduced it to us as a tool for kids with special needs and not just a really cool tech toy. It doubled Cole's vocabulary, was a great tool for distraction at doctors appointments, in the car, and proved itself useful again and again with making the internet available in the grocery store and everywhere else. I could wax rhapsodical on the iPad for an extended period of time..and have been known to. It's no secret I love it. When we went to the IDEA League Conference in August, I brought it with me. I made demonstrations in the hall, ballrooms, and even one by the pool. I talked to doctors, parents, administrators and everyone else who would listen. I told them that even though it was expensive, it was cheaper than a laptop, communication device, or a lot of other medical equipment out there. I probably went overboard, but I knew how much it had helped Cole, and in turn me. One of my demonstrations was to this woman and her friends. I probably accosted them in the hall at some point since their room was near ours. We talked on multiple occasions during the conference, but I can't remember my particular demo to her. This is before the New York Times article.
She said that she went home, thought about it, but didn't really believe me. How could something made for hip, tech savvy people help her disabled daughter? She kept on thinking about my gushing adoration for it though. A couple of months later she bought one, and it rocked their world. So, when deciding how to use the donated funds this year, she bought six Dravet families an iPad and an iTunes gift card. She then went on to tell me that these people don't even know that their lives are going to change today, but soon they will...and it is all because of me. To say the least, I was flattered. I didn't deserve the ovation she gave, I just wanted to share something that made a difference in our lives. She pulled out a notepad and wrote down apps I had found useful while simultaneously downloading them on her daughters.
She then shared ones that she liked. I guess it just goes to show that my big mouth really did something useful for once. So for all of you that have had to hear me go on and on and on about the iPad...I'm probably going to keep doing it.
Wednesday, May 11, 2011
Clinic
Sorry for the late post. Last night I was banished to our little apartment down the street. By now we all know no sleep+stress+hospital food on an irregular schedule...does not equal good things for Niki. I, however, forgot that the apartment did not have internet.
Here is the post I had started before I was sent to my room.
Today we had the opportunity to attend the Ion Channel Clinic at Miami Childrens Hospital Brain Institute. This is one of the main reasons that we have chosen to focus Cole's care here, far away from our home. This hospital has the only group of specialists that focus on Dravet Syndrome and sodium channel disorders in the western world. The others are in Italy and France. Lovely locations, but no insurance is going to foot the bill :) There are other doctors in the U.S. that specialize in Dravet, but this is the only complete group that we are aware of. For a population that only has 1,000 in the world, for over 50 patients to be seen here, it means that they have the knowledge, experience and resources to treat someone with such a rare illness. We met some of the staff at the IDEA League conference in August 2010, and have had a few friends who have traveled here since then. We have been waiting for 9 months to attend this clinic. After fights with our old insurance, trying convince other medical professionals, a move, new insurance and negative time off..we were ready for this day.
As a medical professional in my past life, I was more than impressed. The structure they have set up is any parents (or social workers) dream. The waiting rooms are small, so you can always see the desk and they are not overcrowded. Beautiful murals decorated the walls of the hospital, but these are just white and large television screens are in each corner. However, if your child is prone to overstimulation, they have a separate room the has hardly any patterns, no tv and some some toys, set off to the side. They really have thought of everything. On clinic day, there are no other neurology appointments at the Brain Institute. Only the sodium channel kids come and it is more like a family reunion than a doctors appointment. The kids run free in the waiting room, and you don't have to worry about them disrupting anyone, because all of the staff and other parents already know their name. You are then shown to an exam room and you just stay there as the doctors come to YOU. In one room, on one day, you can see 5 doctors..and QUICKLY! That is unheard of in other hospitals I have been to. The dragging your child back and forth on different days, at different times can be life consuming. You have to rotate your entire schedule around the specific openings, because who knows when they could see you again? It is so refreshing to know that on the second Wednesday of every month, if I needed an appointment, I would be seen. You can make other appointments for emergencies, but wow-that would just make life so much more simple.
After clinic and seeing your doctors, everyone goes to the conference room, where they serve lunch and have a speaker. Once again, it is like a family reunion with the chatter floating around the room containing words like tonic-clonic, stiripentol and respite, instead of conversations about Uncle Albert's latest knee replacement. 
After everyone is finished eating, the speaker (usually one of the doctors from the clinic or another staff member from Miami Childrens) starts a discussion about a certain topic. The specialists are all there, so they can hear the parents concerns, wish list and progress from the previous month. There were physicians holding children during lunch and interacting with everyone like it was a true family gathering. This hospital realizes that it is not just about the medication and the diagnosis. Having a sick child is about an entire lifestyle change and every aspect is affected. Brian and I just stared in wonder most of the time. This hospital is so beautiful anyway, we felt like we were being transported to some sort of medical Disneyland! All of the pictures are from the luncheon in the conference room, so obviously it is not geared towards kids. I will post pics of the beautiful grounds and rooms soon!
They usually have someone to watch the children in a room across the hall during the speaker, so the parents can participate in the discussion. They pre-arrange for someone to come and sit with your child if they are on the unit so both parents can attend. Cole prefers people with carts of toys to us anyway :) Everyone signs up to get and e-mail afterwards with contact information of everyone attending and leaves with well wishes from doctors and parents alike. No one cares if your child starts screaming and clapping in the middle of a presentation. Everyone also has developed the weird sense of humor that is just like yours. It was truly a great experience.
For anyone who is reading this that has a child with Dravet Syndrome, I encourage you to look into Miami Childrens Brain Institute. The staff is warm and friendly and the treatments are cutting edge. They get two thumbs up from me, and that is kind of hard to achieve.
Here is the post I had started before I was sent to my room.
Today we had the opportunity to attend the Ion Channel Clinic at Miami Childrens Hospital Brain Institute. This is one of the main reasons that we have chosen to focus Cole's care here, far away from our home. This hospital has the only group of specialists that focus on Dravet Syndrome and sodium channel disorders in the western world. The others are in Italy and France. Lovely locations, but no insurance is going to foot the bill :) There are other doctors in the U.S. that specialize in Dravet, but this is the only complete group that we are aware of. For a population that only has 1,000 in the world, for over 50 patients to be seen here, it means that they have the knowledge, experience and resources to treat someone with such a rare illness. We met some of the staff at the IDEA League conference in August 2010, and have had a few friends who have traveled here since then. We have been waiting for 9 months to attend this clinic. After fights with our old insurance, trying convince other medical professionals, a move, new insurance and negative time off..we were ready for this day.
As a medical professional in my past life, I was more than impressed. The structure they have set up is any parents (or social workers) dream. The waiting rooms are small, so you can always see the desk and they are not overcrowded. Beautiful murals decorated the walls of the hospital, but these are just white and large television screens are in each corner. However, if your child is prone to overstimulation, they have a separate room the has hardly any patterns, no tv and some some toys, set off to the side. They really have thought of everything. On clinic day, there are no other neurology appointments at the Brain Institute. Only the sodium channel kids come and it is more like a family reunion than a doctors appointment. The kids run free in the waiting room, and you don't have to worry about them disrupting anyone, because all of the staff and other parents already know their name. You are then shown to an exam room and you just stay there as the doctors come to YOU. In one room, on one day, you can see 5 doctors..and QUICKLY! That is unheard of in other hospitals I have been to. The dragging your child back and forth on different days, at different times can be life consuming. You have to rotate your entire schedule around the specific openings, because who knows when they could see you again? It is so refreshing to know that on the second Wednesday of every month, if I needed an appointment, I would be seen. You can make other appointments for emergencies, but wow-that would just make life so much more simple.
After clinic and seeing your doctors, everyone goes to the conference room, where they serve lunch and have a speaker. Once again, it is like a family reunion with the chatter floating around the room containing words like tonic-clonic, stiripentol and respite, instead of conversations about Uncle Albert's latest knee replacement. 
After everyone is finished eating, the speaker (usually one of the doctors from the clinic or another staff member from Miami Childrens) starts a discussion about a certain topic. The specialists are all there, so they can hear the parents concerns, wish list and progress from the previous month. There were physicians holding children during lunch and interacting with everyone like it was a true family gathering. This hospital realizes that it is not just about the medication and the diagnosis. Having a sick child is about an entire lifestyle change and every aspect is affected. Brian and I just stared in wonder most of the time. This hospital is so beautiful anyway, we felt like we were being transported to some sort of medical Disneyland! All of the pictures are from the luncheon in the conference room, so obviously it is not geared towards kids. I will post pics of the beautiful grounds and rooms soon!They usually have someone to watch the children in a room across the hall during the speaker, so the parents can participate in the discussion. They pre-arrange for someone to come and sit with your child if they are on the unit so both parents can attend. Cole prefers people with carts of toys to us anyway :) Everyone signs up to get and e-mail afterwards with contact information of everyone attending and leaves with well wishes from doctors and parents alike. No one cares if your child starts screaming and clapping in the middle of a presentation. Everyone also has developed the weird sense of humor that is just like yours. It was truly a great experience.
For anyone who is reading this that has a child with Dravet Syndrome, I encourage you to look into Miami Childrens Brain Institute. The staff is warm and friendly and the treatments are cutting edge. They get two thumbs up from me, and that is kind of hard to achieve.
Tuesday, May 10, 2011
Might As Well Laugh About It
Cat's out of the bag...my chest isn't real.
and now most of the doctors with the Ion Channel Clinic know it.
It's no secret in my family that I have Victoria's Secret to thank for helping my clothes to fit. I don't know if it is mutation related or what, but I have a short neck, small shoulders, no waist and a pre-pubescent rack. So, I employ a hefty brassiere with gel inserts to help me look a little more my age. You kind of have to if your other option is a tag that says "Nearly A" instead of B, C, or DD.
This morning, Cole slept in like he usually does. I was in the hospital bed with him, my thumb on the trigger, ready to push at the slightest jerk. However, we were one of the first patients on the Dravet rounds. It helps that there are only 3 of us here right now :) The doctors all came piling in whilst we were still sleeping and I only had time to raise my head up on my elbow and grab my glasses before they launched into the plan for the day. I was hoping that I did not have old mascara smeared across my face and that my hair was not sticking on its end. I was certain that my bra was tucked underneath my pillow and I kept the covers pulled up under my armpits, while still lying down. I applaud people that can sleep with an underwire, but me...not so much.
It was not until the doctors left that I realized to my absolute horror that the aforementioned, dingy piece of equipment was laying out in the open on the rocking chair, right at eye level, next to the bed. Cole had another episode of soaking the sheets in the middle of the night and I had forgotten that I had placed it there while we changed the bed at 4:30 am.
They did not say anything during our half hour exchange, but I know they had to have noticed. Obviously, the only one it could belong to was me. Oh well, I'm sure that they chuckled to themselves later :) I'm positive they will eventually forget, but I'm going to add it to my long list of embarrassing moments.
and now most of the doctors with the Ion Channel Clinic know it.
It's no secret in my family that I have Victoria's Secret to thank for helping my clothes to fit. I don't know if it is mutation related or what, but I have a short neck, small shoulders, no waist and a pre-pubescent rack. So, I employ a hefty brassiere with gel inserts to help me look a little more my age. You kind of have to if your other option is a tag that says "Nearly A" instead of B, C, or DD.
This morning, Cole slept in like he usually does. I was in the hospital bed with him, my thumb on the trigger, ready to push at the slightest jerk. However, we were one of the first patients on the Dravet rounds. It helps that there are only 3 of us here right now :) The doctors all came piling in whilst we were still sleeping and I only had time to raise my head up on my elbow and grab my glasses before they launched into the plan for the day. I was hoping that I did not have old mascara smeared across my face and that my hair was not sticking on its end. I was certain that my bra was tucked underneath my pillow and I kept the covers pulled up under my armpits, while still lying down. I applaud people that can sleep with an underwire, but me...not so much.
It was not until the doctors left that I realized to my absolute horror that the aforementioned, dingy piece of equipment was laying out in the open on the rocking chair, right at eye level, next to the bed. Cole had another episode of soaking the sheets in the middle of the night and I had forgotten that I had placed it there while we changed the bed at 4:30 am.
They did not say anything during our half hour exchange, but I know they had to have noticed. Obviously, the only one it could belong to was me. Oh well, I'm sure that they chuckled to themselves later :) I'm positive they will eventually forget, but I'm going to add it to my long list of embarrassing moments.
Monday, May 9, 2011
The Beginning
We arrived in Florida last weekend and enjoyed a few days with our family. The weekend before I was in three inches of snow, freezing. This time, it was in the 80's and we went to the beach. I think I prefer the weather here :)
Don't get blinded from my un-naturally white skin. Haven't seen the sun for a while. It now resembles a paint horse. Red and white splotches. I guess that's what I get for self applying my sunscreen! It was sure great to see Cole laughing and smiling. He kept saying, "I am happy!" He even turned to me and said, "I glad you happy, Mama." I think that he could just tell that I was grateful to be there with him. He had not been to a beach since Sept 2009. A long time considering his parents love of the ocean. I had a few teary moments, just realizing once again that with a lot of work, he can have a good life too. I think I am just turning into a blubbering mess. I started to cry when we were coming through the airport and saw a Give Kids the World Village staff member waiting for their wish kid. I need my grandma to tell me to, "Stop your boobing Nik!"
Cole did great on the plane, thanks to Diastat :) He also did wonderful at the beach and in grandpa's pool. He only had one major seizure the entire weekend, but it was less than 3 minutes. He is sure going through a good phase with GTCs since he has gotten fat back into his system. Apparently, getting off keto is not an option for us :)
As usual, he is not being totally cooperative. He is right in his window for a long seizure, all hooked up to the EEG and just having lots of small ones. He has never had a generalized tonic clonic while hooked up to an EEG. It is always weird to hope that he has a really bad seizure.
We are really liking Miami Childrens. It seems like we have been waiting so long to get here. It has taken a lot of time and money, but we already feel like there is a good plan for our future. We are grateful to not have to explain ourselves to every single medical professional that comes in the room. We are also continuing to be impressed with the Dravet clinic staff. They weren't just putting on a good show in Connecticut :) They started Cole on Depakote yesterday, we had already discussed this before we came. So far, he is doing okay. Just restless as usual.
Hospitalizations are so hard on him, especially if he is "healthy". Being tied to the wall for 5 days is going to be rough! He loves to wander, but has to stay either in the bed or on the chair so the camera can capture all of the seizures. The doctors have already told us to stop pushing the button for the myoclonics and absence seizures, they have PLENTY of data! So, I don't have to ride the button to mark anything over 15 seconds. It's not even that I am trigger happy, he really is having that many seizures. I'm interested to see how many more he is having compared to the EEG last year.
Don't get blinded from my un-naturally white skin. Haven't seen the sun for a while. It now resembles a paint horse. Red and white splotches. I guess that's what I get for self applying my sunscreen! It was sure great to see Cole laughing and smiling. He kept saying, "I am happy!" He even turned to me and said, "I glad you happy, Mama." I think that he could just tell that I was grateful to be there with him. He had not been to a beach since Sept 2009. A long time considering his parents love of the ocean. I had a few teary moments, just realizing once again that with a lot of work, he can have a good life too. I think I am just turning into a blubbering mess. I started to cry when we were coming through the airport and saw a Give Kids the World Village staff member waiting for their wish kid. I need my grandma to tell me to, "Stop your boobing Nik!"
Cole did great on the plane, thanks to Diastat :) He also did wonderful at the beach and in grandpa's pool. He only had one major seizure the entire weekend, but it was less than 3 minutes. He is sure going through a good phase with GTCs since he has gotten fat back into his system. Apparently, getting off keto is not an option for us :)
As usual, he is not being totally cooperative. He is right in his window for a long seizure, all hooked up to the EEG and just having lots of small ones. He has never had a generalized tonic clonic while hooked up to an EEG. It is always weird to hope that he has a really bad seizure.
We are really liking Miami Childrens. It seems like we have been waiting so long to get here. It has taken a lot of time and money, but we already feel like there is a good plan for our future. We are grateful to not have to explain ourselves to every single medical professional that comes in the room. We are also continuing to be impressed with the Dravet clinic staff. They weren't just putting on a good show in Connecticut :) They started Cole on Depakote yesterday, we had already discussed this before we came. So far, he is doing okay. Just restless as usual. Hospitalizations are so hard on him, especially if he is "healthy". Being tied to the wall for 5 days is going to be rough! He loves to wander, but has to stay either in the bed or on the chair so the camera can capture all of the seizures. The doctors have already told us to stop pushing the button for the myoclonics and absence seizures, they have PLENTY of data! So, I don't have to ride the button to mark anything over 15 seconds. It's not even that I am trigger happy, he really is having that many seizures. I'm interested to see how many more he is having compared to the EEG last year.
Tuesday, May 3, 2011
Away
April wasn't the greatest month. For anyone around here. We did break through some barriers and have a little bit of fun in between all of the chaos. I am proud of the concentrated effort we made, otherwise I think someone would be talking to me through a little plexiglass window, while I was in my own, personal padded room.
I took a very brief hiatus and was able to see many people in a short period of time. Thank goodness for skymiles, eh? :) It was cheaper than therapy! lol Getting my hair done, Music and the Spoken Word, Little America Breakfast Buffet, some shopping and a good chin wag or two can cure almost any set of blues. Don't think murderous thoughts E, for me putting this up. One of these days we are going to get a decent picture of the both of us :)
After a late night arrival, I got to see sweet V for the first time and squeezed in meetings with some of my closest friends and family. It was super convenient that I came for a wedding, so I got to see family members that I have not seen since the last wedding, July 2010!
The weekend was a complete whirlwind full of wedding dress shopping for my little sister, hugs, and three inches of snow. Can't say that I miss blizzards at the end of April! I even had an impromptu birthday party thrown for me that included a dozen roses, a cake, candles, and the birthday song via Macbook Pro as I was running out of the door. It lasted 5 minutes, but the hostess was the sweetest person on earth. Love you C! I got to hold multiple babies that made my empty womb cry out in loneliness, but after I repeatedly told it to shut up, I snuggled to my hearts content. There is nothing better than holding a sleeping newborn.
A very short, wonderful break to prepare for the next week ahead. The last few days have been full of organizing and re-requesting medical records. It is so hard to get them when you can't be up in their face about how important it really is! Laundry, lists and phone calls. Can I just say, it was so wonderful to only pack for myself last weekend?! I did the whole thing in an hour, not a week :) Miami, here we come...get ready for Mini-Hulk, I'm sure he'll touch your hearts too.
I took a very brief hiatus and was able to see many people in a short period of time. Thank goodness for skymiles, eh? :) It was cheaper than therapy! lol Getting my hair done, Music and the Spoken Word, Little America Breakfast Buffet, some shopping and a good chin wag or two can cure almost any set of blues. Don't think murderous thoughts E, for me putting this up. One of these days we are going to get a decent picture of the both of us :)
After a late night arrival, I got to see sweet V for the first time and squeezed in meetings with some of my closest friends and family. It was super convenient that I came for a wedding, so I got to see family members that I have not seen since the last wedding, July 2010!
The weekend was a complete whirlwind full of wedding dress shopping for my little sister, hugs, and three inches of snow. Can't say that I miss blizzards at the end of April! I even had an impromptu birthday party thrown for me that included a dozen roses, a cake, candles, and the birthday song via Macbook Pro as I was running out of the door. It lasted 5 minutes, but the hostess was the sweetest person on earth. Love you C! I got to hold multiple babies that made my empty womb cry out in loneliness, but after I repeatedly told it to shut up, I snuggled to my hearts content. There is nothing better than holding a sleeping newborn.
A very short, wonderful break to prepare for the next week ahead. The last few days have been full of organizing and re-requesting medical records. It is so hard to get them when you can't be up in their face about how important it really is! Laundry, lists and phone calls. Can I just say, it was so wonderful to only pack for myself last weekend?! I did the whole thing in an hour, not a week :) Miami, here we come...get ready for Mini-Hulk, I'm sure he'll touch your hearts too.
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