This whole seizure gig throws me for a loop...about 1 1/2 months ago Hudson became as close to seizure freedom as he has ever been. I had days of seeing no tonic seizures, and no apparent cluster of spasms. Did I believe in my gut we had reach the ultimate glory of being seizure free? Oh no, I knew all the chaos was still flooding his brain...but I did see smiles return (which is one of the pictures posted on our blog, in fact I went picture-crazy!) and a more alert, happy Hudson. As weeks went by I saw the face of spasms slowly creep on us, then slowly tonic seizures began revealing their ugly face...very slowly. It seems with time, since the days of questioning if I had even seen a seizure/spasms, they have become more apparent, slightly stronger with each passing day, Which brings me to to today....which has been just an awful seizure day...if I video recorded these I think spectators would be floored.....heart-wrenching, scary, helpless, sad, painful...all of the emotions that flood me as I sit and watch...helpless.Not that all types of seizures witnessed don't flood us with those emotions, but these seizures terrify me, they are that bad and hard to watch, and take such a toll on hos little body. Hudson is stiff, for what seems to be forever, it is gripping on his little body, his entire face tightens along with his body....and then as he comes out ....screams of terror, Hudson is shreiking with terror and is at the mercy of the seizure that controls his body. As I sit with him and watch, I stroke his head, hold his face.... cry. After the tonic grip comes spasms. These are still mild, but have gotten stronger since our barely apparent days. His eyes squint and get heavy along with tensing in his body...he probably has about 5-10 of these spasms in a cluster, as of lately. Back in the day when we are all about spasms...he was having upward to 80 in a cluster, so...not sure what is worse.....80 spasms in a cluster several times a day, or 4-8 tonic seizures with mini spasm/clusters? THEY ALL SUCK!!!!
Why this seizure thing throws me for a loop is because Hudson is on the same diet/meds now that he was on 1 1/2 months ago when we had a break in seizures...nothing has changed the last few months...NOTHING...so what is making his seizures worse today? I just don't get it!
I picked up Depakote on Wednesday, like I said, but have not started it. Tomorrow morning I will give him his first dose. I will give him half capsule in the a.m. and a half in the p.m. for 7 days. Then I will give 1 in the a.m. and a 1/2 capsule in the p.m. for seven days, then a full capsule in the a.m and a full capsule in the p.m. and get levels drawn in 10 days. That's our schedule. Tomorrow is our start day....that is why I need prayer...Hudson needs prayer...I know I have been asking alot of prayer on this one stinkin med, but when you get the talk about this is "it"........ this is the last one to try...all I can do is rely on prayer, and my faith in God....knowing He knows exactly why Hudson endures this daily battle, and I rest in Him whether he will deliver Hudson from this or the battle continues. I will continue praying for Hudson's miracle, whether or not this drug works, prayers for a miracle will be said...please pray along with me on this one.
xoxo Deb
Friday, September 11, 2009
Wednesday, September 9, 2009
Our Road Trip
For the most part things went well last weekend. I took the kids to my girlfriends house in Orondo, WA, close to Lake Chelan. They live in a resort community, Sun Cove, all year round, and Mel has been begging me to come visit. She lived in Baltimore, MD the last 5 years so we haven't had the luxury of getting the kids together or hopping in the car to see each other for some time. Because I love her, I got brave and independent, and decided I would do this. I would drive, single parently, me and my 3 kids across 2 mountain passes (about 3 hour drive) to see my best friend and her kids. There were many things that could have curtailed this trip, which was solely my head thinking too much about doing this...what if one has to go potty? I can't just run in and leave the others in the car....what if Hudson goes into a unconsolable crying jag and keeps everyone awake?...what if I forget a med/supply/food for Hudson? I would have to drive all the way home because his needs are many and vital...well, I didn't let any of this stop me...I did it, by myself, and I am darn proud of me! I have learned and decided that I will not let Hudson's illness be a crutch for why I can't do something I would normally do had he been typical. I have a choice to make life as normal as I can make it for our circumstances. So, all in all really happy I went. Was it relaxing? Well, no...my husband got that gift ...he had the house all to himself for 4 days...he got the "vacation" but I did get to see my kids have a blast with their friends....swimming at the clubhouse, having the freedom to run around, bike, scooter, skateboard, run to neighbors houses...no parents were panicked that a kid would get snatched....for the most part a very safe resort community where everyone knows one another.
Mel and I got some alone time, not as much as we would have liked, but enough to catch up on all that we needed to. She was so great with Hudson, which I knew she would be. It was the first time she really got to see what he is like. She is not afraid of Hudson. Some people treat Hudson like he might break...stare from afar, say hi, and simply just seem frightened that he is not typical. It bugs me. I know it shouldn't... but he is a baby,he wants to be held, and cooed and talked to just like any other baby...not patted on the head or stared at like he is something other than a baby. Anyways, Mel sent me to the pool with the kids one of the days...it was way too hot for Hudson and no shade. She took care of him, held him, loved on him and when I came back she had him upstairs with her all cozy wrapped in a comforter. It was as if she wrapped my heart with him...and I got that cozy feeling seeing my best friend loving on my baby like that. I wish she lived closer, but happy it is now only a 3 hour drive vs. Baltimore, MD. I know if she was here she would be one of Hudson's biggest cheerleaders. Good to have friends like that!
On the med front.....I am a total wimp....haven't picked up the new script yet....you know, something to do with the fact that that this our "last ditch effort" med to try and stop these monsters....yesterday I got in line at the drive up pharmacy and ended up backing up and leaving. Hudson, in spite of the tonics coming back full force...I am talking the tightening, gasping, stiffening seizures that make him cry out in fear as he comes out of it...in spite of those, he is still really alert all day, moving his eyes all around and scooting himself all around on the floor. I don't want to loose that. I am afraid of loosing what little of Hudson I have, to yet another drug, and all it's side effects...not to mention finding out if it will even do anything seizure wise.
Today will be the day though...because Paul asked me to pick up his prescription, so I will have to pick up Hudson's, then I will have to decide when to start it...tomorrow maybe? We'll see.
That's it for now...please pray for Hudson as we start this new drug, and also over all my fears...I need to just give it to God...I know.
xoxo Deb
Pics from our weekend .....
THE GANG.......everyone rides golf carts to get around Sun Cove...kids loved it!
Hailey razoring through Sun Cove
BOATING TO CHELAN
Mason, Hunter, Marina, Hailey
Mason and Hailey taking a hot-tub!
Hunter at the pool
Kids are making chocolate chip pancakes!
Hailey and Marina at their local store-it was soooo cute!(the store was! :)
Hudson at the annual Chili cook-off!
Marina and Hudson
Mel and I got some alone time, not as much as we would have liked, but enough to catch up on all that we needed to. She was so great with Hudson, which I knew she would be. It was the first time she really got to see what he is like. She is not afraid of Hudson. Some people treat Hudson like he might break...stare from afar, say hi, and simply just seem frightened that he is not typical. It bugs me. I know it shouldn't... but he is a baby,he wants to be held, and cooed and talked to just like any other baby...not patted on the head or stared at like he is something other than a baby. Anyways, Mel sent me to the pool with the kids one of the days...it was way too hot for Hudson and no shade. She took care of him, held him, loved on him and when I came back she had him upstairs with her all cozy wrapped in a comforter. It was as if she wrapped my heart with him...and I got that cozy feeling seeing my best friend loving on my baby like that. I wish she lived closer, but happy it is now only a 3 hour drive vs. Baltimore, MD. I know if she was here she would be one of Hudson's biggest cheerleaders. Good to have friends like that!
On the med front.....I am a total wimp....haven't picked up the new script yet....you know, something to do with the fact that that this our "last ditch effort" med to try and stop these monsters....yesterday I got in line at the drive up pharmacy and ended up backing up and leaving. Hudson, in spite of the tonics coming back full force...I am talking the tightening, gasping, stiffening seizures that make him cry out in fear as he comes out of it...in spite of those, he is still really alert all day, moving his eyes all around and scooting himself all around on the floor. I don't want to loose that. I am afraid of loosing what little of Hudson I have, to yet another drug, and all it's side effects...not to mention finding out if it will even do anything seizure wise.
Today will be the day though...because Paul asked me to pick up his prescription, so I will have to pick up Hudson's, then I will have to decide when to start it...tomorrow maybe? We'll see.
That's it for now...please pray for Hudson as we start this new drug, and also over all my fears...I need to just give it to God...I know.
xoxo Deb
Pics from our weekend .....
THE GANG.......everyone rides golf carts to get around Sun Cove...kids loved it!
Hailey razoring through Sun Cove
BOATING TO CHELAN
Mason, Hunter, Marina, Hailey
Mason and Hailey taking a hot-tub!
Hunter at the pool
Kids are making chocolate chip pancakes!
Hailey and Marina at their local store-it was soooo cute!(the store was! :)
Monday, September 7, 2009
New Week, New Drug
Lots to update...I just got home last night...road tripping with three kids, over the mountains, through the woods, to my girlfriends house we went...will save that for another post, when I download pictures...besides I don't want to bore you all to death with a super long post!
So last week I finally got a call from the mito nurse. I had emailed both her and our neuro several times concerning Hudson, seizures and just the fact that I need a "plan." I need to know even though we are not seen, for months at a time, I need to know we are not forgotten about. That is my job, to keep Hudson on their radar screen, to remind them he is my world, and I am fighting with him daily to stop these freakin seizures!
I came home last Wednesday from taking the kids to DQ for their back to school treat, and somehow I didn't notice the red blinking light on my answering machine until 6ish. I never miss that red light, but wouldn't you know it, it was the mito nurse. She left me a message and said something like this....
" Hi Debbie, it's ---, from Dr. S's office, and I am just calling to see how Hudson is doing and how his seizures are. Dr. S says if the seizures are the same we will try Valporic Acid. It is the last...(hesistation) it is the last sort of event to try, so when I hear from you I will send over the prescription to your pharmacy."
LAST event ....what the hell? Sorry, but that message just put a pit in my stomach, her message implied it was our last ditch effort to try and stop the seizures. So, I talked to her the following day. I told her I felt like her message implied no hope. She basically told me that we have tried the best drugs that treat spasms, and this is pretty much the only thing we have not tried yet, and that Dr. S was hesitant about starting it because it is the last thing to try. Is there no hope? Do we just write Hudson off ? Is Hudson just out of site out of mind? I mean, I know he is 1 of many patients, but he is MY CHILD!!!!!! That is how she made me feel. I was choking up on the phone, trying to hold back my tears. She said of course there is hope and there are always study dugs/therapies in the works, and no we don't forget about Hudson. Lets just say she is not the warm and fuzzy type. Anyways, I know there are many drugs we have not tried, I read about all the others out there and what drug other kids are on, and lots of them we have not tried. I also realize we have tried the best that treat I.S.
All very depressing, not the way I wanted to start big holiday weekend road trip!
Tomorrow I will pick up our "last ditch effort" med. Hate to say it, but I don't want to start it, I mean, I just don't want to know if we are at the end of the road with trying to banish these monsters. I look at Hudson and it just kills me, he has no idea what life has to offer, all he knows is seizures, vomitting, choking, crying....he is so innocent, so helpless...he is also strong willed, and although I don't feel like there is a lot of hope and at times, when I think of how impacted he is, I just want to wrap him in my arms and take him in my bed and throw the covers over both our heads and just stay there, holding him tight, praying one day we will wake up from this nightmare. Reality is... this nightmare is our life, our "new normal" and we will continue fighting, and continuing hoping in spite of what any nurse, or Dr. says!
Prayers are appreciated as we start this drug.
xoxo Deb
So last week I finally got a call from the mito nurse. I had emailed both her and our neuro several times concerning Hudson, seizures and just the fact that I need a "plan." I need to know even though we are not seen, for months at a time, I need to know we are not forgotten about. That is my job, to keep Hudson on their radar screen, to remind them he is my world, and I am fighting with him daily to stop these freakin seizures!
I came home last Wednesday from taking the kids to DQ for their back to school treat, and somehow I didn't notice the red blinking light on my answering machine until 6ish. I never miss that red light, but wouldn't you know it, it was the mito nurse. She left me a message and said something like this....
" Hi Debbie, it's ---, from Dr. S's office, and I am just calling to see how Hudson is doing and how his seizures are. Dr. S says if the seizures are the same we will try Valporic Acid. It is the last...(hesistation) it is the last sort of event to try, so when I hear from you I will send over the prescription to your pharmacy."
LAST event ....what the hell? Sorry, but that message just put a pit in my stomach, her message implied it was our last ditch effort to try and stop the seizures. So, I talked to her the following day. I told her I felt like her message implied no hope. She basically told me that we have tried the best drugs that treat spasms, and this is pretty much the only thing we have not tried yet, and that Dr. S was hesitant about starting it because it is the last thing to try. Is there no hope? Do we just write Hudson off ? Is Hudson just out of site out of mind? I mean, I know he is 1 of many patients, but he is MY CHILD!!!!!! That is how she made me feel. I was choking up on the phone, trying to hold back my tears. She said of course there is hope and there are always study dugs/therapies in the works, and no we don't forget about Hudson. Lets just say she is not the warm and fuzzy type. Anyways, I know there are many drugs we have not tried, I read about all the others out there and what drug other kids are on, and lots of them we have not tried. I also realize we have tried the best that treat I.S.
All very depressing, not the way I wanted to start big holiday weekend road trip!
Tomorrow I will pick up our "last ditch effort" med. Hate to say it, but I don't want to start it, I mean, I just don't want to know if we are at the end of the road with trying to banish these monsters. I look at Hudson and it just kills me, he has no idea what life has to offer, all he knows is seizures, vomitting, choking, crying....he is so innocent, so helpless...he is also strong willed, and although I don't feel like there is a lot of hope and at times, when I think of how impacted he is, I just want to wrap him in my arms and take him in my bed and throw the covers over both our heads and just stay there, holding him tight, praying one day we will wake up from this nightmare. Reality is... this nightmare is our life, our "new normal" and we will continue fighting, and continuing hoping in spite of what any nurse, or Dr. says!
Prayers are appreciated as we start this drug.
xoxo Deb
Wednesday, September 2, 2009
Back to School
Both kids were pretty excited this morning, no troubles getting them up bright and early to get ready for school. Haily starting Kindergarten is pretty cool, she is ready. I really wasn't that emotional, just because she has always been so independent and confident. So I was just excited for her. Hunter is a veteran now, as he starts 2nd grade. He gets embarrassed, me taking pictures, giving him smooches before leaving. I think the kicker was when I whipped out my video camera, he looked like he wanted to crawl in a hole! Oh well, they just grow up too darn fast!
Hudson is doing o.k. I am a little nervous about my trip to Lake Chelan because the last few night Hudson has been waking up crying, restless, and I get up and go in and put his moblie on and put a weighted blanket on him and it seems to do the trick, but I just don't want to get to my girlfriends house and have him waking everybody up over there. I remeber when my kids were babies, and they would wake up and couldn't self soothe yet, and so I would have to turn the mobile on to help them fall asleep, well it is just like that for Hudson, only he is 2, not an infant!!! Oh well, cognitively he is an infant,and at least he is consolable for now!
Seizures are about the same. So weird because looking back to when the spasms first started and he wasn't doing the crunches he started with these weird eye deviations, and it was nealry impossible to catch it so I could show someone something weird was going on, cause I knew something was not right. Well, that is what Hudson is doing .So he is having about 4-5 seizures a day, where he makes tight fists, and legs and arms straighten out in front of him and he stiffens and then he slowly comes out of it and then he has the weird eye things through the day, but no huge, ugly, clusters. I don't really know if it is any better than the huge ugly clusters brain wise, but it looks better!
I will end with this...
Last week we had a kick off for school. We got to meet the teachers and see the classrooms, etc. It is easy because Hailey's teacher already knows our whole story, in fact she has been following my CB site from the beginning, so there is no explaining Hudson and what we deal with, she knows and it is wonderful!
So we meet Hunter's teacher, Hunter introduces himself, then Hailey, and then she asks who the little guy is in the stroller. Now mind you Hudson in is a typical umbrella stroller, because we still don't have his medical stroller, and he looks pretty big in it, and he is reclined because he can't sit straight up on his own, and I introduce the teacher to Hudson. Then she asks how old he is...btw, I hate that question, becasue at 2 he obviously should be walking, talking, interacting and so it forces me to say something. So I tell her he is 2, but he is a sick baby, and suffers from seizures (the simplest expalnation!) and this was her response, which I loved...."Well, he is just perfectly who God wanted him to be, what an angel." It was beautiful, no.... "oh I am so sorry",or " poor thing","oh, it must be so hard" I loved her simple response, and she just moved on, it was great...because I always get that pit in my stomach of having to explain things to somebody when I am asked how old he is. That is when that handy brochure, of a run-down of our past 2 years, would be so perfect!
Quiet has turned to tears...Hudson is awake now, crying...gotta run!
xoxo Deb
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Hudson Tyler
Our sweet angel!