Funny how life works...in my previous post from Saturday, after all of the excitement of Hudson "playing" with his toy, I thought I should try and capture his interactions on video. I also have been hoping to get a clip of his tonic seizures because last Friday I got a call from the Neurology dept. and they made an appointment for Hudson to see Dr. S and the dietitian. Last time we were in with Dr. S was in June, and I had tried my best to describe the seizures but could never capture one on video because by the time I see it coming, turn on the camera, the "biggie" is over. So I have been trying to think of how prepared I need to be at all times, so that I can get one of the ugly beasts on video before we go see him on Oct. 12th.
I didn't get much of his wonderful playing, as you will see. I think all of the playing before the seizure struck and then once it hit he wasn't up for a whole lot, finally getting sleepy eyes. Miss Thing, Hailey, had to get her little cutie patootie self in there, so it is not all gloom and doom.
I also think it is interesting to see how other children seizures look like compared to your own. Yes, in this crazy I.S. world we don't compare milestones, it's all about seizures! Not comparing whose is worse or better, just seeing all the different looks and facets when it comes to the world of I.S. and seizures.
So, this is a tonic seizure, sometimes they can be a little stronger than this one, sometimes weaker, but I think this is one of the "uglies." Afterwards he has a small, very mild cluster of spasms, which you can mostly see in his eyes. Again, to the untrained eye you probably wouldn't know these are seizures, but I am sure all of the I.S. moms out there will spot them.
click here for video;
A Glimpse into seizures
Tuesday, September 29, 2009
Saturday, September 26, 2009
Games
I never thought I would say this, but I think Hudson is playing with me! You know how babies love to play that game where they have a toy and they throw it to the ground, you go pick it up, give it back to them, then they toss it again and this game can go on forever until you take that toy away? Well I think Hudson is playing that game with me! He is sitting at his high chair with a toy on his tray and he bats at it and bats at it until he throws it on the floor...he has done this 10 times....10 TIMES! I have a hard time believeing this is just an accident. If I don't go over right away to give it to him he gets vocal...yeah for Hudson!
He has also been doing wonderful with rolling over from back to belly and then getting himself on his back again. And eye contact has been really great lately too...cool things...he is working so hard, you can just see it, it is all such hard work for him. I have noticed a huge improvement when he is on his belly and lifting his head, he is actually holding it up and turning his head. These are big improvements!
Not sure what to accredit to. The seizures are still very present. About 5 tonic seizures a day with some very mild spasms...some single and some clusters, but clusters remain small at about 10.
The Depakote? Oh, don't get me started...in short, I have noticed when I try to give it to him thru the G-tube they either get stuck in the med syringe or in the bolus tube...they don't dissolve! (that was now 11 times :) with the toy!) So then I gave it to him with applesauce and he has been doing great eating it and getting it down. I thought I found the solution to my problem until about 4 hours after he had his a.m. dose he pooped and I noticed all these white beads in his poop!!!! So I emailed the mito nurse and she got back to me saying that she would call in a new prescription for syrup form...o.k. why wouldn't they give us that to begin with?? I opened the 2nd email from her and she said, no they couldn't prescribe that with Hudson on the Keto diet so just give it to him with the applesauce. Keto diet? He hasn't been on that for months! I am sort of fried with this whole thing. (A) I don't know how much of the depakote he is actually getting, and (B) shouldn't they know he is NOT on the Keto diet? and (C) Email me or call me back after I have made it very clear that administering a syrup would be far easier and I could have a much better idea of how this drug is working! I must have called 5 times yesterday, only left 1 message, but come on!Ughhhhh! So today he goes up to the full dose, but I honestly don't think he is even at the level he should be with the difficulty of getting these little beads down and how much is he really absorbing? Of course now it is the weekend so I continue with the applesauce method.....So frustrating!
Tonight I am going with a friend out to dinner and then to the Casting Crowns concert! Should be awesome...and a fun little getaway for the evening! So Paul is in charge of the three monkey's tonight...I have chillii in the crock pot so they are set for dinner....and I am off for a fun night!
Thanks to all for the prayers this last week and always! Life can have so many up's and downs, and sometimes the down's are super overwhelming...there is so much comfort knowing so many are lifting us up in prayer! I had phone calls, emails,messages on this site, even both of my kids teachers...I got an email from Hailey's and when I was volunteering the other day at the school Hunter's teacher came up to me and told me that Hunter asked her if they could pray for Hudson and all of those who have Mitochondrial disease, she told me the whole class prayed per Hunter's request. I had tears well up...so cool to have my kids go to school and get the love, prayers and support from teachers and classmates!
Games are over...little Hudson was taken out of the high chair after the 11th throw...don't know if it was flukey or on purpose but I tend to think there is a little boy in that seizure body, trying to interact...God bless him for trying so hard!
He has also been doing wonderful with rolling over from back to belly and then getting himself on his back again. And eye contact has been really great lately too...cool things...he is working so hard, you can just see it, it is all such hard work for him. I have noticed a huge improvement when he is on his belly and lifting his head, he is actually holding it up and turning his head. These are big improvements!
Not sure what to accredit to. The seizures are still very present. About 5 tonic seizures a day with some very mild spasms...some single and some clusters, but clusters remain small at about 10.
The Depakote? Oh, don't get me started...in short, I have noticed when I try to give it to him thru the G-tube they either get stuck in the med syringe or in the bolus tube...they don't dissolve! (that was now 11 times :) with the toy!) So then I gave it to him with applesauce and he has been doing great eating it and getting it down. I thought I found the solution to my problem until about 4 hours after he had his a.m. dose he pooped and I noticed all these white beads in his poop!!!! So I emailed the mito nurse and she got back to me saying that she would call in a new prescription for syrup form...o.k. why wouldn't they give us that to begin with?? I opened the 2nd email from her and she said, no they couldn't prescribe that with Hudson on the Keto diet so just give it to him with the applesauce. Keto diet? He hasn't been on that for months! I am sort of fried with this whole thing. (A) I don't know how much of the depakote he is actually getting, and (B) shouldn't they know he is NOT on the Keto diet? and (C) Email me or call me back after I have made it very clear that administering a syrup would be far easier and I could have a much better idea of how this drug is working! I must have called 5 times yesterday, only left 1 message, but come on!Ughhhhh! So today he goes up to the full dose, but I honestly don't think he is even at the level he should be with the difficulty of getting these little beads down and how much is he really absorbing? Of course now it is the weekend so I continue with the applesauce method.....So frustrating!
Tonight I am going with a friend out to dinner and then to the Casting Crowns concert! Should be awesome...and a fun little getaway for the evening! So Paul is in charge of the three monkey's tonight...I have chillii in the crock pot so they are set for dinner....and I am off for a fun night!
Thanks to all for the prayers this last week and always! Life can have so many up's and downs, and sometimes the down's are super overwhelming...there is so much comfort knowing so many are lifting us up in prayer! I had phone calls, emails,messages on this site, even both of my kids teachers...I got an email from Hailey's and when I was volunteering the other day at the school Hunter's teacher came up to me and told me that Hunter asked her if they could pray for Hudson and all of those who have Mitochondrial disease, she told me the whole class prayed per Hunter's request. I had tears well up...so cool to have my kids go to school and get the love, prayers and support from teachers and classmates!
Games are over...little Hudson was taken out of the high chair after the 11th throw...don't know if it was flukey or on purpose but I tend to think there is a little boy in that seizure body, trying to interact...God bless him for trying so hard!
Wednesday, September 23, 2009
Hudson's Candle
(click above for Hudson's candle)
Quite an emotional morning....lots of reflecting, praying, tears. Right before 10:00 a.m., Hudson had a biggie, he cried out and I ran to his side and after he was done seizing I left him to recover....to get a lighter and candle. I sat next to him and he was passed out just like so. I don't mean to be dramatic, I plan on doing some "happy" posts, it's just the reality of this disease and that fact that Hudson suffers so greatly from it...it just is really tough, and I just despise Mito disease and all it does to my baby.
Heavenly Father....I pray for all the families who suffer in some form from this disease...parents, children, grandparents, brother and sisters...it is the entire family who feels the pain,as the effects of this disease ripples through these families. For those who are inflicted with Mitochondrial disorder, Lord I ask that you bring peace and comfort over them today.I pray for those doctors and scientists that are researching this disease, that You will lead them to find a cure so that no more lives would be lost. I pray for all those who have gone home to You, who no longer endure the suffering of Mito...I pray for their families, their loss and Your peace over them today and always.
I pray that Your healing hands would touch the life of Hudson and he would be delivered from all that has been placed before him, that You would use him as your vessel, and that ultimately Hudson's life would bring You glory. In Jesus Name I pray....Amen.
Monday, September 21, 2009
SEPTEMBER 20-26 IS NATIONAL MITOCHONDRIAL DISEASE AWARENESS WEEK
I have posted some video links on Hudson's blog to help raise awareness of Mitochondrial disease and it's effects. If you have time please check them out.
Light a Light for Mito
On Wednesday, September 23rd, at 10:00 a.m. internationally, families and friends are encouraged to "Light a Light for Mito” in honor of all who are afflicted by Mito and in memory of the babies, children and adults who have lost their battle with mitochondrial disease.
Please light a candle and pray for a cure for Hudson and all of those who are affected by this disease.
Please light a candle and pray for a cure for Hudson and all of those who are affected by this disease.
Sunday, September 20, 2009
2 Years Ago Today...
our lives would forever change, two years ago today... we heard the words "infantile spasms" for the very first time, two years ago today... our baby boy had his first EEG, one of many more to come, two years ago today... we lost our perception of what we thought was a healthy baby boy, two years ago today... the tears of fear of the unknown began, two years ago today... the endless days and nights of research began, two years ago today... our faith was tested beyond comprehension, two years ago today... began endless testing, poking and prodding, two years ago today...I was terrified to look at my son as his body seized, two years ago today...my worst fear became a living nightmare, two years ago today...I was afraid to face the truth and read anything that had to do with infantile spasms, two years ago today...I did not want to imagine that Hudson would be anything but typical, two years ago today...dreams were shattered as I was told my son suffered from a "rare" seizure disorder, two years ago today...the road map of our lives took an unexpected detour, forever changing.
Two years later...I realize what a precious, special gift Hudson is, two years later...I now know I can only live for today and try not to worry about tomorrow, two years later...I realize every day with Hudson is a gift from God, two years later...I stare down every seizure that invades his tiny body and pray over him for a miracle, two years later. ..I marvel at Hudson learning to completely roll over, eating orally, making sounds at the age of 2, two years later...I am so proud to be Hudson's mommy and so proud of his accomplishments, two years later...I know I am not in control, God is, two years later...I am honored to know and be among amazing "super mom's" who care for their own special needs baby, two years later...I realize I am being taught life lessons by the smallest teacher I know, my 2 year old, two years later...I know this is not "rare"and that there are many families who know the face of I.S., two years later...when I look in the eyes of my boy, I see his soul and life piercing through, two years later...I now know why my son suffers from intractable seizures, two year s later...I not only cry tears of sorrow, but tears of joy...Hudson is here, I can hold him, hug him and kiss him, two years later...I believe Hudson is capable of anything, two years later...I know that if I don't see my son running, playing, talking here on earth, I know we will do those things together in heaven, two years later...I am a blessed mom to know and care for Hudson,and I love him for exactly who he is today.
Two years later...I realize what a precious, special gift Hudson is, two years later...I now know I can only live for today and try not to worry about tomorrow, two years later...I realize every day with Hudson is a gift from God, two years later...I stare down every seizure that invades his tiny body and pray over him for a miracle, two years later. ..I marvel at Hudson learning to completely roll over, eating orally, making sounds at the age of 2, two years later...I am so proud to be Hudson's mommy and so proud of his accomplishments, two years later...I know I am not in control, God is, two years later...I am honored to know and be among amazing "super mom's" who care for their own special needs baby, two years later...I realize I am being taught life lessons by the smallest teacher I know, my 2 year old, two years later...I know this is not "rare"and that there are many families who know the face of I.S., two years later...when I look in the eyes of my boy, I see his soul and life piercing through, two years later...I now know why my son suffers from intractable seizures, two year s later...I not only cry tears of sorrow, but tears of joy...Hudson is here, I can hold him, hug him and kiss him, two years later...I believe Hudson is capable of anything, two years later...I know that if I don't see my son running, playing, talking here on earth, I know we will do those things together in heaven, two years later...I am a blessed mom to know and care for Hudson,and I love him for exactly who he is today.
Thursday, September 17, 2009
Thinking Happy Thoughts...............................well trying anyways!
It is so easy to focus on the blahhh....you know, mind in overdrive going places it shouldn't....it is so easy to go there and stay there and get stuck! So in spite of the fact that right now Hudson is snoring in his booster chair, out cold, because he had a ugly tonic seizure, and there is a spider on steroids lingering on my wall, perched high above where it can not be reached, and the fact that all my clothes are sitting in our bath tub because a wall in our closet, with 2 shelves and 2 racks, ripped out of the wall and came tumbling down causing a huge mess, in spite of the ugliness of it all, I will try and focus on the good! TRY is the key word!
*This morning I got to be a parent helper in Hunter's and Hailey's class! I officially am the Thursday mom. Hunter's first year in Kindergarten is when it all went down with Hudson, and for the last 2 years I have not been able to commit to anything when it comes to school. Hunter had talked to me about this summer, and I knew it was very important to him and me that I be involved on a weekly basis. Trust me, there has been much guilt for not being there the last 2 years. I certainly did not want Hailey's K-year to go the way Hunter's went. So I promised the kids that I would make it work this year to be a classroom helper. So the plan is on Thursday's I drop Hudson off to my mom on our way out to school and spend one hour in Hunter's class and then an hour in Hailey's. My mom was gracious enough to commit to giving me that for the other 2 and it means the world!
* Hudson hasn't been throwing up! yeah! not sure why, but I'll take it! I am sure it will happen later today as it always seems to backfire if I announce anything good...oh crud, I did it ...started the stinkin thinking again...ok...happy thoughts......No barf, yeah! which means less laundry...huge yeah!!!!
* Going out to happy hour with my mom and friend tomorrow to celebrate a birthday...woooohoooo!
*Hudson rolled over yesterday from back to belly...that makes 3 times now! he gets so fired up that he does this to himself, he hates his tummy time!
* Today I got a card in the mail, from a friend I talk to daily and see almost daily. There is something about that.....getting a card in the mail, to let you know you are loved and being lifted in prayer.....put a :) on my face!
That's all I got...can't think of anymore things to be happy about....
Oh, wait I got one more.....
thanks to all who encourage me with messages of advice, support, and prayer.It helps in every way, even on the darkest days!
XOXO Deb
*This morning I got to be a parent helper in Hunter's and Hailey's class! I officially am the Thursday mom. Hunter's first year in Kindergarten is when it all went down with Hudson, and for the last 2 years I have not been able to commit to anything when it comes to school. Hunter had talked to me about this summer, and I knew it was very important to him and me that I be involved on a weekly basis. Trust me, there has been much guilt for not being there the last 2 years. I certainly did not want Hailey's K-year to go the way Hunter's went. So I promised the kids that I would make it work this year to be a classroom helper. So the plan is on Thursday's I drop Hudson off to my mom on our way out to school and spend one hour in Hunter's class and then an hour in Hailey's. My mom was gracious enough to commit to giving me that for the other 2 and it means the world!
* Hudson hasn't been throwing up! yeah! not sure why, but I'll take it! I am sure it will happen later today as it always seems to backfire if I announce anything good...oh crud, I did it ...started the stinkin thinking again...ok...happy thoughts......No barf, yeah! which means less laundry...huge yeah!!!!
* Going out to happy hour with my mom and friend tomorrow to celebrate a birthday...woooohoooo!
*Hudson rolled over yesterday from back to belly...that makes 3 times now! he gets so fired up that he does this to himself, he hates his tummy time!
* Today I got a card in the mail, from a friend I talk to daily and see almost daily. There is something about that.....getting a card in the mail, to let you know you are loved and being lifted in prayer.....put a :) on my face!
That's all I got...can't think of anymore things to be happy about....
Oh, wait I got one more.....
thanks to all who encourage me with messages of advice, support, and prayer.It helps in every way, even on the darkest days!
XOXO Deb
Tuesday, September 15, 2009
My Flooded Brain
Have you ever felt like your brain is flooded with overwhelming thoughts, fears, anxiety, stress, and you can't turn it off? I find myself thinking about things that I need to lay to rest, because I have no control of what lies ahead, in the future. I have been going down the path lately, of what I am going to do when Hudson turns three? Now I know this 8 months down the road, which seems like a long time, but things will change and not for the better! Here in WA, we have a birth to 3 program through our county. All of Hudson's therapy is coordinated through this program and they pick up the co-pay for approved therapies. To date this includes O.T., P.T., Visual Therapy, Visual Developmental Dr., and Oral Therapy. In May, at age 3, it all ends. Hudson is turned over to the school district...well, not really....because there is no way I am handing my baby over to a school....the county even talked about putting him on a school bus...my jaw dropped over this conversation...NO WAY! Unless God has a miracle in store for us in the next 8 months...he will not be "babysat" among typical and special needs children in a classroom...it is just ridiculous to me. So the school district will have no choice but to send a teacher to our home...not sure how that all plays out....haven't had that "talk" yet. I start wondering how we will pay for all of these therapies on our own in 8 months...I worry I will have to cut down on treatment just because of money. It is tough because we have also been denied for supplemental insurance through the state (medicaid) so we get no help. All very overwhelming to think about. Therapy is vital for Hudson, the thought of weeding out only what we can afford makes me sick.
Depakote....so far I am seeing little to no change in seizures. He only gets 1/2 a capsule in the a.m. and the other half in the p.m. I have noticed slight decrease in intensity of the tonic...he is not crying out in terror like he was a week ago, although they are still very gripping. So these capsules I open up, I have to guess about what is a half dose, and pour it into a medicine cup. These tiny beads do not dissolve well in water. I suck them up in a medicine syringe. I can't help but stare at these tiny beads floating about, and the flooded thoughts storm my brain wondering if these beads will banish the monster. So much hope in one little vial. All of the past vials have brought nothing but disappointment, hard to know so much lies in this vial of swishy little beads. Saturday will be our next increase.
More thoughts ......... I have also been thinking alot about this swine flu garbage. All you hear about is how those who are at risk with compromised immune systems...I can't fathom loosing my little one to the flu....yet I don't feel comfortable with the vaccination either....those of you who know me well, know how I feel about vaccinations....not a fan. Hudson has never been vaccinated, I certainly don't feel comfortable giving him a vaccine that is so new...so for now I keep a Costco size pump bottle of sanitizer in my car and sanitize the heck out of me, my kids, any one who enters my car!
I am happy to say on this low dose, thus far, I am not seeing any major dopiness, or mood changes. He is moving like crazy still, which gives me hope, becasue the more active, the more muscle and strength he will build, and with more strength brings hopes that one day he will suprise us all and have purposeful movement. My daughter prays every night for Hudson, and lately she prays that he will walk. Oh, how I wish the Lord would take that whisper of prayer and tuck it into Hudson's future.
On Sunday we witnessed a huge event...Hudson rolled from his back to his belly! A first! When I first saw it I instantly ran to look at his face to see if it was a seizure that caused the movement( sad that is my first instinct)...nope....he did it all on his own....not just once but twice that day!
Another cool moment over the weekend....Hudson was under his jungle mat on his back as I was cleaning from dinner. All of us were in the kitchen and Hudson was in the living room, Hudson was making noises but we didn't give it alot of thought. Paul went in the living room and calls me in there....Hudson had scooted himself under the t.v. cabinet and only his torso was showing! Never did I think I would be joyful to see my 2 year old with his head under a cabinet....but it meant two things....the noise we were hearing was him trying to tell us he was not in a good place and he is moving..... I love the fact that he is no longer staionary...he is like a little baby trying to figure out how to get around! He is even pulling his knees in which is great for those ab muscles....hoping all this activity continues and strengthens him.
Friday I am excited to say Hudson will start therapy in the pool at our local YMCA. Our P.T. told me to take that time and go do something for myself...so I will be getting my tired booty on a machine...it will be good for me...Hunter will be in the poot too, so I only have to put Hailey in child care. This will be good for Hudson's muscles. We experimented a little this summer with one of our O.T.'s and Hudson did very well, so I think this will be a wonderful therapy to continue and do on a weekly basis.
Hopefully sleep is in my future...it is not because of any kids keeping me up, in fact, all of my kids have been sleeping great ( I am not sure how some of you mom's out there do it....the lack of sleep thing....I get a few of those "up all night with Hudson" occasionally, but for the most part he is a great sleeper) it is my flooded brain that won't let me rest, those uncontrollable thoughts that I try to turn off at the end of the day....but waves of anxiety, fear, stress come crashing in....like tidal waves....so last night I prayed....I prayed for Hudson and for all of the sick children out there...their families...their fears and anxieties.......I prayed and the tidal wave came to a halt.......I prayed until I fell asleep.........I guess I will be doing lots of praying at bed time, when it is quiet, dark and I am left alone with my thoughts.... I will pray and flood my brain with God's word, His peace, His love and His comfort.
Depakote....so far I am seeing little to no change in seizures. He only gets 1/2 a capsule in the a.m. and the other half in the p.m. I have noticed slight decrease in intensity of the tonic...he is not crying out in terror like he was a week ago, although they are still very gripping. So these capsules I open up, I have to guess about what is a half dose, and pour it into a medicine cup. These tiny beads do not dissolve well in water. I suck them up in a medicine syringe. I can't help but stare at these tiny beads floating about, and the flooded thoughts storm my brain wondering if these beads will banish the monster. So much hope in one little vial. All of the past vials have brought nothing but disappointment, hard to know so much lies in this vial of swishy little beads. Saturday will be our next increase.
More thoughts ......... I have also been thinking alot about this swine flu garbage. All you hear about is how those who are at risk with compromised immune systems...I can't fathom loosing my little one to the flu....yet I don't feel comfortable with the vaccination either....those of you who know me well, know how I feel about vaccinations....not a fan. Hudson has never been vaccinated, I certainly don't feel comfortable giving him a vaccine that is so new...so for now I keep a Costco size pump bottle of sanitizer in my car and sanitize the heck out of me, my kids, any one who enters my car!
I am happy to say on this low dose, thus far, I am not seeing any major dopiness, or mood changes. He is moving like crazy still, which gives me hope, becasue the more active, the more muscle and strength he will build, and with more strength brings hopes that one day he will suprise us all and have purposeful movement. My daughter prays every night for Hudson, and lately she prays that he will walk. Oh, how I wish the Lord would take that whisper of prayer and tuck it into Hudson's future.
On Sunday we witnessed a huge event...Hudson rolled from his back to his belly! A first! When I first saw it I instantly ran to look at his face to see if it was a seizure that caused the movement( sad that is my first instinct)...nope....he did it all on his own....not just once but twice that day!
Another cool moment over the weekend....Hudson was under his jungle mat on his back as I was cleaning from dinner. All of us were in the kitchen and Hudson was in the living room, Hudson was making noises but we didn't give it alot of thought. Paul went in the living room and calls me in there....Hudson had scooted himself under the t.v. cabinet and only his torso was showing! Never did I think I would be joyful to see my 2 year old with his head under a cabinet....but it meant two things....the noise we were hearing was him trying to tell us he was not in a good place and he is moving..... I love the fact that he is no longer staionary...he is like a little baby trying to figure out how to get around! He is even pulling his knees in which is great for those ab muscles....hoping all this activity continues and strengthens him.
Friday I am excited to say Hudson will start therapy in the pool at our local YMCA. Our P.T. told me to take that time and go do something for myself...so I will be getting my tired booty on a machine...it will be good for me...Hunter will be in the poot too, so I only have to put Hailey in child care. This will be good for Hudson's muscles. We experimented a little this summer with one of our O.T.'s and Hudson did very well, so I think this will be a wonderful therapy to continue and do on a weekly basis.
Hopefully sleep is in my future...it is not because of any kids keeping me up, in fact, all of my kids have been sleeping great ( I am not sure how some of you mom's out there do it....the lack of sleep thing....I get a few of those "up all night with Hudson" occasionally, but for the most part he is a great sleeper) it is my flooded brain that won't let me rest, those uncontrollable thoughts that I try to turn off at the end of the day....but waves of anxiety, fear, stress come crashing in....like tidal waves....so last night I prayed....I prayed for Hudson and for all of the sick children out there...their families...their fears and anxieties.......I prayed and the tidal wave came to a halt.......I prayed until I fell asleep.........I guess I will be doing lots of praying at bed time, when it is quiet, dark and I am left alone with my thoughts.... I will pray and flood my brain with God's word, His peace, His love and His comfort.
Friday, September 11, 2009
Extra Prayers Needed
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
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
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!