Monday, February 28, 2011
Sunday, February 27, 2011
The devastation of mitochondrial disease....
This was not where I was planning to go with this post this morning.....
but my heart is breaking for yet another mito family and the loss of their precious daughter.
Please go to God on their behalf....for comfort, and peace during an unimaginable time.
I was going to get on here and complain about the horrific seizure days Hudson has been having.
It seems hard to do after reading about Maggie. Hudson is here, she is not. Whether I have to see endless seizures, he is here....a great reminder to hold onto in the days to come.
A while back, I thought 8 tonic spasms a day, sprinkled with constant myclonic jerks was a *BAD* day.
The past 3 days, Hudson has been doubling that number...some days I loose count....I have seen and counted around 16 tonic spasms. At first I thought maybe he was getting sick, which would increase seizures, but I have yet to see a thing develop. He looks like he doesn't feel well...eyes heavy and droopy, and with each hard seizure he sounds very "junky", but I know this is all seizure related and not illness related.
The kids and I went to a friends for dinner last night and what Hudson was doing in a day with tonic spasms, he did within 2 hours of being at their house. He manged to have about 5! Surprisingly, he did not pass out from having that many in a short amount of time...but I am not ok with this continuing like this. It's hard to hear, as he cries out, it's hard to watch, and physically it has to be harmful. This is all happening upon just increasing his lamictal almost 1 week ago. I am ready to take him to the hospital and have labs drawn...I have already made the call to the mito nurse, and I will be backing it will a email today.
This morning he is sleeping peacefully. I really, really wanted to go to church...my kids even asked to go to church...but I don't want to wake him up. I love that he is resting peacefully and not seizing. Why wake him to likely seize? Then if I do go and take him to church, and he is seizing the way he has been, I will have to stroller him out because his seizures start as a long, loud cry which turns into gasping and crying...so why make the effort for both of us to be miserable? It's just easier to stay home...
Lastly....in light of the Agnew family....take time to thank God for your children....if you too have a sick child, you know this weighs heavy in the mind that this one day could be your family, it's impossible for me not to go there when I read about the loss....if your children are healthy....thank God you don't have to imagine this could be you some day as this type of devastation isn't in the forefront of your mind....I guess it is just a great reminder for all of us to be thankful for today, to be mindful of all the little moments in a day that might otherwise be taken for granted.
but my heart is breaking for yet another mito family and the loss of their precious daughter.
Please go to God on their behalf....for comfort, and peace during an unimaginable time.
I was going to get on here and complain about the horrific seizure days Hudson has been having.
It seems hard to do after reading about Maggie. Hudson is here, she is not. Whether I have to see endless seizures, he is here....a great reminder to hold onto in the days to come.
A while back, I thought 8 tonic spasms a day, sprinkled with constant myclonic jerks was a *BAD* day.
The past 3 days, Hudson has been doubling that number...some days I loose count....I have seen and counted around 16 tonic spasms. At first I thought maybe he was getting sick, which would increase seizures, but I have yet to see a thing develop. He looks like he doesn't feel well...eyes heavy and droopy, and with each hard seizure he sounds very "junky", but I know this is all seizure related and not illness related.
The kids and I went to a friends for dinner last night and what Hudson was doing in a day with tonic spasms, he did within 2 hours of being at their house. He manged to have about 5! Surprisingly, he did not pass out from having that many in a short amount of time...but I am not ok with this continuing like this. It's hard to hear, as he cries out, it's hard to watch, and physically it has to be harmful. This is all happening upon just increasing his lamictal almost 1 week ago. I am ready to take him to the hospital and have labs drawn...I have already made the call to the mito nurse, and I will be backing it will a email today.
This morning he is sleeping peacefully. I really, really wanted to go to church...my kids even asked to go to church...but I don't want to wake him up. I love that he is resting peacefully and not seizing. Why wake him to likely seize? Then if I do go and take him to church, and he is seizing the way he has been, I will have to stroller him out because his seizures start as a long, loud cry which turns into gasping and crying...so why make the effort for both of us to be miserable? It's just easier to stay home...
Lastly....in light of the Agnew family....take time to thank God for your children....if you too have a sick child, you know this weighs heavy in the mind that this one day could be your family, it's impossible for me not to go there when I read about the loss....if your children are healthy....thank God you don't have to imagine this could be you some day as this type of devastation isn't in the forefront of your mind....I guess it is just a great reminder for all of us to be thankful for today, to be mindful of all the little moments in a day that might otherwise be taken for granted.
Friday, February 25, 2011
Bringing a mom to tears
That's exactly what I did the other day....
and she's not the first.
I work in a Mom's Morning Out program at a local church. We have a group of regulars that sign up for the quarter, and then we have drop in's too. We get many toddlers all the way through school age (typically home schoolers)
Our "regulars" over time, get to know us caretakers...some mom's drop and dash, others stick around and we start talking and well......watch out!
Anyways, this week, one of our regular moms, who drops her 2 year old son and 4 year old daughter, started shooting the breeze with me. Somehow we got on the subject at what a horrible system we have here in WA, for those who need state help, and just the whole system in general...unemployment, DSHS, help for special needs,etc.
Well I couldn't help but inform her of how we get NO help from the state. Middle class is the worst class when your in our shoes. She was shocked I get no medicaid, nursing, no help with medical equipment, etc.
The conversation got deep when she asked specifically what is wrong with Hudson. I got the typical response, "I have never heard of mitochondrial disease, what is it?" After the explaining what it is and how it effects my son, she asked the next typical question..."How do you treat it, what is the prognosis?"
In the beginning of this journey,I couldn't even say the word infantile spasm, or seizure without breaking down into full on tears, to the point I couldn't form words and speak, it was just too upsetting. As time went on, I found myself being able to explain mito, and how it effects Hudson, but when I would get to the devastation of this disease, and the fact there is no cure, and all of the unknown, the tears would flow uncontrollably.
With this mom, I went through the whole gig, explained it all....and as I told her where I am at with it all....
when I told her my faith in God is the only reason I can talk about it, that my faith that Hudson's illness and life has greater purpose than we can ever even imagine, when I explained that my little boy is teaching life lessons through his small, frail broken body....unimaginable lessons, how brave and strong he is that is only God given, and how I feel that he is a living angel in my life...how I cherish and praise God for every day I am given with him, and finally I believe that if his healing does not come to him on this side of heaven, I know we will be holding hands, running and laughing, on the other side...one day I will see him whole.
This time....I had tears welled up, but my cheeks were dry....
but.... as I looked at her....the tears were flowing uncontrollably. She said what I have been through would be her worst nightmare, that she thinks there are many out there that wouldn't see Hudson the way I see Hudson...they would only see his brokenness, his imperfections, his illness....I think she understood my coping and peace, comes from God, not from my ability to understand how and why. She told me she had 5 miscarriages before her 3 kids. I can sympathize, but I have never lost an unborn baby, I don't know that pain. I don't know how that feels to want something so bad, and have a little life die inside you, time after time. I don't know what it is to walk in those shoes.
....if you are not in my shoes, you can't possibly understand how you get to a place where your baby seizing endlessly year after year, day after day, hour after hour....becomes normal. You can't imagine how you can be told your child has an incurable disease and after that there is a day you will find joy again.
I am not saying my heart doesn't ache for Hudson on a daily basis...it does.
I am not saying I will ever be comfortable with the future...it terrifies me.
I am not saying I will ever be at a place where I will be prepared to loose Hudson...it seems unbearable.
What I am saying..
is that somehow time is healing. You cry less. You worry less. You don't try to be predictor of the future. You can't possibly prepare for the worst....instead you enjoy and cherish what you are given today....the time, the love, the snuggles...all those priceless things you don't ever want to loose sight of.
Having my sick child has brought more tears that I ever imagined I could cry.
My tears fall on the inside as well as the outside. It seems I am getting good at internally crying and I find others crying for me and Hudson.
It's o.k.....I think if i was mother to 3 healthy kids and met Hudson and I, I think I would cry for them too.
and she's not the first.
I work in a Mom's Morning Out program at a local church. We have a group of regulars that sign up for the quarter, and then we have drop in's too. We get many toddlers all the way through school age (typically home schoolers)
Our "regulars" over time, get to know us caretakers...some mom's drop and dash, others stick around and we start talking and well......watch out!
Anyways, this week, one of our regular moms, who drops her 2 year old son and 4 year old daughter, started shooting the breeze with me. Somehow we got on the subject at what a horrible system we have here in WA, for those who need state help, and just the whole system in general...unemployment, DSHS, help for special needs,etc.
Well I couldn't help but inform her of how we get NO help from the state. Middle class is the worst class when your in our shoes. She was shocked I get no medicaid, nursing, no help with medical equipment, etc.
The conversation got deep when she asked specifically what is wrong with Hudson. I got the typical response, "I have never heard of mitochondrial disease, what is it?" After the explaining what it is and how it effects my son, she asked the next typical question..."How do you treat it, what is the prognosis?"
In the beginning of this journey,I couldn't even say the word infantile spasm, or seizure without breaking down into full on tears, to the point I couldn't form words and speak, it was just too upsetting. As time went on, I found myself being able to explain mito, and how it effects Hudson, but when I would get to the devastation of this disease, and the fact there is no cure, and all of the unknown, the tears would flow uncontrollably.
With this mom, I went through the whole gig, explained it all....and as I told her where I am at with it all....
when I told her my faith in God is the only reason I can talk about it, that my faith that Hudson's illness and life has greater purpose than we can ever even imagine, when I explained that my little boy is teaching life lessons through his small, frail broken body....unimaginable lessons, how brave and strong he is that is only God given, and how I feel that he is a living angel in my life...how I cherish and praise God for every day I am given with him, and finally I believe that if his healing does not come to him on this side of heaven, I know we will be holding hands, running and laughing, on the other side...one day I will see him whole.
This time....I had tears welled up, but my cheeks were dry....
but.... as I looked at her....the tears were flowing uncontrollably. She said what I have been through would be her worst nightmare, that she thinks there are many out there that wouldn't see Hudson the way I see Hudson...they would only see his brokenness, his imperfections, his illness....I think she understood my coping and peace, comes from God, not from my ability to understand how and why. She told me she had 5 miscarriages before her 3 kids. I can sympathize, but I have never lost an unborn baby, I don't know that pain. I don't know how that feels to want something so bad, and have a little life die inside you, time after time. I don't know what it is to walk in those shoes.
....if you are not in my shoes, you can't possibly understand how you get to a place where your baby seizing endlessly year after year, day after day, hour after hour....becomes normal. You can't imagine how you can be told your child has an incurable disease and after that there is a day you will find joy again.
I am not saying my heart doesn't ache for Hudson on a daily basis...it does.
I am not saying I will ever be comfortable with the future...it terrifies me.
I am not saying I will ever be at a place where I will be prepared to loose Hudson...it seems unbearable.
What I am saying..
is that somehow time is healing. You cry less. You worry less. You don't try to be predictor of the future. You can't possibly prepare for the worst....instead you enjoy and cherish what you are given today....the time, the love, the snuggles...all those priceless things you don't ever want to loose sight of.
Having my sick child has brought more tears that I ever imagined I could cry.
My tears fall on the inside as well as the outside. It seems I am getting good at internally crying and I find others crying for me and Hudson.
It's o.k.....I think if i was mother to 3 healthy kids and met Hudson and I, I think I would cry for them too.
Tuesday, February 22, 2011
2 day get away!
My kids had a 4 day weekend, so I decided to pack the car and head to Portland, Oregon for the weekend.
We left Friday after school, spent waaaay to much time in traffic and pouring down rain, but made it safely after a very long drive.
If you don't know me personally.....I am super close to my older brother. We were typical brother/sister growing up, but in the last 10 years God has done amazing things to our relationship. My brother came to Christ about 10 years ago....his heart and mind were completely transformed, in only ways God can change a person. I have loved witnessing his passion and fire as he learns about this amazing God that loves us all so much....I am so grateful to God for my brother.
My brother is an airline pilot and is based in Portland. He lives right downtown in the city....once we parked my car we never piled in it again til we left Sunday afternoon. Marc has never been married/has no kids, so my kids are his subject of spoiling and love....it's so great...they adore their Uncle!
The first night we just stayed in....I didn't pull up til close to 7...so we were ready to just unwind....
The kids had all kinds of treats, only their Uncle gets them, all ready and waiting. We drank some REALLY good wine and had fresh basil, mozzarella, tomato and bread....for me it was to late to eat a big dinner, so it was perfect!
Saturday was a beautiful sunshiny day in Portland. We left Marc's by foot at 12 and didn't return til 5! We walked down by the river, all over the city, did a little shopping, coffee stops, etc. So fun! the kids did great and Hudson spent the entire 5 hours in his stroller and did amazing.
That night we walked to my brothers favorite sushi place.....
I have to say...coming from Gig Harbor and spending the weekend in the city...you realize how very sheltered we are. We saw many interesting, eclectic individuals. The area where we were at for dinner was interesting....lots of piercings, tattoos,colorful hair....its funny how the kids don't really notice the differences. Hunter did mention something when we were downtown that afternoon and across the street we saw a women on the ground drunk/drugged...couldn't walk...falling in the streets and on cars, screaming...it was really sad. We walked across the street on our way home, after dinner, and passed a row of drag queens, sitting outside this bar smoking and likely getting ready to perform...Marc and I were cracking up....the kids were clueless...and sorta wondering what we were laughing at.....
have you ever seen a row of drag queens all made up and ready to perform??
Oh my....you can't help but chuckle!
The kids had so much fun and it was great for me to get a change of scenery (I think!LOL)
My brother and I always have a ton of fun...
I think Hailey and Hunter are way closer as kids than Marc and I were....I hope it lasts and grows throughout their lifetime ....your brother or sister will always have your back in life...I have learned that....that is huge in life!
Hudson was a trooper as always....his seizures are still very present...not clustering as much....a little less in numbers....but they attack. He slept great, and was a little angel!
Tomorrow...back to somewhat normal routine...Hunter and Hailey go back to school (they are in private)...because the public school are out all week, Hudson's home based therapies are off this week....I don't mind the break....gives me a little more freedom....and I can use some to try and get caught up on some stuff!
Thanks Uncle Marc for the FUN over the weekend!!!!!
We left Friday after school, spent waaaay to much time in traffic and pouring down rain, but made it safely after a very long drive.
If you don't know me personally.....I am super close to my older brother. We were typical brother/sister growing up, but in the last 10 years God has done amazing things to our relationship. My brother came to Christ about 10 years ago....his heart and mind were completely transformed, in only ways God can change a person. I have loved witnessing his passion and fire as he learns about this amazing God that loves us all so much....I am so grateful to God for my brother.
My brother is an airline pilot and is based in Portland. He lives right downtown in the city....once we parked my car we never piled in it again til we left Sunday afternoon. Marc has never been married/has no kids, so my kids are his subject of spoiling and love....it's so great...they adore their Uncle!
The first night we just stayed in....I didn't pull up til close to 7...so we were ready to just unwind....
The kids had all kinds of treats, only their Uncle gets them, all ready and waiting. We drank some REALLY good wine and had fresh basil, mozzarella, tomato and bread....for me it was to late to eat a big dinner, so it was perfect!
Saturday was a beautiful sunshiny day in Portland. We left Marc's by foot at 12 and didn't return til 5! We walked down by the river, all over the city, did a little shopping, coffee stops, etc. So fun! the kids did great and Hudson spent the entire 5 hours in his stroller and did amazing.
That night we walked to my brothers favorite sushi place.....
I have to say...coming from Gig Harbor and spending the weekend in the city...you realize how very sheltered we are. We saw many interesting, eclectic individuals. The area where we were at for dinner was interesting....lots of piercings, tattoos,colorful hair....its funny how the kids don't really notice the differences. Hunter did mention something when we were downtown that afternoon and across the street we saw a women on the ground drunk/drugged...couldn't walk...falling in the streets and on cars, screaming...it was really sad. We walked across the street on our way home, after dinner, and passed a row of drag queens, sitting outside this bar smoking and likely getting ready to perform...Marc and I were cracking up....the kids were clueless...and sorta wondering what we were laughing at.....
have you ever seen a row of drag queens all made up and ready to perform??
Oh my....you can't help but chuckle!
The kids had so much fun and it was great for me to get a change of scenery (I think!LOL)
My brother and I always have a ton of fun...
I think Hailey and Hunter are way closer as kids than Marc and I were....I hope it lasts and grows throughout their lifetime ....your brother or sister will always have your back in life...I have learned that....that is huge in life!
Hudson was a trooper as always....his seizures are still very present...not clustering as much....a little less in numbers....but they attack. He slept great, and was a little angel!
Tomorrow...back to somewhat normal routine...Hunter and Hailey go back to school (they are in private)...because the public school are out all week, Hudson's home based therapies are off this week....I don't mind the break....gives me a little more freedom....and I can use some to try and get caught up on some stuff!
Thanks Uncle Marc for the FUN over the weekend!!!!!
 |
| Among the Ben and Jerry's mini ice cream cups, the white castle sliders, were the lemon bars only Uncle gets for the kids from Whole Foods...they think they are a slice of heaven!Lol |
 |
| Coffee at Peets |
 |
| Hailey fell down a grassy hill...I couldn't help myself but snap a picture! |
Thursday, February 17, 2011
Tuesday, February 15, 2011
strange happenings...
I cautiously am about to reveal some crazy weird stuff that's been going on with my littlest H....
Yesterday and today have just been plain weird....Hudson has had no major seizure episodes...no hard tonics...you know...the 6-8 of those monsters he has been having every day...I am not really superstitious BUT I notice a trend of when I reveal things, they tend to go south...but how could I not want to shout this one out...even if it is only for 2 days (praying longer)
The strange part is...his behaviour is just weird too....
As the day goes he gets more and more "noisy" as if he is "talking" and by night it is more awnrey and upset, with a tear or two...but he can be noisy and awnrey for hours...today it started around 12:30 and didn't stop til I out him to bed...ahhhhh....the quiet sounds good right now! I am not complaining....trust me, I will take anything over seizures....but it does a get a little piercing....8 hours of talking/crying/screaming/whining.....
He had a day last Thurs. where he got this way, mainly crying for hours, and he did have about 6 tonics in about a 2 hour period...so I had contacted our team and his Nero wanted me to go down on the Vimpat, because we increased a few weeks ago. I was suppose to take him from 75mg/50mg a day to 50mg/50mg....since they don't have therapeutic levels for that drug, he felt it was possible that could be causing the change in behavior. Thing is.....I never took him down....I don't know, just felt like maybe his crying episode was one day...not days to come....and so the next day he was fine, and over the weekend fine....no crying episodes. So I felt good about keeping him at the higher dose of Vimpat.
Then last Friday, I get an email (who I promised to keep anonymous), asking if I was ok if Hudson was prayed for by a group of Godly men who gather every Saturday morning. I was told they would just pray for him...no specifics would be given, no name or condition, because God knows the details already. I am always grateful to anyone or group who wants to go to God on our little guys behalf....of course I said "yes!"
And here we are a few days later....
I don't know if any of Hudson's changes are related to these men gathering and praying for Hudson...I do believe in the power of prayer and the force behind faithful, godly men praying...it is all very powerful....
What I do know is that Hudson wasn't gripped today or yesterday by those hard awful seizures. I have seen some quick jerks, some spasms, but nothing like I normally see in a day. The other crazy thing is, when I hold him and get in his face and talk to him softly, in that mommy voice, he would quiet...as if he was listening....and responding.....to me! Crazy! When he is "talking" more than the crying, he is using more sounds...I was hearing m's (I am always in his face saying "momma" cuz I am convinced one day he will say it back to me) and b's, and o's.....I even felt a glimpse here and there he was looking at me, in my eyes, as I was talking to him. Last night he instantly went to sleep and it seems tonight again....I think he wears himself out with all that's going on. I realize this could be a neurological change or happening within...his behavior is literally wild, like he is a little animal....but again, I'll take that any day over seizures!
I also had one last super weird but cool incident tonight....I laid him down in his crib and then went into Hunter and Hailey's room to tuck them in. Hudson had been quiet prior to me picking him up and carrying him off to his room. I noticed he was "talking" again, which I found odd as he had seemed like sleepiness was setting in. After I left the kids room, turned off the light in the hall bathroom, I realized I never turned on Hudson's music/light show that he gets every night at bedtime. I ran back in his room, apologized to him, kissed his sweet face again, turned it on, and instantly he quieted down!!!! He's been quiet since. Pretty crazy...but pretty cool, huh???
Today his PT from school came over for our regular session. She loved the feisty Hudson. He was moving a ton and actually his muscles were pretty fired up...in fact she said to me "You should take a picture, look how well he is holding his head!"
In these pics she had him standing and kneeling with only her support, no devices.
Clearly he is less than thrilled but look at his head! Normally he flops his head right over onto the ottoman in a allaha position, which is why she suggested the picture!
I found it pretty remarkable and I take it, just like I take the crappy seizure days we are so used to having, one day at a time. I know tomorrow may look different...but I rejoice in today...even if my ears are still ringing with Hudson yelling and screaming...it's all good! :)
************
On a Valentine note...had to share some pics....cuz like I said...Hudson was one big crab a$$ yesterday!
lucky you...you are spared the crying! lol
I really didn't want to get my kids chocolate or anything sweet...they both had parties at school and I knew more sweets was the last thing they needed.
They were thrilled beyond belief to have sushi .....they are soooooo my kids!!!
Pour things were drenched from the rain here yesterday....happy...but drenched!
**************************
Happy to share some pretty cool, strange happenings for once....praying things would only continue to get better......praise God for giving me and Hudson 2 wild and crazy days!
Yesterday and today have just been plain weird....Hudson has had no major seizure episodes...no hard tonics...you know...the 6-8 of those monsters he has been having every day...I am not really superstitious BUT I notice a trend of when I reveal things, they tend to go south...but how could I not want to shout this one out...even if it is only for 2 days (praying longer)
The strange part is...his behaviour is just weird too....
As the day goes he gets more and more "noisy" as if he is "talking" and by night it is more awnrey and upset, with a tear or two...but he can be noisy and awnrey for hours...today it started around 12:30 and didn't stop til I out him to bed...ahhhhh....the quiet sounds good right now! I am not complaining....trust me, I will take anything over seizures....but it does a get a little piercing....8 hours of talking/crying/screaming/whining.....
He had a day last Thurs. where he got this way, mainly crying for hours, and he did have about 6 tonics in about a 2 hour period...so I had contacted our team and his Nero wanted me to go down on the Vimpat, because we increased a few weeks ago. I was suppose to take him from 75mg/50mg a day to 50mg/50mg....since they don't have therapeutic levels for that drug, he felt it was possible that could be causing the change in behavior. Thing is.....I never took him down....I don't know, just felt like maybe his crying episode was one day...not days to come....and so the next day he was fine, and over the weekend fine....no crying episodes. So I felt good about keeping him at the higher dose of Vimpat.
Then last Friday, I get an email (who I promised to keep anonymous), asking if I was ok if Hudson was prayed for by a group of Godly men who gather every Saturday morning. I was told they would just pray for him...no specifics would be given, no name or condition, because God knows the details already. I am always grateful to anyone or group who wants to go to God on our little guys behalf....of course I said "yes!"
And here we are a few days later....
I don't know if any of Hudson's changes are related to these men gathering and praying for Hudson...I do believe in the power of prayer and the force behind faithful, godly men praying...it is all very powerful....
What I do know is that Hudson wasn't gripped today or yesterday by those hard awful seizures. I have seen some quick jerks, some spasms, but nothing like I normally see in a day. The other crazy thing is, when I hold him and get in his face and talk to him softly, in that mommy voice, he would quiet...as if he was listening....and responding.....to me! Crazy! When he is "talking" more than the crying, he is using more sounds...I was hearing m's (I am always in his face saying "momma" cuz I am convinced one day he will say it back to me) and b's, and o's.....I even felt a glimpse here and there he was looking at me, in my eyes, as I was talking to him. Last night he instantly went to sleep and it seems tonight again....I think he wears himself out with all that's going on. I realize this could be a neurological change or happening within...his behavior is literally wild, like he is a little animal....but again, I'll take that any day over seizures!
I also had one last super weird but cool incident tonight....I laid him down in his crib and then went into Hunter and Hailey's room to tuck them in. Hudson had been quiet prior to me picking him up and carrying him off to his room. I noticed he was "talking" again, which I found odd as he had seemed like sleepiness was setting in. After I left the kids room, turned off the light in the hall bathroom, I realized I never turned on Hudson's music/light show that he gets every night at bedtime. I ran back in his room, apologized to him, kissed his sweet face again, turned it on, and instantly he quieted down!!!! He's been quiet since. Pretty crazy...but pretty cool, huh???
Today his PT from school came over for our regular session. She loved the feisty Hudson. He was moving a ton and actually his muscles were pretty fired up...in fact she said to me "You should take a picture, look how well he is holding his head!"
Clearly he is less than thrilled but look at his head! Normally he flops his head right over onto the ottoman in a allaha position, which is why she suggested the picture!
I found it pretty remarkable and I take it, just like I take the crappy seizure days we are so used to having, one day at a time. I know tomorrow may look different...but I rejoice in today...even if my ears are still ringing with Hudson yelling and screaming...it's all good! :)
************
On a Valentine note...had to share some pics....cuz like I said...Hudson was one big crab a$$ yesterday!
lucky you...you are spared the crying! lol
I really didn't want to get my kids chocolate or anything sweet...they both had parties at school and I knew more sweets was the last thing they needed.
 |
| Hailey's "Valentine" from Mommy |
 | |||
| Hunter's "Valentine" from Mommy |
They were thrilled beyond belief to have sushi .....they are soooooo my kids!!!
**************************
Happy to share some pretty cool, strange happenings for once....praying things would only continue to get better......praise God for giving me and Hudson 2 wild and crazy days!
Monday, February 14, 2011
Valentines Day 2011
Was not a bunch of flowers;
It wasn’t candy, or a book
To while away the hours.
So He could freely give
His sacrificial love for us,
So you and I could live.
Instruction, good and true--
To love our friends and enemies
And love our Savior, too.
Let’s thank our Lord and King;
The reason we have love to give
Is that He gave everything.
Sunday, February 13, 2011
Mystery diagnosis
I was turned on to this show from my dear friend who is slightly addicted to the OWN (Oprah Winfrey Network...you know who you are Lol!!!)
Anyways, it is a pretty compelling show. If you haven't seen a episode, it's about how people come down with illnesses and symptoms, that are either diagnosed wrong or are difficult to diagnose, and so it plays out with how they appeared, their search to find answers (many times misdiagnosed and several doctors later) through the medical field and then the final outcome.
I don't have a lot of t.v. time, usually in the evening around bedtime. I usually like mindless/junk t.v....Idol,
BH Housewives, Millionaire Matchmaker, Greys Anatomy....yeah...junk....but at the end of my day it's the perfect escape....
Mystery Diagnosis is pretty intense for me. It conjures up alot of emotions for me in regards to Hudson. Sometimes I am just compelled to watch....sometimes I wonder if I haven't done enough.
There is an episode with a baby who started seizing at 2 months...I think I cried the entire episode....it brought me right back to the earlier days....when we thought he was healthy....then the reflux and vomiting....then the seizures....the the chasing your tail trying to find answers. For this baby, it ended up being a vitamin B deficiency....I sat there with tears, thinking why couldn't our outcome been so simple? All this baby needed was a lifetime of heavy supplements of the deficiency....that would have been our dream answer! I felt jealous watching that episode...I wanted to be those parents who could say my child's catastrophic seizures disappeared with a simple vitamin....no....that is just not the way the story is written for us.
This morning I saw another one. A little boy seemingly healthy and developing normal. Had surgery for what was dx as a lazy eye...by age one he started loosing his abilities....he slowly regressed in walking and talking....for years he was misdiagnosed....they did Spinal Tap, MRI, CAT, muscle biopsy...they thought he had muscular dystrophy, but the biopsy came back normal. There were abnormalities on his brain scans...at one point one group of doctors were certain he had a brain tumor. After years of numerous tests, wrong leads, they got in yet another doctors hands, she did a blood test, testing for a gene that causes a rare disease affecting 10 known cases....he came back positive. The name...a long medical term....basically the nerves in the brain get bogged down and die....resulting in regression in motor skills and speech. There is no cure. They don't know what causes it...could be genetic, could be environmental.
At the end of the show they showed him wheel chair bound, parents divorced, mom loving on her son and treasuring every day she has with him. She ended the show saying that this is temporary and one day he will be free of this disease....well you can imagine the tears streaming from my face after that one. Funny how I totally felt like I could relate to that mother...I understood her pain...her outlook....her love and passion for her little boy....I just wanted to give her a big ole giant hug through the TV screen. Even though I don't know her, or know any of my blog friends...it's that same instant connection...it's a sisterhood of sorts....you feel so connected, you can relate in ways no one else can possibly understand...the journey for answers, the emotional roller coaster, the toll it takes on relationships and marriage, the fears, the hopes, the unimaginable fight for your flesh....the love that is unlike any other....
After watching that I got up and went into Hudson's room. Sound asleep...he appears so "normal" when he's sleeping so peacefully....I kissed his little forehead....I kissed his soft, puffy cheeks...and just felt so thankful he is here.
Anyways, it is a pretty compelling show. If you haven't seen a episode, it's about how people come down with illnesses and symptoms, that are either diagnosed wrong or are difficult to diagnose, and so it plays out with how they appeared, their search to find answers (many times misdiagnosed and several doctors later) through the medical field and then the final outcome.
I don't have a lot of t.v. time, usually in the evening around bedtime. I usually like mindless/junk t.v....Idol,
BH Housewives, Millionaire Matchmaker, Greys Anatomy....yeah...junk....but at the end of my day it's the perfect escape....
Mystery Diagnosis is pretty intense for me. It conjures up alot of emotions for me in regards to Hudson. Sometimes I am just compelled to watch....sometimes I wonder if I haven't done enough.
There is an episode with a baby who started seizing at 2 months...I think I cried the entire episode....it brought me right back to the earlier days....when we thought he was healthy....then the reflux and vomiting....then the seizures....the the chasing your tail trying to find answers. For this baby, it ended up being a vitamin B deficiency....I sat there with tears, thinking why couldn't our outcome been so simple? All this baby needed was a lifetime of heavy supplements of the deficiency....that would have been our dream answer! I felt jealous watching that episode...I wanted to be those parents who could say my child's catastrophic seizures disappeared with a simple vitamin....no....that is just not the way the story is written for us.
This morning I saw another one. A little boy seemingly healthy and developing normal. Had surgery for what was dx as a lazy eye...by age one he started loosing his abilities....he slowly regressed in walking and talking....for years he was misdiagnosed....they did Spinal Tap, MRI, CAT, muscle biopsy...they thought he had muscular dystrophy, but the biopsy came back normal. There were abnormalities on his brain scans...at one point one group of doctors were certain he had a brain tumor. After years of numerous tests, wrong leads, they got in yet another doctors hands, she did a blood test, testing for a gene that causes a rare disease affecting 10 known cases....he came back positive. The name...a long medical term....basically the nerves in the brain get bogged down and die....resulting in regression in motor skills and speech. There is no cure. They don't know what causes it...could be genetic, could be environmental.
At the end of the show they showed him wheel chair bound, parents divorced, mom loving on her son and treasuring every day she has with him. She ended the show saying that this is temporary and one day he will be free of this disease....well you can imagine the tears streaming from my face after that one. Funny how I totally felt like I could relate to that mother...I understood her pain...her outlook....her love and passion for her little boy....I just wanted to give her a big ole giant hug through the TV screen. Even though I don't know her, or know any of my blog friends...it's that same instant connection...it's a sisterhood of sorts....you feel so connected, you can relate in ways no one else can possibly understand...the journey for answers, the emotional roller coaster, the toll it takes on relationships and marriage, the fears, the hopes, the unimaginable fight for your flesh....the love that is unlike any other....
After watching that I got up and went into Hudson's room. Sound asleep...he appears so "normal" when he's sleeping so peacefully....I kissed his little forehead....I kissed his soft, puffy cheeks...and just felt so thankful he is here.
Tuesday, February 8, 2011
This time....I was called!
I am usually the one hounding my nurse friend in the mito/neurology clinic....
today she beat me to it....she called me to find out how Hudson has been.
It's those little things, in a call, that tells me ...
(A) I have done my job by keeping him on their radar
and
(B) They do care
So she left me a message and I messaged her back and we finally spoke live this afternoon.
Dr. S wants to once again increase his Lamictal.
I will start tomorrow.
She asked him if he wanted Hudson's levels drawn and his response to that was a NO.. I want the
seizures to stop!!!
Amen to that!!!!
Sometimes I just wonder if the seizures could be addressed from a mito stand point and not a epileptic, would we have some success? The fact that his seizures are not caused by any structural issue in the brain leads me to wish and pray one day a miracle drug would become available....a drug that would stop the progression of mitochondrial disease...a drug that could help power his little body up and help in where his body lacks...
I just wonder if we were able to approach and treat the seizures from the mito end, would we gain control?
Someday I hope we have an opportunity to slay the seizure monster, someday I hope to see my son have a seizure free day, someday I hope to see years of prayers answered.... what he battles on a daily basis...mind-blowing really....and the fact that he goes through it with such grace and is such a little love, demands nothing, only desires to be loved....he is such an amazing, strong angel boy in a very weak and broken body.
Even though I don't feel hopeful in this lamictal increase...I feel optimistic that one day something will change for Hudson...I have to hang onto a hope and a breakthrough in this awful disease.
Thursday, February 3, 2011
days 2-n-3
Well looks like we can chalk up another failed drug.
Am is surprised? Nope....I'd be more surprised if something actually worked!
Yesterday was another 4 tonic spasms day with a slew of myclonic jerks and stuff.
Today...6....and we still have the evening to contend with!
I talked to Pam late this afternoon, gave her the update....
*4,4, 6so far on the tonics
* less clustered together
*same intensity
*still a ton of jerk and twitches
* a ton of drooling and spit
*some fussiness and irritability
Have no idea what is causing the increased drooling. Hudson typically does not soak a shirt, lately he has. I hope he is not getting sick.
Pam reported to Dr. Saneto, and called me back. I am suppose to see if there are any changes tomorrow. If there would have been a significant change...we would have seen it by now. I am to email him directly with any further question or concerns. I asked Pam if the doc has anything in his mind that he wants to try next.....for those of you that know him....he has to think about it....we all know Dr. Saneto is not impulsive....he gives much time and thought before making the next step.....sometimes I am impatient.....I admit it....I just hate these seizures to my core.
From a parents point of view on the way Hudson reacted to the steroid, I would rather have him off....he just seems happier, cuddlier, and more at peace. If I saw a huge change in seizures I could tolerate loosing my cuddle bug to crankiness...and the content look for the scowls.....but seizures and a crab-pot...not so much!
So that's it for now! It has been a long, exhausting week...and I am ready to have some fun this weekend!
Please keep our little one in your prayers....also for direction in our next step and drug course.....thanks for your love and support!
Am is surprised? Nope....I'd be more surprised if something actually worked!
Yesterday was another 4 tonic spasms day with a slew of myclonic jerks and stuff.
Today...6....and we still have the evening to contend with!
I talked to Pam late this afternoon, gave her the update....
*4,4, 6so far on the tonics
* less clustered together
*same intensity
*still a ton of jerk and twitches
* a ton of drooling and spit
*some fussiness and irritability
Have no idea what is causing the increased drooling. Hudson typically does not soak a shirt, lately he has. I hope he is not getting sick.
Pam reported to Dr. Saneto, and called me back. I am suppose to see if there are any changes tomorrow. If there would have been a significant change...we would have seen it by now. I am to email him directly with any further question or concerns. I asked Pam if the doc has anything in his mind that he wants to try next.....for those of you that know him....he has to think about it....we all know Dr. Saneto is not impulsive....he gives much time and thought before making the next step.....sometimes I am impatient.....I admit it....I just hate these seizures to my core.
From a parents point of view on the way Hudson reacted to the steroid, I would rather have him off....he just seems happier, cuddlier, and more at peace. If I saw a huge change in seizures I could tolerate loosing my cuddle bug to crankiness...and the content look for the scowls.....but seizures and a crab-pot...not so much!
So that's it for now! It has been a long, exhausting week...and I am ready to have some fun this weekend!
Please keep our little one in your prayers....also for direction in our next step and drug course.....thanks for your love and support!
Tuesday, February 1, 2011
Day One...
Thanks for the emails and comments. I really appreciate it!
We started the steroid today, he gets 5mls 2xper day for 3 days.
He has only had one dose today, and will get his 2nd at dinner time.
I am not sure if it is a fluke or a side effect of his body reacting, but he has been extremely fussy/crabby/whiny....all of today's therapists noticed the difference in his personality...and I certainly have too!
Right now he is completely crashed on the couch. I am really anxious about this 2nd dose tonight....hoping he winds down....but with him sleeping right now, my chances are slim.
He has had 2 tonic spasms today, and many of his myclonic jerks.
That's a significant decrease than the 7 on Sunday. The night is still young...but I am hoping the trend continues.
We started the steroid today, he gets 5mls 2xper day for 3 days.
He has only had one dose today, and will get his 2nd at dinner time.
I am not sure if it is a fluke or a side effect of his body reacting, but he has been extremely fussy/crabby/whiny....all of today's therapists noticed the difference in his personality...and I certainly have too!
Right now he is completely crashed on the couch. I am really anxious about this 2nd dose tonight....hoping he winds down....but with him sleeping right now, my chances are slim.
He has had 2 tonic spasms today, and many of his myclonic jerks.
That's a significant decrease than the 7 on Sunday. The night is still young...but I am hoping the trend continues.
Subscribe to:
Posts (Atom)
Hudson Tyler
Our sweet angel!