Friday, October 30, 2009

Tuberous Sclerosis - The Mutant Gene

It's been a long time coming, approximately 14 months, and we finally have results from genetic testing for TSC.
It appears that R's Tuberous Sclerosis is the result of a gene mutation. Not genetic!
As I've said before, it doesn't matter to B & me, how Bup developed TSC. I didn't want there to be any guilt on either of our parts...and there would have been as that's just the way our hearts work....if it had been handed down by either parent. The only reasons we wanted the genetic testing was for the boys futures and for family members who haven't had their own babies yet. There's a little relief in knowing that new babies born into this family will not have TSC!

As I write this our little Bup is napping on the loveseat in front of me. A quick, cat nap before we are scheduled to pick his brother up at pre-school. I watch him sleep, those long thick lashes against his fluffy cheeks and admire how perfect he looks; how bizarre it is that there are
"mutant genes" in his make-up, tubers/tumors growing on his organs, and weird electrical activity spiking throughout his brain. Our sweet, little, perfect Bup...happily living seizure free thanks to meds....while watching him sleep I know the TSC is invisible and I'm grateful for that. Hopefully, it'll keep sleeping too....long, long after Bup has woken up.

Tuberous Sclerosis - The Mutant Gene

It's been a long time coming, approximately 14 months, and we finally have results from genetic testing for TSC.
It appears that R's Tuberous Sclerosis is the result of a gene mutation. Not genetic!
As I've said before, it doesn't matter to B & me, how Bup developed TSC. I didn't want there to be any guilt on either of our parts...and there would have been as that's just the way our hearts work....if it had been handed down by either parent. The only reasons we wanted the genetic testing was for the boys futures and for family members who haven't had their own babies yet. There's a little relief in knowing that new babies born into this family will not have TSC!

As I write this our little Bup is napping on the loveseat in front of me. A quick, cat nap before we are scheduled to pick his brother up at pre-school. I watch him sleep, those long thick lashes against his fluffy cheeks and admire how perfect he looks; how bizarre it is that there are
"mutant genes" in his make-up, tubers/tumors growing on his organs, and weird electrical activity spiking throughout his brain. Our sweet, little, perfect Bup...happily living seizure free thanks to meds....while watching him sleep I know the TSC is invisible and I'm grateful for that. Hopefully, it'll keep sleeping too....long, long after Bup has woken up.

Tuesday, October 27, 2009

Candid Camera Marathon

Luvin' our Daddio for some post-bath, pre-bedtime hugs.









The boys are gearing up for Halloween. We are entertained by our very own "Harry Potter" and Space Man Bup.
W doesn't even know who Harry Potter is other than he must be a bad guy since we won't let him watch the movies.
"Super Harry Potter!"


THIS is what happens when I am on the phone....for 5 minutes. Seriously! Now you understand why voicemail is the best invention ever?!? Just an example of what happens during our "witching hour" ...I attempt to leave a message and the kids turn into mountain goats!


Note to all you GF bread bakers....do NOT attempt to use pea flour. I made the most disgusting bread ever...as is indicated by my favorite husband's face. The smell itself was...gag-a-riffic! These loaves hit the bin. Stay away from pea flour...put it down...back away...and run, run for your little, gluten-free lives.

Candid Camera Marathon

Luvin' our Daddio for some post-bath, pre-bedtime hugs.









The boys are gearing up for Halloween. We are entertained by our very own "Harry Potter" and Space Man Bup.
W doesn't even know who Harry Potter is other than he must be a bad guy since we won't let him watch the movies.
"Super Harry Potter!"


THIS is what happens when I am on the phone....for 5 minutes. Seriously! Now you understand why voicemail is the best invention ever?!? Just an example of what happens during our "witching hour" ...I attempt to leave a message and the kids turn into mountain goats!


Note to all you GF bread bakers....do NOT attempt to use pea flour. I made the most disgusting bread ever...as is indicated by my favorite husband's face. The smell itself was...gag-a-riffic! These loaves hit the bin. Stay away from pea flour...put it down...back away...and run, run for your little, gluten-free lives.

Saturday, October 24, 2009

So Much....

Yes, I'm still off line, but managing to sneak in a quick post.

So much has happened in the past week or so....a lot of it heart breaking.
We lost two friends last week. Two young, vibrant, amazing, kind people taken from this earth much too soon. Three friends really as one was seven months pregnant with her first baby. Sad...sad...sad...There have been a lot of tears shed, alot of unexplained frustration, anger and just resignation as well. It's just so wrong. Yes, life is not fair. This I know. But still....sometimes it's too much, too overwhelming, too painful and too wrong.
What will I learn from these losses? There's always an opportunity to learn...to not take people for granted, or worry what they think when getting in touch after a long time, keep in touch, take better care of myself, and enjoy life. These are tall orders, but taken a tiny step at a time it all adds up into something better.
Both of my friends, Trent & Melanie, enjoyed life to it's fullest. They embraced it and tried new activities...daunting activities like marathoning, stand up comedy and embarking on the path to parenthood.
There's is so much more to be said about these amazing souls, however now is not the best time. Soon....

And to add to our good week...our whole household has the flu! GI & RI! Ugh! There's a whole lot of spilling going on! Imagine spending the night between my FH and W, both of whom are spilling off and on throughout the night....only to work in the morning with your chest on fire...oh it's an entertaining day here at the H Household!

Hope you all are well and this upcoming Halloween week find you in good health & happiness.
M

So Much....

Yes, I'm still off line, but managing to sneak in a quick post.

So much has happened in the past week or so....a lot of it heart breaking.
We lost two friends last week. Two young, vibrant, amazing, kind people taken from this earth much too soon. Three friends really as one was seven months pregnant with her first baby. Sad...sad...sad...There have been a lot of tears shed, alot of unexplained frustration, anger and just resignation as well. It's just so wrong. Yes, life is not fair. This I know. But still....sometimes it's too much, too overwhelming, too painful and too wrong.
What will I learn from these losses? There's always an opportunity to learn...to not take people for granted, or worry what they think when getting in touch after a long time, keep in touch, take better care of myself, and enjoy life. These are tall orders, but taken a tiny step at a time it all adds up into something better.
Both of my friends, Trent & Melanie, enjoyed life to it's fullest. They embraced it and tried new activities...daunting activities like marathoning, stand up comedy and embarking on the path to parenthood.
There's is so much more to be said about these amazing souls, however now is not the best time. Soon....

And to add to our good week...our whole household has the flu! GI & RI! Ugh! There's a whole lot of spilling going on! Imagine spending the night between my FH and W, both of whom are spilling off and on throughout the night....only to work in the morning with your chest on fire...oh it's an entertaining day here at the H Household!

Hope you all are well and this upcoming Halloween week find you in good health & happiness.
M

Monday, October 19, 2009

Off Line

Technical difficulties again.
Our new laptop has died...after a glorious month or so...and we're now waiting on a replacement to arrive so I'm just sneaking on here at my favorite M.I.L's house and checking all my favorite blogs for a quick up date.
Until then, keep writing and I'll sneak some reading in when possible.

Off Line

Technical difficulties again.
Our new laptop has died...after a glorious month or so...and we're now waiting on a replacement to arrive so I'm just sneaking on here at my favorite M.I.L's house and checking all my favorite blogs for a quick up date.
Until then, keep writing and I'll sneak some reading in when possible.

Monday, October 12, 2009

1 Year & counting...

This post has been on my mind for some time. Hoping it would come to fruition and now that it's here...wanting to write yet not wanting to jinx things.

October 13th 2008...that was the date of Bup's last seizure. It's one year!!! Tuberous Sclerosis and seizures have nothing on us!

This anniversary brings up so many emotions. We are absolutely thrilled that R's meds are continuing to work. He takes Trileptal and Keppra twice daily, which is disguised in a bottle of milk or juice because there is no other way to get him to take it without a fight, tears and a lot of wasted meds. There has not been even one break-through seizure while on this current dosage... not even when he's had the stomach flu and isn't getting his meds. I can't even explain, or convey how much of a relief this is to us...to go a full year without a seizure. It's been so long that recently W asked, "What's a seizure?". B & I were talking about seizures and W didn't remember what they were. This from the little guy who would call me when he noticed that R was having a seizure...also the little man who would pretend to have a seizure once they had finished knocking Bup on his cute little bottom.

You see, our little babe Bup had seizures daily, starting at the tender age of 8mths. Several times a day. At best, when only taking Trileptal, he was down to 9 seizures a day and they were getting more fierce. Knocking him down, his breathing had changed during the seizures...very heavy & rough, almost like snoring, he couldn't respond to you, the tremors had surfaced, his right arm would go stiff and there were times that he wouldn't use his right hand/arm following a seizure for an hour or so. It was frightening to watch them progress in strength knowing that one day soon they would become "grand mal" (to use the old language that everyone knows). I had even discussed with our Neuro nurse about getting a helmet for Bup because he kept hitting his head during seizures and had even had a couple at the head of the stairs...and in the tub which isn't about a helmet but more like a life jacket! Having these seizures halted is such a relief to our hearts. Once they stopped it was as if Bup's development received a kick-start. His speech started progressing in leaps & bounds, as did his gross motor skills....the poor coordination decreased. Again...more relief and pride surging for us.

So, it's a fabulous day in our home!

Now, why would this bring about different emotions for me?
Well, fear I guess.
Fear that it'll all come back. Don't borrow trouble! I know, I know...I tell my head this often.

Then there's a sweet little curly haired 2yr old south of the border who just under went neuro surgery to eradicate the seizure monsters...he was once seizure free too...and now here he is fighting to recover and repair...all due to the dreaded seizure monsters. It really tears at my heart...and he's not even mine! How can one not be affected in some small way though?

For now, I shall put away the guilt, put away the fear, and embrace the relief and happiness of our Bup living daily seizure-free.

1 Year & counting...

This post has been on my mind for some time. Hoping it would come to fruition and now that it's here...wanting to write yet not wanting to jinx things.

October 13th 2008...that was the date of Bup's last seizure. It's one year!!! Tuberous Sclerosis and seizures have nothing on us!

This anniversary brings up so many emotions. We are absolutely thrilled that R's meds are continuing to work. He takes Trileptal and Keppra twice daily, which is disguised in a bottle of milk or juice because there is no other way to get him to take it without a fight, tears and a lot of wasted meds. There has not been even one break-through seizure while on this current dosage... not even when he's had the stomach flu and isn't getting his meds. I can't even explain, or convey how much of a relief this is to us...to go a full year without a seizure. It's been so long that recently W asked, "What's a seizure?". B & I were talking about seizures and W didn't remember what they were. This from the little guy who would call me when he noticed that R was having a seizure...also the little man who would pretend to have a seizure once they had finished knocking Bup on his cute little bottom.

You see, our little babe Bup had seizures daily, starting at the tender age of 8mths. Several times a day. At best, when only taking Trileptal, he was down to 9 seizures a day and they were getting more fierce. Knocking him down, his breathing had changed during the seizures...very heavy & rough, almost like snoring, he couldn't respond to you, the tremors had surfaced, his right arm would go stiff and there were times that he wouldn't use his right hand/arm following a seizure for an hour or so. It was frightening to watch them progress in strength knowing that one day soon they would become "grand mal" (to use the old language that everyone knows). I had even discussed with our Neuro nurse about getting a helmet for Bup because he kept hitting his head during seizures and had even had a couple at the head of the stairs...and in the tub which isn't about a helmet but more like a life jacket! Having these seizures halted is such a relief to our hearts. Once they stopped it was as if Bup's development received a kick-start. His speech started progressing in leaps & bounds, as did his gross motor skills....the poor coordination decreased. Again...more relief and pride surging for us.

So, it's a fabulous day in our home!

Now, why would this bring about different emotions for me?
Well, fear I guess.
Fear that it'll all come back. Don't borrow trouble! I know, I know...I tell my head this often.

Then there's a sweet little curly haired 2yr old south of the border who just under went neuro surgery to eradicate the seizure monsters...he was once seizure free too...and now here he is fighting to recover and repair...all due to the dreaded seizure monsters. It really tears at my heart...and he's not even mine! How can one not be affected in some small way though?

For now, I shall put away the guilt, put away the fear, and embrace the relief and happiness of our Bup living daily seizure-free.

Saturday, October 10, 2009

Happy Thanksgiving Everyone!


T'is the weekend of gratitude and feasting here in Canada. Mmmmm....one of my favorite holidays. The kick off to fall, to Halloween, to Christmas planning, a warm and cozy weekend.
What is your favorite way to spend Thanksgiving?
What is your favorite Thanksgiving treat?
What are you grateful for this year? Yes, there is the regular stuff...family, friends, health, etc. But what are you really enjoying or grateful for...is this something out of the ordinary or something that really touches your soul?

Moi?
Well....
In the past, when my dad was alive and the baby girl nieces were babies...they're 14 & 3/4s now!...we would all gather and do something fun....like the Zoo or Heritage Park and of course, there was turkey with all the trimmings, but it was the outside, fun, family time that I really enjoyed.
Treat....I make a mean Sweet Potatoe Surprise...the surprise is that there is cream cheese in it and that I don't eat it, I make it, but don't eat it...weird I know...and am known within my family for M's Sweet Potatoes...there was almost a verbal war last year when a cousin claimed that it was my sister's recipe and the cousin was making it herself...Uh, excuse me??? That is my signature dish!
Gratitude....as always the regular stuff...but my children's health is really hitting home as we are coming up on a year since Bup's last seizure while a little one we love through inter blogging friendship is in the hospital right now to begin recovering from neurosurgery which will
rescue him from Infantile Spasms...it's heart wrenching and I am so grateful for these amazing bodies we have that can heal us and complete amazing, unthinkable feats....I am grateful.
I'm also grateful for caffeine, sleep, jeans that fit my tuckas, sparkly Silpada, the perfect hair product for right now (Chi Organics), a husband that will go to the grocer in the morning when I have forgotten important items while late night shopping the night before (aka the sweet potatoes!) and the Internet. I really love the Internet. Don't you?

Turkey Up!

Happy Thanksgiving Everyone!


T'is the weekend of gratitude and feasting here in Canada. Mmmmm....one of my favorite holidays. The kick off to fall, to Halloween, to Christmas planning, a warm and cozy weekend.
What is your favorite way to spend Thanksgiving?
What is your favorite Thanksgiving treat?
What are you grateful for this year? Yes, there is the regular stuff...family, friends, health, etc. But what are you really enjoying or grateful for...is this something out of the ordinary or something that really touches your soul?

Moi?
Well....
In the past, when my dad was alive and the baby girl nieces were babies...they're 14 & 3/4s now!...we would all gather and do something fun....like the Zoo or Heritage Park and of course, there was turkey with all the trimmings, but it was the outside, fun, family time that I really enjoyed.
Treat....I make a mean Sweet Potatoe Surprise...the surprise is that there is cream cheese in it and that I don't eat it, I make it, but don't eat it...weird I know...and am known within my family for M's Sweet Potatoes...there was almost a verbal war last year when a cousin claimed that it was my sister's recipe and the cousin was making it herself...Uh, excuse me??? That is my signature dish!
Gratitude....as always the regular stuff...but my children's health is really hitting home as we are coming up on a year since Bup's last seizure while a little one we love through inter blogging friendship is in the hospital right now to begin recovering from neurosurgery which will
rescue him from Infantile Spasms...it's heart wrenching and I am so grateful for these amazing bodies we have that can heal us and complete amazing, unthinkable feats....I am grateful.
I'm also grateful for caffeine, sleep, jeans that fit my tuckas, sparkly Silpada, the perfect hair product for right now (Chi Organics), a husband that will go to the grocer in the morning when I have forgotten important items while late night shopping the night before (aka the sweet potatoes!) and the Internet. I really love the Internet. Don't you?

Turkey Up!

Tuesday, October 6, 2009

"Wake up & Shake the Glitter off Your Clothes..."


It's official...we're booked for Vegas baby!!

Thanks to the infamous Uncle B and the soon to be Auntie J, we will be spending some time in the city of lights, the city that never sleeps, the wedding capitol, etc. etc.

We're so excited to have a mini holiday...a weekender...where the palm trees sway, moving walkways take you from hotel to hotel, shopping is super, and over the top everything...not to forget the most important factor....the wedding, witnessing vows, pledging love & commitment!

Oh but we have a couple of months to wait....which is okay because there is Thanksgiving, Bare Naked Noggins and Christmas to celebrate in between time. As well as, a suitable dress for this sister-in-law to find and more importantly so fancy red shoes. I've my heart set on red sassy shoes...don't you love red shoes?! Anyway...I'm getting way off base here....

Are we taking the boys? Ack! Coughcough! NO! This is an adult only celebration...thank you Uncle B!
And thank you Grama G & cousin Shiny for staying with our little men. On that note...it'll be a little sad/nerve wracking/exciting to be away from the boys for three nights/four days...but we'll manage.
So, shake the glitter off your clothes...it's Las Vegas.

"Wake up & Shake the Glitter off Your Clothes..."


It's official...we're booked for Vegas baby!!

Thanks to the infamous Uncle B and the soon to be Auntie J, we will be spending some time in the city of lights, the city that never sleeps, the wedding capitol, etc. etc.

We're so excited to have a mini holiday...a weekender...where the palm trees sway, moving walkways take you from hotel to hotel, shopping is super, and over the top everything...not to forget the most important factor....the wedding, witnessing vows, pledging love & commitment!

Oh but we have a couple of months to wait....which is okay because there is Thanksgiving, Bare Naked Noggins and Christmas to celebrate in between time. As well as, a suitable dress for this sister-in-law to find and more importantly so fancy red shoes. I've my heart set on red sassy shoes...don't you love red shoes?! Anyway...I'm getting way off base here....

Are we taking the boys? Ack! Coughcough! NO! This is an adult only celebration...thank you Uncle B!
And thank you Grama G & cousin Shiny for staying with our little men. On that note...it'll be a little sad/nerve wracking/exciting to be away from the boys for three nights/four days...but we'll manage.
So, shake the glitter off your clothes...it's Las Vegas.

Monday, October 5, 2009

I Feel Like Chicken Tonight



Slowcooker Hoison Drumsticks.
Sounds tasty? Mmmm...
Although, not if you're my W. He informed me his was yuck and let his dad know the chicken was gross! How's that for an honest review? The broccoli and oven fries were consumed with gusto though so he did not starve.
Thankfully the rest of us do NOT share W's taste. They were good! Very flavorful. Not for those with sensitive taste buds.
If you're interested in the recipe, I adapted Stephanie's Hoison Wings recipe. My substitutions were agave nectar for honey, GFCG liquid Soy Seasoning, and tobasco sauce.
I'm in love with my crockpot...again. Life is just too busy these days and if I don't have dinner planned and on the go by 3pm, it's a bust. The witching hour is from 4pm on at our house and this is my low point of the day. I'm tired! Anyone know of a pick me up I could take to get me through the evening? Caffeine just doesn't but it. Oops...getting off topic!
Which is a good indication that it's time for me to sign off...
oh but wait! Speaking of starving my children....we weighed them yesterday. W = 46lbs and R = 40lbs. Good grief! My cousin wondered if this new Free Eating would give them enough calories....ahhh, hmmmm....there's now worries on that front!
What's your favorite slow cooker recipe? Please share!

I Feel Like Chicken Tonight



Slowcooker Hoison Drumsticks.
Sounds tasty? Mmmm...
Although, not if you're my W. He informed me his was yuck and let his dad know the chicken was gross! How's that for an honest review? The broccoli and oven fries were consumed with gusto though so he did not starve.
Thankfully the rest of us do NOT share W's taste. They were good! Very flavorful. Not for those with sensitive taste buds.
If you're interested in the recipe, I adapted Stephanie's Hoison Wings recipe. My substitutions were agave nectar for honey, GFCG liquid Soy Seasoning, and tobasco sauce.
I'm in love with my crockpot...again. Life is just too busy these days and if I don't have dinner planned and on the go by 3pm, it's a bust. The witching hour is from 4pm on at our house and this is my low point of the day. I'm tired! Anyone know of a pick me up I could take to get me through the evening? Caffeine just doesn't but it. Oops...getting off topic!
Which is a good indication that it's time for me to sign off...
oh but wait! Speaking of starving my children....we weighed them yesterday. W = 46lbs and R = 40lbs. Good grief! My cousin wondered if this new Free Eating would give them enough calories....ahhh, hmmmm....there's now worries on that front!
What's your favorite slow cooker recipe? Please share!

Friday, October 2, 2009

Brotherly Love

The boys are playing together more and more these days. It's fabulous! (Of course, not always...there can be disputes)


Tonight, they were put to bed together as W had piled his bed high, turning it into an airplane and...
then there was Bup. I was sure he was asleep only to hear him sobbing behind his door, calling my name, while attempting to dismantle W's plane.


Well, W ran upstairs calling, "We're coming Bup. Did you have a bad dream?"


So, against all odds I tucked them both into our bed. (My favorite husband was away...) It took what felt like hours to get them to sleep...what with all the hugging and kissing and good-nighting and giggling and bum in the air and commenting on the "yights" (digital clock) and trading places and more huggin'n'kissin....those two! They were about to get into big trouble when I lay between them, sang the requested "Pum" (Little Drummer Boy)and it worked like a charm. Eyes closed, sweet dreams in progress.


Now, when I left the room Bup was on the far side of the bed, closest to the night stand yet when I checked on them a few hours later he was on the other far edge snuggled up to W. How did he manage that?! I'm not sure...but it was super cute!


Little snuggly brothers....so sweet.

Brotherly Love

The boys are playing together more and more these days. It's fabulous! (Of course, not always...there can be disputes)


Tonight, they were put to bed together as W had piled his bed high, turning it into an airplane and...
then there was Bup. I was sure he was asleep only to hear him sobbing behind his door, calling my name, while attempting to dismantle W's plane.


Well, W ran upstairs calling, "We're coming Bup. Did you have a bad dream?"


So, against all odds I tucked them both into our bed. (My favorite husband was away...) It took what felt like hours to get them to sleep...what with all the hugging and kissing and good-nighting and giggling and bum in the air and commenting on the "yights" (digital clock) and trading places and more huggin'n'kissin....those two! They were about to get into big trouble when I lay between them, sang the requested "Pum" (Little Drummer Boy)and it worked like a charm. Eyes closed, sweet dreams in progress.


Now, when I left the room Bup was on the far side of the bed, closest to the night stand yet when I checked on them a few hours later he was on the other far edge snuggled up to W. How did he manage that?! I'm not sure...but it was super cute!


Little snuggly brothers....so sweet.

Bup's Workerman

To witness Bup playing pretend with his little workerman is too sweet. I just enjoy listening and watching this stage so much! It's super cute & funny.


Lately, R has taken to this little construction guy that belongs with a digger toy. He rarely plays with the digger, yet carries the workerman around. This Workerman gets his "diaper" changed..."Ah poops! Change diaper. Wipes. Tinky!!"






He's also subject to the odd, yelling lecture and time-out on the stairs. "Turkey! Sit!"
Which is the funniest, unless you forget little, hard plastic Workerman is in a time-out on the stairs....and you stomp on him while running up. Yowsa!


Also, if you're visiting, please don't try and play with the Workerman...he's a one child only kinda guy...and Bup doesn't share him!:)


Who knows what Bup and the Workerman will be up to next...

Bup's Workerman

To witness Bup playing pretend with his little workerman is too sweet. I just enjoy listening and watching this stage so much! It's super cute & funny.


Lately, R has taken to this little construction guy that belongs with a digger toy. He rarely plays with the digger, yet carries the workerman around. This Workerman gets his "diaper" changed..."Ah poops! Change diaper. Wipes. Tinky!!"






He's also subject to the odd, yelling lecture and time-out on the stairs. "Turkey! Sit!"
Which is the funniest, unless you forget little, hard plastic Workerman is in a time-out on the stairs....and you stomp on him while running up. Yowsa!


Also, if you're visiting, please don't try and play with the Workerman...he's a one child only kinda guy...and Bup doesn't share him!:)


Who knows what Bup and the Workerman will be up to next...

Prayers Please....

There is a wonderful inter-blogging friend who is on the trip of a lifetime today.
Her little family needs your thoughts, prayers, best wishes, good vibes, etc. You see, their little guy, who is the same age as Bup, has Infantile Spasms...a severe form of Epilepsy...severe...hundreds of siezures per day...and today they are off to the hospital to start the process of admittance, etc as sweet little Trevy is having neuro-surgery to hopefully elliminate those world-rocking seizures. This little man deserve a life free from the seizure monsters!
His mommy, daddy & siblings deserve the peace and thrill of seeing their little man excel and beat the seizure monster.
Trevy's story touches my heart...
as our little man Bup has Tuberous Sclerosis. Thankfully he is still seizure free...but there was a time when we were told if these current meds don't work, R would have to wait a year until neuro surgery...and that was the last option. So....
open your hearts and send my cyber-friend, Danielle & Trevy, good health vibes, prayers, etc.
Thank you...

Prayers Please....

There is a wonderful inter-blogging friend who is on the trip of a lifetime today.
Her little family needs your thoughts, prayers, best wishes, good vibes, etc. You see, their little guy, who is the same age as Bup, has Infantile Spasms...a severe form of Epilepsy...severe...hundreds of siezures per day...and today they are off to the hospital to start the process of admittance, etc as sweet little Trevy is having neuro-surgery to hopefully elliminate those world-rocking seizures. This little man deserve a life free from the seizure monsters!
His mommy, daddy & siblings deserve the peace and thrill of seeing their little man excel and beat the seizure monster.
Trevy's story touches my heart...
as our little man Bup has Tuberous Sclerosis. Thankfully he is still seizure free...but there was a time when we were told if these current meds don't work, R would have to wait a year until neuro surgery...and that was the last option. So....
open your hearts and send my cyber-friend, Danielle & Trevy, good health vibes, prayers, etc.
Thank you...