Monday, January 30, 2012

medication sorter

Lesson learned:  close each tab on the medicine sorter individually. 

When trying to close them all at once by pushing on the entire container can result in a slight disaster. 

yikes.


Ben is still doing great! 
His last seizure was January 6, 2012.  Wow!  :)  :)  :)

Thursday, January 26, 2012

it's the {little} things

Tonight I started making Ben his hotdog meal.

I opened up the ketocalculator and played around for a minute and discovered something great!

Ben could have 44 grams of a hot dog, 10 grams of cheese, and 61 grams of cream for dinner!

An entire hot dog weighs 57 grams so you could imagine my excitement as I began to trim it down to 44 grams.

It was almost the entire hotdog!!

And the best part was that I didn't have to add any butter or oil.  Normally I do and then he has to drink the "hotdog juice" and scrape the remainders out with a silicone spatula. 

I told Ben, "Wait until you see your hotdog!"

He said, "I'll close my eyes!"

When I told him to look and see, he literally clapped his hands and jumped up and down saying, "Thank you mama, thank you!"

It may be strange to be so excited about a hot dog. 

But. This. Is. Huge.

It just goes to show that you have to keep trying. 
You have to keep working at the hard things.
You can't give up hope. 
Because one day you'll be surprised at what you discover. 

Tonight I'm thanking God for...hotdogs.

Tuesday, January 24, 2012

top 10

Team Ben is a top 10 team for the Dallas Stroll for Epilepsy! 

I don't think it means anything and I should mention that we are number 10 of the top 10, but we are there!  :)  It's just fun to see our name on the website.

Click here to check it out:  Top 10 Teams (although I'm not sure how long we'll stay there)
Click here to join our team.

THANK YOU for joining our team, for donating to the epilepsy foundation, for giving to our family, for being such faithful prayer warriors, for checking in on us and celebrating!  I love how God has brought people into our lives during this challenging time.  Leeon and I are still overwhelmed by how giving and thoughtful you are.

Leeon took Ben to the pediatrician yesterday for a blood draw.  We are checking his depakote level to be sure it doesn't drop as it did at Christmas time.  We are also checking to make sure he doesn't develop aplastic anemia (a rare side effect of his new med).  He's such a trooper though - he had to be pricked three times before they finally got a good spot.  :(  We have to do this every 2 weeks for the first 3 months of this new drug and then we can reduce it to monthly.  I'm anxious to see what his depakote level is.

His ketones seemed to drop last night.  They were moderate instead of large.  So today, we took out all of his fruit which made his meals a 4:1 ratio.  I tested again tonight and they were still moderate, but then Leeon got the other jar of strips (that we have to use weekly to also test for trace amounts of blood in his urine that may lead to kidney stones) and tested the urine again.  That strip was VERY dark indicating that the ketones were large - it was off the color scale.  So, I'm not sure what is going on.  I'm wondering if some of the stips were contaminated or something.  We opened a new jar and we'll see what happens tomorrow night.  For being so important, it doesn't feel very scientific.

The best part of today is that it was another seizure free day.

I can't believe I'm still typing those words.  On Sunday night we heard a noise and Leeon ran into the bedroom while my heart literally stopped in my throat.  I almost couldn't breathe for a second as I braced myself to hear Leeon shout my name. 

But he didn't.

Ben was sound asleep.

His bear fell off the bed and made a strange sound.

January 7th, 2012 was the first day of seizure freedom and it's my new favorite date.

:)

Sunday, January 22, 2012

jello puffs cereal - keto style

I attempted this recipe a few weeks ago.

It wasn't a huge hit with Ben, but we will probably try it again sometime soon.

Here are the ingredients:

15.6 grams egg whites
13 grams pecans
6 grams walnut oil
0.5 grams sugar free jello powder


Grind the pecans into a fine powder.

Whip the egg whites into stiff peaks.

Gently fold the walnut oil, pecans, and jello into the egg whites.  It's hard to mix without overmixing the egg whites.

Put the mixture into a baggie.  Snip off the end.

Pipe dime-sized mounds of batter onto parchment paper.  Bake for 11 minutes in a 300 degree oven.

The recipe yielded less than 1 cup total.  But in keto world, nothing is measured this way.  I just wanted to show how much it made.

This entire portion is a 4:1 ratio with 154 calories. 

If Ben wanted it for a snack (like dry cereal), he could have only 1/3 of the entire portion.  Then I would measure out a teeny tiny bit of fruit to get to a 3.5:1 ratio. 

If he wanted is as a meal, I could measure some cream, add water, and serve as cereal.


**************************************************

Ben is doing so well!

Today, I noticed that he ran through the living room and jumped over his puppy with both feet.  His balance is back! 

I also marveled at how well he played his drums!  Just a few weeks ago, he could only push the foot pedal because his hands were either shaking uncontrollably or he was constantly seizing.  At one point we had to sit behind him and hold him because he kept seizing and face planting into the drum set.  He was playing this song this morning - my favorite.

It's the little things that make a big difference;  things that are easily taken for granted until you almost lose them.

We sang this song today at church and I love the words.  I can't help but remember how His presence is always with us - even in the darkest of times.  I am amazed.

Friday, January 20, 2012

a record breaking kind of day

14 days is our new record!  :)  :)

We haven't had 14 straight days of seizure freedom since before July 5, 2011.

Here's a recap of what we are doing to achieve seizure control:
~ ketogenic diet at 3.5:1 ratio with a 400 calorie meal  3 times a day and a 50 calorie snack twice daily
~ Clonazapam 3 times a day
~ Clobazam 3 times a day
~ Depakote 2 times a day
~ Felbatol 2 times a day
~ phosphate, calcium, multiviatamin, vitamin d drops

When the seizures are here, we tend to focus on the moment and figuring out a way to get the seizures to stop.  But now that the seizures are gone, we find ourselves thinking of the future - even planning a bit.  This is also what happened on our last 13 day stretch.

Valentine's Day is the 3 month mark for the diet.  We had talked about weaning the diet at that point, but now that things are going so well I'm not sure it would be worth the risk to quit.  The frustrating thing about epilepsy is that the doctors are not always certain about the whys.  I don't think they really know if it's working or not.  If we take it away and it was helping even a little, is it worth it to see the seizures return? 

Instead, we would like to wean clonazapam.  We have such a love/hate relationship with this drug.  It is not intended for long term use.  It's suppossed to be used as a rescue drug for cluster seizures.  It is known that the body builds a tolerance for it and it fails.  If we can continue to have seizure control without clonazapam, then I will feel better about believing that we have found our magic bullet.

Then, if things continue I think we would still prefer to continue to wean drugs vs. the diet.  The diet is a lot of work.  It's frustrating beyond words.  It's isolating.  It's inconvenient.  BUT the drugs have such awful side effects.  It's really about choosing the lesser of two evils.  It's hard to know what to do.

But we can't get ahead of ourselves.  We will take each day as it comes knowing that God is going to give us exactly what we need to face the day.

Today we are thanking God...
~ for 14 wonderful days
~ that Ben is doing so well, aside from some speech issues and droopy eyes, he has no other noticeable issues from our last bout with uncontrollable seizures
~ we received another anonymous card with a generous gift - if you are reading - thank you very much
~ our team for the Dallas Epilepsy Stroll is growing - click here to find out more 

We are of course continuing to pray...
~ for seizure freedom forever this time!
~ that we can wean clonazapam when its time
~ for our little friend Ethan - that he will also be seizure free soon

Thank you for rejoicing with us and continuing to pray for us.

Wednesday, January 18, 2012

he's doing great!

Today is day 12.

Day 12!!!

We are so thankful for the past 12 days and are hopeful about the future.

Please continue to pray that this blessing of good health will stay for good this time.

Sunday, January 15, 2012

"not another moment lost to seizures"

"Not another moment lost to seizures."

This is the motto of the Epilepsy Foundation.  This foundation provides numerous services to adults and children struggling with epilepsy.   One of the most shocking statistics that I've read is that as many people die from the complications of seizures as do from breast cancer.  And despite all of the new therapies, about 1 million people continue to experience seizures or significant side effects from treatment.

We don't want Ben to lose another moment to seizure activity.  But we also don't want him to have to continue losing moments to side effects of the numerous meds he is on or the time spent on weighing keto foods. 

We would like to announce our participation in the 2012 DFW Stroll for Epilepsy

This is a family friendly event that will take place at the Dallas Zoo.  It is not a run or even a walk.  It's a stroll.  :)   There will be special activities set up and you are able to casually walk around the zoo.

Here's a video of a stroll that took place in Detroit:



Here are the details:

When?  Saturday, March 31st (Registration starts at 7:30 and the officicial kick-off is at 8:45)
Where?  The Dallas Zoo
What? a minimum of $25 will ensure your entrance fee to the zoo as well as a t-shirt provided by the epilepsy foundation; $7 parking fee
Why?  to raise awareness and funds to help those with epilepsy

Are you interested?

Click here to join our team!  You can participate by walking or make an online donation to our team's efforts. 

If you have questions, email me at laurieanne1@sbcglobal.net

Thank you for making a difference.

Saturday, January 14, 2012

fearless

I recently saw this on pinterest...
I'm not sure if the number is accurate, but it made me think about fear and its role in our journey.

When the seizures are here, fear easily grips my heart.  I have to work hard to keep it from swallowing me whole.

I become afraid of when a seizure will happen.
...afraid of not getting to him in time to make sure he is on his side and able to breathe.
...afraid of what permanent damage is being done when he's not breathing.
...afraid he will hurt himself when a drop or myoclonic seizure comes.
...afraid of the things I've read and what the future may hold for him.
...afraid of SUDEP.
...afraid of messing up on this diet and causing him to spiral out of control.
...afraid that the boy I love will hurt.

And even now, when the seizures are gone, I have to continue to work hard at keeping the fear of tomorrow from robbing me of the joy of today.


Today, I was able to make many meals for Ben and while I was cooking I listened to one of my most favorite authors, Max Lucado, speak on this topic.  My heart is overwhelmed with what I have heard.

God wants us to be fearless, to live a life of courage.

I need to listen again and write notes so I can refer back to them...my hands were busy today.  But my heart and mind were soaking it in.  Lucado's books are easy to read.  I wouldn't call him the most dynamic of speakers, but the meat of what he is saying is worth listening to.  It was easy to listen and work.  Each segment is about 20 minutes or so.  Completely worth every minute.  I could feel my faith growing.  So if you are struggling with being fearless, being full of courage...take a minute to listen.

Click here for the beginning...an overview of what fear is...Jesus is asking, "why are you afraid?"
Click here for the reason we never have to fear..."courage is birthed in the maternity ward of grace."
Click here if you are in a storm...the kind that makes it hard to sleep at night.
Click here if you are plagued with worry.
Click here if you are in the middle of a transition or change...maybe one that you never would have requested if given the chance.

I was only going to post one on here, but each time I listened to another one it held so much meaning for me that I just couldn't decide.

I'm working on being fearless. 
I'm reminding myself that God has said,


And while I was home, Leeon took Ben for a day of fun!  He got to run and play and do all things baseball.  All without a seizure in sight.  Why should I let the fear of the unknown ruin the joy of the miracle that is happening right now.  Thank you Lord for your mercy and grace...I still have so much to learn.

Friday, January 13, 2012

ophthamologist

I took Ben to visit the ophthamologist today.  I wasn't thrilled with the practice, but liked the doctor a lot.  They must have been completely overbooked, but it was hot and crowded in the waiting room and we waited for over an hour before we even got back to see the nurse.

But once we got back and met the doctor, everything was fine.

They gave him a vision test and dilated his pupils. 


He did really well through the whole thing. 

They were checking for deterioration in his retina.  They found nothing!  We were confident that this is what would be discovered, but it felt great to hear it. 


I asked for some more clarification and the doctor said that if there were a disorder related to the seizures we would probably have already seen some deteroriation by this point.  We will go back in year to re-check everything, but he said that he has little or no suspiscion that there could be a bigger problem developing.

Yeah!

Did I also mention that he is still seizure free?  Today is day 7!


source: pinterest

Tuesday, January 10, 2012

Ben's buddies

Ben has had another great day! 

I've told myself that I'm not going to keep track this time. 
I've said that I'm just going to accept the days as they come. 

BUT we are on day 4 of no seizures!!!!!  :)  :) 

We are taking advantage of this reprieve.  We are enjoying the good moments for sure! 

We are also thankful for:
~  Ben is doing so good! He's playing, laughing, talking, and even getting into a little trouble. :)
~  financial blessings - God is providing in ways we couldn't even imagine - from donations through  Team Ben to even an anonymous card in the mail today.  We don't even know how to say thank you.
~  encouragement - we've received such beautiful cards this week.  I read them over and over again.
~  prayer support - God is our sustainer and we wouldn't be where we are right now if it weren't for His strength.  Thank you for lifting us up to Him.


This brings me to the title of the post. 

I'd like to introduce you to one of 'Ben's buddies'.

His name is Ethan. 


He is 3 1/2 years old and has also been struggling with Doose.  Isn't he adorable?


He is taking numerous medications and is on the ketogenic diet as well.  But he's having a hard time right now.  He's in a rough patch and I know how dark those days can be. 

His parents made this video describing Ethan's journey so far with Doose.




Would you pray for Ethan and his sweet family?  His mom has shared with me that he has not had a seizure free day since this whole thing started for him.  As hard as the roller coaster has been on us, I can't imagine not having a break.  His parents are Bob and Rebekka.  They are actually in preparation to become missionaries to Indonesia. 

I'd love to direct you to a few different places. 

You can read about Ethan here.
You can read about their missions effort here.

You have been a constant source of encouragement to me.  Your words and acts of kindness are so full of life and hope and goodness.  I would love for you to take just a minute and let this family know that they are not alone. 

You can leave a message on their blog or even email them at living5stones@gmail.com
source:  always pray

Thank you for never giving up...

Sunday, January 8, 2012

in his own bed :)

It is hard to be a parent.  It is hard to always know what to do.

When the seizures returned on December 20th, they were only happening during his sleep.  It was difficult to feel comfortable with just the baby monitor because they were often silent - except for the sound of gasping for breathe.  So we would let him sleep on the couch until one of us was ready to go to bed.  Or, we would just go to bed with him.

But, he's doing so well so tonight we have started him off in his bed again.

I'm sure he'll end up with us at some point tonight.

But for right now, I get to enjoy the little things like a
bedtime snack
tv time
and the biggest - getting to sit and talk with Leeon alone. 

It'll just be us on the couch enjoying the goodness of a reprieve from seizures.

My heart is filled with gratitude for the big things - like 2 seizure free days and the little ones too.

Friday, January 6, 2012

a great day!

Ben has had a great day today!

He only had about 20 - 25 myoclonic or drop seizures all day.  I'm looking at that sentence and it's a little shocking - that used to be considered a really bad day.  But it's a huge decrease and I'm optimistic that they will continue to decrease.

He played outside, played his drums, talked our ears off, and was Ben again.  (Can you hear my heart smiling?)  :)

Maybe we are on the upswing again. 
Maybe it's just a good day.
It's during this time that our hearts and minds often become confused.  We are usually still emotionally and physically drained from the 'valley experience'.  We want to rejoice and celebrate, but we are also cautious because inevitably we end up in the valley again.  But we need to celebrate the good days and embrace them!

I was listening to the radio this morning and they played a clip of Francis Chan talking.  He was talking about the Lord's Prayer.  Specifically the line that says, "Give us Lord our daily bread."  I'm going to have to paraphrase but he said if we really only received our "daily bread" we would probably be furious.  We want to know that we are set, that we are taken care of.  We want to know that we have enough for today and tomorrow and the next and so on. 

But God is telling us that if we have enough for today, then we have enough. 

We only need the energy and strength to make it through today.

I don't need to focus on what might happen next week.  I can't live in fear of when this cycle might start it's downward spiral.  I have what I need from Him for today.

I'm so thankful for a great day. 

He may not even have to wear his helmet tomorrow.  :)

Thursday, January 5, 2012

the plan

I'm not really sure where to start.  This post may be a bit fragmented as I'm still trying to piece together all of the information we received today. 


On a great note, Ben has had a great day!  We've noticed a big improvement as the day has gone along.  He's having a few myoclonic or drop seizures every hour instead of a few every 10 minutes. 

But it doesn't negate the fact that we still need to try something new.

So our new plan is to introduce felbatol.  We will start at one dose for 5 days and then increase.  Apparently, felbatol can interfere with the levels of depakote and clobazam.  It raises their effectiveness.  We will have to decrease both of those meds.  We will keep clonazapam at this time because we are essentially making three changes at on time.  Usually with epilepsy, change is made with one thing at a time. 

Felbatol comes with some risk.  We had to sign a waiver.  Apparently a few adults suffered from aplastic anemia (your bone marrow can not produce enough blood cells).  We have been reassured that there hasn't been a documented case in a child, but as a precaution he has to have blood drawn every 2 weeks for the next 3 months.  It stinks for him to have to be pricked, but he's really good at it.  It doesn't phase him much anymore.

We talked a lot about the ketogenic diet.  None of the doctors seem to think its working.  We hate this diet.  But, I know I will never be able to try this again.  The beginning was so difficult - so very hard on him.  I don't think I'd ever be able to watch him go through all of that again.  It's still not easy, but I'd rather just keep going then quit and have to restart in a year or so.  We are both uneasy about quiting so soon.  This has always been presented as one of those last ditch efforts so to quit means that we are really running out of options.  I'm just scared about that.  It has to work, but it's not. But with all the other changes, the doctor agreed it would be best to leave the diet alone for now.  We will hit our 3 month mark on Valentine's Day.  We can talk then about our next step. 

Felbatol has less than a 5% chance of working because he's failed so many drugs.

But as my dad said, that 5% is somebody.  Maybe we'll be in that 5%. 

If it doesn't, then we will do a round of IV steroids.  This involves another hospital stay.  Ben will be hooked up to the video EEG for 3 days and he will be given high doses of steroids.  Then we will be released and he will go home and continue on lower doses of oral steroids.  He can not be on the diet while receiving this treatment.  He explained that it would probably be a short term fix.  We would probably see an improvement for a time, but would have to go back in for another round at a later time.  But this has closer to a 50% chance of working.  Part of me wants to jump to this, but again we have to weigh the risks with benefits.  And if we can get felbatol to work, that is a better plan.

We continued to talk with the doctor about what other treatment options are.  One is the VNS.  This has a 50% chance of reducing seizures by 50%.  But it could take up to 3 years before you see that 50% reduction.  This is not his favorite treatment.  He also mentioned a surgery where they would separate the left and right hemispheres of the brain.  I kinda stopped listening at that point.  We just aren't there.  We will deal with that then - this is now.  Before we do any sort of surgery or implant, we will seek another opinion from someone that our doctor has recommended in Austin.

We are being referred to an opthamologist. There are some seizure disorders that cause the retina to deteriorate.  There is no evidence that this is happening, but with as much trouble as we are having getting seizure control, it would be good to make sure we know what we are dealing with.  Again, I didn't ask a million questions about it.  If it shows deterioration, we will deal with it then.

We have to stay focused on now. 

But that's very hard to do. 

I'm a big planner.  I've blogged about that before.  I want to know the future.  He just doesn't know either.  He said that he feels Ben will probably struggle as he is a difficult case.  He is recommending a speech evaluation because at this point we don't want him to stop progressing or regress - two big issues with Doose.  He also thinks that most likely Ben will honeymoon on this new drug.  But we'll know soon whether its going to work or not.

He said that our experience so far is the progressive nature of this syndrome.  That's why each time we get a break, they seem to have come back worse - mostly increasing in frequency. 

I could probably keep writing forever about this. 


The bottom line is that we are not in control. 
We can not see the future.
We have to focus on today.
We have to celebrate the good days without fear.
We have to hold on to hope.


We are so thankful that:
~ we have Dr. Perry.  He is approachable, willing to try our suggestions, and genuinely seems to care about Ben.
~ Ben had a good day today.
~ we have so many people praying for us

We are praying that:
~ Ben will be healed
~ felbatol will work
~ His peace would cover our minds


Here's another old one, but it's so good...

peace, peace, wonderful peace
coming down from the Father above
sweep over my spirit forever, I pray
in fathomless billows of love

Wednesday, January 4, 2012

a glimpse at the plan

We talked with the doctors' nurse today.

She read from his notes exactly.

This is what I heard: 

We will start felbatol in combination with clobazam and depakote.
The team does not feel the diet is working, so we can begin to wean him off.
If felbatol fails, we can do IV steroids or the Vagus Nerve Stimulator Implant (VNS).

We have a lot of questions and concerns.  We will meet with him tomorrow afternoon to get some clarification as well as their thinking. 

I love the thought of getting off of this diet, but I'm scared. 

I'm a little scared about the whole thing. 

We are anxious to ask questions tomorrow.

We are so thankful for all of you who prayed for us today.

Here are some answered prayers:
~ we get to meet with the doctor tomorrow (the fact that he has an open time slot is amazing)
~ Ben did not have a tonic clonic (grand mal) seizure today
~ he is champ at doing hard things - yesterday he had his tonic clonic seizure during his dinner but he had only eaten the protein and carb portions.  So as soon as he was coherent, he had to drink all of his cream.  Despite feeling yucky and tired and frustrated, he still chooses to do what we ask

Please pray that we will have clarity when asking questions tomorrow and that we will really understand all that is said to us.

"Peace I leave with you;
my peace I give to you.
I do not give to you as the world gives.
Do not let your hearts be troubled
and do not be afraid."
John 14:27

Tuesday, January 3, 2012

prayer requested

My mother in law noticed that this morning, Ben seemed to be improving.  She counted only 3 myoclonic seizures in a 10 minute period - that was an improvement over 9 we saw just yesterday afternoon.  However, they slowly increased again starting after his nap. 

He has had 2 tonic clonic (grand mal) seizures since 5:00 tonight.

We did hear from the doctor today. 

Ben will be discussed tomorrow morning during the 'epilepsy conference' with the neurologists at Cooks.  The doctor said that he feels a "new treatment regimen is needed" at this time.  They will "develop a treatment plan and goals" and then we will meet with the doctor to discuss it all.  They will call us tomorrow to set the appointment.

We are praying specifically that:
  1. the doctors will have divine wisdom
  2. the room will be filled with clarity of thought with few distractions
  3. they will be filled with compassion for Ben - remembering that he's a real 4 year old little boy, not just a name on a file
  4. we will be at peace with the plan
  5. that the plan will work
  6. that God will be glorified in it all

Thank you for continuing to pray.


When you go through deep waters and great trouble, I will be with you.
  When you go through rivers of difficulty, you will not drown!
When you walk through the fire of oppression,
you will not be burned up—the flames will not consume you.
Isaiah 43:2

Monday, January 2, 2012

patterns

Today seemed better in some ways and same in others.

We definitely saw an improvement with his trembling hands.  He has better balance (except during an actual seizure).  He has talked more today.  He doesn't seem to be having a hard time focusing his eyes on objects.  :)  :)

I think that removing tranxene is helping - either that particular drug isn't good for Ben or the combination of it along with clobazam and clonazapam isn't good.

But he's still seizing a lot.

In a 10 minute period, I counted 9 distinct myoclonic or drop seizures.  That was a typical 10 minute period too - he was just sitting at his drum set.

I went back to our seizure journal and tried to summarize our experience over the past 5 months.  There seems to be a pattern.

It seems like we have a period where the myoclonic and drop seizures will increase.  It started with about 5 or 6 every day, but increased to the point where he would have as many as 30 in a day.  We would increase meds, the seizures would increase, increase meds, etc.  Until finally something clicks and he has a seizure free day or days. 

Then a tonic clonic will reappear.  Then those will increase - having 5 or 6 a day.  We increase meds until we get those under control and the myoclonic and drop seizures return. 

Then we are seizure free again.  Then the tonic clonic ones reappeared. 

This last time he was having 9 or 10 a day. 

Today he didn't have any tonic clonic!  :)

But the myoclonic and drop seizures are in the hundreds. 

It seems that we are able to get a brief amount of seizure control, but when they return they've always returned in greater number.

What does this mean?  I have no idea.  One doctor told me not to try to find patterns because there is no rhyme or reason to epilepsy.  And maybe we aren't seeing a true pattern.  But a few things are sure:

  1. if we get one seizure type under control, the other one(s) appear
  2. each time a seizure type comes back, it has increased in frequency
  3. increasing meds doesn't ever prove to be in direct correlation to seizure control
I'm looking forward to talking with the doctor tomorrow about it all. 

It feels like maybe we are starting another upswing.  Since the tonic clonic seizures have slowed down, maybe in a few days the other ones will calm down again too.  And then maybe we can even have some seizure free days again.

This journey is a roller coaster ride.  The ups and downs and the uncertainty of every turn is nauseating at times, but there is One constant through it all. 

"God is our refuge and strength.
An ever-present help in time of trouble." 
Ps. 46:1

Sunday, January 1, 2012

a must read...

*link fixed, sorry about that.*



God has blessed us with so many supportive friends and family. 

We keep hearing about people who are praying for Ben and they don't even know him!

My best friend, Angie and her family have been a constant source of encouragement to us.

I encourage you to go to her blog and read about Ben there.

I cried through the whole thing.  Mostly because I'm so thankful that someone understands and loves my child so very much. 

Here's a link:  What I have learned from a 4 year old

Thank you Lord for such great friends...

med change...again

Ben has continued to have numerous seizures.  Lots of myoclonic jerks and drops and quite a few tonic clonic ones too. 

We've also noticed
uncontrollable hand tremors,
hallucinations,
speech decline (speaks only when spoken to and even then we barely get 1 word),
blurred vision (he closes one eye to focus on things)
unsteady balance (many falls)
disorientation (asked 'where's mommy?' when I'm sitting right next to him, but then a few minutes later he was able to identify me)
tummy aches

I called the on call doctor because the clinic is closed tomorrow as well.  I'm sure he was thrilled to talk to me on the morning after New Years Eve.  He made two slight remarks that made me feel a little bad about calling.  But what choice do I have?

He advised us to stop tranxene completly.  Clobazam, clonazapam, and tranxene are all cousin drugs - the valium family (or at least that's what I heard him say).  So we will stop the new one.  We will continue with clonazapam 3 times a day, but we can give it every hour as needed to control the tonic clonic seizures. 

He said that it is hard to know if the deterioration we see is the result of the underlying seizure disorder he has (DOOSE), the increased seizure activity, or a med issue. 

I'm choosing to believe it's a med issue. 

Again he reiterated that this is a trial and error process.  But it's frustrating to just have to sit and watch the errror part. I asked him if they ever "bring a child to the table" and discuss them.  We do this all the time in education and it works.  He said that yes they do...on Wednesdays.  I asked him if they could discuss our Ben.  He agreed that it would be beneficial and was going to put in the notes to Dr. Perry that I've requested this. 

When I call on Tuesday, I will be sure to request it again.  We need as many eyes on his case as we can get. 

We are thankful for:
~ a brand new year
~ Ben still tries everything - his hand tremors prevent him from accomplishing small tasks, but he keeps trying
~ faithful friends and family

We are praying that:
~ Ben will be healed
~ taking tranxene away will lessen some of these side effects we are seeing
~ God will give the doctors divine wisdom and us patience and strength

Isaiah 40:28-31: 
"Do you now know?  Have you not heard?
The Lord is the everlasting God, the creator of the ends of the earth.
He will not grow tired or weary, and his understanding no one can fathom.
He gives strength to the weary and increases the power of the weak.
Even youths grow tired and weary, and young men stumble and fall;
but those who hope in the Lord will renew their strengh.  They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint."