History

Journal History

Thursday, August 10, 2006 11:23 PM CDT

It hit me tonite, Nathan will have now had as many birthdays in Heavan as he did with us. I'm really struggling with that, I was walking through Walmart almost in tears thinking about it.

It's interesting how kids and adults figure the aging process on someone who has died. I always think of what age Nathan would be, what grade he'd be going into, etc. To Justin and Rebecca, Nathan is 5, and will always be five to them. We have these discussions about how Rebecca is older than Nathan now, which is and isn't true.

I bought the cheetos tonight for Saturday, and will find some peanut butter cup something to eat in memory also.

Happy 10th Birthday Nathan!!!

Tuesday, January 17, 2006 8:01 AM CST

As I sit here this morning, I can't even believe it's been FOUR years now since Nathan died. It does get easier with time, I feel like this year I can go about life and function on this day, even though the thought of what day it is, is never out of my mind. When in the past, I've just wanted to crawl back into bed and stay there until the 17th is over. And i think that is a good thing. But then the guilt is there too, that it has gotten easier to get through this day. So eat some cheetos and peanut butter cups in memory of Nathan, and smile through your tears as you think about all the funny things he used to do.

Wednesday, December 14, 2005 8:26 AM CST

I have been thinking of Nathan constantly the last week or so. Not that he isn't on my mind a lot anyways, but there have been so many things going on that have him on my mind all the time.

-His headstone is supposed to finally be delivered to the cemetary this week
-I'm working on the picture calendars for xmas presents, so I'm going through old pictures to find ones of him to put on there
-I got an email from a friend I met in St Paul kids during his first hospital stay down there in 2001
-a little girl and her mom that I know from around here are down at st paul kids on the epilepsy unit, have been there for quite awhile, and she is probably getting a g tube and is on the same seizure drugs that he was - a couple of the nurses that are still there from when we were down there still remember nathan and me
-I've been emailing with another mom who's little boy died recently of a genetic disease

Not finding any pennies lately, but with the ice and snow on the ground, he'll have to be even more obvious about sending them to me to make sure i see them.

thanks for checking this still.

Tuesday, November 8, 2005 10:20 PM CST

I've been meaning to get this on here for weeks. We have an apple tree in the backyard that we bought with memorial money from the neighbors. It hasn't been a big apple producer yet, ok, well, we have gotten one apple off it, ever, so far. Curtis brought the little tiny apple in that was on the tree this fall, and we all ate a piece of it. The other kids were talking about how small the apple was, and how the tree just hasn't given us any apples. Curtis said "the tree is like Nathan, nothing comes easy to it (or to him), and it struggles. Nathan always had to work so hard to do things, but he never gave up. Just like the tree, it keeps producing flowers every spring, and trying to come up with apples." - that's not a direct quote, I wish I had gotten on here and written it down right away when it was so fresh in my memory. But it was such an incredibly neat moment, and so accurate.

I can not believe in two months it will have been 4 years since Nathan died. how is that possible? I don't want to say "my son died 4 years ago", it makes it seem so long ago, so much like it shouldn't be such a big deal to me still.

Rebecca is so concerned with remembering Nathan lately. She can't possibly remember him for real, she was only 1 1/2 when he died. But she talks about him all the time, she makes sure people know she has THREE brothers, not two, but "one of my brothers died". When she writes the names of her family, she writes Nathan. It's so neat.

Thursday, August 11, 2005 10:55 PM CDT

Happy 9th Birthday, Nathan!

I just finished eating some birthday cookies that I made for you, you never had them, but would have loved them - peanut butter cookie, with peanut butter cup inside - two of your favorite foods in one place :)

It's so hard to believe you would be nine, and ready to start third grade.

Miss you lots and lots still, think about you all the time, barely an hour goes by that something doesnt' make me think of you or remember you.

Sunday, June 5, 2005 11:29 PM CDT

hey Nathan, i've been thinking about you extra all day today. We had cleanup, cleanout day today, and I was sorting through color books. I think you must have had every Barney color book made, but you sure didn't color much in them. A few pages had some scribbles that I'm pretty sure were made by you. But I still couldn't bear to throw them away or give them away. Kinda like all those Barney videos of yours, no one here watches them anymore, but I just don't know what to do with them.

love you!

Saturday, May 7, 2005 7:49 PM CDT

A couple Mother's Day poems I got from the Compassionate Friends newsletter

A Mother's Day Gift to God

Lord today is Mother's day, but our hearts are split in two
Half is with the child still here,
the other with the child that is there with you.
All the lovely presents are a nice surprise
But the one thing we want most is missing, and tears fill our eyes.
We know when you sent them Lord, you didn't promise how long they would stay,
All you said was to love them, and treasure each and every day.
Bur Lord it crushed our hearts, when you called for their return
We feel like half a Mom, as we ache weep and yearn.
But Lord tell them we love them just as much as we did before
And could you please make a window, so they can see through heaven's floor.
Let them see that they are missed and thought of with each breath
And that a Mother's love begins before life, and does not end with death.
So on this Mother's Day, the greatest gift we give to you
For Lord we know you missed them, and you love them too.

by Sheila Simmons

Mother's Day

Another Mother's Day!
But a different one this year.
For you see, I am a mother,
But my child isn't here.
I am a mother who is hurting
for this child who was so dear,
as I face this and other occasions,
each and every year.
I am a mother who feels an emptiness
over and over again,
because I miss THIS child
and all that could have been.
I am a mother who cared
as I watched my child grow,
and truly loved her (him) more
than anyone will very know.
I am a mother who has memories
and many tears to cry
over regrets I'll have to live with
until the day I die.
I am the mother who is thankful
for the miracle of birth,
and all my child has taught me
about life and my own self-worth.
I just can't stop being a mother
just because my child isn't here,
because the love we had for each other
will continue for years and years.
And so...
On this special "Mother's day",
I will feel pride, love and joy
which are the parts
that make me: who I am,
and what I'll always be - a MOTHER
Just remember that - please

by Judy A

Sunday, January 16, 2005 10:00 PM CST

Nathan bud, I hadn't planned what I was going to put on the website for the 3 year anniversary date of your death, was going to work on that today. Then Justin and I ended up with the flu.

I wish I could come up with some meaningful words that could tell you how much we miss you, how much you are still talked about and loved. About how excited your brothers and sister get every time we find a penny on the ground, they know it's from you. I came home from scrapbooking the other nite and the three of them had been watching the dvd with your pictures on it, so I know they were missing you and thinking about you.

Even after three years, there are so many things that remind us of you, or make us think about you, or bring up a funny story. You are never far from my thoughts.

You are so missed, Nathan, we love you

Wednesday, December 22, 2004 9:55 PM CST

I had been debating whether I should keep this page going anymore; it's been almost 3 years since Nathan died. But as soon as I mentioned that to a friend, she responded very emphatically that I should keep it going, that she loves to check it regularily still.

I was just watching CMT and Garth Brooks' song The Dance was on, and it just hit me again how appropriate the lyrics to that song are, so I'll share them with you - it's definately one that can bring tears to your eyes
********
Looking back on the memory of
The dance we shared 'neath the stars above
For a moment all the world was right
How could I have known that you'd ever say goodbye

And now I'm glad I didn't know
The way it all would end the way it all would go
Our lives are better left to chance I could have missed the pain
But I'd of had to miss the dance

Holding you I held everything
For a moment wasn't I a king
But if I'd only known how the king would fall
Hey who's to say you know I might have changed it all

And now I'm glad I didn't know
The way it all would end the way it all would go
Our lives are better left to chance I could have missed the pain
But I'd of had to miss the dance

Yes my life is better left to chance
I could have missed the pain but I'd of had to miss the dance

Saturday, September 25, 2004 4:15 PM CDT

Another sweet precious child lost to this horrible Batten's Disease. I just got a call from a friend in Texas, her son is right around Nathan's age (how old he'd be) and he died this morning at 3 am. Please keep Heather and Donnie and their little girl in your thoughts and prayers.

And Nathan, keep an eye out for Jesse, ok bud?? His mom and I have talked about both of you boys for hours and hours, so try to help him out. I love you!

Wednesday, August 11, 2004 10:31 PM CDT

Happy 8th Birhtday, Nathan!

I can't believe this is the third birthday without you. I thought I was all cried out, then I sat down tonite and looked at your ABC scrapbook that Gma Marla made you. I'm not sure if that was good idea or not. I'm about to go make some peanut butter cup cookies, you would have loved those, the way you loved peanut butter and also loved those little peanut butter cups. We'll have some cheetos and McDonalds french fries for your birthday too.

love you sweetie

Tuesday, June 22, 2004 11:22 PM CDT

hey Nathan bud, Gma Polly is up there with you now, keep an eye out for her, ok? She's always had Grandpa Randal with her so she'll need a lot of your wonderful hugs and big sloppy kisses

love you!

Tuesday, February 24, 2004 11:25 PM CST

2004 Batten's Walk is Saturday, May 1 - Please let me know if you want to walk with us this year and I"ll get you a brochure.

Tuesday, February 24, 2004 11:25 PM CST
It's been a bit since I updated this, I really struggle to find something "profound" or "insightful" to put on here, to make it worth people stopping by.

I was reminded today of how many lives Nathan touched, and continues to touch even after two years. The little kids and I were at Walmart this afternoon, and ran into someone I got to know thru Nathan's connection with Southeast Human Services. I haven't talked to her since I don't know when. As we were visitng, she asked me how Ryan's feet were doing, and I answered, and then realized "how does she know about this", so I asked. She said that she still checks this website even after all this time. I was just so.... I don't know what, in awe? surprised? overwhelmed? by that.

As I continue to ponder the whys and what am I supposed to be learning/getting/etc from Nathan's short life, I just keep feeling it has to be something to do with all the people I have met and gotten to know because of him.

Thursday, January 1, 2004 10:30 PM CST

A New Years Countdown For Grieving Families

Ten
10 more minutes until the new year
And one more year farther away...
Father away from the memories I hold so dear...
Please, God...Im so afraid I will forget...
please help me remember....year after year.

Nine
9 more minutes until the new year...
And one more year farther along...
farther along my journey of grief...
I thought I walked alone...
Please, God...Continue to walk with me....
as no roads are walked alone...
you are always with me...
until I also return home.

Eight
8 more minutes until the new year...
A new year to help others realize....
that grief does not have a timeline...
and mine it not too long...
Please, God...Help others to understand...
that I am normal....
and that my grief is so stong...
because my love was so strong.

Seven
7 more minutes until the new year...
A year that I pray...
my friends and family will not avoid my pain
...or look the other way...
Please, God... When tears form in my eyes...
Help my friends and family find the right words to say.

Six
6 more minutes until the new year...
A year...
that brings hope that others will not forget...
that they understand my pain when I call them late at night.
Please, God...Bless my family in the new year...
and when there is darkness...
shine Your loving light.

Five
5 more minutes until the new year...
A new year..
for me to reach out to others who are grieving....
and help them along this road...
Please, God...Guide me in the new year...
and grant me strength and courage...
to help lighten anothers load.

Four
4 more minutes until the new year...
As I take this time to thank You for the friends I hold so dear....
who listen and help me when I fall....
Please, God... Help remind others....
that saying something...
Is better than saying nothing at all.

Three
3 more minutes until the new year...
A new year to carry on the memory of our loved one...
whether a child, grandchild, nephew or niece...
Please, God...Encircle us in your love.....
and grant us peace.

Two
2 more minutes until the new year...
And thank You God for loving me...
for Heaven above....
where my loved one is finally free...
Please, God...On This New Years Eve...
send my love...up above...
as always...from me.

One
1 more minute until the new year...
Whether I am ready or not...
a new year is nearly here....
Please, God...Grant me the strength, courage, and peace
to walk through the new year...
with little fear.

Wishing you peaceful days and beautiful memories in the new year.
God bless

Copyright � January 2001 Written by :
Laura/Heavenly Lights Childrens Memorial
Http://www.heavenlylights.homestead.com
Unauthorized reprinting of this poem in ANY FORM
is prohibited without the prior consent of the author.

Wednesday, September 17, 2003

When you experience
some clouds in life...
Remember,
heaven is on the other side.
***************************

Some gifts are held in your heart....long after your arms cannot feel
them.
*****************************

When links of life are broken
And a child has to part
There is nothing that will ever heal
A parents broken heart....
*****************************

Thank you to so those of you who stop here every month on the 17th, it is incredible to me what good friends I have that remember Nathan and us on that date every month. Love you all!

August 12, 2003 HAPPY 7TH BIRTHDAY NATHAN!

Well big guy, you'd be turning seven now - hope you get to have Barney bday cake in heaven, or have you outgrown Barney by now? You are probably into Spiderman and Scooby doo and all that big kid stuff, aren't you?

Curt and I started the headstone process tonite. I just haven't been able or been ready to do anything before this, and I'm still not really, but it's time to do it anyways.

These are some words from a song sung by Sherrie Austin, called "Streets of Heaven", very heart wrenching:

"Well it must be kind of crowded on the streets of heaven
So tell me what do you need her for
Don't you know one day she'll be your little girl forever
But right now I need her so much more
She's much too young to be on her own
Barely just turned seven
So who will hold her hand when she crosses the streets of heaven

And it must be kind of crowded on the streets of heaven
So tell me what do you need her for
Don't you know one day she'll be your little girl forever
But right now I need her so much more
Lord I know once you've made up your mind there's no use in beggin'
So if you take her with you today, will you make sure she looks both ways
And would you hold her hand when she crosses the streets of heaven"

Saturday, May 17, 2003 3:41 PM CDT

Wherever I go, whatever I do,
Memories keep me near to you.

When a raindrop falls on your nose,
you've just been kissed by an Angel.

******
The Batten's Walk went well, thanks to all of those who kept us in the prayers, and to those who sponsored us; our team raised over $3000. And thanks to those who walked with us, we had 5 in strollers, one in a wheelchair, and 12 adults.

Thursday, April 17

There's a special Angel

There's a special angel in Heaven
that is a part of me.
It is not where I want him
but where God wants him to be.

He was here but just a moment
like a night time shooting star.
And though he is in Heaven
he isn't very far.

He touched the hearts of many
like only an angel can do.
I would have held him every minute
if the end I only knew.

So I send this special message
to the heaven up above.
Please take care of my angel
and send him all my love

March 17, 2003

I'll Keep You In My Heart

If tears could bring you back to me
You'd be here by my side.
For God could fill a river full
With all the tears I've cried.
If I could have one wish come true
I'd ask of God in prayer
To let me have just one more day
To show how much I care
If love could reach to Heaven's shore
I'd quickly come for you
My heart would build a bridge of love
One wide enough for two
But this I know, the day will come
When we will never part
Until that day we meet again
I'll keep you in my heart

author unknown

I've had lots of questions about the Batten's Walk this spring, and I just got the information over the weekend. It's Saturday, May 3 in St Paul. We are planning to walk again, and if you are interested in walking too, let me know and I'll send you the information.

Monday, March 17, 2003 8:19 AM CST

I'll Keep You In My Heart

If tears could bring you back to me
You'd be here by my side.
For God could fill a river full
With all the tears I've cried.
If I could have one wish come true
I'd ask of God in prayer
To let me have just one more day
To show how much I care
If love could reach to Heaven's shore
I'd quickly come for you
My heart would build a bridge of love
One wide enough for two
But this I know, the day will come
When we will never part
Until that day we meet again
I'll keep you in my heart

author unknown

I've had lots of questions about the Batten's Walk this spring, and I just got the information over the weekend. It's Saturday, May 3 in St Paul. We are planning to walk again, and if you are interested in walking too, let me know and I'll send you the information.

Thursday, March6

If you are looking for info on Ryan's status, his website is www.caringbridge.org/mn/ryanolien

JANUARY 17, 2003 NATHAN'S ONE YEAR ANGEL DATE

I don't even know what to write on a day like this. The constant ache, the sick feeling in the pit of the stomach, the tears, it's all still there, even a year later. The love and support we've gotten from so many of you is incredible; the emails I've gotten on the monthly angel dates, the cards we've gotten, the hugs, the "we're thinking of you all". Heather made the most wonderful, yet heartwrenching video of pictures of Nathan. I just can't write anymore right now, it just hurts too much.

Christmas eve, 2002

my sweet Nathan, as we move thru the holiday season, we think of you so much - the way you loved Christmas, the way you said "ho ho ho" even though you had so few words you could say - Becca sounds just like you when she says it - the years you were so scared of Santa, and then the year you finally would at least stand next to him, holding a Barney. We talked about you tons the night we put the ornaments on the tree, looking and remembering all of yours and why they were special the year you got them - You are so missed and so loved Nathan!

Tues, Dec 17, 2002
A MILLION TIMES-

A million times I�ve wanted to talk to you
A million times I�ve cried
If love alone could have saved you
You never would have died.
In life I loved you dearly,
In death I love you still.
In my heart you hold a place
That no one else can fill
The Golden Gate stood open
He saw you needed rest.
God�s garden must be beautiful
for he only takes the best!

-Author unknown-

SUNDAY, NOV 17
10 months as an angel - so hard to believe it's been that long, so hard to believe he's really gone

OUR PRECIOUS LITTLE ANGEL

Our precious little angel,
He could not stay long.
Enough to steal your heart away
Then force you to be strong.
Enough to show you in a glimpse,
How wonderful life can be.
And how no wealth or worldly good,
Could take the place of Thee.
Little Angel in a cloud
Looking down upon his family.
Feeling forever proud
That for a time, however short,
He had the chance to be
Our Little Precious Angel,
So Beautiful to see.
AUTHOR UNKNOWN

Thursday, October 17

Impossible to believe it's really been 9 months already.

I have not turned my back on you,
So there is no need to cry.
I'm watching you from heaven,
Just beyond the morning sky.
I've seen you almost fall apart,
When you could barely stand.
I ask the Lord to comfort you,
And watch him take your hand.
He told me you are in more pain,
Than I could ever be.
He wiped his eyes and swallowed hard,
Then gave your hand to me.
Although you may not feel my touch,
Or see me by your side,
I've whispered that I love you,
While I wiped each tear you cried.
So please try not to ache for me,
We'll meet again one day.
Beyond the dark and stormy sky,
A rainbow lights the way.
Author Unknown

Tuesday, September 17
8 months now - the last couple months have been really tough without you. Your 6 month angel date hit me really hard, and then our trip to Toronto for the Batten's conference, and seeing all the other kids who are affected with it, but still alive. Then Becca's bday, your 6th bday, and then the week that school started and you should have been getting on the school bus to start kindergarten.

Our Memories

They say there is a reason,
They say that time will heal,
But neither time or reason,
Will change the way we feel.
For no one knows the heartache,
That lies behind our smiles,
No one knows how many times,
We have broken down and cried;
We want to tell you something,
So there won't be any doubt,
You're so wonderful to think of,
But so hard to live without.

author unknown

Saturday, Aug 17

Todays is Nathan's 7 month angel date, I've put so much on hs website lately I won't update with a poem this month.

Tues, Aug 13

Well, we made it thru the first angel birthday. THANK YOU to so many of you for remembering Nathan's birthday with cards, calls, emails, checking out his website, visits to the cemetary, balloons, etc. We are so blessed with good friends and family.

We had a big storm Sunday nite after I did all that decorating at the cemetary, so stuff was kinda messed up the next day. A friend said to me it was like Nathan and his six year old friends had messed it up during a birthday party. That made me smile.

Sunday, Aug 11

HAPPY 6TH BIRTHDAY, NATHAN!!!

Your first birthday as an angel is very tough for me. Last birthday we spent at St Paul Childrens' Hospital, so you didn't have much of a celebration last year. I've been out to the cemetary already, even though your birthday isn't until tomorrow, and decorated with balloons and streamers and banners, and a lot of your family let go purple balloons to you this morning.

Did you see how much fun your baby sister had at her 2nd birthday party yesterday? We missed you SO much, we should have been having a big huge joint birthday party for both of you. Last year she didn't get to have a big first birthday party since you and I were in the hospital, so I tried to make up for it this year. She wanted Barbie everything; cake, plates, decorations.

There will be a "Happy 6th Birthday" and picture of you in the newspaper tomorrow.

We've had three apple trees planted in your memory, two at the cemetary, and one in the backyard here at our house. Next spring we'll put in some sort of memory/angel garden around the tree.

I updated The Oliens website with new pictures today too.

I asked my friend Chris in New Zealand to write a poem for your birthday, and she did her usual wonderful job. Thank you Chris.

WITHOUT YOU

There's no sound that's as loud as the silence
Of a voice that no longer I hear,
There's no place quite so bare and so lonely
As the places I once held you near.
They say there are no tears in heaven
So I know you are happy and free,
But my tears they have yet to stop flowing,
For I want you to be here with me.
And some days are much harder to bear
For they're filled with sweet memories of you,
How an angel came specially from heaven
Touched our lives and then off homeward flew.
So sweet Angel, I thank you for coming
Though I wish we had never to part,
And although you can't be in my arms,
Forever you'll be in my heart

Wednesday, July 17

Six months have passed now since Nathan died - the tears still flow, the heart still aches, the insides are still empty and missing him so much -

I thought I'd post something other than a poem this month. This was sent by a good friend, who has been finding lots of pennies since she read it, usually in places that involve cheetos. :)

The penny story

I always thought that it was for Good Luck, but I like this version better:

I found a penny today
Just laying on the ground.
But it's not just a penny,
this little coin I've found.

Found pennies come from heaven,
that's what my Grandpa told me.
He said Angels toss them down.
Oh, how I loved that story.

He said when an Angel misses you,
they toss a penny down.
Sometimes just to cheer you up,
to make a smile out of your frown.

So, don't pass by that penny,
when you're feeling blue.
It may be a penny from heaven,
that an Angel's tossed to you.

So now pass this on to the people who you care about and who you feel are Angels to you,

Monday, June 17, 2002

Our sweet boy has been gone five months.

In tears we saw you sinking,
We watched you fade away,
You suffered much in silence,
You fought so hard to stay,
You faced your task with courage,
Your spirit did not bend,
But still you kept on fighting,
Until the very end.
God saw you getting tired,
When a cure was not to be,
So he put his arms around you,
and whispered, "Come with Me."
It broke our hearts to lose you,
But you did not go alone,
For part of us went with you,
The day God called you home

FRIDAY MAY 17

Nathan's been an angel for four months now. I'm not going to put a new poem on right now, since Ryan's Mother's Day poem was just added on Sunday.

Sunday, May 12, 2002 MOTHERS DAY
Ryan wrote this poem for me from Nathan, and wanted me to post it on here

You may think I am gone.
But you will see me at dawn.
I will be higher then everything.
You may think I am dead.
But I will be just over your head.
I will be in a much better place.
There will never be a disgrace.
You may think that is my body in the coffin.
But it isn't anybody.
When ever you think I'm gone,
Look deep inside your heart.
And there I will be.
I know that you will never forget me
Mom, I will always be your son.

Love, Your everyday loving son Nathan

Thursday, May 9, 2002
Ryan and I had to each write a letter to read at the kids grief group we've been going to for 6 weeks. It has been a good experience for both of us. This is mine:

Hey sweet pea!

I know you know how much I miss you, I know you see all my tears. I keep telling myself you are in a better place, that keeping you here would have been so selfish. There wasn�t any of you left in that poor little body. But I�m selfish, I want you back. So much of my life was you and your needs; your seizures, your meds, your feedings, your care - the hole you have left in my heart, my life, and my everyday routine is huge.

In just a few days, it will be my first mother�s day without you. I feel like I failed you as a mother, I�m supposed to keep you safe and healthy, but I couldn�t. I wonder all the time if there was something I should have done differently for you. And I wonder all the time how you are? I keep waiting for a sign from you, or even a dream about you, like Ryan had, but no luck on either of them so far. That would really help make this mother�s day bearable, some sort of sign from you, but you better make it quite obvious. I love you big guy!

Saturday, May 4

Today was the Batten's walk in St Paul - I posted 2 pics from it on the Olien family website. There were 16 of us walking/riding in strollers in Nathan's memory. Our walk tshirts have a picture of him and "in memory of Nathan" on the back. We tied 3 Barney and 1 purple balloon (thanks Martha) to the strollers during the walk, and then the kids let them go after. The weather was ok, could have been warmer - had about 5 minutes of rain - thanks for all the thoughts and prayers today, and everyday.

Tuesday, April 30
Several people have asked me about the Batten's walk. It is a 5K (approx 3 miles) walk in St Paul MN this Saturday morning, May 4th. The 5 of us are walking/stroller riding, my sister,her hubby and two kids, my mom, stepdad, and dad, and a few other relatives and friends are all participating. If you want more info about it, you can email me, or Joni, who is the president of the MN chapter of BDSRA at joni_metcalf@hotmail.com.

I did update the pics on the Olien family website too, if you want to check them out.
WEDNESDAY, APRIL 17
Nathan's been an Angel for three months now, and I'm not feeling very creative today, so will put someone else's poem on here instead of writing my own. I know people are still checking in here, please sign the guestbook. Even if you already have, sign it again. It helps me realize people are still remembering him, that he hasn't been forgotten.

If we could have a lifetime wish
A dream that would come true,
We'd pray to God with all our hearts
For yesterday and You.
A thousand words can't bring you back
We know because we've tried...
Neither will a thousand tears
We know because we've cried...
You left behind our broken hearts,
And happy memories too...
But we never wanted memories
We only wanted You.
[Author Unknown

Sunday, March 17, 2002

You got your angel wings
Two months ago today
It seems my heart should be healing by now
I sit here, trying to find a way.

How do I say goodbye
When all I want to do
Is climb right up to heaven
And grab on tight to you.

You should be here with me
You�re only 5 years old
Instead my arms are empty
Only memories I have to hold.

Your absence leaves a hole
So deep inside my heart
I can�t believe how many tears
I�ve cried since we�ve been apart

I miss you so much Nathan!

Sunday, FEb 24, 2002
I need help from all of you. I'm looking for your favorite Nathan story -one you were there for, or one you remember hearing about (more than one is great too). You can either email them to me, or put them in the guestbook. Thanks for helping me keep Nathan's memory alive.

Sunday, Feb 17, 2002
I can't believe it's been a month since Nathan died, sometimes it still hurts so bad that it seems like yesterday. There are more people than I could ever name that we are grateful to for their prayers, support, thoughts, meals, flowers, plants, and so much more. Thanks.

A month ago you left us
With empty, aching hearts
We miss you every moment,
That we have been apart.

We know you�re in a better place
Where you can run and play
And laugh and talk and watch Barney
And eat cheetos every day.

We talk about you often
And keep your memory near
We laugh about the things you did
But still end up in tears.

So, Nathan, as you look down at us,
I make a vow to you,
�Love you always, Forget you never�
This I promise you.

Thursday January 17, 2002 1:29 PM CST
Nathan died this morning -

3:30 pm Thursday - funeral is 11 am Monday at Faith Lutheran in West Fargo - visitation hasn't been decided yet

FRIDAY JAN 18

Visitation is 3:30-7 on Sunday, with a prayer service at 7pm at West Funeral Home in West Fargo. Curt and I will be there from 5-7 pm. The funeral home address is 226 4th Ave W, church address is 127 2nd Ave E in West Fargo

If you are coming from out of town, we have special rates set up at several of the hotels in Fargo. Please email me and I will send you the information.

We are also working on getting a map copied.

Wednesday January 16, 2002 8:54 PM CST

The past 12 hours have been horrible. Three different times we were sure he was going to take his last breath. For over an hour today, his oxygen saturation level was 3% (no, that is not a typo, that is correct) - then it goes back up to 25-30% for awhile. His fingers and toes are purple, and around his nose and mouth is blue from lack of oxygen. Every breath he takes strains his whole body. His heart rate is very high, 150 -180 beats/minute, which I suppose is because his body is working so hard at breathing

Tues, Jan 15, 2002

Not much change from yesterday, oxygen levels are still very low, and he's working so hard at getting a breath -

Monday

Nathan's in really bad shape - his lungs are filling/filled up with fluid and his oxygen stats are dropping steadily.

Friday, January 11, 2002 at 03:42 PM (CST)

The spastic jerking has gotten really bad again, both arms and both legs going. He's struggling with his breathing, his oxygen sats range from low 90s to high 80s. When the nurse was out this week, she said his lungs sounded gurgly. he's been running a temp off and on this week. Has about one "brain pain" episode/day of moaning, but I can't find anything that seems to be hurting. We are trying to med changes to help with the facial puffiness and the spastic jerking.

Tuesday, January 08, 2002 at 09:44 PM (CST)

Bad couple days - the spastic movements have gotten bad again, both arms are moving quite a bit, and his right leg and foot are too - he seems to be uncomfortable or have something that hurts, he's been making a lot of moaning type noises, but of course, we have no clue what the problem is. The facial puffiness is still there, we're going to back off on one of his meds and see if that helps. He's been struggling with his breathing a lot lately.

Tuesday, January 01, 2002 at 10:24 PM (CST)

Not much new to report on Nathan as we move into 2002 - the puffiness in his face is still there, I am waiting to get the results of some labs run last week to see if they will give us any answers. No response from him at all anymore, lots of sleeping. Lots of gaggy coughing, with some throwing up still.

I added some more pics to the Olien website from xmas.

Saturday, December 22, 2001 at 02:02 PM (CST)

Merry Christmas to you all! Not much change in Nathan's condition - the occasional throwing up is still there - his lungs are yucky and junky and sound like a train is running in there - his face has gotten very puffy, not sure if it is a side effect of some medication, or something else, so he'll have some blood work done after xmas to see if we can get some answers. Smiles happen every few days.

I did put some new pictures on the Olien website, so click on the link below to check them out if you have time.

Friday, December 14, 2001 at 02:45 PM (CST)

Nathan seems to just keep getting slowly steadily worse. His nurse was gone for 5 days, and when she came back, she said she saw noticeable deterioration. One day of major throwing up this week. His lungs still sound bad all the time. We get one smile every couple days now. We're cutting back on the amount of nursing care he gets starting next week, just have someone in to take care of him a 4 days/week instead of 6.

Thursday, December 06, 2001 at 02:31 PM (CST)

Nathan's been throwing up again, but we've had the flu here, so maybe he just caught that. His lungs have been sounding really raspy and gurgly the last couple days. The smiles are few and far between these days, so we treasure every one.

Thursday, November 29, 2001 at 11:05 PM (CST)

Sorry it's been so long since I updated.

Nathan's ear seems to be getting better, the ENT said it was irritated tissue inside the ear that was bleeding, so started him on a different kind of drops.

Nathan didn't have a good day today, we pretty much couldn't wake him up all day. I don't think there was even 1/2 a smile all day. His body is cool to the touch, even with three blankets on top of him. We've been using a heating pad to try and keep him comfortable.

Friday, November 16, 2001 at 01:18 PM (CST)

Not the best week for Nathan - he woke up yesterday morning with an earful of blood. Apparently he has an ear infection, his ear tube must have gotten plugged, and then the ear drum ruptured. It's still bleeding some today, we are using ear drops 4x/day so hopefully it will help quickly.

His lungs are very up and down, somedays sound not too bad, and some days sound horrible. Ryan listened yesterday with the nurses stethoscope and said it sounds like a thunderstorm in there.

Thursday, November 08, 2001 at 09:05 PM (CST)

Nathan's slowly getting worse. He's less responsive, more sleepy. His lungs sound worse, raspy and some gurgling. Not too many smiles anymore.

Thursday, October 25, 2001 at 02:27 PM (CDT)

No major changes still - Nathan's throwing up pretty much daily. Some days he's very responsive, and some days we can't get him to crack a smile at all. His lungs are pretty congested most of the time.

Wednesday, October 17, 2001 at 10:29 PM (CDT)

We had Nathan's j tube changed out on Tues, so we don't have 8 inches of tubing hanging out of his tummy anymore. With my luck, that was an accident waiting to happen. He now has a skin level device again, which is wonderful. Makes his care much easier.

He's still throwing up about once/day. He's less responsive again, not as verbal as he was for a couple weeks, and I haven't seen him roll over to his tummy for awhile, but overall, he's basically maintaining, which is fine.

Sat Oct 13

We're home. The throwing up has stopped for now, and they sent us home with med to help if we have a problem later. His pump is still running slower than usual, but we'll build that up slowly.

FRIDAY OCT 12
Nathan's in the hospital in Fargo again - threw up all day yesterday, probably 25 times. By afternoon, he was throwing up meds and formula, which shouldn't be in his stomach at all, they are supposed to bypass the stomach and go right into his small intestine. The placement of the tube seems to still be ok, so they aren't sure why it's backflowing into the stomach. The pump feedings have been started again this morning, at a VERY slow rate, to see if he can keep them down. So for now we are just in wait mode to see if anything stays down today. Will try to update this afternoon or evening, the computer center here at Innovis has better hours than St Paul.

Thursday, October 11, 2001 at 02:42 PM (CDT)

Nathan's not doing very well the last couple days. Lots of throwing up, and sleeping a lot, most of the day actually. Pretty much non-responsive, might get 1/2 a smile occasionally.

Friday, October 05, 2001 at 01:39 PM (CDT)

BRRR! It's a whopping 47 degrees here today. Well, after Nathan pulling his feeding tube out that little bit last week, I pulled it completely out this week. Was moving him from his wheelchair to his car seat, and was too lazy to unhook his portable feeding pump (the j tube port had gotten stretched out, so the feeding tube had to be taped and untaped everytime). The whole thing popped right out of his stomach, the balloon that had been in the inside of his tummy was still inflated, it just came right thru the opening. Took him to Innovis Hospital, and even though it had only been 1 1/2 hours, the hole in his stomach had already closed almost completely. So it turned out to be a very uncomfortable process for Nathan to have it re-placed. They couldn't get it as far into the small intestine as before, so we might have a problem again soon. But for now the feedings are going ok. His lungs have sounded a little worse this week, but his temp has been staying down, so that's good. And he's actually saying "mama" some, Could it be due to the massive quantity of kisses he gets everytime he says it? As some of you may know, mommy was never really a word in his vocab before.

Monday, October 01, 2001 at 03:09 PM (CDT)

Not much change, which is good news I guess. His breathing is still raspy and he really struggles with it sometimes. The spastic jerking has started again, only in the arms. He managed to get his wrist caught in his feeding tube last week, and pulled it out over 2 inches, but the feedings have continued to go ok, so apparently the end is still in the jejunum.

Monday, September 24, 2001 at 01:35 PM (CDT)

I apparently raised false hopes, gave the wrong impression, etc last week. We've had lots of people reading the website and thinking that the rolling over and verbalizing means Nathan is getting better. Nathan is not getting better, there is no getting better with this disease. Some rebounds can occur, but they are temporary, no way to predict how long they will last. It is still a terminal disease. We are excited about these rebound things, of course! But we are also dealing with daily throwing up, and constant breathing so loud and raspy that people I'm talking to on the phone can hear him, and daily fevers.

We are so thankful for all of you that check in every day on this website, we are overwhelmed with all the love and support and prayers and good wishes we receive. And we certainly don't want to dampen anyones excitement about these positive things, we just want to be realistic.

Friday, September 21, 2001 at 02:38 PM (CDT)

Nathan's doing ok. He's verbalizing again, yelling actually, but some words. Dadda of course, and "no". He rolled over to his tummy today. His lungs are still raspy and he's running a fever just about every day, why, we don't know.

Monday, September 17, 2001 at 09:23 PM (CDT)

Nathan's doing ok, running a slight fever most days, and his breathing is very loud and raspy. His mood is pretty good, very few "brain pain" episodes anymore, mostly just when he needs to take a nap. Seemed more restless today, and his movements seemed more than they have for awhile, just in his arms though.

7940 - We miss you guys!

Friday, September 14, 2001 at 02:56 PM (CDT)

Been home for a week, WOW! No real change in Nathan's status. His breathing is still very raspy and loud, sometimes his lungs sound ok, sometimes not. He runs a fever off and on. We have nursing care Mon - Sat, so that is a help. Some smiles and giggles still, the funny noises seem to bring the biggest smiles.

Friday, September 07, 2001 at 02:33 PM (CDT)

We're home again, hoping to stay here for more than 36 hours this time - he's still having somr problems with his feedings, but they said we could work them out at home. Trying to get home nursing care set up, hopefully to start next week

Thursday, September 06, 2001 at 11:03 AM (CDT)

The j tube was put in yesterday, basically what it does is bypass the stomach completely. The old feeding tube used to put the formula into the stomach, this one goes all the way int the small intestinE (jejunum). The hope is that the pyloric valvle between the small intestine and stomach is still ok, so the food won't be coming back up. He started on feeding last nite, and so far they are stayingn down fine. If that continues throughout the day, as the rate of the feedings increase, we'll be out of here tomorrow. boy, are we ready. I've spent 3 nites in my own bed in the last 6 weeks I think, so it's time.

Wednesday, September 05, 2001 at 01:38 PM (CDT)

Tried some feeding thru his gtube at a very slow rate yesterday, and he still threw that up. So he is having a j tube put in today, which basically extends his existing feeding tube past the stomach into the small intestine. The drs think the sphincter muscle at the top of the stomach to the esophagus is weak, so it doens't stop stomach contents from coming back up. There is no guarantee that the spinchter between the stomach and small intestine isn't in the same condition, but it's worth a try.

He had a couple smiles today, but for the most part is still pretty much nonresponsive. Hoping to maybe be home Thur, or more likely Friday. After the j tube is put in place, we have to start his feedings again at a slow rate, get him used to it, and make sure it will all stay down.

Tuesday, September 04, 2001 at 01:57 PM (CDT)

Back in the hosptial, in Fargo this time. Nathan started throwing up Sunday, couldn't keep anything down, and then was running a temp. Brought him to the ER at Innovis on Monday morning, and he was admitted here. He's very dehydrated, he got 1000 cc of IV fluid, and no wet diaper. They were starting to get concerned his kidneys were shutting down. But apparently he was just that dehyrdrated. The next problem is he can't keep anything down, so he's not getting any nutrition. They think aspirated too, so are concerned about his lungs. We are waiting to talk to drs today to see what the plan is. But at least being in Fargo, there is no lack of visitors!

Sunday, September 02, 2001 at 11:01 AM (CDT)

We got home safe and sound about 4 pm yesterday. Besides some problems with the equipment once we got here, the settling back in went fine.

I'm adding a couple pics to the picture section, and also adding some website links to the page that you might find interesting.

Now that we are home, I probably won't update every day, unless things start really changing again. I'll try to update on the weekend.

Friday, August 31, 2001 at 03:19 PM (CDT)

DAY #20 - WE'RE GOING HOME! tomorrow, if all goes as planned - And we finally have a diagnosis, he skin, muscle, and nerve biopsy all show neuronal ceroid lipofuscnosis, aka Santavouri disease - It's a horrible diagnosis, but at least we have a diagnosis and can be at peace and enjoy what time is left. We don't have a time prognosis, the neuro says his crystal ball is broken. You can look up info about it at:
www.bdsra.org and Santavouri is the infantile form

I'll try to update more tomorrow, I'm just writing this quick before I go back and have a discharge meeting.

Thursday, August 30, 2001 at 10:55 AM (CDT)

Lots of jerking again today. We didn't give him the middle of the nite dose of chloral hydrate last nite to see if that helped that morning sleepiness, but it's difficult to tell.I also found out the baclofen can have an initial sleepiness effect, which shoul.d only last a day or so each time it's increased. Well, he's been going up on it every other day, so that could certainly be the problem too.

Had another major upset spell last nite, over an hour, so ended up with a valium order again, which did calm him.

Nathan's getting fit for a cast type orthotic for his ankles/feet tomorrow morning. Even in the three weeks we've been here, he's had some significant tightening in his ankles, and the range of motion is starting to decrease, so we are trying to be proactive before it gets any worse and becomes painful.

I heard from the nurses the plan is still to go home tomorrow, but that was before the orthotics appt was made, and we still have some major issues to discuss, like the crying spells every day, and the continual jerking and what we try from here, and how to get more than 6 hours of sleep at nite without him being sleepy all morning. Haven't talked to the dr today, he'll be back this afternoon, so should have a better idea after that.

Wednesday, August 29, 2001 at 11:20 AM (CDT)

Day #20
Today Nathan is having a very sleepy day again. Still not really sure why. Yesterday the jerking returned in full force, so intense he was practically bouncing in his wheelchair. He got very agitated, crying an dupset, around supper time too, so the neuro ordered some valium to try and calm him and hopefully help the movements calm down too. That worked for an hour or so, he was not crying, and the jerking slowed down a little, then the jerking started hard again.

Still looking at possibly a Friday release date, but truthfully, I"m not hopeful. With the jerking so bad again, I'm not sure he'll go home until we try something new. The problem with the jerking is that it's like he's exercising all the time; so his heartrate is very high, his muscles probably get tired and worn out, and it's just not good for him in general.

If you are reading Nathan's site for the first tiem, please click on "past journal entries" to read about what's going on.

Tuesday, August 28, 2001 at 04:22 PM (CDT)

Day #19
Nathan spent most of yesterday sleeping in his wheelchair, or almost sleeping. He didn't have many of the spastic movements, but it's difficult to know why. Could be because he was so sleepy, since the movements do stop when he sleeps; could be the baclofen finally is working; could be the next phase in his condition. Today he is more sleepy, but not as much as yesterday, but the jerking movements are back. He's been less responsive much of today, harder to get a smile from him.

He's starting to have some problems with the movements in his ankels and feet, they are starting to stiffen up and twist. The first step is to try a higher shoe to hopefully support it, then if that isn't enough we'd look at orthotics.

If this is the first time you're reading Nathan's site, please be sure to click on "past journal entries" for the whole story, and to sign the guestbook.

Monday, August 27 DAY #18

The old journal page got too full, woudln't let me add on top of it anymore. So if you are reading this for the first time, be sure you click on past journal entries. That will get you the most info.

Nathan's weekend was ok, no grand mal seizures, lots of the myoclonic jerk seizures. His depakote was increased again. The baclofen hasn't shown to be horribly effective so far, but we are going to increase it to 3x/day today to see if that helps. The plan is to try and be home by next weekend.

Friday, Aug 24

Nathan had another grand mal seizure last nite, so we're going to increase his depakote again today and see if that helps. The plan C medicine for the spastic jerking is being increased today too, so we'll give that a couple days to see if it helps. he's still having a couple episodes of "brain pain" a day, but hoping that increasing the depakote might help that too.

I won't be able to update the website until Monday now since the computer center is closed on the weekend.

Thursday Aug 23 We had a busy day yesterday, didn't get much of a chance on the computer. His legs are jerking constantly now, his tongue and mouth and arms go some. The baclofen is being upped today to see if that helps. No grand mals since Sunday, still having quite a few myoclonic jerks. He's having trouble swallowing his saliva, starting to choke and gag on that, if it's not draining out his mouth. No discharge date has even been discussed yet, if the baclofen works, maybe we'll get out of here early next week!

TUES Aug 21 Better day today, not as many myoclonic seizures. And no grand mal last night. The movement jerking has moved to the left arm/hand now and still in the mouth. His med to hopefully help that was upped again today, so we'll see what the next couple days bring. A geneticist is supposed to consult with him tomorrow, get another opinion, thoughts, etc.

No discussion of escape date yet, so we're still just in the "homestretch" :)

MONDAY Nathan started having seizures again over the weekend. Many myoclonic (which are jerk seizures) and a grand mal each on Sat and Sun evenings. He got hooked back up to EEG wires on Sunday, but got them off already today. Not anything new to be learned there.

The movement jerks (not to be confused with the seizure jerks) have lessened some. His mouth and tongue still go pretty much all the time, but the arms and legs have become more intermittent. so we are maybe moving in the right direction.

Our goals for discharge are to get the movements calmed, and to get the seizures to stop again. The neuro told me today he thinks we're on the homestretch, but I didn't do any jumping for joy, because in neuro language, that can still be a week!

He's been having 3-5 episodes/day of what I call "brain pain", crying and very irritable for no reason we can find, tylenol does nothing to calm him. They can last up to an hour, so we need to find something to calm those too.

FRIDAYGot some sleep again last night, after having to double dose the chloral. I'm hoping the trouble going to sleep was because he slept all afternoon after the biopsies.

I got a call from a friend last night who was wondering how things were going; what she was hearing from Curtis and what she was reading on the website weren't matching up. I've been trying to put a positive spin on what point Nathan's at, but maybe that's not doing anyone any good. His physical functioning is at a newborn to 3 month old level, he cannot hold his head up, if he is on his tummy, he can't turn his head from side to side, he can't sit at all, he bascially has no voluntary movements, except for some smiling and giggling. His arms, month, tongue and eyes are constantly jerking. He's not having seizures, and his EEG didn't show any seizures, which may be because there isn't enough brain function left to have a seizure. His brain waves are 2/second, a "normal" 5 year old should have 8/second. There isn't any way to reverse, or really even stop or slow down what is going on with him, we are still looking for a diagnosis simply to get an idea of how much time he has left, and to let us enjoy that time without this frantic search for a diagnosis.

I realize this is going to be very upsetting for you to read, and it's obviously very upsetting for all of us, and stressful. We appreciate your continued prayers and good thoughts and wishes.

Thursday, August 16, 2001 at 04:08 PM (CDT)

Nathan slept last nite, probably helped by the fact that the dose of chloral hydrate was increased. This morning the PT came to work with him, he did really well. The skin, muscle, and nerve biospy went fine, took a little over an hour. The only comment the surgeon had was that his muscle was pale, which means nothing to me. he's still sleeping, so thought I'd sneak over tot he computer and leave an update.

No decrease in the jerking, so the tranxene is being dropped, and starting a new med. We are also going to decrease one of his seizure meds a little.

It will take a week to a month to get any results from the biopsies, which has something to do with where in the examination process they find anything, or worse case scenario, not find anything. We haven't heard anything about the blood and urine work that was done last week, those more in depth tests usually seem to take longer too.

Wednesday, August 15, 2001 at 04:14 PM (CDT)

Another busy day, after a sleepless night. In spite of two doses of his chloral hydrate for sleep, Nathan didn't go to sleep until 4:45 am this morning. He did go hang out with the nurses for awhile, got all caught up on the hospital gossip, but is being very closed mouthed about it and not sharing it with me! :) His mood was wonderful last nite, Mom and Tom and my aunt and uncle brought Rebecca and Justin up to the hosptial, and Nathan was laying on a mat, just smiling and laughing. Justin leaned over to say "hi nathan" and give him a kiss, and Nathan had this HUGE smile on his face. He is still in a fairly good mood today too.

His tranxene (med that will hopefully help the jerking) was doubled today. Really haven't seen it help at all. His legs are jerking less, arms are still going, and so are feet, but now his face, eye, mouth and tongue are very involved. The tongue thing is really tough for him, he's been choking and gagging more.

This morning we had OT, PT and speech, and he did really well. He let the speech therapist use a nuk brush in his mouth with some peanut butter on it, tolerated it much better than we expected. He worked wll for the PT, and the OT brought the brace for his right hand to help with the swelling, and wants him to use headphones to listen to calming music (guess that lets out the country music that mom likes) a couple times/day.

The biopsies are scheduled for 12:15 tomorrow, and he is going to see the PT and speech therapist before that.

Wednesday, August 15, 2001 at 04:14 PM (CDT)

Tuesday, August 14, 2001 at 03:20 PM (CDT)

Sorry to be so long since updating - we have had a couple really busy days - I'll try to give you a brief overview

Monday, another MRI, showed not much more atrophy since the June MRI - the dr showed me all three MRIs from this year, Feb, June and Aug, and even my untrained eye could see the difference

The speech therapist was in to assess his swallowing. She came back today to do a swallow study, basically watch him try to eat and listen to his throat when he swallows, but he wouldn't allow anything in his mouth. We are going to start with some oral motor work, using some brushes with small tastes of food and try to get him to allow any touch to his mouth. So for now he's still on total tube feeding.

OT and PT have both been in. His right hand is swelling from the constant clenching, so I was wondering if we should brace it, and maybe also his feet which are twisted constantly in odd positions. His range of motion is still good, which is surprising since he is so tight and jerking all the time. For now, we are only going to put a brace on his right hand to keep it from swelling.

This morning he had an opthamologist appt. HIs optic nerve is pale, which means the images he's getting are not very good. The cortical visual impairment is intermittent, which all together means sometimes he's not seeing well, and sometimes not at all. The veins to the retina are thin, which could mean the beginning of retina pigmentosa, which I have not doen any research on yet

We are not having the VNS done on Thur. We're going to wait and see if we get any answers from the biopsies, and then can reschedule if we want later. He is still having the skin, muscle, and nerve biopsies done on Thur though.

Thanks for all your good wishes, and birthday wishes for both Rebecca, the big 1 year old, and Nathan, who's 5 now. We will do the whole bday thing for Rebecca when we get home, the cake to smash, etc.

Friday, August 10, 2001 at 04:28 PM (CDT)

Not really anything good to report. The staff here is very concerned about Nathan. They have discontinued him eating anything by mouth, he's been choking and gagging some when eating. And they are hooking him up to a machine to keep track of his breathing when he's sleeping, he's been doing some wheezing and gasping type breathing. He was hooked up to eeg as soon as we got here, the continuous arm jerks and leg jerks do not appear to be seizure, they aren't sure what it is. They all agree that nathan doesn't see anymore, they called it "cortical blindness", which means the eye is fine, the signal jusst doesn't get to the brain. He will have an opthlmologist look at him on Monday. He's also going to have another MRI Monday or Tuesday. We are also getting rid of one of his sz meds to see if that does anything positive.

WED AUG 8

Aloha! Curtis and I had a wonderful time in Hawaii, and the kids appeared to have behaved well for Gma and Gpa. Nathan hasn't had a grand mal in a couple weeks.

The agitation contines, we did find a med that at least helps him sleep. Today he had what we think is a seizure bascially from 11 am when I picked him up from summer school, until 9 pm tonite. His right arm jerked all day, continuously, no matter what you did to try and hold it down. He could even lay (lie?) on it, and it would still be jerking. We gave him 3 doses of a med that is supposed to help stop seizures, and it did nothing. He's not even able to crawl anymore, or sit up on the floor. He lays down, and just kinda rolls around. Curt and I both agreed that we had seen him regress even in the 6 days we were gone. We are still scheduled for the VNS (vagus nerve stimulator) placement next Thur (8/16)at St Paul Childrens. I did take him in for some more blood work last week, in a continuing attempt to find some answers or a cause for his deterioration.

TUES JULY 31
Of course I went and jinxed it last week, wrote no grand mals since Sat, and then that nite he had one. Wed he had three, and then Sat 7/28 he had one again. So it certainly has slowed down.

He's very agitated, not sleeping really at all, moving and fidgity all around. Also very irritable, lots of crying. Seems to be in his own world a lot, not hearing or seeing what is going on around him. The neuros nurse says this is the progression of whatever degenerative thing he's going thru. There are a couple of meds we can try to make him less agitated. Tried one last nite, and he was up from 1:30 am to 8:30 am, so guess that one didnt work.

TUES JULY 24 Nathan's changing his g tube went just fine yesterday, no problems. It's been nice already not to have the tuve hanging down all the time.

We also got his new wheelchair yesterday, there is a picture of it on the "photos" section of this website.

No grand mals since Saturday, still lots of jerk seizures, some very big.

VNS is Vagus nerve stimulator, a small device that goes in Nathan's chest, and has wires that attach to the vagus nerve in his neck, sending stimuation to the brain thru the nerve in an attempt to reduce or even eliminate seizures. The surgery involves two sites, one by his armpit and one in his neck. He only has to be hospitalized over nite, but then we go back daily for 3 or 4 days to have it turned up mre.

SUNDAY JULY 22
No grand mals yet today, hate to even write that for fear of jinxing it. Thur he ended up having 2, Friday he had 3, and Saturday he had three, starting at 7:15 am. What a way to start the morning!

Rebecca has an ear infection, to add just a little more excitement to our house, and is working on at least 4 teeth, so is CRABBY!

Nathan is having his g tube changed out to a button tomorrow (that means he is having the tube taken out and a flat device with no tube hanging out of it put back in). He will be put out for just a short time, they have to take the existing tube out endoscopicly (sp?), but it is a same day surgery procedure, so we should be home by late morning.

THURSDAY, JULY 19
VNS date finally reset, Thur Aug 16 - hopefully they are doing the muscle biopsy at the same time, and we are waiting to hear about scheduling the nerve conduction study

No new wheelchair yet, maybe tomorrow - can't wait - he's so floppy lately, probably from so many seizures, that I'm afraid he'll fall out of the w/c we are using now

Three grand mals on Wed, and one today, so not a good week at all - total of 7 in 4 days. But he's getting Gma Barb (Curt's mom) all trained in on them well, since she and Gpa will be here for 6 days when Curtis and I go to Hawaii (hopefully).

MONDAY, JULY 16
Not a good day today, Nathan had three grand mals. Started at 8 am, and then 2 this afternoon. Basically his whole day was either pre-seizure, seizure, or post-seizure. Thank goodness my mom is here since Curtis and Ryan are fishing, would have been even a longer day by myself.

Didn't hear anything on the VNS date today, will call them tomorrow. And still don't have the new wheelchair, the parts seem to be lost in the shipping black hole, hopefully they will turn up soon.

SATURDAY, JULY 14
We still don't have a date for the VNS, but we are probably looking at sometime the week of Aug 13. Hopefully will know more early next week. We are planning to do a muscle biopsy and nerve conduction study while we are there too.

We haven't gotten any results on the blood and urine testing Nathan had done just before we left the hospital. They told us 2-4 weeks for results on most of them, and even after we get the testing back, it might not give us any answers.

No grand mals this week since Monday (knock on wood), so that's great. We did up his depakene on Wed, so maybe that is helping. Still having drops and jerks, and eye rolling. The past two days he's been unable to even crawl, so has been putting in lots of wheelchair time. We are getting a new one, (Viking purple, according to Ryan), which will have more cushion and support him better.

Thanks to you all for your continued prayers and support.

TUESDAY, JULY 10
The VNS surgery has been postponed, we will not be back at St Paul Childrens this week. I havne't heard back from the lady who does the scheduling yet, but hopefully we'll get something in Aug.

Nathan's had a couple bad seizure days. Sunday nite he had one grand mal, and then Monday nite he had three. Plus LOTS of drops and jerks and eye rolling all day long.

Saturday, July 7

We'll try this again, I did update the journal both Thur and Fri, but for some reason it didn't show up.

We are home, came home this afternoon. He had no more grand mal seizures this week after his busy Monday, and we are just doing some med changes now.

The MRI he had last week shows some abnormalities. Since Feb, his brain has atrophied (gotten smaller), which obviously is not a good thing, at all. We are doing lots of tests trying to find a cause, which may give us some idea what his future will be like. But I asked the dr if there was anything that caused atrophy that wasn't bad news and he said no. We are still trying to take in the news and sort thru the info we have and have tons of questions of course. Dealing with all this neuro stuff is so difficult because there is no easy answer.

The VNS surgery next week is up in the air right now. They aren't sure the neurosurgeon will do the surgery since Nathans' been on an antibiotic for the extra skin around his g tube, and she's on vacation until Tues. So Tues morning we'll find out if we are going down Wed or not.

More now than ever before, we need your prayers and good thoughts, as we struggle to make sense of all ths new information and bad news, and play the waiting game to hear about surgery on Thur.

Saturday, July 07, 2001 at 08:53 PM (CDT)

We'll try this again. i did update the journal both Thur and Fri, and

Tuesday, July 03, 2001 at 09:29 AM (CDT)

Not a good day yesterday. nathan had 5 grand mals. They didn't do the diastat because he kept recovering between them, and they only went 1 minute or so. The neuro did start him back on depakote, and he had a big dose of that, and then hourly dosing for 5 hours all nite.

Didn't get much chance to talk to the neuro yesterday, but he did say that the MRI doesn't look normal, so he's going to do some more reviewing of that and see what he finds.

So far today Nathan's had more that 60 drop and jerk seizures, but no grand mal, so that a good thing.

Monday, July 02, 2001 at 09:29 AM (CDT)

Nathan's been here since Thur nite. I'm just going to give the whole history, some may be repeat for some of you, but it's easier and less time consuming than sending an email to all. Two weeks ago, nathan started having grand mals again after a 6 week break. Had two in three days, and then had three in one day (of course Curt was out of town). I gave him the diastat to stop them, and then he was out of it for several days. His eyes were rolling back in his head almost constatnly, he was non responsive, and his whole body was floppy. Had to stop on the highway twice on the way to a GI dr appt to sit him up, I was afraid he's stop breathing. We were afraid he was in status (non stop sz) so after an ER trip in Fargo to make sure he was ok to travel, we got down here about 9:30 Thur nite. His eyes continued to roll back in his head all day Friday, but there is no correlation on the EEG. Sat he had a pretty good day, responsive, no eye rolls. Sunday the eye rolls started again, and the little drop and jerk sz again. This morning he had a 1 1/2 minute grand mal, thank goodness he still had the EEG wires on, although one was loose, so we'll see what kind of reading we get. We had one ped neuro on Friday, an adult neuro on Sat and Sun, and now the new ped neuro for July starts today. So we know nothing at this point. Will update this hopefully this afternoon after talking to the neuro. Curt's mom is in Fargo with Justin and REbecca, and Ryan is at camp until Tues. My mom and sister took care of them down here Thur nite, Fri and Sat.

Tuesday, June 26, 2001 at 10:21 PM (CDT)

Thursday, March 29, 2001 at 10:26 PM (CST)

Tuesday, March 20, 2001 at 01:50 PM (CST)

Haven't updated this in awhile, there really hasn't been a lot of changes in Nathan's status. He's still having lots of drop and body jerk seizures, maybe a few less, but they are more intense, violent, etc so he ends up on the floor more - good thing he still has that helmet on

He won't be to full dose of the felbamate until April 9, so we have several weeks to wait.

We borrowed a wheelchair from school today, it's just so difficult to get him in and out of places since he's still not walking, and obviously Rebecca has to be carried too!

If you want to read the info from the hospital stay, just click on past journal entries.

Your continued thoughts and prayers are greatly appreciated.

Sunday, March 11, 2001 at 09:08 PM (CST)

We've been home for a week now, and it's been a tough week. Nathan is still having hundreds of the head drop and body jerk sz every day - really not able to walk because of so many seizures, we bought him a helmet to wear so he doesn't hurt his head - the feedings and meds in the g tube are going well- nathan and i both had the flu this week - hoping the medicine will start working on those sz pretty soon - He went to school Mon, Tues and Thur this week, wasn't excited about it, but seemed to have fun once he was there

To read the past stuff that went on, click on "look at past journal entries"

Saturday, March 03, 2001 at 07:27 PM (CST)

WE'RE HOME! We left the hospital bright and early this morning! Wow, I had forgotten what fresh air smells like, hadn't been outside for 16 days. Nathan is still having LOTS of the head drop szs, but hopefully that will improve as the new medicine takes effect.

Basically what we learned in our 16 days at St Paul Childrens:
the drs don't think Nathan has Landau-Kleffner Syndrome anymore, his EEG has changed since his last EEG in June 1999. Overall his EEG is slow, and the left side is even slower. He's started having many different types of szs; grand mal (GTC's), absence, complex partial, and atonic (drop, which isn't necessarily a good thing. His MRI showed nothing, and the metabolic testing that has come back all is negative. So basically at this point we don't know what the underlying cause of his szs is.

Thank you to all of you for all your thoughts, prayers, good wishes, support, etc.

Friday, March 02, 2001 at 02:06 PM (CST)

I think the end is in sight - if all continues to go well this afternoon and over nite with tube feedings, etc, we will go home tomorrow (Sat). He got the EEG wires off this morning, the IV is temporarily disconnected, and he's getting 4 supplemental feedings/day thru the tube, depending on how much he eats and drinks (haha) at each meal. I'm learning how to clean the tube and the stoma, and struggling with doing the feedings. I just need one more hand right now to juggle all the stuff. I'm sure soon it will become second nature.

Started a new seizure med today, possible side effect: sleeplessness - yikes! but should have good sz control once the levels are built up, so we'll work around the side effects if we can. also can cause lack of appetite, but that's not such an issue anymore with the tube in.

Curtis is here for the weekend, which now appears to be only over nite. But that's ok, it means we get to go home! He said Rebecca is getting all ready for mommy to come home, she's not sleeping thru the nite anymore, which she was doing at Gma Marla's. oops!

Yes, I'm excited to go home of course, but also nervous. this is a great safe environment, he has a sz, all i do is push a button and a nurse is there to take care of it. Can't figure out what to do with the feeding tube, call the nurse for help. On the other hand, I'm sure stock values at McDonalds and Burger King have dropped tremendously since we've been down here and not doing our twice weekly lunch mtgs.

If we get home tomorrow, I'll be able to update this, if not, I'll update on Monday. The computer center here is closed over the weekend.

Thursday, March 01, 2001 at 02:36 PM (CST)

G tube is in use already, and already has made life so much easier - putting his meds in 2x/day, no more needing two people to hold him down, etc and no more begging and pleading to get him to take a drink - what a difference

Nathan had a grand mal (GTC) yesterday afternoon, went 5 1/2 minutes, ended up getting loaded again - so slept most of the evening recovering from that

Got the EEG wires back on today, which of course he hated, but did actually stop crying a couple brief moments during the whole thing, so maybe we are making progress

The offical "tentative" word is maybe we'll be sprung this weekend, or Monday at the latest. We have to make sure the tube is working good, and that he can tolerate larger qtys of fluid being put in, we're obviously just starting with small amounts for now. Then we can start a different anti-sz med and hopefully stop the head drops, etc.

I can't even believe how many people have visited the website and signed the guestbook. We are so truly blessed with good friends and family, thanks for all your good wishes and prayers!

Wednesday, February 28, 2001 at 02:20 PM (CST)

Day 13 - G tube went in this morning - seemed to go fine - Nathan's voice is a little husky this afternoon, but I would guess that is to be exepcted after having a tube put down it - he seems to be doing ok, I think it's more mom that's nervous about it all, I even called the nurse to come help me the first time his diaps needed to be changed, didn't want to hurt anything.

He started having head drop szs the past couple days, LOTS of them, so is getting hooked back up to EEG tomorrow - his med levels are low right now because we are changing meds, so the sz are not unexepcted, but they are concerned why he's having so many different kinds of sz lately.

We are still watching LOTS of Barney videos, I know Barney Adventure Bus better than I ever thought possible. But it keeps him happy and content, so...

Remember, if you email me at msn address and don't hear back, you can either resend or send to hotmail address I try to check it every day, but sometimes it's difficult to get away. Thanks for all the good wishes and prayers.

Tuesday, February 27, 2001 at 01:40 PM (CST)

Day 12 - the G tube goes in tomorrow at 8:45 - Nathan was up a couple different times in the nite for an hour or so each doing his "no no" crying, the dr isn't sure what that is still - the dr putting the g tube in wanted a GI series (?), so that was done at 8:15 this morning -0 what a way to start the day, having a tube put down your nose and barium put in - yuck! - but everything looked fine in that - yesterdays intake, 5 whole ounces of juice, which is 150 cc (they want him to have at least 1000 cc/day) - today's current intake 0 ozs!

still no real info as to when we get to go home, I know they want us here minimum of 48 hours after the surgery for pain meds, etc, but then we also need to keep working on his sz meds and make sure the tube is working, keeping stuff down, no infection, etc. I'm thinking about changing my mailing address pretty soon!

but through it all, nathan keeps on smiling (at least as soon as they are done with whatever they are doing to him) - he certainly isn't a grudge holder!

also wanted to let you all know that if you sent me an email at my msn address and you don't hear back, resend it, or send to the hotmail address - I have a problem with my msn email getting lost in the internet blackhole if I don't get it checked every day - I don't want anyone to think they are being ignored!

Monday, February 26, 2001 at 01:49 PM (CST)

Day 11 - Nathan had 2 big seizures over the weekend, ended up getting "loaded" for both (hospital talk for getting the rectal valium) - One was this morning at 1 am, so needless to say, I won't be getting much sleep once we get home! I'll be too worried about another middle of the nite sz. Still not drinking basically at all, so we made a big decision today, we are going to have a G tube put in, which will allow us to just dump in supplemental feedings if needed, and to keep him hydrated. We should also be able to put his meds in there, which will help eliminate the twice daily BATTLE! Don't have that scheduled yet, maybe Wed, and then we'll need to stay a couple days aftr that to make sure it's working ok. His IV blew Sun nite, so had to have another IV put in. Curt and Ryan were down for the weekend, and didn't get back Sun because of the roads. Curtis actually took Ryan, Justin and Rebecca back with him, since Gma Barb is going to be in Fargo on kid duty this week. Thank goodness for Gmas and Aunties. Thanks for all the good wishes and notes left on the website!

Friday, February 23, 2001 at 02:45 PM (CST)

We are on day 8 of our 5 day stay! MRI was yesterday, and showed that Nathan has a sinus infection, and also a spot on the left side, but the doctor didn't think it was anything. He's having the radiologist look today and give him another opinion. Now our major challenge is getting the fluids in - 1000 cc/day! We are pushing juice in any flavor we can think of, ice cream, popsicles, even Pop! If you can believe it! And he just shakes his head and says "no" to everything. That's been his favorite word since we've been here, but considering he was stuck 4 times for the first blood draw, took 3 times to get his first IV started, another 3 times for the 2nd IV, and then the EEG electrodes put on twice, he's had a lot to say no to.

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