History

Saturday, April 18, 2009 6:14 PM CDT

Hello everyone. It has been a long time we know. We kept saying that we needed to update but just haven't done it. It's been a crazy last few months for the Fargo-Moorhead area and for our family. March brought the hope of Spring, but the reality of Blizzards and Floods. We watched as the river climbed higher and higher and the city built levees and dikes to protect homes and businesses. We also watched as the water climbed closer and closer to Jess's grave, but while the cemetery was closed and dikes were built around it, Jess's grave stayed dry.

As the flood waters were cresting, we enjoyed watching our nephew Colby's basketball team go to the MN State Boys Basketball tournament and eventually finish off their undefeated season with a state championship. It was a welcome respite from the flood but it was hard to be away from friends and family with the river climbing.

We also attempted to enter the world of foster parenting, but discovered that our grief doesn't leave us in the place yet to offer hearts in this way. We need more time to deal with our loss, but we thank everyone for their prayers and support.

With the help of the good people at Corwin Chrysler-Dodge, who wanted to help us with the Journey For Jess, we bought a Dodge Journey. It's the car we were looking at for our trip both because of it's symbolism and it's functionality. As you can see from the picture, it is our "Journey" for Jess.

Now, the snow has melted, and the second crest has passed and we are still waiting for spring.

We know how much you always look forward to pictures of Jess, so be assured that we will be updating the page again soon with a picture and updated information on the Journey For Jess.

Thanks for checking in on us.

The Beechers

p.s. Our good friend Maddie from Colorado got a tattoo to celebrate her 18th birthday and new-found adulthood. We like it.

Sunday, January 25, 2009 7:38 PM CST

Dear Friends,

As we near the start of the Journey For Jess the time has come to ask each of you for your help. Would you be willing to contact your friends, families and local businesses about the possibility of them donating to the Journey For Jess?

We are making up a sponsor packet for you to give to potential sponsors and need to get an estimate for how many we will need. The packets are somewhat expensive so we are asking that you use them to focus on businesses and individuals that you have a relationship with to keep costs down. We would like for you to start contacting people in March, so if you are willing to contact people for us please let us know how many sponsor packets you think you will need before February 13th. Once we have an estimate we will order the packets and get them to you by the beginning of March.

We are also making an informational flyer/postcard that is less expensive that you can give out that will direct people to the website or to contact us by email for further information. These will be available in early March as well.

Thank you all so much for helping us with our Journey For Jess.

The Beechers

Wednesday, January 7, 2009 7:02 AM CST

Happy Birthday sweet girl... You would have been 5 years old....is that possible? We know that you and all the angel children are celebrating today in heaven. Down here on earth, we will celebrate your life and love in a quiet way. We miss you honey- your laugh, your voice, your smell, your touch. We love you so very much!

Love, Mom, Dad and big brother Noah

Sunday, November 30, 2008 10:08 AM CST

It seems that this year isn't any easier than last year- actually it is almost harder. There is no more numbness to protect us from our reality. So we are hanging on to our memories and praying for peace this season.

She is the most beautiful girl isn't she?! We love and miss her even more today than ever....

Hug your kids- snuggle them tight- kiss their cheeks til they beg you to stop and tickle them til their laughter fills your home and heart- those are the best memories and the truest blessings in our lives.....

May your holidays be filled with peace and love

Monday, November 3, 2008 8:48 AM CST

Hey everyone.
We've got a few prayer requests for you.

If you could pray for Fletcher Gist. He is a friend we met through Jess having epilepsy. He had a prolonged seizure last week and had to be put into a drug induced coma. Please play for strength and healing for him and his family.

Also, Amy's aunt was taken to the hospital yesterday with a yet to be defined issue. She has been transferred to the hospital in Fargo and is undergoing some tests.

Hope everyone is well.

The Beechers

Sunday, October 19, 2008 7:52 PM CDT

Hi everyone. I just wanted to take a minute and let you know about the work Jess has been doing as a guardian angel.

On Friday morning while I was at work I started to feel very anxious, like something was wrong. In my head I went through the things that normally cause me stress: work, life, lack of Mountain Dew, etc. But it wasn't any of those things. It's the third time this has happened in the last year and I eventually came to the same conclusion that I came to the first two times. Kylie Jo. I called home and asked Amy to call Maria where we learned that Kylie was in the midst of a cluster of seizures. The first time it happened was the last time Kylie was hospitalized about this time last year. The second time was another cluster of seizures. While Kylie has by no means been seizure free for the last year, her seizures have been much more controlled. In addition to 'freaking out' Maria and Amy it got me wondering why it was happening.

Once again it took a while, but I finally realized it was Jess. She was telling me 'Daddy, you need to check on Kylie'. I can only imagine her impatience as I struggled to realize what she was telling me. On earth she would have been doing her oo, oo, oo that was so common when she was trying to tell us what she wanted. But I think she was also reminding us that she is still with us and is watching over us as our guardian angel.

Monday, September 29, 2008 11:33 AM CDT

I guess you could say, I had a moment last night. The kind of moment that may seem insignificant to most, but to those who have lost a child, you will understand. I was going through my CD holder in my car (preparing to bring to the auto body shop for a new door- whole other story there:) ) and as I was pulling the CDs out, stuck to one of my favorite CDs, was Jess' Zoe barrette. The one in the picture here. It was a moment that took my breath away, as I remembered how she did not want to sit still to have her hair done, but how she loved these barrettes in particular. It was stuck to a CD I had listened to that day, and yet it wasn't there before. Just her way of letting me know she is always close to us. Just a way to remind me of the constant ache in our hearts, and yet it put a smile on my face, and on Jason's when I brought it in.

It certainly doesn't get easier, at times more bearable perhaps, but always there is an ache for our sweet Jess.

WE LOVE YOU SUGAR BEAR......

Thursday, September 18, 2008 9:15 AM CDT

It is sometimes hard to know what to write-
Please pray for each of us as we continue to miss our sweet girl.
Pray especially for her big brother as it seems to be a little more difficult right now for him.

Thanks for continuing to lift us up in prayer
Amy

Monday, September 1, 2008 8:59 AM CDT

Update 9/11/08
Jess has another angel friend tonight as Frankie Roth passed away this afternoon. He joins his sister Tori as well as Jess, Drew, McKenna, Caroline and so many others whose lives on earth were cut short. Please follow the link below to read Frankie's story and to give your support to Meg and Will who are struggling with the loss of a second child.

http://www.caringbridge.org/visit/frankieroth

It has been four years today that Jess' Journey with seizures began. It was our first 911 call, first ambulance ride, first extended seizure. It is amazing the things that you remember. I guess this date marks the day that, unbeknownst to us at the time, would change our sweet Jess' short life and our lives forever. We would become not only more anxious, but more importantly more compassionate, more loving, more aware of the simple things in life. Because of this day we became better advocates for our children, better communicators with each other, better people all around. We became acutely aware of the small things that we had taken for granted and we appreciated every accomplishment, big or small, with gusto. We became changed.

This pic was taken before Jess had her first seizure. Amazing, the eyes, the intensity, the beauty.

Four years ago today.

We love you sweet Jess- you made us better parents, better people.

Monday, August 18, 2008 12:36 AM CDT

Sorry it took so long to update after the stroll- we've had a busy few days!

The stroll went very well- we raised over $1500 and because we exceeded our goal we made the "grand club" which is super! Thanks so much to everyone who contributed, walked and supported the Journey for Jess team in any way! You are all vital to the success of raising awareness and money for those affected by seizures.

The picture shows our team- I think there were 34 of us with all of the little ones.

We spent the weekend with the Gibbons family which is always so much fun for us. Noah loves to be with "his girls" as he calls them and we all get our fix of little girl time. Not to mention that we get to hang out with great friends- Neil, Maria, Shannon and Rand.

It is one week til school starts and we ask that you pray for a smooth transition for Noah- it is always a bit more anxiety producing the first few weeks.

Thanks again for your support and we'll update when we have more JFJ news.

Love, Amy

Wednesday, August 6th Noon

WE ARE ONLY A WEEK AWAY FROM THE EPILEPSY STROLL AND WE NEED YOUR SUPPORT!

The stroll is Thursday, August 14th beginning at 6:00PM at Lindenwood Park. We would love to have you walk with us. Our team goal is $1000- with just 10 people that is only $100 for each walker to raise. If you would like to sponsor our team financially, you can visit www.firstgiving.com/journeyforjess

IF YOU PLAN TO WALK AND HAVEN'T TALKED TO US YET, PLEASE EMAIL US AT ajbeech@yahoo.com

Blessings to you as you consider supporting our efforts to help those affected by seizure disorders.

Tuesday, June 17, 2008 11:43 PM CDT

UPDATE: MONDAY JUNE 30TH 10:00AM
Jason and I returned from our weekend away at Red Lodge to find that we have some friends who need your prayers urgently!!

One of my friends from my moms 7940 group, had a baby boy on Saturday. Joyous time- except that they discovered he has some heart complications and will be needing heart surgery as soon as he is strong enough. He is in the NICU and they need your prayers. Their 3 year old Tori died a year and a half ago from brain cancer, and they really need a break here- send some prayers up for this new little boy, Frankie. www.caringbridge.org/visit/frankieroth

The Gists could use some major prayers- Fletcher had the grid placement surgery and now is having major complications and huge seizures and basically we are praying for some peace and healing so that they can proceed with part 2 of the surgery to remove the seizure infested part of his brain, if that is even possible at all. www.caringbridge.org/visit/gistboys

Finally, another coworker of Jason's has lost their 4 year old daughter to complications of pneumonia and several medical conditons. Brooklyne died on Wednesday night and Jess gained another new friend in heaven. I think her circle of angel friends is big enough now and we can slow down on children going to heaven.

Jason and I commented yesterday that once you are a part of a group of parents like this, it seems like you see so much more pain and death than you ever expected or imagined you could. And it is all children- not right- not right at all.

I guess I am not only sad but disheartened a bit too.

Thanks for checking up on us- Amy

Wednesday, June 11, 2008 1:28 PM CDT

It is almost here!! "Bubbles, Butterflies and Balloons" , a celebration of Jess Marie's life and the kick off to our Journey for Jess fundraising campaign, is this Sunday, June 15th from 1-4 PM at Living Waters Lutheran church. Pray for sun because we have some water games planned. If rain, we will still have all of the fun inside, so plan to come!

This picture was taken about a year ago at Grandma and Grandpa's house. Jess and Noah love chips and salsa and Jess was making sure she got her fair share of the salsa in this pic!

One week til the one year angel date anniversary- not sure how it will be for us but we will take things as they come. Thanks to everyone for all of the help with the event on Sunday- we will see you then!!

Love, Amy

PS Pray for Kylie- she's having more seizures again-ugh!!!

Monday, June 2, 2008 6:52 PM CDT

Hey everyone,

Just wanted to put a prayer request out there for Evy Lynn Sjostrand. I think the official relationship is first cousin once removed, which is to say Amy's cousins daughter. She was born on April 24th, 2008. At about 3 weeks old Evy was diagnosed with multiple ventricular/aorta and pulmonary defects. The condition will require surgery, but the doctors were hoping to hold off until she got a little bigger. They are now headed to Mayo amidst concerns that not having the surgery could be more detrimental than having the surgery. Please pray for Evy, Tricia and Darick (mom and dad) as they go through this difficult time.

The Beechers

Thursday, May 22, 2008 9:50 AM CDT

I know this is a little out of character, but I wanted to bring your attention to something in the news today.

MARIA SUE CHAPMAN, DAUGHTER OF STEVEN CURTIS CHAPMAN, DIES IN ACCIDENT AT FAMILY HOME

I'm not sure how many of you know this, but our first date was to see Steven Curtis Chapman in concert in Sioux Falls. His music had a profound impact on us and we have seen him in concert many times over the years. Please visit www.stevencurtischapman.com for more information.

Please pray for the Chapman family and all those who grieve the loss of loved ones.

The Beechers

www.journeyforjess.com

Wednesday, May 7, 2008 10:05 PM CDT

Just wanted to share with you one of my favorites of Jess- she sure did love her peanut butter. We are doing ok- glad for the sun that is now shining. We are anxious to get Jess' garden going and flowers and things out to the cemetery. Abigail (Caroline's mom) and I met for coffee at the cemetery yesterday. We sat in the sun with our girls (Danielle included) and talked about our girls- we even caught a little tan/burn. I have been reminded and filled with good, funny, positive memories this week- it is good to have these because too often the end memories are there. But we have reminisced about when Jess would insist on singing "pida" (itsy bitsy spider), and how she would caress your back when you held her, and how she was always sunshine in our lives. We love her even more than we thought possible and we miss her deeply...
Until we have more on the BBB event and JFJ.....Amy

Tuesday, April 15, 2008 8:10 PM CDT

****Update 04/18/2008*****

I am going to be on the news tonight talking about the Journey For Jess. It will be on WDAY at 10. (I didn't make the 6 news but there was a preview saying it would be on at 10)

Also, I am accepting donations/sponsors on the site now.

Have a good day!

Jason

Hey everyone.

It's been a tough couple of weeks watching our friends the Vetters going through what no one should ever have to go through. It has made us miss Jess even more even though we know that she is running and playing with Caroline, Drew, McKenna, Tori and Ariana.

Things continue to go well in preparation for the Journey For Jess.
I have added desk calendars to the store and am working on a group outing to see the Twins.
I will post the details on the JFJ site when I have them.

We are also continuing to work on the details for the Bubbles, Butterflies and Balloons Celebration which will be held at Living Waters Lutheran Church on June 15th.

I am looking for people who would be willing to donate framed photographs for the silent auction, so if you have a personal favorite that you have taken and you are willing to donate it to the silent auction please let me know.

Thanks for checking in on us.

The Beechers

www.journeyforjess.com

p.s. we are 116 visits away from 200,000 so let us know if you are number 200,000.

Friday, March 14, 2008 8:37 AM CDT

Not much to say here. I just wanted to put up a new picture in anticipation of spring. Jess sure did love being outside.

Please keep our friends the Vetters in your thoughts and prayers as Caroline likely will not be with us much longer.
Click here for Caroline's Caring Bridge page

Things have been going well in preparation for the Journey For Jess. One new thing I added is links to some online stores where a percentage of your purchase will go to the Journey For Jess.
Click here to go to the page

Bubbles, Butterflies and Balloons
Sunday June 15th, 2008 1-4PM
Living Waters Lutheran Church, Fargo ND
www.journeyforjess.com

Wednesday, February 20, 2008 8:51 PM CST

Mark your calendars.

Sunday June 15th, 2008 (yes I know it's fathers day)

Living Waters Lutheran Church, Fargo ND

Bubbles, Butterflies and Balloons a celebration of Jess' favorite things.

Check it out at www.journeyforjess.com

Wednesday, February 20, 2008 8:51 PM CST

Tuesday, January 29, 2008 9:48 PM CST

This is one of my most favorite pictures of Jess.

It was taken the weekend of her benefit almost two years ago. I don't remember thinking at the time that those were good times, but looking back I know they were.

Our best day without Jess will never be as good as any of the days that she was with us.

More than anything, we want to remember Jess. To remember her life and how she touched so many peoples hearts and how she continues to do so.

I think too much. I know it, my family knows it, my friends know it.

All I can think about now is trying to reach as many people as possible to honor Jess and give hope to others. That's what the Journey For Jess is about for me. Keeping Jess' memory alive and trying to make a difference in the lives of other families struggling with seizure disorders.

I am so humbled that so many of you are going to be sharing in this vision with me. In the week that www.journeyforjess.com has been runnning there have been almost 2,000 unique visitors. Sales in the store have been so successfull that I am going to be ordering the t-shirts this week and should have them by mid February. (if you want a first addition you can go to www.journeyforjess.com/store.html and order one) I also found a charitable foundation that is going to help me with making sponsor money tax deductible and could start accepting sponsors in March.

What a great start to the Journey For Jess!!

Thanks for checking in on us.

The Beechers

Monday, January 21, 2008 7:11 PM CST

It's taken a little longer than expected, but the foundation is finally in place to begin the Journey For Jess fundraiser that I have been planning.

The goal is to honor the memory of Jess by raising money and awareness for seizure related disorders like epilepsy and tuberous sclerosis.

You can learn all the details by going to www.journeyforjess.com

The Journey For Jess won't be accepting sponsors until July, but there is an online store where you can order T-shirts, Car Window Stickers and pictures before then with the proceeds going towards the costs associated with the Journey.

We will need your help to make this as successful and far reaching as possible so please pass the website on to anyone that you think may be interested.

The Beechers

Thursday, January 17, 2008 5:45 PM CST

I wanted to take a minute to tell you how much Jess loved school and therapy and all of her teachers, therapists and paras. She would squeal as we drove up to the school or therapy building and try to get unbuckled from her car seat. She started school the day after her third birthday and thoroughly enjoyed every minute. So thank you Danielle, Elise, Lori, Sheila and Carlene for making her short school experience a joyful one. And thank you Brian, Rochelle and Rachel for always encouraging Jess to learn new things, say new words and walk more steps. You were very important to Jess and we are so blessed that you helped her be the very best.

This picture was taken on Jess' first day of school- January 8, 2007.

Love to all- Amy

Sunday, January 6, 2008 8:28 PM CST

Your birthday is almost here sweet baby girl....on your day I will celebrate you...I will take a bubbly bath... I will eat peanut butter and fruities... I will watch Dora... I will give your big brother extra head and neck hugs...I will read "llama, llama red pajama"....I will sing Happy Birthday to you...I will eat cake with my fingers....I will celebrate the joy you have brought to my life....I will giggle....I will cry because I miss your giggle...I will reminisce...I will continue to honor you....I will love you even more than I did yesterday.

Promise me that you will celebrate with Drew, McKenna, Tori, Ariana and all the other special angel children. Run with them, giggle with them, give them some of your great moochies and hugs.

Happy birthday sugar bear-I love you.

Thursday, January 3, 2008 7:41 AM CST

Christmas has come and gone. Another hurdle we have made it over, not without missing our girl tremendously. We did have a good time with both sides of our families and want to say thank you so much to all of them for accomodating our need to do something different for this first year. Thumper pond was a great time, as was the Grandstay and bowling in St. Cloud. Noah and I have been spending some quality time together over the past few days and this morning he heads back to school.

Now comes the next hurdle- Jess' birthday. I have heard countless stories of families doing things to honor the memory of their loved one they have lost, on their birthday, but this first year, we are going to concentrate on getting through the day. We are working on how to honor and celebrate Jess' life as Jason has explained in the previous entry.

For now- we are still working on one day, hour and minute at a time.

Thank you for all of your love and support-
Amy

Tuesday, December 25, 2007 7:21 PM CST

For as long as I can remember I have had a Christmas �slogan� running through my head that I wanted to use for a Christmas card or something. It is:

From The Cradle to the Cross � Let the Journey Begin

That thought has been in my mind so often for the past ten years, but I never fully gave myself to it. I don�t think that I really knew that my journey had begun, or what it truly meant.

I do now. With the loss of Jess this year I have started thinking more about this journey that we are on, and in specific the end of the journey. For Jesus it was the Cross, because of Jesus, for us it is Heaven. That never meant more to me than it does this year.

The concept of life as a Journey has taken such a strong hold on me. We started using Jess� Journey when we found out she had epilepsy. Even then I don�t know that I understood the journey. Symbolically Jesus� journey starts at Christmas, and ends at Easter with the resurrection, but I have to remind myself that it not�s just 4 or 5 months. It�s not Christmas to Easter. It�s the beginning of life to the end. 3 months, 3 years, 33 years, or 103 years. We don�t know how long we have on earth, but we do know that we will have an eternity in Heaven. As I have learned these past 6 months, the hard part is waiting.

With that thought in mind, I am planning a journey of my own. It will be a journey to raise money for the Epilepsy Foundation and TS Alliance. It will be a journey to honor the memory of our beautiful angel that we miss so very much. It will be called the Journey For Jess. I�m not quite ready to kick it off, but hope that I will be in early January. I will update this page with the information when it is ready.

So let the Journey Begin - From the Cradle to the Cross.

The Beechers

Tuesday, December 18, 2007 8:26 AM CST

6 months- is that possible? Can a 1/2 of a year have gone by already? Has it really been that long since I touched your cheek or played with your hair or had the best moochie ever? Sometimes it seems like forever and I know that so many years lie ahead before I will see you again.

I love you Sugar Bear- I miss you terribly- I long to hold you and cuddle with you and feel your heartbeat.

You are the most beautiful princess in the world and mommy is so blessed to call you my baby girl.

Until forever- that's how long I will love you

-mommy

Thursday, December 6, 2007 6:16 PM CST

Please join us on Sunday December 9th at 7:00PM for a worldwide candlighting ceremony to remember all of the children who have died, especially our angel friends, Drew, McKenna, Tori, Ariana and of course our beautiful Jess Marie.

We are coping as best we can during these holiday times. We miss Jess every minute of every day and although we know she is happy and at peace in heaven, we feel the loss of her spirit and beauty here on earth.

Our updates may not come as often, simply because at times it is hard to know what to say except the same thing- we miss her, we love her, we long to touch her and kiss her and hug our beautiful angel again.

It is our wish that during this busy holiday season, you would all allow yourselves to spend quality uninterupted time with your children- not worrying about your job, your to do list, your everyday concerns- get lost in the moment of being with your children and don't forget to tell and show them what they mean to you.

Peace and love to all of you- the Beechers

Tuesday, November 13, 2007 6:00 PM CST

I have returned from a wonderful time with my 7940 moms' getaway. These women are the most unbelievable people I know, and I truly believe that God placed them in my life at the very moment I needed them most- they are truly my dearest friends- I love you all!

We are doing ok - missing our angel princess every minute of every day- the little things are truly what we miss the most. Like how she would sleep (as evidenced in the picture), how she would rub your arm, back, tummy, or whatever bare skin she could find, how she loved sips of your pop or coffee, how she laughed and giggled and gave the best head and neck squeezes. We miss it all.

We are preparing ourselves for what is to come in the next three months with all of our family birthdays, holidays and of course her birthday in January. We pray for peace and that we can see through our sadness and loneliness, to the joy of the Christmas season.

We again are overwhelmed by all of the support and kindness shown to us every day- God is blessing our lives by all you do for us- thank you!

We love you all- Amy

Wednesday, October 31, 2007 2:26 PM CDT

Happy Halloween everyone! We had a great time in Colorado and spent quality time with our friends the Reeves. We even got to visit one of the largest pumpkin patches I have ever seen!

We are planning to take Noah to Jason' work, my work, a few houses and the mall for trick or treating. We won't be handing out the candy tonight, as it was one of Jess' favorite things to do, and it is a bit too difficult.

Hope you all have a safe Halloween.

Love, Amy

Tuesday, October 16, 2007 9:09 PM CDT

Tommorrow we fly out to Colorado for 5 days with our good friends, the Reeves. We are very excited and yet it is bit bittersweet, as Jess loved being there.

We only made it to Colorado once with Jess, but this picture shows how much she enjoyed herself.

We will update when we return.

Thanks for checking in on us.

Amy

p.s. If I get any good pictures I will post them at http://jdb.aminus3.com/

Jason

Monday, October 1, 2007 9:03 PM CDT

I am not sure what to say with the addition of this picture. Yes it is a beautiful headstone, yes it is a perfect way to remember our girl, yes the butterfly looks great as does the picture of Jess....but.... it is also another constant reminder of how much we have lost in losing our princess. We are sad these days, all three of us as we think of Jess' life, of the things we are missing out on with her, of all the things she is doing now in heaven, that we did not get to see her accomplish here on earth. We are simply sad, and we must live through it and pray that God is with us each day...one day... one hour...one minute at a time. Thanks so hanging in with us. We cherish you alll....

Love, Amy

Jess' sweet girlfriend, Kylie Jo needs prayers please... the seizure monster won't leave her alone...Kylie needs seizure relief... her family needs answers and peace...please pray....

Tuesday, September 18, 2007 3:19 PM CDT

It's been 3 months. 91 days. And there are still no answers. Just silence. It is not getting better even though everybody says it will. I am doubtful.

I am now a part of a group that no one wants to be a part of. Meeting people I wish I never had to meet because we have all lost children. I've started looking at the obituaries more which I never used to do. In a lot of ways I had lived a sheltered life. Especially emotionally. I was always able to distance myself from what other people were going through. I never realized how many young people die every day/week/month/year. I had no idea there were this many people trying to go on with their life having lost a child.

I remember when both Drew and McKenna passed away. We didn't know the Olsen's very well then, but we followed their story very closely. When I would read Shannon's entries, I could do it without emotion, without a connection. That has changed. I feel a connection now to the Olsen's I never could have imagined before Jess died. I can now understand the words she wrote then.

I didn't know I could love Noah and Amy more, but I do.

I didn't know I could worry about Noah more, but I do.

I didn't know that I could be so attached and worry so much about other little kids besides my nieces and nephews, but with Kylie and Caroline I do.

I didn't know that I could believe in God more while being so angry that I sometimes wish I didn't believe.

I always believed in Heaven, but now I know it exists. Because it has to exist.

Here is a poem I have been working on, I wasn't sure if I should post it or not as it was written to Jess, but it really fits how I am feeling today.

Jason

I�m gonna hit Heavens gates running
When my time on earth is through
I�ll run past Jesus outstretched arms
So I can get to you

I�ll hold you in my arms again
And never let you go
My heart broke when you left this earth
In heaven it�ll be made whole

I lie awake in bed at night
Wondering what it�s like
In heaven with your angel friends
And Jesus by your side

Do you miss the ones you love
Who mourn your loss each day
Who look for answers and reasons why
You had to go away

I envy those who�ve gone before
And those who will proceed
To Heavens holy gates before
I from this earth will leave

That�s why I�ll hit Heavens gates running
When my time on earth is through
Because I know that once I leave this earth
I�ll get to be with you

Thanks for checking in on us, Jason

Thursday, September 6, 2007 7:26 AM CDT

We are almost at the end of week 2 of school and this week has been a bit rougher for Noah than the first week. Last week he did awesome- even went to the lunchroom for lunch and out for recess! This week there have been tears in the morning and lots of time spent in Mrs. Ramberg (his special ed teacher's room). We are still trying to figure out what is up but I suspect he isn't sleeping as soundly and is more tired in the mornings. Please pray for tear-free mornings for him.

I spoke with the monument company yesterday and it sounds like Jess' headstone will be installed at the end of next week. They can't give us a definite date, but we are out to the cemetery pretty much daily, so we will post a picture when it is up.

So many have commented on this picture of Jess and how it makes them happy to see her smiling face. Noah wants to look at it every day and kisses it and giggles. This is our Jess-sweet, smiley, always bringing joy and warmth to all of us. Wow- do I miss her- if only to touch her face and hair and give her big wet moochies and hugs.

until next time- Amy

PS Please keep my cousin Nik in your prayers. He is at the children's hospital at Mayo. He has spina bifida and just had another surgery on his legs, and is dealing with post-op bleeding and infection. His site is www.caringbridge.org/visit/nikjohnson.

Sunday, August 26, 2007 6:52 PM CDT

School starts tommorrow for Noah- we are so happy with his teachers- all of them love him so much already and are so good to us. God has taken care of this for us.

We still take things day to day around here. We miss Jess so much and wish everyday that she could be here with us, but know that she is playing with Drew, McKenna, Tori and Jesus.

Overwhelming sadness is the emotion that hits me hardest at times. Sometimes I guess you just have to let yourself sob until you are exhausted.

I have started my days schedule and that is going well. I have to say that my legs are aching by the end of the day, as well as the rest of me. That is good though because it helps in the sleeping department.

Please pray for Noah this week, that he would not be anxious this first week of school with all the changes and new faces.

Thanks- love to all- Amy

Wednesday, August 15, 2007 8:43 AM CDT

I think one of the worst parts of this is that sometimes in the morning when I wake up, for the briefest moment I have forgotten that Jess is gone, and I am excited to see her wonderful morning smile and hair, and then it almost instantly hits me, and all is sadness again.

Jess was the happiest in the morning when she first woke up. She would giggle and hug us when we would go into her room to get her. Her hair often looked like it does in this picture- all sticking up- an indication of her sleep in the night. I just miss her so.

We are heading to the cities for Kylie's golf tourney this weekend, and can't wait to see the Gibbons and Olsons.

The stroll was a huge success and we can not thank Super C's mom, Abigail, for remembering our sweet Jess so beautifully. We love you Abigail and C.

I will try to update once a week or when there is news to report.

Thanks for loving our princess and us.

Amy

Monday, August 6, 2007 6:09 PM CDT

We received our letters from LifeSource last week. The recipient of Jess' kidneys is an 80 year old woman from Vermont who has been on dialysis for awhile. She is a widow with two daughters and grandkids. The recipient of Jess' heart is a 15 month old girl from Illinois who lives with her parents and a sister. She had been on the list since June of 2006 (since she was 3 months old) and was critical.

We will hear from Lifesource in a couple weeks as far as support and getting Jess on the donor list with her story.

The 1st annual Fargo Epilepsy stroll is Thursday. If you are able, please consider giving to the Epilepsy Foundation to help with research and parental support. We will not be walking this year as we feel it is just a little too soon emotionally for us.

Other than that, we are taking life one day at a time, and praying for continued understanding and peace in everyone's heart that knew our sweet Jess.

Love you all- Amy, Jason and Noah

Monday, July 23, 2007 11:21 PM CDT

The itsy bitsy spider
Climbed up the water spout

Down came the rain
And washed the spider out

Out came the sun
And dried up all the rain

And the itsy bitsy spider
Climbed up the spout again

I bet that the author of this children's song never could have imagined the impact it would have on our lives. It truly seems to be about life. We climb upward in life and are hoping, praying, and thanking God for the positives that come our way. Then the rain comes and we are washed out with devastation and sadness. (This would be where our familly is most of the time right now). Now we wait for the sun to come back out and dry up some of the rain that is our tears and then we will starting climbing back upward knowing that God's love will shine down on us and keep us safe and give us a bit of peace.

P.S. Pray for Caroline and her family- that the rain would stop and the sun would come out and shine down peace on their sweet girl.

Sunday, July 15, 2007 8:20 PM CDT

It is strange how the days go by now. Sometimes it seems like one day can take forever, and then I realized that on Wednesday we will already be at one month since Jess died. So many of you have called and left us wonderful messages and we can not thank you enough. It means the world to us. I am sorry we don't return the calls- it isn't that we don't want to talk to you, it is that we are trying to figure out how to navigate through life now, and just figuring that out can be exhausting.

I have also returned to work, and must say that I work with wonderful, loving people. I don't know how I would return if I didn't have them.

People say how are you doing, and most of the time, I don't know. It is hard to answer that question, because at times I feel ok and then I get overwhelmed in the next minute with my thoughts of Jess and I am a mess again. (Don't worry- I have a great counselor and good meds that are helping me out!)

Right now, we need to ask for you to say additional, extra special prayers for our friends the Vetters. Their daughter, Caroline, is currently back in the PICU at Meritcare in a drug-induced coma to give her brain a rest from being in a status state of seizing. As they slowly bring her out of the drug induced coma, they will watch her brain and if she is still seizing, they will bring her back down into the coma and try again a few days later. They will continue to do this until one of two things happens- her brain calms down enough or until her mom and dad have to decide which is worse- drug induced coma or uncontrolled seizing. Abigail and I work together at Innovis and Tyler and Jason work together at PRACS. Abigail coordinated the balloon and butterfly releases at Jess' funeral. It is almost too much to think about so soon after Jess' last status seizure. So please pray for Super C (Caroline) and her family. Her website is www.caringbridge.org/visit/carolineruby.

That is all for now- thanks for signing the guestbook and keeping us in your prayers and thoughts.

Love, Amy

Thursday, July 5, 2007 10:44 AM CDT

1258 days
Is all that we had
With you in our life
With me as your dad

Before your first seizure
240 days
Then 1018
In the post seizure haze

Just 41 months
3 birthdays
So many lives touched
In your short stay

You were so brave
So very strong
You filled our hearts
With your lifesong

Through it all
Hugs and kisses
As you taught us how
To bear what life gives us

We�ll miss you so much
Each and every day
Til we hold you again
At heavens gate

Love you much, Daddy

Wednesday, June 27, 2007 7:42 PM CDT

We can not say thank you enough to everyone who has and continues to give us their love and support each day. Noah returned to summer school on Monday, trying to get back into a routine of some kind. Jason may try to work a few hours tommorrow and Friday. I have not decided yet when I am returning to work. It is hard to realize that although our lives have come to a screeching halt it continues on as usual for most of the rest of the world. The challenge and frightening thing is to figure out what that means for us and how we navigate this life and world without our sweet angel. We miss her so much. We do know that we are not alone in this, and that all of you have made this more bearable. We also know that God is always with us, no matter what the day will bring.

I will update as I can.

Love to all- Amy

Wednesday, June 20, 2007 5:12 PM CDT

Last night at 10:45 Jess went down to surgery and the surgeons were able to recover her heart and kidneys for transplantation. At 1:15AM they brought her back to us to bathe and hold, and at 2:30 this morning we said goodbye to our sweet baby girl. The Lifesource coordinator told us that the recipient of her heart was the most critically ill of children- very, very sick. Please pray that the surgery went well, and that his child recovers and lives a happy, healthy life.

We are now home, and have completed her obituary which will run tommorrow in the Fargo Forum.

Services will be held as follows: Friday- visitation from 5-7PM, with 7PM prayer service. Saturday the funeral will be at 11AM. All of these services will be held at our church, Living Waters Lutheran in Fargo.

Thanks for loving our sweet angel girl
We miss her so much

Monday, June 18, 2007 11:36 PM CDT

******Update - It is about 7:15PM and we are waiting for Life Source to finalize the organ donation process. They have identified a recipient for her kidneys, have good possibilities for the lungs and liver and are working on finding the best match of the eleven children who are possibilities for receiving her heart. They are looking at about 10:00PM for her to go in to surgery. We will say goodbye to the beating of her heart at that time, but will be able to hold her after the surgery is over and she is free of all the extra tubes. We will also be utilizing the NILMDTS service to have some pictures taken with her.

At 9:39 this evening our beautiful angel Jess officially left her home with us on earth and is now with Jesus in heaven meeting her great grandmas Donna and Gladys and her great grandpas Iver and Ralph. She is playing with her friends Drew and McKenna and is free from all the seizures that limited her in her earthly body. She has been made whole again in Jesus and will live on in our hearts as we wait for the day when we meet again at Heavens gate.

We love you so much Jess and miss you already.

mommy and daddy and baba Noah

Monday, June 18, 2007 7:32 AM CDT

It is with great sadness, and broken hearts that we write this.

At approximately 9:35 PM last evening our beloved little girl got the first part of the diagnosis of being brain dead. The results will not be official until tonight when they repeat the test after 24 hours, but it is just a formality. She is resting comfortability and in no pain, but is relient on life support.

We have decided to have Jess be an organ donor in hopes of fulfilling the prayers for miracles of other parents who are suffering as we have for these last 2 years and 8 months. It takes some time to line up the surgeons and transportation as well as matching the organs to those in need, so it will probably be sometime on Tuesday that she is taken off of life support and can boldly go to Jesus as a hero and our beloved daughter.

We love you Jess. So very much.

J and A

Sunday, June 17, 2007 5:12 PM CDT

There is really no way to write this entry so I will just say it as it is and probably keep it short for lack of words.

Jess will not make it through this. Her brain is swelling and there is no treatment for this kind of swelling. As her brain cell are dying (because of the prolonged incidence on Friday morning), her brain will not be able to continue to sustain her vitals. Once this happens, she will remain on life support until we are ready. That is as much as I can write now, as it is too much to comprehend.

Amy

Sunday, June 17, 2007 10:47 AM CDT

We are down in MRI right now and waiting for Jess' scan to be completed. Overnight she did a few things that are concerning. First, her pupils were uneven and not responding to light, her vitals dropped and they suspect her brain has some swelling. They said this happens after an event like this. Her EEG pattern was and continues to be, very slow except for those moments when she is seizing- yes she began to do that again in the night too. So she is on dopamine to keep her vitals up and stable, and on ativan and valproic acid bolus to stop the seizing. We will see what the scan shows, and as far as the swelling goes, it depends on where and why as to what is done about this. So again, we wait and pray for miracles and answers.

Amy

Saturday, June 16, 2007 7:43 PM CDT

We spoke with Dr Ritter about an hour ago and the news is not good. Jess is almost completely off of the seizure medication but is not improving as quickly as she should be. Dr R said that some of the issues with her other organs are indicative of a lack of oxygen and if those organs that are more resistant have damage it is likely that there is also damage in her brain which is more sensitive to oxygen deprivation. At this point all we know is that she should be doing better than she is. They are going to leave her as she is to try and limit stress and see if she can heal and recover on her own. There is no way to predict what will happen. All we can do is wait and hope and pray.

jason and amy

Saturday, June 16, 2007 1:20 PM CDT

We arrived at about 12:30 last night and by the time everyone was settled it was 1:30 and we all needed to sleep. So here is what we know- Dr. Ritter was very concerned about if her sugar level yesterday morning was truly 9, does she have a new problem maintaining her sugar levels. She is again on a dextrose IV solution which is helping her maintain a stable level, but once she is more awake and stable, testing her ability to keep the sugar levels up will be one of her challenges. The other issues they are considering is whether she has pancreatitis because of some lab levels. This is a medication toxicity issue. Also her liver function tests results keep climbing and they are unsure as to what that means so further research is being done. The EEG showed that she is NOT seizing anymore, which is good, and due to the fact that she is so heavily medicated. The EEG looked good in that aspect to Ritter and he said that the burst suppression pattern that was seen in Fargo was due to all the meds, and not a result of prolonged low oxygen levels. So he stopped the Versad drip and is letting her wake up on her own, which will lead to getting her off the vent. It is really up to her and what she needs for recovery. We will be in the PICU until then and moved to the unit when she is stable and they have a better clue about the pancreatitis and liver issues. So it is still a bit vague, and yet we feel better about the plan forward here. We will try to update pictures, but can't guarantee anything as we forgot to bring a cord with for the camera. So we will see.

Thanks Shannon and Maria for being here when we arrived and taking such good care of us.

Thanks to everyone for praying for us and keeping Jess in your thoughts.

Love to all- Amy and Jason

Friday, June 15, 2007 8:06 PM CDT

NEW UPDATE: We are being life flighted again to Children's in St. Paul. Dr. Ritter wants her there because she has not stopped seizing and because her EEG was a bit more unusual than ever. I will explain more later. Right now she is getting a spinal tap to test for meningitis and then on a Versad drip, which means the vent will be breathing for her (because her resps will be too suppressed on her own), and then we will be heading out as soon as the crew is here. Pray for safe travel and answers to this mess. Amy

Friday, June 15, 2007 8:58 AM CDT

UPDATE AT 4:15PM: Jess is still on the vent and has seized two more times since I last updated and has been given more IV meds which has stopped the seizures. It is like she is content for a while and then her brain can't help itself. She is still running a fever around 101 and is on IV antibiotics, but not sure what is causing the temp. Her potassium is up and she was struggling to pee until they turned her and she proceeded to wet the bed a few times so that was a positive thing! They will be re-running labs at 6PM and we are currently waiting in the atrium because they are doing an EEG and for those of you familiar with this- it may sound strange- but they don't want us in the room until they are done- little do they know how many times we have seen her hooked up! Dr. Jones-Dees also talked to Ritter and got some orders and a plan in place for the moment and thank God he is on call all weekend too, so they will be communicating frequently I imagine. For now, we sit and wait- Thanks for praying and staying in touch. Love, Amy

MAJOR CHANGE AT THE BEECHER HOUSE- This morning at 4:45 I woke to hearing gurgling coming through the monitor in Jess room. I ran up and she was face down seizing in her bed, having turned quite blue, but still breathing. Her bed was soaked with sweat and saliva and to make a long story short, the ambulance arrived, intubated her,and we are now in room 407 at Innovis in ICU. She will stop seizing for awhile and then starts back up subtly. No call yet to the cities, as we haven't exhausted our IV meds here yet. She is on the ventilator and has an NG tube as well as IV which is holding out for now, but if it goes will have to have a central line placed. Her blood sugar was critically low, don't know if that was because of the seizure or caused the seizure, or what, but she is also getting dextrose to bring that up. Just when we thought things were relatively quiet at our house-

I will update you more when we know more- PRAYERS PLEASE!

Amy

Tuesday, June 12, 2007 10:27 PM CDT

No we have not fallen off the face of the earth- although it may have seemed like it!

It seems as though time slips away and before I know it, it has been almost a month and I haven't updated.

So here is what is happening in our world. Jess and Noah finished the regular school year and had two weeks off before heading back to summer school on Monday. That is a good thing for everyone involved, as I have been reminded how much attention each of them wants all day, every day! Noah had a rough start with anxiety on Monday but seemed to recover fairly quickly, we will see how the rest of the week goes. He is going to be starting swim lessons this week, and is also starting extra occupational therapy for relaxation and writing skills, with the same therapy group that Jess is involved with. On the other hand, Jess was very excited to get back to school, and couldn't get into her classroom fast enough. Can you say polar opposites- those kids of ours!

Seizure wise, we have seen an increase again over the past week or two, and Jess did have a sinus infection so at first I was thinking it was from that, but the increase has continued, so who knows. We go down next Wednesday and Thursday for a follow up visit and then will discuss what the next plan is. I don't know what will come of it all, maybe the VNS, maybe not. I guess I won't speculate and will just wait til we see Ritter.

So I promise I will update after our visit next week- hopefully not beforehand, as that usually means no good news.

Love to all- Amy

**We will try to update pics in the next few days!

Tuesday, May 22, 2007 1:41 PM CDT

Jess had a pretty good week last week. We had a great time at the TS walk and her face has healed very nicely. We spent the weekend trying to stay warm and seeing Shrek the third. Then on Monday, I got Jess to school and was handing her over to her para when she had a big head drop and began to cry. The rest of the morning proceeded to be filled with many seizures, more than the teacher had ever seen, and she spent a good chunk of the afternoon sleeping. The evening was a bit better, but she continues to wake up in the night because she has pooped and then we (mostly Jason) spends at least an hour getting her back to sleep. I don't know if her body doesn't relax enough during the day for her bowels to work properly and only when she sleeps do they kick in, or what, but what we would give for one night of no waking up. Today was better at school, but still filled with a number of seizures, and she is sleeping now as I write this.

We are still awaiting approval for our followup visit in June, and still have not decided on the VNS surgery. We will talk to Ritter and then decide. It was brought to my attention yesterday however that it is unlikely that ND MA would approve the surgery to be done at Children's because apparently there is a dr in Grand Forks who performs the surgery outpatient. Does that sound ridiculous or what- so much for continuity of care for patients who need it the most. We will work hard on getting the approval for Children's if we do decide to go ahead with the surgery.

So two days til school is out and then the kids have three weeks off before starting morning summer school. I think it will be good to keep them both in a sense of routine through the summer.

I will update more later- Amy

Wednesday, May 9, 2007 9:28 PM CDT

Just wanted to give a quick update. Jess did awesome last week at therapy. She consistently took 6-8 steps on her own and did a lot of talking during speech. Her OT gets the shaft on Fridays because she is the third session of the day, so we may have to switch to a new day for OT.

If you happen to see Jess in the next week or so, don't be shocked by her banged up face. She took a header over the curb in her wheelchair at school yesterday and is pretty scraped and a bit swollen in her lips- looks worse than it is, but still was enough to send us to urgent care just to be safe.

We are heading to the cities on Saturday morning for the TS walk and will get to see a few families we know, so that should be fun. Thanks to everyone who has donated to this cause. Also the first Stroll for Epilepsy in Fargo will be held on the 9th of August at 6PM at Lindenwood Park. If you would like to be a part of Jess' Journey teams, email us and let us know. So far we have two teams walking and would love to have to add more to that!

I'll update after the weekend- Love, Amy

Monday, April 30, 2007 6:05 PM CDT

Sorry for the lag in journal updates- it seems that once one thing settles another is stirred up and I lose track of time.

Jess has had good and bad seizure days lately. We are seeing less eye flutters but more of the head drops and jerks and they continue to be more severe. Last week at school her para said she had a few where she struggled to bring her head back up, so that is new. On her good days however we see just a couple of groups. She was approved for the VNS surgery and now it is up to us to set a date. We have decided that we will keep her appointment on the 21st of June and discuss it more with Dr. Ritter before setting a date. Otherwise, we are also debating trying Peganone. It is another anti-convulsant that is mostly used for partial and tonic clonic, but may help with the myoclonic jerks. The problem is that it takes 4-6 weeks to get to therapeutic, and is dosed 4 times a day, and they are fairly large pills to crush. So do we try or do we pass on this one while things are not good, but not too much worse either??

Noah is struggling with school and anxiety and we can't wait til the end of the year. I am more worried about him right now to be honest. This Asperger's diagnosis gives us some answers, but is also so frustrating because the symptoms are so hard on Noah emotionally and no one likes to see their child in pain. So please pray for him.

I will let you know when we have new info to report- thanks for checking in.

Love, Amy

Tuesday, April 10, 2007 8:31 PM CDT

So the weaning of the Diamox and Klonopin are complete and now we are awaiting the med schedule for Peganone to arrive in the mail. I believe this is the last med Jess will be trying before others are approved by the FDA. I heard from Dr. Ritter's office yesterday and they were getting Jess' chart ready for surgical conference today. I haven't heard anything but don't expect to for a few days. It sounded like Dr. Ritter wasn't too enthusiastic about the VNS being successful, but he was presenting her nonetheless, and going to get input from the rest of the team.

Seizure wise, Jess seems to be having fewer overall during the day, but the ones she is having are back to more of the head drop, body jerk variety, as opposed to the eye fluttering that had become the dominant type. No reason why just maybe the way her epilepsy works.

We have had a touch of a stomach virus here for the past few days, so I am looking forward to healthy bellies and back to school for the munchkins.

I will update when I hear from Ritter's office about surgery. Other than that, we just sit and wait for the June followup appointment.

Thanks for checking in with us- Amy

Tuesday, March 27, 2007 2:17 PM CDT

So I wish I had some great positive news to report today- I mean the sun is shining, the kids can play outside, spring is finally arriving. That means April is arriving and our superstition of bad things in the month are upon us. I don't if I have written about this, but November, February and April have been Jess' worst months over the last two and a half years since the seizures began. She has been hospitalized every one of these months. A few were for surgery, but most have been because of status seizures. So call it bad luck, silly superstition, but we get a little nervous at this time of year.

With that said, Jess has not had a good day seizure wise. She had some pretty intense, multiple head drops and jerks at school, and her para had to take her out of her chair to hold her. The seizures do not get better. Some days they are about the same, some days worse, and I have noticed that she seems more tired and sleepy afterwards, like she is post-icthal, as they call it. The fact the sleep escapes her much of the night does not help either.

However she does continue to amaze us with her kisses and loves and smiles. I don't think that I would be so resilient.

We are weaning Jess off the Klonopin still and off of the Diamox because it was doing nothing for her. These weans will be done by next Thursday, but in the meantime the thought is that her seizures will probably be more intense. Because although they did not help with the seizures, they can make them worse as you wean.

So please pray for uninterrupted night sleep and for less intense seizures. Keep praying for no seizures, but we will take any decrease we can.

Thanks for checking on us and for your thoughts in the guestbook!

Love to all, Amy

Monday, March 19, 2007 8:25 AM CDT

So I hate it when I just about finish a long entry and then hit the wrong button and it disappears, only to have me need to start over- ughhhhh!

Anyway- good morning to you all. We are hoping that the start of this week will bring better behaviors and improvement on Jess' part. Last week drug on forever, and seemed to be filled with challenges.

Jess is being weaned from klonopin and let me say that it could not be soon enough for me. She has lost some tone in her mouth and throat and has taken to choking on her food quite frequently- not an enjoyable experience for any of us. She is still not sleeping well at all and despite all of the sedative type drugs she is taking for her seizures or for sleep, she is still up what seems like half of the night. Jason mentioned the other day that he thinks that her body doesn't process this type of drugs correctly, because not only do they not seem to help in the sleep department, but when these type of drugs are given during a status seizure it takes many, many doses before she stops seizing, and at times the seizure is worse before it is better, despite the meds given.

I spoke with Vicky at Dr. Ritter's office last Thursday and asked point blank, what are we going to do from here. Dr. Ritter is out of town for awhile, and she said she was going to gather Jess' info and present it to Dr. Frost and Dr. Doescher, and see if fresh eyes had any other ideas. She did say that from what she has gathered from Jess' records there were a few options possible. First, we could go online to the Epilepsy Foundations of Canada, find the closest foundation, ask for a name of a good pediatric epileptologist there, and try to get in and see them, for them to prescribe clobetasol (the drug the FDA is still in the process of approving in the US). Second, we could put her on the surgical conference board to be scheduled for approval for the VNS surgery (which we decided to do). Third, there are two very rarely used meds that we can try in the mean time, Diamox and Pagadone (sp?) . These meds are not used often, because usually better control has been achieved and there is no need to try them. But for Jess we will try anything. So now we have stared Diamox, and will know by week's end if this going to help. If not, it is onto the other med.

So at this point, I am not sure what will lie ahead as far as options. Sometimes, I wonder if a second opinion should be sought, but these doctors are the best in the country in this field, and we do trust their judgement.

So we will watch the seizures (which by the way were worse again last week), watch the choking, watch for better behaviors (which are improving), and pray for some answer.

Sometimes, I wish they would just say this is how Jess' life will be, and then we could move on, planning and knowing that we can handle this. But they don't do that, and I wonder why when they don't seem to have options left.

Anyway, that is enough for now.

til I know more- Amy

Monday, March 12, 2007 8:31 AM CDT

So our weekend was filled with home improvement projects for Jason, while I hung out with the kids. Jess has had a lot more eye fluttering this weekend again and after talking to Vicky from Dr. Ritter's office, I think she has completed her honeymoon phase with Klonopin. Her aggressiveness and irritability has gotten worse too, after the addition of the morning dose of Klonopin, so I wil be calling Dr. Ritter's office again today- Shannon you were right the Klonopin has to go!

As I write this Jess is swimming in the tub. It is so fun to watch her in the water, because she thoroughly enjoys herself. It makes it hard to stay mad at her for being up so long in the night and for hitting and pinching us so much. She certainly knows "No, No" and has taken to telling it to us about as often as we tell it to her.

I will let you know what I hear from Dr. Ritter about the Klonopin. I suppose this means a hold will be put on working off of the Keppra, as we can only do one med at a time!

Thanks for checking on us-

Love, Amy

THANK GOD FOR HIS BLESSINGS UPON CAROLINE AND HER FAMILY! SHE IS AWAKE AND TALKING MUCH MORE! Check it out at:

www.caringbridge.org/visit/carolineruby

Wednesday, March 7, 2007 7:55 AM CST

****
I want to take a moment to talk politics with you all. The Minnesota House of Representatives introduced House Bill 1574 yesterday requiring Pharmacists to obtain written apporval from both Physician and Patient prior to filling a prescription for a generic equivalent of a brand name anti-epileptic drug. As an employee of a Clinical Research Organization that specializes in clinical tests comparing generics to their brand name equivalent (Pracs Research Institute, LTD) I know that the FDA requires that generic drugs to pass the same criteria as their brand name counterpart. There is no scientific evidence to show that this added approval is necessary. The Brand Name pharmaceutical companies are trying to take advantage of the fear of epilepsy to make it more difficult for consumers to obtain the less expensive generic equivalents of the drugs.

As parents of children diagnosed with epilepsy we spend our days buried in a sea of paperwork for either the hospitals, insurance companies or medicaid. Some of it is necessary, most of it is bureaucracy. We do not need additional unnecessary forms. It will not increase safety as the generics and brand names are required to meet the same standards in order to gain FDA approval. Those of us who work with the exteremely busy and hard to contact Epileptologists realize that getting the Physician consent will be difficult and time consuming. It will mean that in a rush we would have to get the brand name and then having to fight the insurance sompany and medicaid to cover it. (More paperwork) This is exactly what the pharmaceutical companies are hoping for, more money.

Please contact your Minnesota Representative by clicking on the link below and entering your address and ask them to vote against this bill.

http://geo.commissions.leg.state.mn.us/districts/start.html

Jason

It is nice to say that Jess is finally feeling better, cold wise. It always takes her awhile, but when she is over it, she is much happier. Now our problem is that we are seeing an increase in her eye fluttering and jerking again. I guess we should be ready for that, because she has passed her "honeymoon" phase with the klonopin, and is building tolerance to it. I talked to Dr. Ritter's office yesterday and Vicky is having us give her a dose of klonopin in the am also, to see if it helps with the seizures. If it does, then we start getting rid of the Keppra in a week. If there is no difference in seizures or she becomes more irritable then we have to look at getting rid of the klonopin.

So now we wait. I did ask about MRI followup. I remembered that the last MRI following her second surgery showed "gliosis" which is simply put a buildup of some scar tissue due to repititve seizure activity. It was in the back of her brain, and it seems that balance and coordination can be found there. I was inquiring as to whether that could be why some of her balance issues persist. Vicky said that she would look into it, but that it could be that the balance issues are related to the many meds she is on. So she will get back to me on that one. We did get a June 21st appointment with Ritter and if something gets worse, then we will see him sooner.

So that is the news from here- til next time- Amy

Prayer requests: Caroline, Zoey

Thursday, March 1, 2007 11:32 PM CST

Please keep the Bemis family in your prayers tonight and throughout the next days ahead. Josie is one of the 7940 moms who was a key to getting our weekend getaway together. She is simply put one incredible woman and mommy. Her daughter, Zoey, had a hemispherectomy over a year ago, and has been having some problems with vomitting. They discovered Wednesday, she has extra fluid on her brain and she will be having a shunt placed at 2pm on Friday. This is an unxexpected surgery and is definetly a scary time for this family and I know that we can all help bear their worries by saying an extra prayer for them. Visit www.caringbridge.org/visit/zoeybemis.

Please continue to keep Caroline in your prayers as well, as she is continuing to struggle with seizures and other possible infections. She remains in the PICU at Meritcare and is hoping to be transferred to Mayo as soon as the weather allows.

God must have known how important it was for all of us to be together last weekend, to draw strength and love from one another to face our daily uncertainities and struggles.

Love to all. Amy

Monday, February 26, 2007 4:56 PM CST

WOW did we have a super weekend! I could not have asked for a better weekend with friends! You girls rock! I guess I didn't realize how much a few days away could help restore my strength and bring peace to my life. THANKS SO MUCH TO EACH OF YOU! If you check Kylie's or Drew and McKenna's site you will see a picture of the crew.

Jess is much better this week as far as energy, coughing, and overall health goes. Thank you God. We are still seeing the seizures of course (like we ever thought they would go away!) but she is much more herself and that is a beautiful thing.

Please pray for Ariana's mom and dad. Ariana died on Friday at the age of 6. She is a beautiful angel in heaven now, but many on earth grieve the loss of their angel on earth.

I feel like I don't say it often enough- our family would not make it without the support of all of you. Sometimes I go back and reread what you have written in the past, and I am uplifted! Thanks so much- your love is priceless to us!

Love, Amy and the gang

Thursday, February 22, 2007 11:31 PM CST

UPDATE FRIDAY 1:30 PM PLEASE PRAY FOR THE KASEMAN FAMILY- Their sweet Ariana died this morning at Innovis. She was a beautiful little girl, and I can not imagine their grief.

Jess had a much better day today. She still way to many seizures at school, but fewer than yesterday. She is still pretty tired and napping alot, but her cough is almost gone, and she is playing more. Dr. Ritter's office said to watch her over the weekend, and that they suspect she will continue to improve and that this is all related to the RSV. She said that with all the junk going around it can be pretty hard on "fragile" kids. I guess that term was new to me, and although I know it is true, it still is not a term I like for my Jess.

I am heading to Alexandria for the weekend, for a getaway with the 7940 (epilepsy unit at Children's) moms. I am so excited because I love these women. I don't know all of them yet, and yet I feel like we are sisters through the struggles of our children. Please pray for good weather and safe travel for all of us. Please also say special prayers for Caroline as she is not having the greatest of days again (www.caringbridge.org/visit/carolineruby). Her mom, Abigail, is a a 7940 mom and is planning to come to the getaway, but it is hour by hour for Caroline, and Abigail may not be able to get away as planned.

I will update when I return from the relaxing getaway- Love, Amy

Wednesday, February 21, 2007 12:23 AM CST

So the past two days have not been good. Something is definetly going on in our Jess' brain. She still coughs on occasion but has not had a fever since Saturday. She is so out of it. When she is awake her eyes are very heavy and she is staring alot. She also had a terrible day of head drops at school today. She is not getting back to herself, and I am not sure what is going on. She is also having a lot of eye fluttering. She is sleeping at night, but waking at least 3 times before going back to sleep. Thank God Jason is able to sleep comfortably in her room- he is an awesome dad and husband!

So I have talked with Dr. Tillisch (her pediatrician) and she said that RSV can really set a kid back, but that she wanted to refer to Dr. Ritter for his thoughts. I also left a message for him and asked about possible drug level issues. I don't know what it is, but something needs to be figured out because she really is not herself. No spunk or attitude whatsoever.

So when I hear or know something I will update.

Amy

Sunday, February 18, 2007 9:50 AM CST

UPDATE AT 3:00PM: We are home- yea! We got home about 12:30 and have been resting. Jess is still coughing quite abit and breathing fast but these are things we can handle at home. Her temp is 99.3- higher than all day but we will keep a close eye on it and call them back if it gets high. I will update more once we have settled back into the norm of things. Thanks again for your prayers and support- Amy

Just wanted to leave a quick note this morning before church. Noah and I snuck away to go to Sunday school and church and Jason is with Jess. If all is still well this morning, hopefully she will be discharged today. She hasn't had a fever since yesterday noon, and her pooping is still there but not with every diaper change. She is perky when awake and eating better. Still got to work on the drinking though. She is still coughing hard and gets tired easily, but these are things we can manage at home. It's just the fevers that scare us so, and now that they seem to be gone, hopefully the next journal entry will be from our own computer. Thanks for all you notes and for your prayers- Amy

Saturday, February 17, 2007 12:52 AM CST

Sorry it took so long to update. We are still on 5th floor at Innovis. Jess is still in isolation because of the RSV and is getting neb treatments every 4 hours. It is hard to tell if they are doing much because overall she doesn't sound bad in her lungs. She is breathing faster than normal and Dr. Clutter said that is an indication of struggling with the RSV. She is still sleeping alot and pooping way too much! Her rotovirus came back negative which is good, but we don't know what the diarhea is all about. She is starting to get her appetite back, but still needs to work on drinking more. We aren't sure about how her fevers would be if we let them go, because we have been giving her the tylenol/motrin every 3 hours. Overall, Dr. Clutter said the diarhea is what is keeping her here now, because it is more than she is taking in. She is still coughing alot too. The neb treatments make her quite shaky afterwards as well. So we will be here til tommorrow, and if the diarhea slows, then hopefully we will go home. We shall see.

Please continue to pray for Caroline who remains in the PICU at Meritcare. There continues to be more complications for her and they are unsure what the outcome of all this will be. Her website is www.caringbridge.org/visit/carolineruby.

Til there is new news- Amy

Friday, February 16, 2007 8:55 AM CST

UPDATE: 1:00PM
Jess got moved up to room 516 on the med/surg floor. They have created their own new peds wing here as it seems that are a number of kids with respiratory issues today. Dr. Jones-Dees came in and said she suspects that the x-ray will show that it isn't truely pneumonia, but something related to the RSV which would be a good thing. She sounds pretty good when they listen to her, but every once in a awhile drops her sats into the low 80s. She is very tired and has slept all day and hasn't eaten much. It seems that the rotovirus is also going around and she does have diarrhea, so let's pray that we don't add that to the mix. Will update more later.

Ok so here is the deal- Jess was admitted last night to Innovis after a high fever and a tonic clonic seizure, and a road trip in the ambulance again. She came back RSV positive and is now in isolation in the CEU as the Peds floor has no beds. No word on how long she will stay, I suppose it will depend on the fevers and the nasty cough. She is getting neb treatments and is very lethargic. It also looks like she might have pneumonia in her right lung. I am home taking a quick shower and heading back in. Will update when we have talked to our doctor. Amy

Tuesday, February 13, 2007 1:00 PM CST

So at what point do you suppose your body can not handle so little sleep without just falling apart. Jess has not slept through the night in weeks, and instead of it getting better with the increase in klonopin, it seems to be worse. Now we must also consider that she is still working on her last back right molar, and she has developed a nasty cough and beginnings of a cold. Last night Jason slept with Jess and woke up to her burning up with a fever. It was 102 and she was jerking hard in her sleep- needless to say we both slept with her for the rest of the night- or rather laid there watching her- to make sure she did not go into a big seizure. This is what normally happens when she has a fever. Jason got tylenol into her, and we have been giving her tylenol/motrin every 3 hours. But the funny thing is, you would think she would be exhausted, and want to cudddle and sleep today- no such luck. She has been up since 6:30 and refuses to go back to sleep. I don't get it- it makes no sense- but what ever does with this stupid disease?

Hopefully she will get over this cold with no more fever spikes, and we will be having a quiet rest of the week..

Please continue to pray for Caroline and for our friend Kylie and her family as they are waiting to hear about possible brain surgery for Miss Kylie.

Love to all- Amy

Thursday, February 8, 2007 5:32 PM CST

Greetings from the completely frozen tundra that we call home- wow is it cold! Jess had a great week at school- one day with many seizures and the others were about normal. She is still struggling to sleep through the night and that is hard more on Jason than me because he tends to be the one to get up with her.

Great news- Noah is doing good in school! He even came up with 7 journal sentences all by himself today- this is normally his toughest part of the day!

Jess saw an orthopedist this week and he wrote a prescription for her to be fitted/molded for AFOs/SMOs (leg braces). She apparently hyperextends her knees when standing and she doesn't have much strength in her ankles and heels. So Monday we go in to have her feet and legs cast for the braces. Yet another adventure!

I just want to share with you how amazed I have been at the strength of our friends the Vetters. They have been through an incredibly terrifying struggle with Caroline's complications and subsequent hospitalization in the PICU, and yet they are so strong in their faith and love. I know I have an incredible respect for them and ask that all of you continue to pray for Caroline and the family, and visit her website at www.caringbridge.org/visit/carolineruby.

Until I know something new- Thanks and we love you! Amy

Friday, February 2, 2007 11:45 PM CST

OK - HERE IS WHAT WE NEED FROM ANYONE WHO READS THIS PAGE TODAY- PRAYERS FOR CAROLINE RUBY- SHE IS IN THE PICU FIGHTING INFECTION, A COLLAPSED LUNG, FLUID IN HER LUNGS AND OTHER UNKNOWN FRIGHTENING CONDITIONS. Her mom, dad, brothers and sister need our prayers too. Jason and Tyler (Caroline's dad) work together at PRACS. Visit her page at:
www.caringbridge.org/visit/carolineruby

Monday, January 29, 2007 3:43 PM CST

Well it seems that Jess has beat the fever and diarhea and is now getting back on track. She went back to school today and loved it. She is working on a molar and Dr. Tillisch wonders if that could be giving her trouble. She is quite irritable and I am not sure why that is- it doesn't seem to be any better. Maybe I will call Dr. Ritter's office and find out if they have any thoughts. Seizure wise she did well while she was sick (go figure) and now that she is better we are seeing more of the jerks and flutters again.

When I have anymore new news to share, I will update again. And to Miss Kylie and her family- We love you very much and pray for you to get stronger again. Please keep praying for her!

Love, The Beechers

Monday, January 22, 2007 12:01 AM CST

Here is our latest news- Jess has been sick all weekend with a bug. She has had diarhea, low grade fever, and has been completely lethargic. I thought the diarhea was a med related thing when it started on Tuesday, but it didn't get better, and actually got worse, so we assume it is a stomach bug. I took her in yesterday to urgent care, and they ran blood and said she was slightly dehydrated and to keep pushing fluids. She finally peed good last night and that was a relief because it had been a long time. Now she is just very lethargic, sleeping most of the day and wanting to be held the rest of the day. So we will see what the next day or so brings, and I may have to be calling Dr. Tillisch again for her opinion.

Please keep Miss Kylie in your prayers, as she continues to be hospitalized and can not stop seizing.

Thanks- Love, Amy and the gang

Thursday, January 18, 2007 8:39 AM CST

Good Morning! Our appointment in St. Paul was not exactly positive, but not real negative either. Before Dr. Ritter came in, Vicky the nurse clinician was telling us that she has studied Jess' chart over and over, looking for an answer to her lack of seizure control and just can not figure it out. Then Dr Ritter came in and look over her chart and checked Jess out, and said pretty much the same thing. Our daughter's brain seems to be a mystery to many!

We are at max levels for Depakote and Keppra, and Dr. Ritter was concerned with some of Jess' lab levels that may indicate a sensitivity to Topamax and we have tried all the current available meds, so what to do was the question. We had labs drawn, and her levels for Bicarb came back normal this time, which was a relief because that means her Topamax doses can stay the same. If it was lower than normal, we would have to drop her doses down, and when we have tried that in the past, Jess' big seizures have been much more frequent. So it was a relief to find out that at this point, we don't need to change the Topamax doses. We can't do anything with the Depakote, and Dr. Ritter isn't convinced still if the Keppra does anything. Jess still doesn't sleep through the night, so Dr. Ritter decided to add Klonopin at night for sleep. It has the potential to help with the seizures also, but when she was on it before, she was more irritable. We are trying it again because it is hard to say why she was so irritable the last time she was on it. If the klonopin helps her sleep and she is the same or better seizure wise in two weeks, we will try to wean her from the Keppra. Even though we don't think it is doing much for her, it could still cause an increase in seizure activity while weaning off of it. So there is the dilemma, because we don't want her to be on a med that doesn't do anything, and yet the weaning process could mean more seizures for awhile.

On that note, she has had two days of many jerks and eye flutters, and she has been much more tired. I don't if that is seizure related or if she isn't feeling quite right overall. We will see what happens.

The only lab level that was a bit concerning was that her BUN level was elevated. This is a kidney function test. Vicky was going to look into it further and see if it was something to be concerned about or not. Jess has been so thirsty for the past month, and she has peed less, so we will see if any of this is related. Hopefully all a coincidence!

Noah has also added a new med for mood stablilizing. It is called Risperdal and it helps him to be able to think more clearly ( or at least it is supposed to) It seems to be helping, but we will see what the first few weeks brings. Dr. Willert, his psychologist and Dr. Tillisch believe he has Asperger's syndrome on a lower level, meaning he has many characterisitics of the disease, but not as severe as could be. We are still trying to learn more about this syndrome and what it means for Noah, but so far it helps us understand some of his anxieties and oddities. He is such a trooper and I can't say how proud of him we are for trying new things and working with Dr. Willert.

Well, on a final note special prayers are needed please for our friends Kylie Jo and Caroline Ruby. They are both struggling with seizure activity again, and med side effects. They are such precious children and once again it is not fair that our children have to suffer so.

Visit their sites at:
www.caringbridge.org/mn/kylie
www.caringbridge.org/visit/carolineruby

I will update when I know more- Thank you for giving us your support and love. We appreciate it so much!

Love, Amy

Sunday, January 14, 2007 3:00 PM CST

We all survived Jess' first week of school! She loved it and so did I! She did great and although the first day the teachers saw a lot of jerking seizures, the rest of the week wasn't as bad. We had therapy on Friday and that went well also, with Jess doing some good work for her therapists.

The only downside to school, is that it seems Jess developed pink eye and a green nose again over the weekend. Who can truly tell where we get cold and flu bugs, but our Jess seems to pick them up quicker than most.

So we are hanging low today and resting. She just woke up from a 2 1/2 hour nap (pretty much unheard of for her), and is swallowing pretty hard too.

We have no school tommorrow and then on Tuesday we head to Dr. Ritter's for an appointment. Let's pray that there are some other options for us, as it seems we are close to running out them.

So I will update once we are back from the cities. Until then- Amy

Monday, January 8, 2007 10:15 PM CST

CHECK OUT OUR NEW PICS!

Hello everyone- well it was a big day in our house! Jess is now a big 3 year old preschooler! She enjoyed her first day at the school and was very tired when we picked her up! So she took a big long nap after lunch! The only down thing about her day was that her teacher saw many, many jerking seizures (more than she had ever seen). I imagine that with the extra stimulation and busyness and then the focused activities at school could all be reasons. She has still been having increased jerking and fluttering seizures, though, even before today, so I don't know what the next step will be. Dr. Ritter doesn't want to increase her Depakote because her levels are close to the high end. We could increase her Topamax and maybe we will end up doing that- I think I will be calling back to their office tommorrow for some advice on what to do next.

I enjoyed my two and a half hours of quiet- I didn't turn anything on- I just read in the peace and quiet of the living room- it was a beautiful thing!

Noah was very excited to hear about Jess' big day today and was eager to look at her library book and book order forms!

Jess did have a good birthday too and we enjoyed our weekend with Jason's brother and family! Who knew Guitar Hero could be so much fun for adults!!

Well- I will update in a few days as we learn more from Dr. Ritter and preschool!

Love, The Beechers

Tuesday, January 2, 2007 11:31 PM CST

I know- everyone who checks up on Jess' page daily or weekly is wondering if it was ever going to be updated- Sorry!

So there is not much new to report here. Jess has been battling the cold bug for over a month now, and I took her in today and everything looks fine as far as ears, sinuses, etc. So who knows.

She is still very irritable and likes to pinch, hit, pull hair and glasses etc. It has actually been worse over the past week or so, and she hasn't slept through the night for about 3 weeks. She is also having a rough patch of jerking seizures (since Thursday) and we don't know what the deal is. Her lab levels were drawn today and she goes to see Dr. Ritter on the 16th. For now we will wait to see what the levels say, and then go from there. I just hope the jerking and fluttering doesn't get any worse because it is like she senses them coming a bit more, and is so much angrier. The doctors think the aggression is coming from increased seizure activity and it is her way of showing frustration and pain. So we will see what happens.

She starts preschool at the West Fargo ECSE program on Monday after her big third birthday on Sunday so that should be fun! I will post an update after that first day, and hopefullly won't need to report anything new before then.

Maybe we can even post some new pics soon- we'll try!

Happy New Year to you all!
Love, the Beechers

Tuesday, December 5, 2006 1:56 PM CST

Hello everyone- all is ok here- we are trying to get to used the cold of winter and all of the bundling up that it entails.

Jess is once again fighting a nasty green nose and cold, and we hope it is over quickly! We are seeing some days with a few less seizures and some days that are still pretty seizure filled. We are also trying to figure out her aggressivness. She seems to enjoy hitting, pinching, biting and pulling off our glasses and doesn't even understand when she is told no.

Her lab levels came back and her Valproic Acid was high at 149.6. We are waiting to hear back from Dr Ritter as to what the plan is. She has also struggled with being unsteady and at times shaky, so I imagine the VA will have to be decreased, which stinks, because that can't mean anything positive seizure wise.

Well, we got some exciting news over the Thanksgiving holiday. My brother, Justin, and his wonderful girlfriend, Ashley got engaged and we couldn't be more excited for them. And Jason's sister and husband, welcomed a new addition to their family when they got to bring home their new son, Cole.

So we are thankful this holiday season, and continue to pray for answers to the many questions in our lives.

Thanks for loving us and praying for us-
Amy, Jason, Noah and Jess

Monday, November 20, 2006 4:07 PM CST

We are trying to get back to our normal here at home. Jess has started back to her therapy sessions and did well today. We are still seeing the jerking seizures, some days worse than others. Yesterday was good, today not so much. We will be returning to see Dr. Ritter on January 16th for a recheck. We will have lab levels drawn at the end of next week. I work Thanksgiving day and we are planning to go to the Jensrud family reunion this weekend.

Have a wonderful and peaceful Thanksgiving!

We are so thankful for all of you and for our children.
The Beechers

Thursday, November 16, 2006 4:51 PM CST

We are home at last! We got home about 5:00PM last night, and had supper with family before getting everyone settled and to sleep. Of course Jess slept with us, but we all slept relatively well. We usually let her sleep with us for a night or two after a hospital stay like this one.

Today has brought just alot of getting things at home back in order, and trying to get back to some sense of normalcy.

Jess has been pretty good today. I have seen a number of eye fluttering and jerks, but once again that is her normal.

Dr. Doescher has increased her meds and wants us to get lab levels in two weeks, and then Dr. Ritter will decide the next step.

The frustrating part of this past event, is that we are not sure what brought it on. It could have been teething or a head cold, but no one can say for sure, as she has had these things occuring before with out going into status. So as always, we just pray and watch for anything out of the ordinary.

I will try to update once a week, unless something changes.

THANKS AGAIN TO EVERYONE WHO HAS MADE THIS DIFFICULT TIME MORE MANAGEABLE FOR US. We love you all so much and can not tell you what your support means to us.

Love, The Beechers

Wednesday, November 15, 2006 9:51 AM CST

WE ARE HEADING HOME TODAY! Jess had a good night and aside from a fever yesterday afternoon that has since resolved, we are in good shape health wise. Now let me tell you that dealing with ND Medical Assistance is another story. They have denied covering the transfer and hospital stay here, and have yet to give the nurse here a reason. Once there is a reason, then Mary (the nurse here) will work on the appeal. It is all so frustrating because they do this every time we come here in an emergent situation. I think they try to make it as difficult as possible so that families give up. But we won't do that.

So Jess just finished getting her wires off, and having her first bath in 6 days, so she is set to go. We are now waiting for discharge instructions and then we are on our way home.

I will probably update this evening or tommorrow morning.

Thanks for your support and prayers- have a good week.
Amy

Tuesday, November 14, 2006 1:15 PM CST

So here is the latest info after speaking with the doctor this morning. Jess had a good night of sleep. She had a strange sort of shaking type episode that we were unsure of, but Dr. Doescher said it was a regular sleeping myoclonus, not seizure which is good. We are seeing a few jerking seizures today and expect that those will probably increase as the day goes on. She is still a little unsteady and aggressive, but much better today than yesterday and she is actually smiling and overall in a much better mood. We are working on some med changes still, and the next changes will occur on the 16th. Dr. Doescher said he is pleased with how well she is doing, and if the day and night go well, and we get some more recordings of her myclonic seizures then we can go home tommorrow! I asked him about why he thought she had the status seizure, and he said it is hard to tell. Some people with epilepsy have a type of cycle their seizures go through and that could be it, or her teething could play a role or there could be no explanation. So anyway, he said she will stay hooked up to the EEG til tommorrow and then we will make a decision about home. If she continues to improve and return to her normal, we can go home. If something changes or we feel like it is too soon we will stay. It will depend on Jess. I am comfortable with this because I don't feel like we are being pushed to leave to soon, and yet I feel like the dr. is confident in us to take her home if she is better. Does this make sense?

So for now, we wait another day and make the decision in the morning.

I will update with changes later, or in the morning when I know if we are coming home or not.

Love, Amy

Monday, November 13, 2006 3:37 PM CST

So the news here is this. We saw Dr. Doser this morning and discussed the plan of action. He has taken her off the dilantin and that can take 24-36 hours to get completely out of her system. The unsteadiness, tremor, aggressiveness are all side effects of all of the benzodiazepines she was given during her status seizure, plus the doses of dilantin she has received since we got here. So hopefully by tommorrow am to early afternoon she will be back to her normal for now. Dr. Doser also wants to increase the topamax and get rid of the lamictal. He is thinking they might increase the depakene (valproic acid) too, but is going to get some lab levels drawn in the AM to see where she is at. He also wants to keep her hooked up to the EEG wires until we think she is back to what we would normally see in a day. She is not jerking like usual, and until we get back to that state of normal, she will be hooked up. We did think we saw two jerks today, but are not sure if they were actual seizures or just related to all of the drugs she has been given.

Jason and my dad left a bit ago and Justin got here around 1PM, so that was nice. My mom will come down tommorow to stay with us and Justin will go back to Fargo because of work. John and Mona stopped today to visit and that was a treat, as well as having Maria and Kylie bring us lunch. Jess just lit up and smiled when she got to see Kylie. Hopefully later tonight Jason will get to post some new pictures.

So for now, we watch and wait. I will let you know more in the morning. Thanks again for checking up on us, and for being such great sources of support. We love and appreciate all of you. Amy

Monday, November 13, 2006 8:12 AM CST

Good morning- the night went relatively well. Jess went to sleep about 8:00 and woke up at 11:00 ready to fight. The dilantin they have her on makes her mean. She hits, bites, pinches and just is all around not herself. So it took about an hour and a half to get her back to sleep and then she pretty much slept until 7:30 this morning. We held the dilantin this morning until we can talk to the dr. and find out the plan and if she still needs it. She is still quite wobbly and uncoordinated, but that will just take time. So we will update once we talk to the doctor. Amy

Sunday, November 12, 2006 10:06 AM CST

UPDATE: 1:45PM We just arrived on 7940 and are in room 7943- the only private room on the unit. I guess we lucked out! Jess is doing ok but is very restless and seems to have some uncontrolled movements of her body. Not seizures but more like involuntary muscle movements, so we will be asking about those. They also have her on Dilantin in addition to her regular seizure meds, so this could be part of the issue. So we will update later tonight, once we are settled more. Thanks for your prayers and love. Amy

A much better morning for Jess. She was awake during the night for about 3 hours. She wsa prety agitated but also showing signs of getting better and being a little more normal. This morning she woke up and was famished. She shared our breakfast with us and we couldn't get it in fast enough.

She is now off the IV, the feeding tube and most of the monitors. Only the EEG and the pulse ox monitor left. Based on how she is doing, they think we will be able to tranfer up to the epilepsy floor sometime today. We haven't seen the neurologist yet today, but with all the medicine in her she isn't doing much so we are really just waiting until tomorrow when we will see Dr. Ritter.

Thats pretty much it for now.

The Beechers

p.s. some new pictures

Saturday, November 11, 2006 5:11 PM CST

Jess is now off the versed, but still sleeping. She was up a little bit earlier in the afternoon, but wore herself out. She also blew her IV, so they are currently giving her liquids through a feeding tube. Her EEG still looks good which is to be expected with all that medicine still in her. We are still waiting on the neurologist, but the plan is to see how it goes with just her regular medications.

More Later,

The Beechers

Saturday, November 11, 2006 8:35 AM CST

Well the last 24 hours have not been good. Jess started to seize yesterday at 3:10PM and continued to seize off and on until 8:30. She had multiple doses of atavan and versed IM and then phenobarb through the IV. We started out at the Innovis ER but were transferred down to childrens during the night. She is currently on a versed IV drip that is keeping her asleep and seizure free. They also started an EEG last night and as expected haven't seen anything. We haven't seen any doctors yet today but when we got here last night they said that the plan would be to slowly ween her off the versed and see what happens. We will try to update as we learn more and have time.

The Beechers

Wednesday, November 8, 2006 5:58 PM CST

Hello to all- We are doing ok here, battling yet another round of colds, but handling it pretty good. Noah is much better, and we have decided that the temp issue that day was a fluke and we aren't going to worry about it.

Jess on the other hand, has decided that she doesn't need to sleep through the night again. It has been about 2 weeks now, and I decided to call Dr. Ritter's office, and Vicky said that they believe it is related to the Zarontin. She has been hitting, pinching and biting a bit more, and we were unsure if that was teeth, being 2 years old, or the medication. Dr. Ritter suspects it is Zarontin related, and said that it will only get worse as we increase the Zarontin, soooo.. we are now done with the Zarontin- another med that does not work for our Jess. We are still weaning her off the Lamictal too, and we may work her off the Keppra after that. As for what to do next, that is the part that scares me a bit. There are no more new meds to try at this point, until after the first of the year when there will be 2 more that are FDA approved. The vagal nerve stimulator is an option and Vicky was going to visit with Dr. Ritter again about it. At this point we will try anything because what else will we do?

The kids got their flu shots today so pray for no reactions, and that this cold of Jess' gets better.

I just want to once again thank everyone who checks up on us. I know that many of you check daily and I apologize for not updating that often, but I do want you to know that we appreciate all of your support and love, and we could not go through this journey with our Jess without your support.

thanks and until next time- Amy and the gang

Tuesday, October 31, 2006 1:36 PM CST

HAPPY HALLOWEEN TO EVERYONE! We have begun the Lamictal wean and the increasing of Zarontin. Jess did great today in PT- more walking with assistance than we have seen in awhile. Her molars are still coming through and they seem to give her trouble some of the time. Her case is being brought before the state for MA lifetime eligibility today, so hopefully that will be good news. We had her preschool meeting on Friday and it was interesting to have most of the people who have worked with her in one room to discuss her disease, needs and strengths, and to realize the assistance she does need. We are in the process of getting the wheelchair we have for her approved for adjustments, and then she will be set for preschool. We are still seeing some jerks and drops each day, but a bit better than the past few weeks when she has not felt well. We will be returning to the cities in January for followup and possibly a 24 hr EEG, depending on how the next month goes. After Zarontin, I am not sure what the plan will be.

We had an interesting Saturday with Noah. Jason called me at work to tell me he had a hard time waking Noah up, that Noah was struggling to stay awake, and that he was sweating profusely. He also couldn't get Noah's temp to register on the ear thermometer (he was too cold). So Jason brought him in to the ER, and when they took his ear temp it was 90.6. Rectal temp read 92.5 so they ran blood and wrapped him in warm blankets. All the blood work came back ok- his white blood count was elevated and his blood sugar was low, but he hadn't eaten since the previous evening. So once he ate, the blood sugar came up. But that left the er doc and us wondering what in the world was going on. The pediatrician on call came to see him, and said that he didn't look like he had any sign of infection, and that he seemed to be perking up as the morning wore on. He suggested one of two things happened. He somehow broke the sweat in the night and that cooled him down because Noah doesn't sleep with covers or a shirt- in other words, a fluke. The other possibility the pediatrician said was- get this- he could have had a grand mal seizure. No your eyes aren't deceiving you- that is what I said. If he seized in his sleep, he could have broke a sweat, dropped his temp, and been very lethargic and pale. His white blood count would be slightly elevated and the fact that he perked up was also possible. BUT- the pediatrician was skeptical of this option too because he didn't have any physical signs of a seizure (bitten lip, bruise from a bumped head, extra messed up bed, etc). So we are confused and going with option A that everything was a fluke. His regular pediatrician, Dr. Tillisch, did say that she would order an EEG if we wanted, just to ease our minds. We have decided not to do this and spare Noah the stress of this. If something happens again, then we will re-evaluate.

So- what a weekend for us- of course I over analyze things to death, and Jason is the rational one in all of this- thank goodness for that. But we ask for prayers for both kids- for simple health and peace.

Thanks and until next time- Love, Amy

Tuesday, October 24, 2006 12:45 AM CDT

Again it has been awhile since I have updated. Jess is now fighting the teething monster. She is working on her two year molars and whenever she teethes it is tough on her. She is biting, hitting, drooling, and has had a lovely green nose. It also seems that pain is an issue with making her seize more. She has had a lot of jerking lately and it just makes her so mad and clingy. I am waiting to here back from Dr. Ritter's office about med changes. She is going to be weaned off the Lamictal and started on Zarontin. We have her preschool special ed meeting on Friday and she will begin in January at the West Fargo special ed preschool. We are also waiting to hear about her eligibility for Medical Assistance. She is re-evaluated at 3 for her lifetime eligibility for MA. Basically they decide whether her seizure disorder will be affecting her ability to be self sufficient for her life. All of this at age 3- boy do we need some changes to our social services and government assistance programs- but that is a discussion for another day.

I will let you know if we have any changes - thanks for checking up on us. Love to all- Amy and the gang

Saturday, October 7, 2006 1:01 PM CDT

Good morning to everyone- I say morning because our night lasted until 4:30AM.

Jess woke up with a fever yesterday afternoon. I took her into the pediatrician and we came home with some cold medicine. She still was fevered with tylenol on board, and so we decided to have her sleep with us. Jason was watching TV in the living room, and Jess and I were sleeping in our room at midnight (12:07 to be exact). I woke up because I thought she was smacking her lips for a drink of water. Instead she was having a tonic clonic seizure. She was burning up, and the seizure was on both sides. We got her Valium suppository in and she was so gurgly in her throat with phlegm. To the point where Jason had to listen close to see if she was breathing, and had to turn her over and pound on her back to clear the gunk out. All of this and she was still seizing. The valium kicked in at the 4 minute mark and she went limp. In the meantime, I was on the phone with the 911 dispatcher, and waiting for the ambulance. The paramedics checked her over and said she looked fine and asked us if we wanted them to take her in the ambulance or bring her in ourselves. Seeing as how we are trying to get used to the Valium working and not having to take an ambulance ride every time this happens, we said we would bring her in ourselves. The paramedics left and we were discussing our plans and she started to jerk again. I called my parents to come and stay with Noah and called the 911 dispatcher back to have the ambulance come back. We couldn't give her anymore of the Valium so soon after the first dose and knew if it didn't stop it would be bad. They must have been a few miles away because they came back quick with every siren and whistle and light going. She stopped seizing on her own and we got her in the ambulance and all buckled. I went with and Jason waited for my parents to get there to stay with Noah. As we pulled out of our development, she started to have another tonic clonic seizure and they had to give her an injection of Versad and away we went with all the sirens and lights blaring. The seizure stopped just before we got to the hospital and they monitored her and gave her oxygen. They drew blood and it all came back normal except her white blood count which was quite high, indicative of an infection of some kind. They gave her IV fluids and IV antibiotics, and sent us home at 4:30 this morning. So now we are staying on top of alternating motrin and tylenol and her fever is under control for now. I suppose if it gets out of control we may see more activity. But for now we pray that the nasty fever stays away.

So that is our update for now. I will update in the next few days, unless something happens that warrants an update sooner.

Until next time- keep praying please
Amy

Saturday, September 23, 2006 6:10 AM CDT

We are home from the cities and Jess' visit with Dr. Ritter. She always manages to show Vicky and Dr. Ritter what she's got by having many seizures while in his office. I guess if she is going to do it anywhere, it should be then. Dr. Ritter's response was, "We have some work to do". So here is what we discussed.

Medications: She still has room to go on her Lamictal level so we will be increasing that dose over the next month. The problem is that we are likely to see more unsteadiness and shakiness with the increase because the Lamictal and Depakote have some negative effects on each other. Her Depakote level was higher and so we will do some decreases in that med if the shakiness increases. If we do not see significant improvement in the seizure activity with the Lamictal increases, we will then work on weaning the Lamictal, as it obviously is not working. Then it is on to Zarontin, another new med. We may also at some point be weaning her off the Keppra, because Dr. Ritter does not think that it is doing much either.

Seizure activity: She is having too many- no kidding! But I asked about her having generalized status tonic clonic seizures (grand mals that won't stop). Dr. Ritter said that the corpus callosum is the main route by which seizures cross between sides of the brain, but there are over 20 ways that they can travel from one side to another. So if the seizure wants to go to the other side, it will find a way. Probably not likely, but possible. Not what we want to hear knowing her history of status seizures.

The left side of her brain is "more messed up" than the right side. Meaning that there is more activity coming from that side than the right. Dr. Ritter did say that some time down the road (a long way) the seizures on the left may become more prominent in one area and then they could look at possible surgery to remove that part, but because of the right sided activity now, they can not think about that yet. She does have slowing on both sides of her brain, but more pronounced on her left. This is a main reason she turns her right foot out when she stands and walks, because she does not have as much control.

I got all of her EEG summaries and discharge summaries from her last hospitalization but have not had the time to decipher what they say, but I did notice that Dr. Ritter does classify some of her eye fluttering and staring as absence seizures, another type to add to the list.

I asked if he will want to monitor her on the unit again, and he said he may to decipher all the seizures, but for now we will do these med changes and check in with them. He wants to see her back in 3 months unless things get worse or better. So for now we do the wait and see game with the meds.

It is hard to know how to feel about all of this, as she does not have real good days very often right now. Yesterday was filled with jerking and fluttering, and although it becomes "normal" to us, it still is not normal and I am reminded of the impact it is having on her life and the lives of all those who love her so much.

So the seizure monster sucks and I wish I could take her place because at least then she wouldn't have to be constantly frustrated with those head drops and jerking.

So we ask again for prayers for something to work and peace to get through the next day, the next few hours.

Thanks- Amy and the gang

Wednesday, September 20, 2006 9:52 PM CDT

My mom, Jess and I head out in the morning for the cities. Jess has a check up with Dr. Ritter at 4PM. Hopefully all will go well and we will be back tommorrow night. Now if I can only remember all of the questions I have!

HAPPY BIRTHDAY TO OUR FRIEND MISS KYLIE AND HAPPY ANNIVERSARY TO HER PARENTS NEIL AND MARIA!

Please pray for Caroline- she had surgery today and we pray for quick and painless healing.

I'll try to update after our visit tommorrow, but I work all weekend so it may not happen until Monday!

Til then- Amy

Sunday, September 10, 2006 6:36 PM CDT

So here is the latest info- we did add the Topamax back into Jess' medication schedule, in hopes that this med was keeping the tonic clonic seizures at bay. So far she has not had another one, but continues to have many jerks and head drops over the past few days. We continue to increase the Lamictal also, so she is getting plenty of medication running through her little body.

She is a bit more irritable and unstable at times, so we will see what her lab levels show, when we have them drawn at the end of the week.

We head to the cities next Thursday, the 21st, for a 4PM appointment with Dr. Ritter. There we will re-evaluate the plan of action for Jess. I'm sure it will include medication adjustments and changes, as always.

On a good note, Jess did awesome at PT on Thursday. She walked behind a push toy by herself, all the way down the hall, and has continued to do the same at home this weekend. Maybe we will need a different walker, we will see what her therapist as to say.

Until next time- Love to all
Amy and the gang

Sunday, September 10, 2006 6:36 PM CDT

Tuesday, September 5, 2006 5:10 PM CDT

Well, Jess had another tonic clonic seizure today for 6 minutes and this one was on her left side. We had just gotten home from physical therapy and she was playing when I noticed she couldn't pull her face up off of the floor. Sure enough, she was seizing. I gave her the suppository of Valium and called 911 and the seizure stopped while I was talking to the 911 operator. So now, we live with the uncertainty all over again. We don't know what is bringing them on, or how long they will last. We are waiting to hear back from Dr. Ritter about restarting the Topamax because it is the only change that has occurred that could possibly have anything to do with the seizures. We will see what they say.

We are also going to be working on getting Jess a wheelchair for school in January. She will start in the special education preschool through the West Fargo school system after her third birthday. Our hopes are that she will be using her walker independently by then, but with transporting her from place to place (like to the gym, etc) and to give her a supportive seat for learning, a basic wheelchair will be helpful. So although, that is hard to think about, we know that it is only for school and only temporary.

So today has not been the best of days, and we are a bit on edge over these seizures returning and the fact that she has had one on each side of her brain. But this is another reality check, and we are once again reminded that no matter how much we would like to have control over this disease, it has a mind of its own.

Thanks for listening!

Love to all- The Beechers

Saturday, August 26, 2006 9:25 AM CDT

So just when we think life and seizures are finally calming down, we are reminded to always keep a watchful eye out. Yesterday at 7:03PM until 7:12 PM Jess had a right sided tonic clonic seizure, which resulted in a dose of rectal Valium, a visit from the paramedics, ride in the ambulance and some time in the Innovis ER. She was eating supper at my parents', sitting up in the chair, when I looked at her and her eyes started to go "crazy". Unable to focus, flittering every which way. I knew a bigger seizure was coming, so Jason and I laid her on the floor, and sure enough she began to convulse, with both her right arm and leg going. We loaded her with Valium and just as the paramedics arrived she came out of the seizure. So we took a ride in the ambulance, and stayed at the hospital for about an hour and a half, under close supervision.

There are positive aspects to this seizure though. The rectal Valium seemed to actually work for the first time. Either that or the surgeries have helped Jess be able to come out of the seizures on her own. She was quite "out of it" for about an hour, trying to fight off the Valium effects, but then she perked up and was back to her normal self, talking about Elmo, and digging through grandma's purse!

So we are unsure as to why this happened, could be the med change last Monday, could be a number of things, but more than likely (as always) could just be a coincidence with no known cause.

So needless to say, Jess got to sleep in the big bed with me last night and we will sticking close to home for the weekend just in case.

Thanks for all of your support and remember that Sunday at 4:00PM at Alliance Therapy in West Fargo (At 13th Avenue and 9th St. behind Premiere Video and Gate City Bank) we are having a balloon launch in memory of the Olson children. We are sending messages to these two special angels to raise money to support other families who have lengthy hospital stays on the 7940 children's epilepsy unit at Children's in St. Paul. If you can come we would love to see you!

Thanks for your love and support- Amy, Jason, Noah and Jess

Tuesday, August 1, 2006 12:47 AM CDT

It once again has been awhile-sorry. We continue to keep busy this summer with therapies and swimming lessons and various other appointments.

Jess had a sleep hearing test this morning and passed with flying colors. Because of her speech delay, it was recommended that she have her hearing tested, just to rule out that there is a problem with that. The audiologist said her test looked beautiful, so now we know that it isn't that she is not hearing us at times, it is just that she is ignoring us and having attitude. And let me say that attitude seems to be her main priority these days. Attitude with her brother, in yelling at him and hitting him, attitude with her dad in pulling off his glasses and hitting him, and attitude with me in the hitting department. I guess you could say we are seeing some of that what they call terrible two behavior. But we'll take it because it means she is advancing in her personality and behaviors.

Therapy is going well and we are slowing seeing a little progress. We are waiting to hear back from Dr. Ritter regarding her med increases, and behavioral changes. She is again dealing with bowel issues and a bad case of the butt rash, so I guess I would have a bit of attitude too.

Noah is still in swimming lessons, and enjoyed a FM Redhawks scout game with us on Saturday night- it was a date, no Jess and that was good! We are only three weeks away from the start of 1st grade- YIKES!

HOPE ALL IS WELL WITH YOU AND KNOW THAT WE LOVE AND APPRECIATE YOU ALL- The Beechers

Thursday, July 6, 2006 10:04 PM CDT

There is much sadness in our hearts this week. McKenna passed away on July 5th after battling Alpers disease, the same disease that took her brother Drew less than a year ago. She was 15 months old. Please pray for her mommy Shannon and daddy Rand and her big brother Cameron. All I can do right now is cry and hug my kids real tight-please do the same with your children.

Jess has been having more head drops over the past week. We decreased her Topamax and increased her Lamictal last week and Vicky at Dr. Ritter's office called today and is having us go back up on her Topamax until she is more therapeutic with the Lamictal, so now we are working with 4 seizure meds, instead of 3.

Therapy is going well. Jess can be quite stubborn, and has learned some defense mechanisms to not have to work harder, but the therapists have been great and continue to work with her to make her stronger in every way.

Jason is in Yellowstone for a few days, on a much deserved photo adventure and will be back on his birthday, Sunday.

So lots to tell and still my heart is so full of sadness and tears. We love you sweet McKenna- watch over all the other angels on earth for us.

Til next time- Amy and the gang

Monday, June 26, 2006 3:37 PM CDT

Well we have now entered the world of therapy- physical, occupational and speech. Jess will have each of these twice a week at Pediatric Therapy Partners right across from Innovis. She is showing delay in all of these areas, and the therapists believe she has a good chance for catching up. We are still weaning down off of Topamax and working on increasing her Lamictal. Such is the life of the medication trials. We will update you more later. The Beechers

Thursday, June 8, 2006 10:37 AM CDT

Sorry that it has taken so long to update!! We are home and here is what we know. We did not meet with Dr. Ritter til 8 PM on Tuesday and therefore we did not get out of the hospital til 9:15 and home til 1:15AM.

Dr. Ritter's analysis of the situation is this: Jess' EEG looks better than before surgery. She is not seizing as much as she had been. The surgery did force the seizures to go to one side or the other, therefore he did not see any generalized seizures (those that occur on both sides at the same time or that bounce back and forth). The worse news is that she does have seizure activity on both sides of the brain, they are just seperated now. That means no more surgery for now, unless the seizures change. We are now doing some med changes, weaning off of Topamax and beginning Lamictal.

The EEG also continues to show slow brain waves on the left side of her brain. This has been happening from the beginning. Dr. Ritter says he is a bit perplexed because the slowing does not seem to be related to her seizures. Her speech is at the 9-12 month level as far as her ability to verbalize and 15-18 months as far as her ability to understand verbalization. This all comes from the left side of the brain, which is where the slowing is coming from.

Anyway, we will update as we see changes. Thanks for all of your support and prayers. We love you all.

Amy, Jason, Noah and Jess

Monday, June 5, 2006 1:31 PM CDT

We are here on 7940 in room 7948 bed 2. The EEG hookup went quite well and Jess ate a good lunch. The not so good news is that she seized (head drops and flutters) all morning literally, and then was exhausted so she slept for about an hour. Dr. Ritter was doing rounds and said that this is not what we hoped for (all the seizing). That was about it for today- One of the nurses said that he may be able to read her EEG today with all of the seizure activity she is having. We will see. I will update later today or tommorrow morning if there is new news to report. Thanks for checking up on us- WE LOVE AND MISS YOU NOAH! Love, Amy, Jason and Jess

Wednesday, May 24, 2006 8:53 AM CDT

I realized today that almost a month has gone by without an update! Time seems to go by quickly when you are in the thick of things. The latest info- 2 days left of school for Noah and he will be a big 1st grader! Boy has he come a long way this year with school! He loves to read and is going to be in soccer and cub scouts this summer. Jess is fighting an ear infection and I have wiped more green snotty noses than I care to think about. She is seizing a bit more with the infection, but is trying to stand on her own and take a step or two which is improvement! We will still be going to Children's on the 5th for admission for video EEG. Lisa will be going with Jess and I so that Jason can stay with Noah and get some work hours in. I will try to be better about updating the page. Sorry for the delay and thanks for signing our guestbook! Love, Amy

Friday, April 28, 2006 1:15 PM CDT

So here is the next step in the plan. We will go to Children's in St. Paul on the 5th of June and Jess will be admitted for 24-48 hours for video EEG. She will be evaluated for PT, OT, and speech at that time, and then hopefully Dr. Ritter will come up with a plan of care. Sorry I don't update much- I figure if life is the same that I don't need to bore you. Thanks for checking our page. Amy

Monday, April 17, 2006 8:46 AM CDT

OK so here is the story- It seems that Pedialyte is in fact the culprit of the continued diarhea. We were released on Saturday from Children's and since then Jess has had normal poops, which of course we are ecstatic about. It is amazing the things that make you happy! She is doing much better and has discovered that she has not eaten much in two weeks, and now would like to make up for that time by eating continually. She is doing well seizure wise. We have seen much less in the way of that activity. The plan is to schedule a 24 hour EEG for the end of May in St. Paul, and then she will have OT, PT and speech evaluations, and Dr. Ritter will write for those services to be started. Until then, we pray for continued decrease in seizures and for a bit of normalcy for awhile. Thanks to everyone for continuing to give us encouragement and prayer support. Please pray for our friends the Vetters, and in particular Caroline. She is back in at Children's and they are trying to figure out what is the next step for her. Her website is www.caringbridge.org/visit/carolineruby.

Until more news- Amy

Sunday, April 16, 2006 8:36 AM CDT

HAPPY EASTER TO EVERYONE! We are home and I plan to update more tommorrow! Until then- Amy

Thursday, April 13, 2006 9:53 AM CDT

I know it has been quite some time since we have updated, sorry- sometimes the energy level is not there! We are still here at Children's in St. Paul. After her appointments on Tuesday, Dr. Ritter wanted her admitted for continued diarhea and dehydration. The staff pediatrician seems to think that Pedialyte is the culprit, if you can believe that. Apparently with prolonged diarhea, it can make things worse. Jess' intestinal system has had its normal flora wiped out and the pedialyte is making it worse they think. So she not able to drink it or fruit juice or milk products, so we are back to flavored waters. She did have a decrease in diarhea (down to 4 form 9 diapers) but now this morning she has thrown up twice. So we don't know what the plan is. It is a mystery and very frustrating as we just want some answers. So pray for an explanation, and for patience on our part. We miss our Noah so badly and can't wait to see him. If you see him please give him hugs and moochies and tell him that his mom and dad and sissy love him lots. (Of course we have been telling him multiple times daily too, but he can't get enough love!) We will try to be better on updating the page. Until next time- Amy

Tuesday, April 11, 2006 9:24 AM CDT

Greetings from St Paul,

We came down on Sunday as it appeared that we had a break in Jess's Vomitting and Diarhea. We made it to the hotel and within 10 minutes Jess started vomitting again. We went to the ER and were admitted to Children's. She was doing so well that we were released yesterday. Unfortunately she has continued to have diarhea, and she vomitted again this morning. We are waiting to see our doctors today and will ask them for their advice. Hopefully Jess is able to keep things down and start digesting properly so we can come home tonight. We will let you know more later.

The Beechers

Friday, April 7, 2006 4:45 PM CDT

Ok- I am sorry we haven't updated in a few days. I guess we are all a bit out of sorts with this hospitalization. Jess is still at Innovis. Her rotavirus test came back negative this time, but she is still having diarhea and vomitting. So they have run some other stool cultures and waiting to see how they come back. Hopefully she will go home tomorrow, but if she doesn't drink enough or starts to vomit again, then we will have to re-evaluate. We still plan to go to the cities on Sunday for Jess' Monday and Tuesday appointments. If something changes, we'll let you know. Thanks for your words of encouragement. Love, the Beechers

Wednesday, April 5, 2006 6:07 PM CDT

Ok so we spoke too soon. Jess was admitted to Innovis again yesterday for continued vommitting and diarhea that continues to keep her dehydrated. So we wait until her CO2 level is back to normal and then take the IV out and see how she does. We'll update more later- I am home to get new clothes and supper and then am heading back. Oh and now Noah has an ear infection too- it just never ends! Til next time- Amy

Thursday, March 30, 2006 3:09 PM CST

We are home! Jess has Rotavirus and that is how she became so dehydrated so quickly. She perked up yesterday, but still had a lot of diarhea, so Dr. Tillisch decided to keep hydrating her through the IV one more day. She is happy to be home! We are all trying to get back to normal after the events of the last week. We are still overwhelmed with feelings of love and blessing from the benefit last Saturday. Thanks again for all of your support. We'll update in a few days. Love, The Beechers

Monday, March 27, 2006 8:29 AM CST

UPDATE: Tuesday, March 28th: Jess was admitted this afternoon to Innovis Hospital for dehydration, nausea and vomitting. She started throwing up yesterday afternoon and has not stopped yet. She has not had her seizure meds since yesterday morning. She has elevated BUN levels which is a kidney function test, that indicates dehydration. So the plan is to keep her hydrated with IV fluids and to start back with her meds when she stops puking. Hopefully we won't be here past tommorrow. More later- Amy

WOW! What a weekend we had! We are overwhelmed and without words over the success of the benefit and all of the hard work and love that our friends and family have shown us. It is hard to express the feeling inside of me- my heart is truly overflowing with emotion. THANK YOU THANK YOU THANK YOU ALL!

Jess is doing about the same. She is generally happier than pre-surgery except for those nasty eye flutter and jerking clusters, which send her into an irritated mood. (Can you blame her!) She crashed on Saturday at 7PM and did not awake until 7AM. Noah had a blast and was a such an awesome boy (not that we had any doubts!) at the benefit too. He was very excited to see some of his buddies!

The plan for now is April 10-11th Jess has appointments at Children's and we will be discussing the next options at that point. Until then we will be praying for decrease in the flutters and jerks.

AGAIN- THANKS ARE NOT ENOUGH TO EXPRESS THE BLESSINGS AND LOVE WE FEEL FROM ALL OF YOU!

Love,
The Beechers

Thursday, March 16, 2006 11:46 PM CST

I didn't realize it had been 10 days since we have updated. Sorry! It seems as though Jess is working towards more eye fluttering and a few more head drops each day. I wish we had good news, but we are so uncertain as to what will be happening from day to day. I talked to Vicky at Dr. Ritter's office today and she is having us increase her Topamax in the morning to see if it helps with the eye flutters. She is also going to talk to Dr. Ritter on Monday and ask about a 24 hour EEG inpatient on the epilepsy unit. Jess has not had an EEG since last April, and Vicky thought it would be reasonable to do an inpatient EEG. We would like to know what actually goes on in a 24 hour period in her brain, and if there are changes in the brain wave patterns. We will let you know when we find out more next week. Keep praying for control of these seizures. Jess is due for a break soon! We look forward to see all of you next Saturday at the benefit! Thanks so much to all of those working hard to make the benefit happen! We will never know how to repay you.
Until next time- Amy

Monday, March 6, 2006 4:39 PM CST

***Update**** New pictures posted on website. CLick on the link below.

Hi everyone- Jess is doing well. She is getting back to herself (personality- wise). She has not had any more tonic seizures, a few head drops, more eye fluttering, and a lot of teeth grinding. We don't have any idea if the teeth grinding is related to seizing or not. She gets her staples out on Wednesday. We got her follow-up visits scheduled for April 10th and 11th in St. Paul with an EEG beforehand.

We have a special prayer request for our friends, Neil and Maria Gibbons and their family. Their daughter, Kylie is a friend of Jess' from the epilepsy unit, and is still struggling with her seizures. They have a new baby, Ava, and I can't imagine how frustrated and scared they are right now. Please continue to pray for them. You can visit Kylie's page at www.caringbridge.org/mn/kylie.

Until next time- Amy

Wednesday, March 1, 2006 3:57 PM CST

Hey everyone- sorry it took awhile to get back to you but our DSL was down for awhile. Dr. Ritter's office called back and told us to just keep track if these type of seizures happen again, and to load her with rectal valium if it goes more than 3 minutes. They also want us to call them if it happens again. So we feel like we are back to wondering and waiting for the big ones to come again. I guess we just wait and see. We will update more later. Thanks- Amy and family
PS McKenna got to go home, but Miss Kylie seems to be seizing even more- Pray for this sweet girl- we love you Kylie and are praying for you. www.caringbridge.org/mn/kylie.

Tuesday, February 28, 2006 7:14 PM CST

Hello Everyone. We got home last night after an uneventful drive back to Fargo. She has recoverd well from the surgery, but after getting a good nights sleep, Jess had a seizure this morning that lasted about 15 minutes. Thankfully it was the first of the bigger seizures to ever stop on its own, and it did not move from the side it started on to the other side. We went to the ER although the seizure stopped on the way in. They checked her med levels and pronounced her back to normal. Unfortunately we don't know why it happened. We called down to Dr. Ritter and are waiting to hear back. We will update more as information becomes available. Please continue to keep Jess in your prayers as well as her friends Kylie and Mckenna who are still in the hospital in St Paul.

The Beechers

Monday, February 27, 2006 10:24 AM CST

Dr. Frost came in and said he ordered a GI consult for Jess' BM issues. She struggles between diarrhea and constipation and it is very painful. This all began before surgery so Dr. Ritter wanted a GI consult while Jess was inpatient. If that goes well, we are out of here today. If we don't sign again today that means that all went well and we are on our way home. More later- Amy and Jason

Saturday, February 25, 2006 2:52 PM CST

Sorry it took so long to update today. Jess is doing well. She ate a pancake and scrambled eggs for breakfast and a peanut butter sandwich for lunch. She is doing pretty good on drinking too. They have locked off her IV and are going to be taking off the head bandage tonight. As of now, the plan is home on Monday. We'll update more later. The Beechers

Friday, February 24, 2006 4:01 PM CST

Hello everyone!

We just got back from Jess's post-op MRI. She is doing well and was awake and alert before going to her MRI. She was smiling and pointing at the baloons and talking. It was good to see her like that so soon after the surgery. Noah will be here soon, so that should brighten things up quite a bit. We will write more later,

The Beechers

Friday, February 24, 2006 8:05 AM CST

Good morning everyone! We are doing well this morning with a decent night sleep behind us. Jess did well through the night- she did spike a fever at 101.4 but they gave her a tylenol suppository and it came down. This is normal right after surgery. She has had her labs drawn, which she did not enjoy, and is still in a good sleep from her meds. Today she has an MRI at 2PM and that is all for today. We will update you later of any changes. Thanks for all of your prayers. They are being answered. Love, the Beechers

Thursday, February 23, 2006 6:46 PM CST

Hello everyone. Jess got out of surgery at about 6:00PM and is doing really well. The surgery went very well so they moved her to the epilepsy ward. We are just getting settled in and will write more soon.

The Beechers

Thursday, February 23, 2006 7:18 AM CST

Everything has gone well- Jess flew through the doctor appt and MRI with no problems. She is scheduled for surgery at noon today. We check in at 10:30AM and head up to surgery from there. Because she may not get out of surgery til after 4PM, they may decide to send her to the PICU for the night for closer observation. We won't know until surgery however. We want to thank everyone who is so instrumental in making these trips go smoothly. Thanks for taking such great care of Noah and for keeping everyone at home up to date on what's going on down here. We love you all and couldn't do it without you! Love, Amy, Jason and Jess

Monday, February 20, 2006 3:05 PM CST

Well we are about set to leave for St. Paul and begin the next part of the journey with Jess. She has a doctor appt. on Tuesday at 11:00AM, an MRI on Wednesday at 10AM and surgery on Thursday at 12:00. Please keep us in your prayers and check back for regular updates.

On another special note: PLEASE pray for another family dealing with a much worse form of epilepsy, Alper's disease. They have already lost one child to the disease, and have a 1 1/2 year old who is now battling the disease. No one survives Alper's. Right now they are stuck in Orange County, California (where they took a much deserved family vacation) with McKenna in the PICU at Children's there. She has been seizing on and off for days, and is in a drug-induced coma. They are desperate to get her back to MN and Dr. Ritter, but are having difficulty with the flight because their insurance won't cover the cost of $15,000. If you or anyone you know has the means to contribute to getting McKenna back to MN please help them by going to their website at www.caringbridge.org/mn/drewolson, and contacting the bank that is raising money for her. Please help if you can.

We will update later. Thanks for loving and supporting us so much- We love you- The Beechers

Thursday, February 16, 2006 1:33 PM CST

NEW SURGERY DATE: Next Thursday, February 23rd at noon. Yes, that's right- they got us scheduled for next week. We will be heading to the cities next Tuesday and hopefully Jess' cold will clear up soon. So now we wait and see! Please pray for health and clearing up of the cold. Thanks for all of your notes and prayers. They bring us comfort and peace. Til more news- Amy and the gang

Monday, February 13, 2006 7:19 PM CST

BAD NEWS- Jess has developed a cold over the last 24 hours and now has a fever that is rising, so once again we are not going to the cities. We don't know a new date yet, but this week is off. They don't want to risk the chance of her getting pneumonioa, etc. So needless to say, we are disappointed and frustrated. More later- Amy

Monday, February 13, 2006 10:41 AM CST

Sorry I haven't updated in awhile. We are getting ready to go to Children's in St. Paul for surgery #2. Jess has an appointment at 2PM tommorow, an MRI at 9:30AM on Wednesday, and surgery at 9:00AM on Thursday. She'll be in the hospital til Sunday or Monday. We will be updating daily. Please keep Jess in your prayers and thanks for all of your support. The Beechers

Tuesday, January 24, 2006 1:59 PM CST

Hello all- I know we are not updating very frequently on the page, but there is not much new here. We are still seeing several myoclonic jerks and drops daily. Jess is a typical 2 year old, whose favorite thing is to squeal/scream and annoy her brother Noah.

We are planning for the second surgery on the 16th of February to complete the corpus callosotomy.

Please pray for health for the next three weeks!

Check out the new pictures!

Love, The Beechers

Saturday, January 7, 2006 8:04 PM CST

HAPPY BIRTHDAY JESS!! Today is Jess' 2nd birthday and we celebrated with pizza and cake. It was a good day!

We got back from St. Paul last night. Jess had her followup appointments with Dr. Ritter and Dr. Dunn. We talked with Dr. Ritter for about 40 minutes about the next surgery and what our options are after this surgery. He said that we need to see what results come from this surgery and then map out a plan for the future. He told us that sometimes it is beneficial to go back and try some meds over again once the child is a bit older, because she may tolerate something now that she didn't before. He also reassured us that the developmental milestones she is missing should not be pushed until surgery is done and she is recovered. Patience is key and she is not a child like all others, and her time schedule is going to be different because of her seizures. I was reminded of why we chose to stay with Dr. Ritter- he listens and will take the time for our questions and concerns. It is just hard to get in for appointments- but he told us a new pediatric epileptologist has joined their clinic and that will make for a lighter load for all.

Dr. Dunn was also great- she engages with Jess so well, and was amazed at how well she had healed. She said that after the second surgery we may see a focalization to one side of her brain and then she would evaluate whether she would go ahead with a resection of the part of her brain that is seizing. She also talked about Vagal Nerve Stimulator (VNS) surgery. I won't go into it now, but it is a pacemaker type device placed in the base of the brain that generates a small shock when it detects that the brain is going to seize, and attempts to regulate the brain's activity so that it doesn't seize.

Anyway- as far as Jess goes she has had some pretty bad days of seizing over the past week and a half. Her more severe head drops are back and she is quite frustrated and clingy. She also developed a cold and is dealing with the green snot monster. Better to get it out of the way now before her second surgery.

Speaking of second surgery- it is scheduled for Thursday, February 16th with pre-op tests and doctor appointments starting on the 14th. Same length of stay- probably til Monday.

That is alot of info- but we wanted to let you know all the details. We will update if things change or when we have new news to report.

Love, The Beechers

Thursday, December 22, 2005 4:30 PM CST

We just wanted to let you all know that things are about the same here. Still having head drops and jerks and eye flutters. We are heading to the cities for a followup appt on the 4th and 5th of January and are still on the surgery schedule for February 16th at 9AM.

We wish all of you a very blessed Christmas and want to thank you all for your generosity and love this past year.

Please also pray for Caroline, who is still on the Epilepsy Unit and will be for some time, and for Zoey who had a left hemispherectomy yesterday. They will spend Christmas in the hospital.

Until next time- The Beechers

Thursday, December 22, 2005 4:30 PM CST

Monday, December 12, 2005 11:14 AM CST

Hello to all- again we apologize for the delay in updating. Things are a bit sleepless at the Beecher household these days, as Jess seems to enjoy getting up for 2-3 hours in the night (usually around 2AM). We don't know what this is from, except that she always up with stinky diapers and doesn't want to go back to sleep right away. We continue to see eye flutters and jerks, as well as head drops. They don't seem to be as severe, but still are too many.

On that note, we have her second surgery date set for Thursday, February 16th at 9AM. This is the surgery to complete the splitting of the corpus callosom. The schedule is pretty much the same, we go down to St. Paul on the 13th for pre op tests and doctor visits. Surgery is the 16th with a 4 day hospital stay.

If by some miracle, the seizures go away before then, we can always cancel, but at this point we are planning on this second surgery.

Hope your Christmas season is peaceful and full of love- More later- The Beechers

Tuesday, December 6, 2005 11:15 AM CST

Greetings to everyone- Sorry it has taken a week to update! Life continues to get somewhat back to normal at our house. I returned to work last night and I must say it was good to see my co workers (who are also my friends). Noah is back to school after a few snow days last week and Jess is continuing to recover. She still is seizing daily, some days not so bad, some days about the same.

We continue to wait on a date from Dr. Dunn's office for the second surgery. We do have followup visits with both doctors on the 5th of January.

I want to take a minute to say thank you to everyone who is supporting us in this journey. I know we say it often on this page, but I don't know if everyone knows the depth of appreciation and love we feel for you all. We were granted a Christmas wish through a local radio station because of some wonderful friends and coworkers, and I must say I am not sure we feel worthy with all of the struggles everyone endures in this life. But we do feel overwhelmed and many times at a loss for words, over the outpouring of love you have given to us. We can not say enough how often we thank God for each of you.

We wish each of you a Christmas season full of the peace and love God has given to us through you.

We'll update with more later.

Love, Amy, Jason, Noah, Jess and Morrie (our puppy- we can't forget him!)

Tuesday, November 29, 2005 1:21 PM CST

*****Update - See link below for pictures from the hospital*****

Greetings from the blizzard stricken north! We have been stuck inside now for 2 days which let me tell you is a bit chaotic. Noah keeps asking when school will be back on, and I pray that it is tomorrow!

We were able to spend Thanksgiving weekend with my extended family in Moorhead at the annual Jensrud family reunion. We had a great time, and Jess even was able to be there for a few hours on Saturday! We were reminded again of how greatly God has blessed us with such a wonderful family support system.

Jess continues to heal. She also continues to seize, which is a bit discouraging, but Jason reminds me that we have to wait a month to know the full effect of the surgery. So we pray December 17th is a great day! We are still awaiting word about a second surgery date in mid-February and followup visits in mid December with Dr. Ritter. It seems that it takes forever to hear back from them, but I will continue to call daily until we have dates set.

Please keep in your prayers our special friend, Miss Kylie. She is still on the unit at Children's and continues to struggle with more and more seizures. Maria, Kylie's mom is also due in February with their second girl, and I can not imagine the stress this must place on her, and the baby. Her website is www.caringbridge.org/mn/kylie if you would like to visit it.

Thanks again for the love and support.

Love, The Beechers

Wednesday, November 23, 2005 4:16 PM CST

Sorry it has taken a couple of days to update. It has been a bit more stressful than we thought. Jason and I are dealing with some respiratory illness, and it looks as though Jess is catching it too.

I took Jess in to the ER this AM because she is having constipation issues and is inconsolable at times due to pain. They did a CT scan, which showed no bleeding or swelling, and her abdomen and chest x-rays were normal, so that was good. The ER doc thought that her pain had gotten out of control and she needed something more than tylenol (which is what we were sent home with- nothing else), so he prescribed tylenol with codeine. His thought was if her pain was under control, pooping would be easier. After one dose, she was a completely different girl. She even played by herself, and walked along the furniture again. It's amazing what a little codeine will do for you!

She continues to have head drops and jerks daily. Not as many as usual, but still way too many. Dr. Frost said that for the first month post-op this is common because the brain needs to heal and then re-align itself. So for now, we will disregard what happens for the next month and hope to see improvement then. They are working on setting up the second surgery, just to get it on the books. This would be to do the back 1/3 of the corpus callosum. We will see what happens in the next 3 months.

I can't believe it is Thanksgiving tomorrow- life seems a bit out of the normal for us now, but we will glad to spend this holiday with family.

Thank you to everyone who views this page and signs the guestbook, and to everyone who thinks of our family and our Jess in their daily lives and prayers.

We will update when we have news.

Happy Thanksgiving- The Beechers

Monday, November 21, 2005 5:29 PM CST

We're Home.

Jess is doing well and is happy to be in the familiar confines of our house. Noah is glad to be home as well. Thats it for now.

The Beechers

Sunday, November 20, 2005 6:04 PM CST

Good evening,

We are still here. We chose to stay an extra day as Jess was still not drinking as much as they hoped. She has really kicked into gear tonight though and is sucking down everything we give to her. They are saying that the will let us out first thing in the morning. Tomorrow's update will be from home. She has continued to do well today and even got a big nap in this afternoon. (almost three hours) She ate great for supper and I am sure she will be very excited to be home.

In other news we have gotten a chance to spend some time with Kylie and her family as they are on the unit as well. Please pray for her and her family.

Saturday, November 19, 2005 3:45 PM CST

Sorry it took us a while to update today-

Today has been a good day- Jess has been much more awake today and has been eating pretty good. She is drinking some, but still needs to do a better job at it. Dr. Dunn and Dr. Dickens (on call neurologist) say she is looking great and if everything stays positive she could be discharged tommorrow.

Jess had her head bandage removed this morning and the incision looks good- no swelling or bruising. I don't know if you can ever prepare yourself for what staples in your baby's head will look like, but it did surprise me a bit.

Noah got here today and it has been fun to have him here. I know that Jason and I have missed him alot, and I am sure Jess has too.

On a less positive note, she has had a few jerking seizures today. It is hard to know if that is because of surgery (which is common to see) or if it is how it will be for her from now on. They were much less severe, but obvious all the same.

If we are discharged tommorrow, we will probably stay at the Lipschultz apartment overnight and come home on Monday, just for our comfort sake.

We haven't updated pictures because we haven't made it over to the Family Resource Center- we may not do it til we get home- Sorry.

We will update again tomorrow.

Love,
The Beechers

Friday, November 18, 2005 5:05 PM CST

5:00 Friday and the news continues to be good. She just got out of her MRI and has woken up and is as alert as she has been since the surgery. She has had a little bit of Jello and is enjoying an orange popsicle. We hope to get her drinking a bottle regularly so that she can have the IV taken out. She is down to mainly Tylenol for pain control and only has the IV left as a unnatural connection. The doctor we saw today thinks that if things continue to progress this well Sunday is a possibility for going home. I guess a lot of Kids go home on Sunday. We will wait and see what happens and update when we know for sure.

A big hi to Noah. We miss you lots and can't wait to see you tomorrow. Drive safe Jill and thanks for bringing Noah to us. We'll see you soon.

The Beechers

Thursday, November 17, 2005 3:14 PM CST

WE'RE OUT!!!!!!

Jess' surgery is finished and she did absolutely great! The doctor said that everything went really well. So well that we were able to skip out on the ICU and go directly to the epilepsy unit. (Which is much more comfortable and family friendly) Jess is still pretty sleepy but looks good and is opening her eyes a little bit at a time.

It is such a relief to be through the surgery and on the road to recovery. Thanks to everyone who has been sending positive thoughts and prayers our way. It is a blessing to have such support from our family and friends. Thanks to you all.

A special thank you to Jill and the Ericksons for staying with Noah and to the Bentleys for watching Morrie for us. We couldn't have done it with out you and are so thankful for everything you are doing.

We love you Noah and will see you very soon.

Will write more later,

The Beechers

Tuesday, November 15, 2005 12:03 AM CST

Hello everyone- we arrived last night in St. Paul at about 8:30 and are staying at the Lipschultz Apartments. We had an uneventful ride with a bit of rain to begin with, but nothing in the Twin Cities. We are getting ready to go to Jess' appointment with Dr. Ritter and then have lab draws afterwards. We will be laying low, hanging out in the apartment for the rest of the day and evening. We will update tommorrow before the MRI- Surgery is scheduled for 9 AM on Thursday. Thanks for all the prayers and journal entries! Love- Amy, Jason and Jess

P.S. NOAH WE LOVE YOU AND MISS YOU! (Grandma please pass this on!)

Thursday, November 10, 2005 3:52 PM CST

NEW DATE: Next Thursday, November 17th at 9AM Jess will have her 2/3 corpus callosotomy surgery at Children's Hospital in St. Paul. I guess the doctor and neurosurgeon did not have a reason to wait for two weeks off of antibiotics to do the surgery. I imagine it was because they realized that the drug would be out of her system within 1/2 day after the last dose. So she will be done with her antibiotic on the 14th, have tests on the 15th and 16th and surgery on the 17th. Pray for continued healing and health. She has a bit of a cough still but it is getting better. Noah does not have school until Monday, and we leave on Tuesday so that will limit the school germs. Now we just have the organizing to worry about. Thanks for your continued prayers. Amy

Wednesday, November 9, 2005 10:07 AM CST

Still no new date for surgery- we are a bit frustrated to say the least! We had Jess tested for RSV and that came back negative, so that was good news. She is slowly getting better and we are only doing her neb treatments if she needs them. She still has a runny nose, but everything else seems to be improving. Hopefully Jason will update pictures sometime today. Until we have a date... The Beechers

Wednesday, November 2, 2005 8:59 PM CST

UPDATE THURSDAY: Surgery is cancelled for next week and they are working on rescheduling for December. I took both kids to the drs today and Noah has a sinue infection, while Jess has bronchitis with wheezing. She was put on nebulizer treatments every 2-4 hours for at least 3-4 days. So now we wait some more, and see when the next available surgery date is. I will keep you updated as we know more. Amy

Just a quick note: WE NEED PRAYERS! Noah got pink eye on Saturday and is on drops, but on Sunday he developed a nasty cough and now Jess has a runny nose and cough. They tell us if it progresses anymore, we have to cancel and reschedule the surgery. Although we totally understand that they would not risk any complications if she is ill, it still is so very frustrating to be continually on edge about this surgery. I can understand how people get frustrated with God when it comes to things like this. I know it will all work out, but in the mean time it makes me angry to have so many setbacks.

Anyway, we will see what the next few days bring, and we will post either way. The earliest we would be rescheduling would be the second week in December.

Hopefully next time we will have positive news- until then

Amy

Tuesday, October 25, 2005 12:45 AM CDT

Hi everyone- we are getting our plans set for going down to Children's in St. Paul on the 8th of November for pre-op tests and visits. Surgery is still scheduled for the 10th at 8:00AM. Our biggest concern right now is that Jess can not be on antibiotics or be ill for 2 weeks prior to surgery. She tends to be much more susceptible to illness, and so not being ill is not always easy for her. So please say many prayers for no illness in the next two weeks. We have decided to not take Jess to public places, and to ask anyone who is ill or around anyone who is ill, to refrain from visiting. We are not venturing out to many social events either, so if we do not show up at an event, please do not be offended- we are just taking steps to ensure there is no need to cancel and reschedule Jess' surgery.

Thank you so much to everyone who has helped us out through this part of Jess' journey. We could not make it through without you.

Please add to your prayers our other friends who are dealing with the effects of this disease: Kylie, Jeffrey, McKenna and her angel brother Drew.

Until next time....The Beechers

Saturday, October 15, 2005 8:19 PM CDT

We have a surgery date- Thursday, November 10th at 8 AM at Children's Hospital in St. Paul. The neurosurgeon is Dr. MaryBeth Dunn. We will head down on the 8th because Jess has pre-op labs, MRI and appointment with Dr. Ritter on the 9th. She will be admitted to Children's at 6AM on the 10th with surgery at 8AM. The surgery itself will take 3-4 hours and after recovery she will go to the epilepsy unit for the remainder of her stay which could be anywhere from 5-10 days.

Thank you for all of the prayers you have already said and thank you in advance for the prayers that you will be saying during these days ahead. We will keep you updated on her progress. She continues to have numerous clusters daily and is quite clingy and irritable during and after the clustering.

Until next time- The Beechers

Hello everyone- Just wanted to let you all know that we have not yet received a date for surgery. We do know that it will be before the end of the year, probably in November. We are now waiting for Jess' pre-op labs to get back to Dr. Ritter so he can determine if we need to wean her off Depakote (which can increase bleeding) and increase her Keppra. We also await news from ND MA to see if they will approve the surgery for coverage. Our BCBS insurance does cover it and she has met all of her deductibles, etc. but MA should still approve it in case of later surgeries or other post-op surgery care that would come up after the first of the year, so we don't have to worry about new year deductibles.

Anyway- Jess is still clustering each day, and the past four days have been a bit more frequently, but she continues to smile through it all.

The MRI scan showed some scarring (gliosis) of brain tissue in her occipital region of both sides of her brain. This is the back lobes, and is due to her repetitive seizing. It is "normal" for kids with her type of epilepsy, but we don't want to the scarring to continue, so we want surgery as soon as possible.

So many people ask how do you make a decision like this for your child? What if she would grow out of it? My answer is this- the seizures have progressively gotten worse- I don't think growing out of it is an option at this time. And what if we do nothing and it continues to get worse and we put her in greater danger of harm. I will take the surgery option over that. A coworker of mine told me something that has made this decision a bit less difficult. She said, "You can not make a good decision, you can only make a decision good." That is what I hold on to because the Lord knows we could ask what ifs until we are blue in the face, and never have the answers.

I better sign off for now, my girl is having some head drops.

Sorry this is so lengthy- we'll keep you updated of dates for surgery!

Thanks for loving us- know that we love you too!

Amy (and the rest of the Beecher gang)

Thursday, October 6, 2005 2:08 PM CDT

Hello. We heard back from our doctors today. We learned that the results of all the tests that have been done in the last month did not show a single focal location of the seizures. If the seizures had been focal they would have done surgery to remove that part of the brain with a very high likelihood that Jess would become seizure free. Unfortunately this was not the case. Because the seizures are not focal they have recommended a 2/3 Corpus Callosotomy.

"A Corpus Callosotomy is a surgery that sections, or separates, the corpus callosum. (a nerve bridge which connects the two halves of the brain and integrates its functions) By separating the cerebral hemispheres, the spread of an epileptic discharge can be confined to one cortex, reducing seizures. Some type of seizure activity on one or both sides will continue after the operation, but the effects are generally less severe than the repeated drop attacks or convulsions."

The surgery will most likely be within the next couple of months and will require an inpatient stay of 5 to 7 days in St Paul.

Thats it for now, we will update more as the news settles in.

The Beechers

Saturday, October 1, 2005 9:14 AM CDT

Just a quick update

I spoke to Vicky, the nurse clinician with Dr. Ritter, and she said that they will be taking Jess' case back to surgical conference on Tuesday to review scans and discuss surgical options. We will be going for a followup visit to St. Paul on October 20th to have questions answered and map out the plan for surgery (is she is a candidate)

In the mean time, she continues to cluster and we are noticing more severe drops. She has actually fallen forward from a drop attack while she was standing by herself. She gets so angry too now. Her personality changes when she starts to cluster. I just wonder if it hurts? She also seems to cluster more for me than Jason- probably because of the times of day.

Well, if we hear something after Tuesday, I will update then. If nothing changes, you will hear back from us once we know more about surgery. Thanks so much!

We love you all! Amy and the gang

Thursday, September 22, 2005 9:41 PM CDT

Hello everyone- just a quick note before we head out to Children's St. Paul tommorrow morning. Her MRI is scheduled for 1PM. Hopefully the report will be back to Dr. Ritter by Tuesday and they will be able to take her case to surgical conference. If not, then the following Tuesday they will discuss her case.

We did find out that the flumazenil scan did not show focality. In other words, there were not focal spots for the seizures. The glucose scan showed some left sided focality, but the EEG that was done immediately before the glucose scan showed right sided seizure activity. Vicky, Dr. Ritter's nurse clinician, did not know how to interpret these findings, and was going to have Dr. Ritter look at the reports. My gut feeling- the seizures are not focal. Which is not good for surgery options. This of course is just a gut feeling, but we will see what the MRI shows and how it correlates or refutes the PET scan findings.

Pray for possiblities for treatment please! I am starting to feel discouraged and afraid for Jess.

Thanks for your support- Amy and the gang

Monday, September 12, 2005 10:23 PM CDT

We are home! Sorry it has taken a few days to update again. Now we play the waiting game. Wait for the PET scans to be read by the Detroit doctors. Wait for the report to be sent to Dr. Ritter. Wait for the MRI scan on the 23rd of September. Wait for the reports to be compared and studied at surgical conference. Wait to hear what the medical team decides as far as surgery.

In the meantime, Jess had a rough day today. Many, many clusters and head drops. She had clusters, then slept, then played, then clustered, etc. Dr. Ritter's nurse, Vicky, had us triple her Depakote dose in the evening to get the clusters under control. If they don't stop, then we will have to give her the rectal Valium.

Noah is having a great time in kindergarten! He is doing great with his letters. We practice every night and he does awesome.

I want to apologize to all of our friends that we have not personally emailed back. It is not that we are not so glad to hear from you- quite the opposite. We cherish the support and notes. Sometimes, we find ourselves a bit overwhelmed and over-tired. Please know that we love you all and appreciate you all very much!

Til we know more- The Beechers

Friday, September 9, 2005 6:07 PM CDT

Good evening everyone, (Said Dan Rather)(and Amy)

Round two of testing is done and Jess did very well. She fought sedation, but eventually gave in to the double dose. Her IV made it through the night so she didn't have to get poked again. (YEAH) Now we wait for the report to get sent to Dr. Ritter and to hear from the staff at the Minnesota Epilepsy Group. We fly home tomorrow and are looking forward to being back in our own beds, and crib.

We can't wait to see Noah and hear about his first long week of Kindergarten.

Thanks for all the prayers and support.

The Beechers

Thursday, September 8, 2005 5:32 PM CDT

Hey everyone!

Round one of testing is complete. This morning Jess had an EEG as well as the glucose PET scan. As usual she voiced her dissapproval as they connected her to the EEG and put the IV in. We have been asked when we will get the results and unfortunately the answer is not for a while. The doctors here read the report and then send it to our doctor in St Paul. It takes about 5-10 days, so the waiting game goes on.

Good news and bad news from friends today. Patti and Courtney had good days and improvements.
Caroline, the daughter of one of my co-workers was life-flighted to childrens hospital in St Paul for seizures and is being treated by our doctor, Dr. Ritter. (Where have we heard that before?) Please continue to keep them in your prayers.

Have a good night. We miss you all. (especially Noah)

Wednesday, September 7, 2005 7:09 PM CDT

Oh the places we will go!

In specific, Detroit where we arrived this afternoon after a pleasant flight that Jess slept through. We are tired after our travel day and are looking forward to getting some sleep.

We check in tomorrow morning for the first of the two PET scans that Jess will have while we are here. We will try and update tomorrow evening to let everyone know how the day went.

Thanks for all your thoughts and prayers and keep them coming.

Also if you could please add Courtney and Patty Radermacher to your prayers. They were in a motorcycle accident last weekend and are in ICU at Meritcare. Jason worked with Patty for three years at Community First.

Jason, Amy and Jess (Jess says hi Noah, we miss you)

Saturday, August 27, 2005 9:45 AM CDT

Well we finally have some dates set for Detroit. We will be flying outof Minneapolis on Wednesday, September 7th. Jess' tests will be done the 8th and 9th at 9AM. She will be outpatient status. We return Saturday, September 10th in the morning. Now we are working on getting the follow up MRI scheduled. Once that happens, her case will return to surgical conference, they will discuss the findings and determine if she is a candidate and for what type of surgery. Our concern now is that she is jerking more often, and more severely and we don't want her to end up in a large seizure. If that happens she will have to have her Valium suppository and that means no PET scans for at least a month. They can not do the testing in Detroit unless she has not had this drug for at least four weeks. So please pray for no large seizure days (which you are already praying for, but we absolutely need for the next two weeks). This will also be her first flying experience so pray that it goes smoothly.

Thanks to everyone who continues to check this web site and signs the guestbook. Please keep the other families we have met in your prayers to include: Jeffrey who began the diet a month ago, Kylie who has TS and continues to have seizures daily, Jonathan who has been working on getting meds regulated and is having seizures through these. Also pray for their parents and siblings who are trying their best to be positive and encouraging through this all.

To the parents of the above- we are praying for you and checking your caring bridge sites daily- you are all in our thoughts!

We love you all- The Beechers

Wednesday, August 17, 2005 4:45 PM CDT

Hello everyone! Hopefully you are able to see a few of our vacation kid pics now that Jason has added them to the page. Our vacation went well- Jess did great. She is officially off of the diet and we are slowly re-introducing regular foods again. We are seeing some increase in head jerks/drops again, but I guess that is to be expected with coming off of the diet. She is still on four meds, but will be done with one after tomorrow. We are still awaiting approval for our Detroit trip from MA. The nurse at Children's assures us it will be approved on appeal and not to worry. I am amazed at the red tape and hoops you have to jump through just to get the best care for your child. Noah found out his kindergarten teacher's name and is set to start on September 2nd. He will go every weekday in the afternoons. Please pray that this goes well for him. I worry about him right now more than Jess because he is displaying alot of jealousy and agressive behavior towards Jess and us. He says it is because he doesn't get as much attention as Jess and that makes him angry- doesn't that just rip my heart out! So we continue to pray for more peace and understanding for him and us. Thanks so much- we'll keep you posted when we know more. Love to all- The Beechers

PS- The picture with the two girls are our friends' the Reeves children. This is who we stay with in Colorado- they are the best!
The next picture is with Jesse Peterson, a young woman who was in youth group when I was the youth director in CO. Our Jess is her namesake- she is the most amazing young person and we had no question we wanted to name our daughter after her.
p.s.s. To see more vacation pictures go to test.jasonbeecherphotos.com and click on one, or all, of the folders.

Wednesday, August 3, 2005 10:19 AM CDT

Hello to everyone! We are preparing for our vacation to Colorado and are so excited to spend time with friends. Although we are also a bit nervous to see if altitude affects Jess at all, we are confident that our emergency plan from Dr. Ritter will be in place, and help in case of any big seizures. We leave on Friday and return the following Sunday. We are still waiting approval for the PET scan in Detroit, and once we get that we will set up a date. Noah is finishing up summer school and will start kindergarten in about 4 weeks-YIKES! Please pray for him too, as he is exhibiting more anxiety again and we are concerned about his worrying so much. Well, we will update when we return from Colorado. Hope to hear from you all soon. Love, The Beechers

Sunday, July 17, 2005 9:43 PM CDT

So here is the latest news from the Beecher homefront. We heard back from Dr. Ritter's nurse, Vicky on Thursday. At surgical conference the team decided that they believe the next step for Jess is to have a PET scan done. This is another type of brain scan. They will send us to Detroit, Michigan for the scan. Now PET scans are done in ND and MN but they want some more specialized PET tests done. The scan will be done to determine the way Jess' brain metabolizes glucose, seratonin, and another chemical phosph...something. If it shows a hypo- (or slow) metabolism of these things, this could be the reason for the seizures. There is a very specific part of the brain responsible for this metabolism, and would be the focal site of her seizures if she does have a hypometabolism of glucose, seratonin or the other chemical. If this is the case, she would be a candidate for a resection (or removal) of that part of her brain. For as scary as that sounds, or is, it is also highly successful, especially in otherwise healthy children, like Jess. Her young brain would be able to compensate for the part that was removed.

So now we wait again (about a week) for the nurse coordinator at Children's St. Paul to run all of this through insurance and MA, and get an appointment scheduled.

They gave us the go ahead to go on vacation in August to Colorado which was a huge relief, because we all need a break and some time in the mountains with friends to regroup and prepare for what might be ahead.

If the PET scan is normal, they will bring her case back to surgical conference to review other surgical options there may be for Jess.

In the meantime, we are slowly weaning her down from the diet, and increasing her new med, primidone.

We have much research to do, before the scan and the possibility of surgery is here.

Pray for peace with whatever lies ahead for us!
Love to you all,
The Beechers

Monday, July 11, 2005 10:56 PM CDT

Here is the latest on Jess and her epilepsy. Dr. Ritter's office added another med about 1 week ago called primidone, to see if it will help with the clustering we are seeing again. We will know in about a week if it is working. So far, no luck. She is still on the diet, but we are gradually weaning her off of it. (that takes a least one month). We had our pediatrician send a referral to the Mayo also, and heard back that we have an appointment on Sept. 19th (that is the first available). We also have an appt. with Dr. Ritter on August 16th for follow up care.

We heard on Friday that Jess was put on the surgical conference schedule for tommorrow (July 12th). Her case will be presented and the team (surgeons, neurologists, and radiologists) will decide if she is a candidate for any type of surgery. Please pray for us because this is a huge step for us. I am afraid that she won't be a candidate because of her seizure type. If she isn't a candidate I don't know where we go from here.

So we are anxious tonight and pray for more answers. We should hear this week regarding the surgery options.

Thanks for your continued support. We love you all.
Amy, Jason, Noah and Jess

Friday, June 24, 2005 7:42 PM CDT

It has been awhile again, and I apologize for the time span between entries. It seems that life sometimes gets away from us. Here is the latest on Jess. She is hungry and irritable and having seizures daily again. She is still not seizing as much as before the diet, but now we are dealing with continuous irritablility and hunger, as well as a horrible sleep pattern. Sorry this is not a real upper of a report. But now we are waiting again to hear from Dr. Ritter's office. Jess is scheduled for an EEG and clinic visit on the 16th of August. If she is continuing to have more seizing and irritability, they will probably have us come down and admit her for 24 hours on the unit to get a new EEG reading. From there, we decide what the plan of action will be with the diet, meds, etc. Vicky, Dr. Ritter's nurse, is also starting the process for Jess's case to be brought before surgery conference. What that means is that she will have some tests redone, and the surgical team reviews her charts to determine if they believe she is a candidate for surgery. From there, she would have other tests to determine where in her brain, the seizures are originating, and what type of surgery would be done. So we have a lot to think about again, and pray about. Please pray for us to make wise, well-informed decisions, and also for Jess to sleep through the night! Thanks again- Please feel free to pass this web page on to others who would be interested in the updates. Thanks for all of your support and love. The Beechers

Monday, June 13, 2005 9:24 PM CDT

Good evening everyone- we finally heard back from Dr. Ritter's office this afternoon. Jess' blood ketone lab came back at 4.75. A normal child's would be 1-3, and a keto kid can go all the way to 6.0. After talking with the nurse, Vicky, and describing Jess' return seizure activity(which has been about the same- a few clusters daily), Vicky was going to talk to Dr. Ritter about getting an EEG set up. We are at the top of the list if a patient cancels before August. Jess has also been more irritable and having some sleep disturbances, which are prompting them to want to get an EEG sooner, just to see if it is increased seizure activity that is causing these disturbances. So Vicky was going to talk to the dietician and the doctor and see what the plan would be for our next visit to the cities. She also mentioned that it would probably be an inpatient EEG, since they want to watch for 24 hours. So anyway- I will update more when we hear back from Dr. Ritter's office. Thanks so much for your support. - the Beechers

Monday, June 6, 2005 9:11 AM CDT

Hey Everyone,

Another week has gone by and we have seen more of the little jerking seizures again. We had to lower one of her medications because the level was to high and the doctors were worried about the possibility of liver failure. They think that the combination of the diet and the high level of medication was what was keeping her seizure free. Now we need to keep working to find a way to keep her seizure free without overmedicating her. Overall she is still doing much better than she was prior to starting the diet so we are encouraged by that. Thanks to everyone for all the support and prayers over the last few months. We will try to update weekly unless there is a major change.

Jason, Amy, Noah and Jess

Tuesday, May 24, 2005 8:43 AM CDT

I apologize again for the week and a half delay in updating the page. Jess is done with antibiotics and her ears looked clear yesterday at her recheck. We are awaiting her blood ketone level results, which will tell us if there needs to be some adjusting to the diet. She is doing well- we are seeing a few small clusters each day, but still nothing like before- we'll see what that means. We pray that this is not a slow progression back to where she was with the head drops. She is quite clingy and fussy lately, and we suspect teething has something to do with it. She just can't seem to push anymore teeth through. She still has only 6! We are working on walking-but are still finding she wants our hands for security. We will update the page when we find out more about her blood levels. We'll see some of you this weekend at the wedding! until then...

Saturday, May 14, 2005 10:43 AM CDT

Good morning- quick update on Jess. She has a had a few jerking seizures here and there over the past week. Nothing like before, but more than zero. She woke up congested with a "yucky" nose today, so pray that we can get this cold under control. It seems that every time she is ill, she has a "big one". So we pray for no seizures,and will see what the day will bring. We'll keep you posted!

Monday, May 9, 2005 10:39 AM CDT

Good Morning everyone! Sorry I haven't updated for awhile! Jess is still doing very well- we have only seen an occasion small jerk here and there, nothing like before and no more than one or two in a day. The dietician tells us that some kids do not need to be in large ketosis for the diet to work, and that if it seems to be working, we aren't going to be messing with it. We have her blood levels drawn later this week and that will tell us her true blood ketone level. I return to work this evening and am looking forward to it, I have missed my friends from the hospital. Thanks to everyone who was able to be a part of our parents' 25th wedding anniversary celebration on Saturday- it was a great time to see everyone! Thanks again for all of the support you have lent to our family- there are so many thank yous to say that I hope we don't forget anyone! We continue to thank God for blessing us with great family and friends. We love you all. Till next time...

Tuesday, May 3, 2005 8:35 AM CDT

Do I dare say this? Jess has been seizure free for 5 full days! We are cautiously optimistic- she has not reached large ketones again, and so we are a bit perplexed by this all. That is the thing with epilepsy- it is a mystery even to those who study it the most! But we thank God for this gift of 5 days seizure free. We have not seen her myoclonic jerking seizures since her big 6 hour seizure on the 19th. So we are learning to take this one day at a time and thank God each day for the gift of a seizure free day! Thanks for the prayers and support- God is listening! Love, The Beechers

Thursday, April 28, 2005 11:37 AM CDT

YAHOOOO- We are home! We are exhausted but we are home! Jess had a great night of sleep and our pediatrician gave us the ok to go home. Jess will see her next week for follow up. She is still coughing and has a bladder infection which she is on meds for. We are back full speed ahead with the diet and hope to see results in the next month. She has been at moderate ketones for about the last 1/2 day. Now we pray that the diet will work and we will see a reduction in her seizures. We have not seen any head drops or jerks since she was admitted on the 19th. That could be because of the extra meds she received in the hospital, but we hope it is a good sign. We will update the pics later, and want to say a huge thank you to everyone for your notes of encouragement and support and especially for all your prayers. Keep on praying and we will keep you updated! We love you all- Amy, Jason, Noah and Jess

Wednesday, April 27, 2005 6:15 AM CDT

Good morning everyone!

Sorry it took so long for an update.

Jess had a much better day yesterday. More time awake and smiling and less time awake and agitated. She is still having some weird seizure type activity, but Dr. Ritter thinks that it just a new manifestation of her regular seizure activity. At this point we are just happy to see her awake and smiling. She was up and playing for over three hours last night. Yeah.

She is going to be staying on the ketogenic diet, and started back up with the bologna and hotdog diet yesterday which she loves. As of last night she was at a medium state of ketosis so hopefully we can get it up to large and see if it has an affect on the seizures.

Thats it for now. Hopefully the next message will be from home.

Jason

Sunday, April 24, 2005 8:21 PM CDT

Hey everyone! I put a couple of new pictures on the picture page from this trip to the hospital.

Sunday has not been much different than the last few days. She has opened her eyes more frequently, but still slept for most of the day. Once again we were able to feed her real meals today and gave her her medications orally. This means that they were able to take off the IV. Now we just have the monitors and the oxygen left. We are hoping she wakes up soon so we can go home.

Thanks everyone for your continued thoughts and prayers.

Jason, Amy, Noah and Jess

Saturday, April 23, 2005 4:25 PM CDT

Jess is not fully awake yet (although she is trying hard to open her big brown eyes). She ate some peaches and scrambled eggs today and is really digging her bottle again. She is off oxygen and had her NG tube taken out. Pray that she is able to take her meds orally so that it does not have to be re-inserted. Dr. Mutchler says she is not awake yet because her brain is needing lots of time to regroup and recover from the seizure on Tuesday. Hopefully in the next day or two we will see that happen. Jason may update the photos later tonight so you can see some of Jess at this hospital. We'll update you again tommorrow. Thanks for your support and love!

Friday, April 22, 2005 6:17 AM CDT

Well I realized this week how you know you've been at the hospital too much. When we got to the emergency room on Tuesday one of the nurses came up to me, gave me a hug and asked how I was doing. I guess that happens when you've been to the emergency room 8 times. I've been trying to count days, and I think we've been at both Innovis and Childrens more than 10 days each.

Jess had her respirator removed yesterday and has been breathing well on her own. She continues to receive the nebulizer treatments and is slowly recovering from the effects of the medications and Tuesdays seizure. We are now waiting to see how she responds to having RSV once everything has worn off. She started to take a bottle last night and will be able to eat as soon as she wakes up enough to do so.

I want to take a second to thank all the nurses at Innovis for the wonderful job they do in taking care of Jess and making sure that Amy and I or OK. We are so lucky that our support system includes the staff on the 6th floor. We are blessed to have those relationships in this difficult time. Thank you all.

Wednesday, April 20, 2005 4:53 PM CDT

Lastest update: We just found out that Jess has RSV which we suspect brought on the prolonged seizure. She is still on a respirator and will be til tommorrow morning. She will be getting nebulizer treatments and they are closely watching her vitals. She will be sedated until AM at least. Our concern now is that once she is not on the respirator will she cough (because of the RSV) and go into seizures again. So pray that we can get all of this under control and that we don't have to deal with more prolonged seizing. We have moved to room 617 at Innovis. Thanks for the continued support. Until later...

Wednesday, April 20, 2005 11:54 AM CDT

Greetings- Just thought we should add a new note because the last 24 hours have not been the best for Jess. She went into a large seizure at home at 4PM and we came to Innovis by ambulance. They gave her many different meds to stop the seizure activity but she did not stop until around 10PM. She was intubated (which means put on a respirator) to help her breathe because she had so many meds on board that would slow her respirations down. She has an NG tube to give her meds and lipid feedings, and a central line (an IV near her groin) for fluids. We will be here for a few days at least and right now the plan is to keep us here because they can manage her care the same way here as they would in St. Paul. Dr. Mutchler (the pediatric intensivist here) is in contact and consulting with our neurologist, Dr. Ritter at Children's. So for now we wait and let her brain recover and regroup. We are in the NICU right now.
Keep praying and we'll keep you updated!

Tuesday, April 12, 2005 1:51 PM CDT

Happy Tuesday to everyone. Just wanted to give an update on Jess. She is still in small ketosis so the dietician bumped up her fat to carb/protein ratio yesterday. She is still having clusters of seizures daily, but not as many as we were seeing before. Maybe once she is in large ketosis, we will see a bigger improvement. She is returning to normal, activity wise, and is sleeping better through the night! I'll update you more in a few days!

Friday, April 8, 2005 7:04 PM CDT

Good evening everyone- WE ARE HOME-YIPPEE! We got home around 5PM and the kids are thrilled to be home with their own toys and things. We will talk to Dr. Ritter next week to check in on her ketosis level. She is still measuring at small and if by next week we aren't to large ketones the dietician will bump up her ratio of fat to protein/carbs. Then we will watch for two weeks, and if we don't see a significant change in seizure activity we move on from the diet. Next would be to try benzodiazipines (Valium, Ativan), but these drugs have high tolerance and withdrawal symptoms, so we would only try them until she had tolerance to them. After that we are talking surgery, and we don't know enough about that to tell you any more, except that Dr. Ritter says she is a canidate because she is healthy and most of seizure activity is focal in the right side of her brain. Once we are more informed we will let you know. Let's all pray the diet works! She has clustered today and yesterday, but that could be because she is not in large ketosis yet.
I will update this page probably a couple times a week, or as we know more about the success of the diet.

Again thanks so much for all you have done for us this past week. God truly has blessed us with wonderful family and friends. Till next time- Peace to you all.

Friday, April 8, 2005 8:34 AM CDT

Good morning! Jess just finished a great breakfast of banana, sausage, butter and cream and she ate every bite! She eats the butter straight- I guess she takes after her mom since I hear I used to climb onto the table just to get to the butter dish so I could eat it! Rumor is that we are going home today! Of course we are still waiting official word from Dr. Ritter but things are looking good! If you don't hear from us again from the hospital, that means we are heading home and will update you once we get home! We can't tell you all how much we appreciate all of your notes- it has kept us hopeful and at peace! Thanks- we love you all!

Thursday, April 7, 2005 2:54 PM CDT

Sorry it has taken so long today to update the page. Jess had a great night of sleep and her labs looked good this am so she had her IV taken out, and as long as she keeps drinking and peeing she won't have to have it put back in. She is eating full meals, and has not gotten sick yet, so that is positive. We have not seen Dr. Ritter yet today, but are pretty sure we are going home tommorrow, unless something else changes. She is more alert today, but still naps alot, and was blowing kisses and waving to the nurses this noon. Jason is going to update the photos later this evening and will give you an update then on our discharge status. Thanks again for all the prayers and support- can't wait to see you all!

Wednesday, April 6, 2005 3:05 PM CDT

Good afternoon- we are having a good day today. Jess is still sleepy but has eaten both breakfast and lunch today (not all the meat, but everything else.) She still has an IV and her BiCarb?? is lower than yesterday so they are giving her some of that through the IV also. She has good input and output, but her feet are swollen and her BUN is off (for all of you who know what that means, maybe you can explain it to the others who don't know!) They have put a UA bag on her, and want to do some kidney function tests to make sure she doesn't have something going on there. Dr. Ritter is still hoping for a Friday discharge, but we'll know more when the UA is back, and she has eaten a full meal. Jason is heading over to the Family Resource Center now to download some pictures for you all to see, so hopefully when you read this, you can also click on the photo icon and look at some pictures. Until later- thanks for everything. The Beechers

Tuesday, April 5, 2005 7:35 PM CDT

Good evening everyone- I wanted to give you an update from the rest of today. Jess'labs showed low electrolytes and elevated white blood count, so an IV had to be started, which is not her favorite thing, but it has helped. She has also had a slight fever today, and is extremely sleepy so we have spent our time cuddling and holding her. Dr. Ritter discussed the diet with us today and also talked about surgery as an option if the diet doesn't work, but one step at a time. Jess had a 2/3 lunch with little problem, but refused to eat her supper except for the cream, which is sucked down in her bottle. So she will be hungry in the AM! She had 101 head drop/jerk seizures yesterday and more than that in subclinical (seen only on the EEG) seizures. So we have a ways to go, but continue to pray that we have success with this diet!! Good night and we'll talk in the morning!

Tuesday, April 5, 2005 9:06 AM CDT

Good morning to everyone. Jess is doing ok- she had a decent night of sleep and reached large ketones at about 4 AM, which meant that she got to eat a 1/3 meal breakfast of scrambled eggs with cream and butter, and a 1/2 med cup of apple juice. She snarfed it down and wanted to lick the bowl! She is very tired, which is normal for the first few weeks, so she pretty much wants to sleep most of the day. Her blood sugar went below 40 this AM, that's why she got the apple juice. She also has had a couple of bouts with vommitting, which is also normal. So we will see what this day brings. We are meeting amazing families on this unit and are thankful for a place like Children's! Jason is going to try to head over to the Family Resource Center and download some pictures for you all to see. We'll update you all later. Thanks so much- we love you all.

Monday, April 4, 2005 12:35 AM CDT

Just wanted to give a quick update to all. Jess is admitted and currently getting hooked up to the Video EEG as we write this. She is a fighter, our Jess, and lets everyone know when she is displeased! She will most likely be fasting til morning and then we will start the diet. We are on the Children's Pediatric Epilepsy unit. Room 7948 at United Hospital in St. Paul. We will update you more later. Thanks for your love and support. Amy, Jason and Jess

Monday, March 28, 2005 9:40 PM CST

We will be heading down to Children's Hospital in St. Paul on Sunday, April 3rd for a week long hospitalization for Jess to initiate and monitor the ketogenic diet. For those who haven't heard us talk about this diet, it is started by fasting for 24-36 hours, followed by slowing adding back in the high fat, low carb/protein foods that are allowed. The point is for the diet to put Jess into a constant state of ketosis. For unknown reasons, this state reduces, and in some cases, stops seizure activity in children with hard to control epilepsy (like Jess has). So stay tuned for more information about Jess' progress. Thanks for all your prayers and support. Amy, Jason, Noah and Jess

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