Christmas Presence

Sigh...  Just when you think life can't get any more hectic than it already is....bam! Some ups, lots of downs and some really special moments.  I will share an uplifting story that warmed my heart the other night.  Here's the picture:

I was in the kitchen preparing the girls' meds before bed.  Lauren was watching TV in her pink bean bag and said, "Mom, look."  I turned to look at her and found her pointing to Lindsey who was having a seizure in the red chair.  I ran over and took care of Lindsey and laid her on the floor.  After watching every move I made, Lauren then said to me, "Where is the Strawberry Shortcake blanket?"  I pointed it out to her and the next thing I know, the above picture happened.  She placed the blanket on her sister and made sure she was covered up perfectly as she rested.  My friends, that right there is a picture of love shared by two special little girls.  Some days they get on each other's nerves but, they are inseparable and always looking out for the other.  Well...except for the night before when Lauren was giving Lindsey a "piggyback" ride which came to an abrupt stop when Lindsey fell and chipped her tooth...  Never a dull moment here.

We had our appointment with our new Neurologist with the University of Iowa back in October.  We really like her and are excited to have her as part of our medical team.  She was very thorough with the girls and very intrigued with them being identical twins with Dravet Syndrome.  If all goes according to plan...hopefully by early spring our girls will be enrolled in a clinical study for Epidiolex.  Epidiolex is a pharmaceutical drug made with pure CBD (cannabidiol)  and is the last medication option we have for the girls that can hopefully offer us hope in treating their seizures.  With our legislature passing the unusable cannabidiol law last year, this is pretty much the only way that we will legally be able to get our hands on this medicine.  We are thrilled to hopefully be a part of a very controlled double-blind placebo study.  Each girl will have a 50/50 chance of receiving the real medicine or a placebo.  We will not know and neither will our doctor know which medication the girls will have.  We will have to keep a strict seizure diary and adhere to all of the rules of the study.  It will be quite an undertaking for us but, if it can help our girls...we are all for it.  We have our next appointment with Dr. Joshi on January 30th and hopefully after that appointment we will know more and have a timeline of when we will start the study.

The girls have been doing ok.  We doubled their newest medication over the last couple of weeks.  We are also tapering one medication we think isn't working.  When you have four different medications being used, it is hard to tell which one is helping.  Our goal is to try to get them on the minimum amount of medications without causing more seizures.  Quite an undertaking and pretty much a crap shoot.  If we can lessen the amount of drugs in their system and lessen the side-effects they cause, it is a win/win.  We would appreciate your prayers for our girls' continued safety and for wisdom for treating their seizures.  We are very hopeful that Epidiolex can bring our girls relief from their seizures so they can have a greater quality of life.

A lot has happened with my mom since we last spoke.  It has been a roller coaster ride to say the least.  She spent nearly three weeks in the nursing home in Greenfield.  Unfortunately, it wasn't a very good fit for mom and she was very unhappy.  She did receive good care from the nurses, aides and therapists for which we are thankful but, the environment and the room in which she was placed in made mom miserable (emotionally and physically.)  It was very hard on all of us to see her so upset and to watch her struggle every single day. Luckily, the nursing home in Fontanelle, which we had hoped to get her in originally, had a room open up and we were able to move mom to that facility.  Her first couple of weeks have gone well and we hope and pray she will be comfortable and happy there.  We are all still coming to terms with her diagnosis.  I would ask for your prayers for our family, especially Mom and Dad.  Our family is no stranger to adversities but, this is by far the hardest trial we have ever faced.  I could go on and on....but I just can't right now.

We were blessed to be able to have Mom come to our house for Thanksgiving and we look forward to having her back at Christmas.  Friends, I know I have said this to you many times before but, if you haven't taken it to heart, please do so now.  Never, ever take one moment for granted.

Do you have family or friends that you don't see often?  Visit them.

Do you take time out of your hectic day to call them?  Send them a text to check on them? Maybe just to tell them you love them?  If you don't, you should.

Do you have a friend or loved one that you know is hurting?  Let them know you care and lend them a shoulder to cry on and an ear to listen.

Do you have any regrets or said things you wished you hadn't?   It's not too late to apologize or make a wrong, right.  Don't let your pride get in the way.

I have been guilty of all of the above as I am sure everyone else has too.  We are only guaranteed right now so live life with no regrets.

The Christmas season is now upon us. Just another reminder that it's not all about the presents under the tree.  It's about our presence in each other's lives.

~Merry Christmas~

A New Journey

A week has passed since we received the news of my mom's ALS diagnosis.  She remained in Iowa City until Wednesday of this week and transferred to Younker Rehab at Methodist Hospital in Des Moines.  Although she received great care of the University of Iowa, I am glad to have her and dad back closer to home.  A 15 minute drive is much nicer than a 2 hour drive and I enjoy seeing them everyday.  Mom is getting settled in to rehab and she is getting a good amount of therapy.  She is determined to regain strength in her arm and leg and I know without a doubt she will do everything in her power to do so.  Please continue to pray for my mom (and dad).  It breaks my heart to watch my mom struggle and I can only imagine the pain my dad feels watching the love of his life struggle so much.  They make a great team.  I can think of no greater mentor for my mother to learn how to live with a disability, than my father. I know it is hard for him to watch her struggle yet, he knows firsthand what it is like to do so.  My love and admiration for them both grows stronger every day.  If you would like to visit my mom or send her a note of encouragement, you can reach her at the following address.  We are not sure at this time how long she will be there.  The initial information was 8-10 days...  We have a family meeting on Monday and will hopefully have a better idea then.

• Iowa Methodist Medical Center
  4th Floor Younker #406
  Attn: Rose Sproul
  1200 Pleasant St
  Des Moines, IA 50309-1453

I will share with you the pictures of Delaney with Grandma and Mason with Grandma and Grandpa taken in Iowa City.  They bless my heart...  Although you can't see Mason, Grandma and Grandpa's faces...the picture is priceless.  Lauren and Lindsey will finally be able to visit Grandma this weekend!  They have colored some pretty pictures for her to hang in her room.  I will also capture some photos of them.  

I am trying to remember what has happened with L&L since I last spoke of them.  We traveled to Mayo Clinic for their 3 month appointment with their neurologist.  She decided to increase their new medication by doubling the amount.  We are still waiting on insurance approval for this but, hopefully will get that very soon.  The dose they are on now is not working...if we do not see a decrease in seizures in the next 2-4 weeks on the increase of this medication, we will discontinue it.  This would be very disappointing as this drug is "supposed" to hold great promise for patients with Dravet Syndrome.

Back in September when I gave a testimony to the Legislative Committee for the Cannabidiol Law, I was able to meet a neurologist by the name of Dr. Joshi with the University of Iowa who I had hoped to get the girls to see back when we got the Dravet diagnosis.  Unfortunately at the time it didn't work for us to do so but, after talking with her at the meeting and following up with her via email, I was able to ask if she would be willing to see the girls and enroll them in the clinical study for Epidiolex.  I received blessing from our Mayo doctor to follow with Dr. Joshi and the girls have their first appointment with her on October 24th.  To make this an even better story, Dr. Joshi is starting a clinic at Childserve in Johnston and our appointments will be held there.  So, no more driving three hours one way to see a neurologist.  Now we only have to drive 20 minutes!  You don't know how delighted I am for the travel reprieve.  We have graduated from three days to Pittsburgh to six hours to Rochester to 40 minutes to Johnston!  Dr. Joshi is very knowledgeable about cannabis and CBD. She gave our legislators a crash course on CBD and Epidiolex and I know they all came out of that meeting much more educated than they did when they walked in. If only they all would listen and open up their closed minds... From what I have been told, the girls will qualify for the clinical trial for Epidiolex starting in the spring.  I am anxious to meet with Dr. Joshi and learn more about this treatment option for our girls.   For a little refresher, Epidiolex is a pharmaceutical drug from GW Pharma made with pure CBD from the cannabis plant.  In other exciting cannabis news, Charolette's Web hemp oil will soon be available to be shipped within the United States.  This is exciting news for intractable epilepsy patients around the country!  There are thousands on the wait list to receive this medication!  Meanwhile, the Iowa Cannabidiol Law went into effect in Iowa on July 1, 2014 and as it stands right now, we will not be able to get a medical card for our daughters until at least January 30, 2015.  Don't even get me started on that one....

The girls are struggling with a lot of seizures this month.  I have tried to be better about keeping an accurate count of large seizures.  If I were to keep track of the total of all seizures, I would be doing nothing but keeping track of seizures all day and probably night.  Unfortunately, a week ago today Lauren was standing not 5 feet away from me and went down in a seizure and cut her eye open on her eyebrow with her glasses.  We took a trip to the Urgent Clinic for some glue and thank goodness she did not end up with the black eye the doc and and I were sure she would have.  A day later Lindsey went down much like Lauren, luckily without her glasses on and ended up with a bruised temple... Seizures suck!

On a brighter note, the girls participated in Special Olympics bowling on Thursday.  Unfortunately, Lindsey bowled on lane 10 and Lauren on lane 30.  Made it quite difficult for me to watch them both bowl but, we made it work with frequent trips back and forth.  Lauren placed first in her division and qualified for the state tournament.  Lindsey placed third in her division.  If you know Lindsey you know she is a fierce competitor.  Luckily, she does not understand that Lauren's blue ribbon is better than the yellow ribbon that she received.  She cracked me up when she said, "can Lauren have a yellow ribbon just like me?" In the long run, she did have a higher score than Lauren but unfortunately was placed in a different division.  I was just happy that both girls made it through the mass chaos without a seizure!  If you ever want your heart to be blessed, you should volunteer for a Special Olympics event.  Every singe competitor was applauded and cheered for after every single ball thrown.  There were children there volunteering who made my heart jump for joy.  They loved on the kids and made them feel like true champions.  God bless those kiddos!  We could all learn a lot from the children who look beyond differences and embrace everyone for who they are.  Their parents should be so proud.

It was a week of many tears of sadness and desperation and others shed of joy.  I thank God for His promises.  I hold tight to Joshua 1:9, "Have I not commanded you? Be strong and courageous. Do not be frightened, and do not be dismayed, for the Lord your God is with you wherever you go.”  Although the road we are traveling down is uncertain, one thing is sure...we do not walk it alone.   Don't forget to tell those you love how much they mean to you.  Visit when you can and hold dear the time you have.  We are all only guaranteed right now.

Heartbroken...but not without Hope

I feel the need to write this blog tonight but, the words are so hard to write.  It has been a very long week for our family.  The girls are fine...this has nothing to do with them.  If you have been following along with this blog, you know that my mom's health has been concerning us for a few months.   As you know she has taken some falls over the last few months and has become weaker.  This past Sunday when the kids and I took our weekly trip to Greenfield, my heart broke into pieces as I watched my mom be in so much pain and have even more difficulty walking and her left-sided weakness was more pronounced.   We had consulted with a neurologist a few weeks ago and have been waiting for a follow-up appointment which was supposed to be this coming week.  We couldn't watch her struggle any longer and not have any answers.   After much debate, we took her to the hospital to get her some help.  The Greenfield hospital transferred her to Methodist Hospital in Des Moines where she underwent testing to try to figure out what is ailing her.  We did find out that when she fell on Labor Day, she broke her ankle.  The way we found out is a very long and infuriating story but...I will spare the details.  The broken ankle is the least of our worries.  After many tests which all came back normal, the doctors performed an EMG nerve/muscle test on Thursday.  The results of the test were not normal.  That day, we heard the words no family ever wants to hear.  My mom was diagnosed with ALS - Lou Gerhrig's Disease. They suggested we seek a 2nd opinion and we chose to do so in Iowa City.  Mom was transferred there Thursday night and today after another EMG, the diagnosis was confirmed.  We are heartbroken...no words can even describe how saddened we are.  Mom will remain in Iowa City until we come up with a plan to transfer her to a rehab facility to help her get back on her feet following her broken ankle and injury to her left shoulder/arm from her falls.  Hopefully early next week we will have her closer to home.  Although she is crushed in spirit and her body is weak, I know without a doubt she will fight this battle with every ounce of her being.  Determination is one thing she does not lack.  We have had many laughs this week and shed many tears.  We have met many people who have found out something that I have known for 43 years.... my parents are two of the dearest and neatest people you could ever meet.  My mother is a gem and you cannot help but fall in love with her.  I will share one funny story when one doctor came in to talk to us, his name was Dr. Gherke.  She never quite got his name correct...at one point she called him Dr. Dorothy as that was what she thought he said.  We corrected her and later as he was walking out she said, "thanks, Dr. Jerky."  Priceless!

These pictures were taken today while we were waiting for her EMG test in Iowa City.  I will treasure them always.  Please pray for my parents.  We know the road we are about to go down will be a rough one and we will hold tight to our God who will be there...every step of the way.  We are broken in spirit but, never will give up  hope.  People, treasure every single moment you have with those you love.  Tell them you love them.  Show them you love them.  Never ever take one second for granted.   

Waiting Patiently

Here we are three weeks into the school year.  Everyone has settled into the early morning routine.  Some get out of bed with more excitement than others...  The big kids are keeping very busy with their sports and the girls are keeping busy with the gym.  Scooby has gotten used to the quietness and so have I.  I wish I could say I have gotten great things accomplished but, I cannot.

The girls are doing okay.  Lindsey has had a very rough week and a half.  Seven large seizures in nine days.  Unfortunately, one day she had four and was one shy of going to the ER.  The seizures are coming out of nowhere as usual and the blinks and tremors are frequent.  We are very much on edge at all times.  Just tonight Lindsey was getting water out of the fridge and I heard water pouring on the floor.  I ran to her just in time to catch her before she fell to the floor in a seizure.  It felt like I was running in slow motion...just glad I got there in time, this time.  Have I told you lately that seizures suck?  Lauren was having a particularly crabby day today.  I think she screamed and called me a baby more times today than she has in a long time.  I guess I have been called worse...so I will take "baby."   We see the Neurologist at Mayo in two weeks.  Lots of things to talk about.

My parents have been through the ringer lately also.  Unfortunately, it has been a huge reality check that indeed they are getting older.  I like to think they are invincible.  You know it is hard to see your parents growing older and seeing their health deteriorate.  I got a frantic call from my mom the Friday before Labor Day saying my dad may be having a heart attack.  I told her to hang up and call 911 and I met them at the hospital in Greenfield.  Luckily, Dad did not have a heart attack.  He actually had pneumonia and a pneumothorax.  He was hospitalized for two nights and broke out of there as quickly as he could.  He is a patient man but, he had enough of being hooked to an IV pole.  Mom was at his side the whole time.  Dad has since recovered for which we are very thankful for.  In the meantime, we are still waiting to figure out what is causing my mom to continue to have weakness in her left side.  She is now dependent on a walker for her mobility and has very limited use of her left hand.  She has had a couple more falls since her first fall in July.  The most recent one was on Labor Day when she fell and sprained her left ankle while trying to get up.  She has had an MRI which came back normal.  She has seen a nerve doctor who diagnosed her with mild carpel tunnel and nerve damage in her left shoulder.  No explanation for her left leg weakness.  Yet.  We have been waiting weeks for her to see a Neurologist in Des Moines and luckily only have one more week to wait.  My patience has really been tested waiting this long for her to see a specialist.  I just hate to watch her struggle so much and have no reason known for her to do so.  I want her to be fixed.  Now.  God and I have had many one-sided conversations about this and I wait patiently for His answer.  As if their health scares are not enough, their basement flooded with the recent large rains.  Twice in one week actually and both with sewer backups...the latest the morning Dad went to the hospital.  What a mess.  We have spent many hours there cleaning up and getting ready to get it put back together.  While there I broke my dad's lawnmower and I broke the recliner on their couch.  Luckily, I didn't hurt either of them... I felt horrible.  They took it with such grace but,  I wonder if they gave serious consideration to sending me home?  Lots of discussions have been had in the last couple of weeks that you really don't like to have to talk about.  This is hard.  Your prayers for my parents would definitely be appreciated.  They mean the world to me and I ask for your prayers of protection and healing.  Below is one of my favorite pictures of them together.  In just three short weeks, they will be celebrating their 55th wedding anniversary.  Unconditional love at its finest.  They have been through so many trials together and their love for one another has never wavered.

I have a busy week this week with two testimonies in front of legislators regarding the cannabidiol law.  We have a lot of work ahead of us to educate and open the minds of many close-minded elected officials to come up with a medical cannabis program that we can actually use.  Every day I am reading stories of sweet kiddos who are receiving great results with cannabis oil.  Yet...we continue to wait.  There is a clinical trial of a cannabis drug called Epidiolex that hopefully someday soon we will be chosen to take part in.  If you would like to add that to your prayer list, I would be most appreciative.  The latest I have heard is that it will be spring at the earliest that the next phase opens up.  But, we are not guaranteed to be chosen.  I plan to pester our Neuro at Mayo about it in two weeks.  Meanwhile...I will continue to pester our state legislators.

Lots of coals on the fire, lots of plates to juggle and a glass to keep half full. We will continue to put one foot in front of the other, eyes focused on the future and surrounded by the ones we love.  Life is precious.  Hug those you love and tell them that you love them. And don't sweat the small stuff.  We serve a mighty God and I know the days when we don't have it in us to get through the day, He supplies the grace and the strength we need.

I will leave you with this song that I listen to multiple times a day.  I think we all can relate.  Holding on tight...

  Hurricane

You're spinning out of control again
Your life feels like a sinking ship
You're wondering how it came to this
Is it too late? Is it too far?
For him to reach you and come to where you are

Step out on the edge
Don't be afraid of it
And when you feel the rain
Call His name
He'll find you in the hurricane

Don't back down from the fight
He'll shelter you tonight
Just hold on for the change
Call His name
He'll find you in the hurricane

There's a place, there's a place
You can run when you fall
And it's all come undone
You'll be safe in the raging storm
So just let go 'cause you are held in His arms

Blessings,
Kim

Goodbye Summer

The kids went back to school today and it is also my birthday.  I call that a win win!  No seriously I can't believe I am admitting this but...I wasn't quite ready for the kids to go back to school yet.  This was by far the fastest summer ever and they weren't quite to the point of driving me to insanity.  I could have handled another couple of weeks I think.  But...they are all at school and my house is very quiet.  Scooby doesn't seem to mind the quietness.  He can actually take a nap without being disturbed.  I do think he misses his kids though.  I know I do.  I had two excited kids and two not so excited kids today.  I think you can probably guess who was not excited.  Delaney is in her last year of high school. Sigh...  She is going 1/2 days this year so she is checking out early.  Mason started his freshman year today and has a golf meet after school to boot.  No easing into high school for him.  The girls were very excited to go to school.  They are officially Junior Highers!  They chatted last night at bedtime a little longer than normal about what they are going to do and who they are going to see.  I wish their excitement could have rubbed off on the big kids a little bit.

The girls are doing pretty well right now.  Things settled down after the addition of our new medication.  Adding one med, decreasing two and stopping mid-day meds was quite a transition for them.  It was very discouraging for quite a while but, I am happy to report they are doing much better.  Their moodiness has also settled down some for which we are very thankful for!  They still get P.O.'d every once in a while but, it's not an everyday occurrence like before.  They still argue with each other all the time about who buckled their seat belt first, who gets to go first when playing a game, who gets to take a bath first, who gets to get their blood drawn first, who gets the first piggy-back ride.  You get the point...sometimes being a twin has some downfalls.  You don't always get to be first.  Speaking of arguing... whenever I am on the phone the girls ask who I am talking to and sometimes I will just say Georgina Poopina if I don't want them to talk to the other person on the line.  Well.. Lindsey doesn't believe for a second that I am talking with Georgina Poopina so she will argue with me about it.  I said to her the other day, "why do you argue with me?"  Her response...  "because I am awesome."  Yes....yes you are.

We saw our local neurologist a couple of weeks ago.  He walked in the room and I asked him to just look at them and tell me what he thought.  He said they looked more mature and more alert.  He still had a few concerns about them but, was overall happy with how they are doing.  I am happy to report that he said he would be willing to refer the girls for a medical cannabis card.  When (and if) the rules are approved and the process completed, the girls should qualify.  Still months away... Still too many questions and unknowns to even think about trying to get cannabis oil for the girls but, stay tuned.  I am hopeful by the end of this upcoming legislative session, we will have a real medical cannabis program.  If something could happen at the federal level, that would be huge!  I think times are changing... Hopeful anyway.

Overall we had a good summer.  Matt and I were able to sneak away to Chicago.  It was a much needed and much appreciated weekend away.  We were able to spend it with some great friends and the weather was perfect.  Each of the big kids were able to get some time away as well this summer.  The girls had two different respite caregivers during the week over the summer so they were able to play with them and have lots of fun.  We spent some time at Courage League gym, Childserve for therapy and made many trips for slushies at Sonic.  We swam a few times in the pool and hope to get out there at least one more time.  The wet towel trick is 3 for 3 so definitely glad we found out about it!

So summer has come to a close.  Delaney is playing volleyball this fall and Mason is playing golf so we will enjoy cheering each of them on.  Football season is coming soon and we are looking forward to cheering for our Cyclones at Jack Trice. The girls are taking classes at Courage League gym three days a week and going to therapy another two.  Our calendar is filling up fast and life is about to get really crazy again.  That's okay...I wouldn't have it any other way.  Blessed beyond measure...

Just Out Of Reach

This may be a new record.  Two blogs in less than a week.  I am trying to squeeze this in before the girls get out of bed.  Mason just left for golf league and I am enjoying a cup of coffee and some quiet time before everyone else gets up for the day.  If I didn't treasure my sleep so much, I really should try to do this everyday.

This momma's heart is hurting a bit today.  This change in medications for the girlies is wreaking a little havoc.  So many blinking seizures,staring spells, too many violent seizures...I don't like what I am seeing.  I haven't been able to check yet today but, I am pretty sure the girls will have matching black eyes.  Luckily, Lauren's cut above her eye isn't near as bad as Lindsey's.  The brunt of her injury came below the eye near her cheek bone.  It's not like the big seizures have increased in numbers, they have increased in severity and are literally coming without warning.  We were at the gym last night and Lindsey most likely was over-stimulated and started to fall backwards in one.  I was right there and caught her before she went down.  We rested for a while and walked over to join the rest of the kids and while standing there watching, Lauren went down.  No over-exertion, no over-stimulation...just went down and I was a half second too late...  I can't tell you how frustrating it is to watch your child fall in a seizure and know that you weren't there in time.  I know I can't beat myself up about it but, it is hard not to.  I am their mother, protector.  I hate seizures.  I hate Dravet Syndrome.  I hate that taking my girls to do something that they absolutely love puts them at risk of injury due to their stupid seizures.  I hate that I have to sit here today and get these burdens off my chest so that I can dust myself off and do it all over again today.  But, that's the reality of this life and I have two choices...sit here and drown in my sorrows or suck it up, brush myself off and tackle this new day.  I choose the latter.

Tuesday Matt and I did an interview with KCCI regarding the new cannabis oil law.  I think it will be on next Monday night.  They interviewed a few of us families that could benefit from this new law.  We spent about 30 minutes with them and of course Lauren was having many blinking seizures during the whole interview.  I am thankful they are keeping this story in the news as our legislators need to know that this new law needs to be expanded upon.  Many of us that they were hoping to help will not benefit.  Also, just yesterday a gentleman in eastern Iowa who has stage 4 terminal cancer was found guilty for growing his own cannabis to extract oil  to treat his tumors.  I understand he was found guilty as he did break the law.  Unfortunately, he was not even able to share with the jury his medical need for it so they did not get to hear why he was growing it.  What I hate is that he was having great success treating his disease (it was stage 1 while on cannabis oil) and now he will die because it is illegal for him to do so.  It is time for Iowa to make it legal for all Iowans to use cannabis oil.  If it is good enough for my daughters' seizures, it is good enough for someone with cancer or other life-threatening and debilitating diseases.

On a positive note, my mom is slowly getting better.  We were unable to get some of her testing done due to her pain level so hopefully we can get it done soon.  Your continued prayers are definitely appreciated.  While you are at it, please pray for our girls.  I am hoping that once their bodies get used to all of the med changes going on things will settle down.  As of right now, I am having a hard time believing this new medication is going to be the magic one we have been waiting for.  I think the magic medicine we are waiting for sits just out of our reach...for now.

Summertime

Having time to sit down and blog has proven challenging this summer.  I am attempting to do it while the girls are awake so I am sure I will be interrupted many times.  I can pretty much assure that they will argue about something and my name will be yelled over and over again.  I am going to give it my best effort though.

First, I would appreciate it if you could please pray for my parents.  My mom fell Tuesday morning and bruised her ribs pretty badly.  Luckily she did not break anything but, is in a great deal of pain.  She has had two episodes in the last couple of weeks where she has fallen backwards.  Luckily the first time she was able to catch herself.  Unfortunately she could not the second time.  She has had some other concerning symptoms so she is having some testing done next week to look for a cause.  If you know my mother, you know that she is one tough cookie and to see her in such pain breaks my heart.  I know this is hard on my dad also so your prayers are definitely appreciated.

This last month has been very busy as usual around here.  We took another trip up to Mayo to meet with our Neurologist.  We finally got approval from our insurance to start the girls on their new med.  Before starting it we had to have some initial testing done to give us a baseline.  We started the med this past Sunday.  While we are starting that one, we are decreasing two other meds at the same time so there is a lot of adjusting going on.  The seizures haven't really increased or decreased these first few days so hopefully this will be a smooth process.  Lindsey did have a seizure out of nowhere Thursday evening and cut her eye open with her glasses.  She now has some steri-strips on it and a real pretty black eye.  Have I told you seizures suck? A perk from the adjustment in meds is that we have been able to get rid of their afternoon dose.  We are very happy to be down to twice a day dosing.  I don't think we have had that since they were babies.  

Also this past month we enrolled the girls in an adaptive gym called Courage League Sports.  They absolutely love it!  They are in a super hero exercising class two nights a week and a yoga class on Saturday mornings.  It has been challenging to keep the girls from over-exerting themselves and we have had a few seizures there because of it.  They have so much fun and work up a good sweat!  It is a great way for them to get some extra PT and OT too.   I absolutely love taking them there to get them the social interaction with other kids and to get some much needed exercise.  If you have kids who could benefit from an adaptive gym, I urge you to check them out.  www.courageleaguesports.com. 

("Lauren...you are not in charge!"  "Yes I am!  Mom...tell Lindsey to stop it."  Mom...come here right now!"  "Mom...what color is Squeeze?"  "Mom....can you get me some more milk?"  "Mom...I said it first."  "No, I said it first!"  "Wiener!" (Lauren)  "Shitzel!" (Lindsey)  Just a few of the interruptions I have had in the 10 minutes I have been blogging...never a dull moment, friends!

Delaney and Mason have been keeping busy this summer.  They both spent some time away from home with cousins.  Delaney has been busy with work and volleyball and Mason is in a couple of golf leagues this summer.  They have their schedules for school already and one is excited...the other is not.  Can you guess who?  We had Delaney's senior pictures taken last month and they turned out really cute.  We spent about two hours trying to choose from 50 different poses down to 10.  Now we have to figure out which ones to purchase.  I don't remember it being this difficult when I was a senior.  Speaking of when I was a senior, we had our 25th class reunion last month.  We had 18 of the 39 in attendance which I thought was pretty good.  Only three boys though...  We had a great time sitting around catching up and reminiscing about the olden days.  Good times...

Lauren:  "Mom...come here for a second!"  Me:  "Just a minute."  Lauren:  "I don't have a minute!"  

My dear friend Colene and her kids came for their yearly visit from Indiana last week.  It was so great to see them and spend a couple of days with them.  L&L have a hard time remembering people they haven't seen in a while but, they always remember Colene which I think is so cool.  I wish we lived closer together so we could spend more time together.  I sure do miss them.  Maybe someday...  Below is a picture Colene took of the girls while she was playing Old Maid with them.  Lindsey is so competitive that when she gets the old maid, she hides it so she doesn't end up with it...  If you look really close you will see it between the girls next to the red box.  You can guess which one is Lindsey by the guilty look on her face.  

The next thing we know, the kids will be heading back to school.  Woo hoo!  Oh, did I just say that out loud?  No, it has been a good summer so far.  I have been taking advantage of respite more this summer than I have in years past.  It gives me a chance to spend some much needed alone time with Delaney and Mason and get some stuff done around here.  Matt and I still try to take advantage of our date night also.  Sometimes we are lucky enough to go alone...  We have been swimming a few times.  Unfortunately, they have had seizures more often than not while swimming or just after they get out of the pool.  The last time we swam we tried a new trick to try to keep their body temperature from fluctuating so much when transitioning from the pool to the hot air and it worked well.  We will try it again next time and hopefully it will help us out.  Matt has been ready to take the pool down since the first seizure.  

The chaos has continued but, I have succeeded in getting this blog finished.  I would like to thank Blue's Clues and Eggo waffles for allowing me time to put my thoughts into words.  Until next time...

The Signature, The Senior and The Swimming Pool

Above you will see our two pens that Governor Branstad used to sign the Cannabidiol Bill into law last Friday.  It was a blessing to watch the Governor place these pens into the hands of the children who can possibly be helped by this new law.  It was a blessed day to be surrounded by so many families of children with intractable epilepsy and the legislators that made this new law possible.  In a sense, we have all become one very large family and I am glad to have met many new friends during this journey.  There are many moms who I have great respect for and think of as my own seizsters.  They hold a special place in my heart and it is my sincere hope that one day we will all be standing together again with children who no longer suffer from intractable epilepsy.

Unfortunately, this limited de-crim bill will not make that dream a reality for us right now.  Many of us will not be able to have access to cannabidiol under this new law.  Although this was a great first step for Iowa, it is just a baby step that needs to be expanded upon.  With the restrictions placed on this bill, many families will not even have the opportunity to pursue this medical treatment because they do not have an Iowa Neurologist or if they do have one, they are not willing to refer them for treatment.  Many of us with complicated children must seek treatment out of state from Neurologists who are experts in the field.  Unfortunately, under this new law, out of state Neurologists cannot refer Iowa patients.  If a family is blessed enough to have an Iowa physician to refer them, their next hurdle is finding a state with a medical cannabis program that allows out of state medical card holders to purchase cannabidiol.   The numbers are few and none are bordering Iowa. Or, they must travel to Colorado or Washington to purchase it recreationally, which restricts the amount they can purchase daily.  That brings along another hurdle, traveling with cannabidiol in states that it is not legal to do so and facing criminal charges.  The demand is greater than the supply and many families will need to be placed on waiting lists to get access.  The cost is expensive and dispensaries only accept cash.  Factor in this the time it will take to travel to these states and back home again.  As you can see, the process is going to be a tough one but, some families have run out of options and are willing and able to go through this process to try and help their children.  Although we are desperate to help our girls, we are not able to seek this treatment right now.  I am anxious to hear how families will be able to access this medicine and I hope to hear great stories of how it works for them. What we will do though, is stand together again with all of the above mentioned parents and legislators and fight for a medical cannabis program in Iowa that will allow access IN our state.  This can be done through a strictly run program that will allow treatment for not only persons with intractable epilepsy but, all of those suffering with life-altering and life-threatening diseases.  Just like 22 other states have already done.  It is going to be a huge uphill battle but, we have proven when you work hard and never give up, minds can be changed and progress can be made.  Our kids are worth fighting for and so are many other Iowans who are facing huge medical challenges.  If you have a loved one who could benefit from medical cannabis, I ask you to join us in our fight. If you don't, I ask you to join us for our girls.  They all deserve a chance at a better quality of life.  I know some of you are totally against medical cannabis and that is fine.  I just ask you to ask yourself; if someone you know and love could benefit from this medicine, would you still feel the same?  Would you want that option available to help them have a better quality of life?  I do.  I have a feeling that things are really going to be changing not only on the state level but, on the federal level in the next year or two so I am hopeful this treatment option will be available for everyone who needs it in the United States.

I now move on...

At the end of the day today,  we will officially have a Senior in High School, a Freshman in High School and two 7th graders.  How did that happen?  I'm going to tell you right now, I am an emotional mess even thinking about it.  Just yesterday I was dropping Delaney off at St. Edward's Preschool in Waterloo with a two year old and two newborns.  Now in less than a year, I will be watching her graduate from high school with three teenagers soon to follow.  I thank God for these four blessings but, I wish they could have stayed little just a wee bit longer.  If you are reading this right now and you have small children, savor every moment.  Even the times you are about to pull your hair out and feel like the worst mother in the world, enjoy it all as soon your babies will be teenagers.  I remember I used to think life was so challenging back then and I know it was.  Each stage in your children's lives brings new challenges.  Because we are in the midst of it right now, I think the teenage years are by far the hardest.  Those hormones....I don't like those hormones.  They make sweet children turn into monsters. I liked it back when I could do no wrong and my children adored me.  Now, it seems I can't do anything right and although I know they love me, I sometimes don't feel adored.  I know this time in life shall pass so I will savor every moment..the good, bad and the ugly.

The girls are doing pretty good right now.  The big seizures are coming about 2-3 times per week on average which is pretty good for us.  The little seizures are still too frequent to count and happen daily.  We are waiting on insurance approval for a new seizure drug.  It is not FDA approved and has to be shipped from France.  It has been proven to help patients with Dravet Syndrome so we are hopeful it will help our girls.  The hormones are out of control right now and it is a joke between Matt and I that the "beast" switches between the girls. It seems to switch daily most often.  One will have a great day and the other will be out of control irritable and moody.  Then , the next day they will switch.  It stinks as we rarely get a break from the "beast" but, sometimes we get lucky and they are both happy and sweet at the same time.  The large amount of medications they are on does not help either and I am sure if I felt as crappy as they do, I would be pretty crabby too.  Not to mention the constant seizure activity going on in their brains.

We put the pool up this year after taking the year off last year.  The nightmare was too raw last year from when we were in Pittsburgh and they both had a seizure in the swimming pool within seconds of each other.  That still remains our worst seizure memory and the girls have not swam since that time.  Swimming is by far their favorite thing to do so we decided to give them the opportunity to do so this summer.  We got in for the first time on Saturday and no seizures!  Unfortunately, Lindsey did have one in the pool yesterday.  Many precautions are taken each time they get in the pool.  Never do they get in without a life jacket, the oxygen is right next to the pool and at least two people have to be in the pool with them.  Needless to say, we do not relax while we are in the pool with them but, the joy we see on their faces and watching them have so much fun is worth it all.

I am down to my last two hours of peace and quiet before the summer chaos begins.  I am looking forward to no alarm clock and no deadlines to meet.  I am looking forward to the memories that will be made on this last summer before our first-born graduates high school.  There will be many days that I will want to pull my hair out, I won't feel adored and will most certainly feel like the worst mother in the world.  Yet, I am going to enjoy it all.  I hope my children know that they are loved and adored and when they are all grown up they know I did the best job I could.

Happy Summer!

All We Need is a Signature...

What a month it has been since my last blog.  I am mentally, physically and emotionally exhausted.  We took a trip to Rochester to see a new Neurologist at the Mayo Clinic who we really liked.  We are very excited to have her join our medical team! Unfortunately illness has been running rampant around here.  Four of us had a respiratory infection, five of us had a horrible stomach flu and Lauren was hospitalized for the first time in six years due to seizures.  We are ready for some good health, some warm temperatures and sunshine!

I am sure you have heard the news that the Cannabidiol Act was passed early this morning by both the House and the Senate.  This was a great victory for Iowa as our law makers have stated that cannabis has medicinal value.  It is a great step in the right direction and I am so thankful for the majority of Senators and Representatives who took the time to be educated and make the right choice to allow this to happen.  There are many heroes at the Capitol  that fought very hard over the last few weeks to even make this a reality for us.  Senator Joe Bolkcom and Senator Charles Schneider were the heroes in the in the Senate.  Rep. Rob Taylor, Rep. Bob Kressig, Rep. John Forbes, Rep. Jared Klein and Rep. Clel Baudler scrambled and went up against many obstacles to get this done in the House.  For my Greenfield peeps, a huge thank you needs to go to Clel.  He was the biggest opponent in the beginning, as you know.  I was very upset with him at first at his unwillingness to open his mind.  But, he took time to educate himself on cannabidiol and to listen to us.  He will tell you that this is not medical marijuana, it is hemp oil and he wants to make that clear.  He wanted to do the right thing and he knew that this was it and the time to do it was now. He did it for the kids.  There is still one more hurdle we need to get over before we can truly celebrate a victory. Governor Branstad needs to sign it.  So, the battle has not been won quite yet.

This bill, although a great victory for Iowa, is a very limited bill and they are not making it easy for those of us who need it to get access to it.  There was an amendment added last night from House Majority Leader Linda Upmeyer that states that only a Neurologist who practices in Iowa can recommend cannabidiol.  Although Iowa does have some great Neurologists, those of us with such complicated children have to seek treatment from out of state doctors who are experts in treating intractable epilepsy.  A few moms who fought really hard and had great hope had that taken away from us last night with this amendment.  We do have a Neurologist in Ames who we have seen for a couple of years who has been our local contact.  During my conversation with him last Friday, he led me to believe that he is not willing to refer patients.  Many doctors are hung up on the fact that it is not FDA approved and they are afraid to recommend it because it is not.  He is one of them.  Although he is willing to prescribe our girls a seizure medication that is not FDA approved...  I don't have to agree with his thinking but, I have to respect it.  I will follow up with him again after the dust settles and IF the bill is signed by our Governor.  Another roadblock for us is that we have to travel to another state to purchase it.  This takes time and money. Cannabis oil is expensive in itself.   I have yet to find a family who have very medically fragile children and have both extra time and extra money.

Now I am not trying to be Debbie Downer here friends, I just want to be honest with you that although this is a HUGE victory for the state of Iowa, there is still a lot more work that needs to be done. Rep. Klein said it best when he said, "This isn't a perfect bill, but it is a good bill."  It gives families that have run out of options a chance to help improve their child's quality of life.  It shows compassion to those who need it the most.  Just getting our Dravet diagnosis, there is one, possibly two medications that we need to try that could possibly help our girls first.  I fought so hard for this because I want it to be an option for us when we do run out and I personally met people who have no options left and it breaks my heart. They need this now!  I also believe with all my heart that this medicine needs to be available to all people who suffer from other debilitating diseases.  No child/adult should have to suffer when there is medicine out there that has been proven to help just because it comes with a stigma.  It is my hope that in the next legislative session, a "perfect" bill can be written.  It is also my hope that with half of the United States having at least cannabis oil legislation and the majority a full medical cannabis program, the federal government will do what is right and reschedule cannabis.  Being a Schedule 1 substance, that means it has "no medicinal value."  That is wrong.
 
This whole experience has been an eye opening one for me and I have learned a lot.  I will be honest, I rarely pay attention to what is going on at the Capitol.  I will watch the news and that is about it.  Up until recently, I had only visited the Capitol on my kids' field trips.  I can tell you one thing... I could never be a politician and I could never be a professional lobbyist.  I met many great Senators and Representatives who really impressed me and I met some who really disappointed me.  I was blessed to meet two moms, Sally and Maria that were instrumental in getting this all to happen.  Sally and Maria live in the Des Moines area and they both have children with Dravet Syndrome. They didn't leave when the door was slammed in their face in February.  They continued to fight, urged us all to join with them and together with the help of our amazing children, we won over the House and the Senate.  I am grateful to call them friends and know that we can be there for each other as we all face the same beast in Dravet. I met many other moms and dads who have children with intractable epilepsy and hopefully will be able to continue to hear from them and continue friendships with them.

I am glad that I can put my dress clothes and uncomfortable shoes away and get back to giving my family 100% of me.  After emailing every Senator and Representative I will now need to spend time taking myself off of their newsletter lists that they put me on without my consent...  Some of them asked me to keep in touch with them.  I thought  that was very sweet.  Yesterday, Lauren and Lindsey were made "Honorary Senators" of the State of Iowa.  They were pinned and everything.  They were hugged, shook many hands and had their pictures taken many times in their two trips to the Capitol.  Little did they know, they were part of making history in Iowa.    

Thank you all for your support, kind words and prayers.  Yay for Cannabis Moms!

Compassion for Cannabis

It's been a crazy train around here lately.  Spring break was enjoyed by all.  Mason spent 10 days with his cousins in Kansas and had a blast.  Delaney worked a lot and finished up coaching her club volleyball team this past weekend.  Matt was on vacation the whole week so we enjoyed having him around and he and I were able to sneak away to Kansas City for a long weekend.  It was nice to get away and relax a bit although home was never far from our minds.

We followed up with our local neurologist last week and tried to do an increase on one of their seizure meds.  That did not go well.  Lindsey was completely crazy at times and the blinking seizures were near constant the whole time. She also had a couple of really large seizures that were not typical either.  Lauren reacted the exact opposite as she was more docile than usual but, the blinks were also constant with her. We tried it for a few days and then went back down to our usual dose.  That now means that we are maximized on all three medications they are on for seizures.  We are traveling up to Mayo at the end of April so we will see how our consultation with a neurologist up there goes.  Our local neuro was not comfortable adding in any new drugs and we were perfectly fine with that.  Wish the increase would have worked but, wasn't meant to be I guess.  Our bad days of blinking seizures are increasing again so we need to do something to try and get them under control.  They are very disruptive to their daily living.  Imagine trying to get anything accomplished while your eyes are in a constant blinking action and your brain is constantly firing.  That's what our girls deal with everyday...

I want to thank everyone that showed their support for my last blog regarding medical marijuana. (From here on out I will call it by it's scientific name...cannabis.  That removes the stigma associated by the "M" word.)   I was moved by those who reached out to their elected officials and showed their support for legalization for medicinal use. Our legislators need to hear from their constituents who are in support of this legislation and they need to be educated about the benefits of medical cannabis.   I spent Monday at the Capitol taking part in a meeting with Senators with other epilepsy moms and two war veterans with PTSD.  Each of us had a chance to share our stories with the Senators and answer questions they had.  One mom who was present moved with her husband and daughter to Colorado last year and is currently giving Charolette's Web (cannabis oil) to her daughter.  She has seen at least a 30% decrease in her seizures since starting the medicine.  That is encouraging!!   I was moved by the stories of our veterans who went to war for our country and are now suffering from PTSD.  Their stories of anxiety, nightmares and fear broke my heart.  Listening to the stories of the other moms present who have children with uncontrollable seizures and pain brought me to tears.  Wednesday we took part in Epilepsy Awareness Day at the Capitol.  We were surrounded by many families dressed in purple sharing their stories with the legislators and media.  There was definitely strength in numbers and it was great to be a part of it.  Some very courageous Senators are putting together 11th hour legislation to try to get a bill passed this year that would protect parents who travel to Colorado to get CBD cannabis oil to treat their children.  It is a long shot but, a shot worth taking. The patients would be registered with the State of Iowa, have a prescription from their doctor in Iowa, carry a medical card from the State of Iowa and could legally transport the cannabis across state lines without fear of prosecution.  This is a tiny baby step in the right direction.  Unfortunately, it does not help everyone that needs medical cannabis but, I am confident this will help get the ball rolling for full medical cannabis legislation.   I know our stories are making an impact on these legislators and we are gaining ground on getting bi-partisan support.  It seems the only one who is not willing to listen and get educated  is the Governor, which is infuriating.  He has gone as far as to encourage families to pack up and move to Colorado.  He states he is not willing to sign any legislation for medical marijuana and is giving a list of things he "thinks" will happen instead of allowing people to educate him on how it can work in a safe and regulated way.  He is close-minded and not willing to listen to the now 81% of Iowans who support medical cannabis.  In my opinion, that is completely unacceptable.

Matt and I and the girls had a nice talk with Rep. Clel Baudler and were encouraged to hear that he is showing some support for CBD cannabis oil for treating epilepsy patients.  If you are not familiar with what I mean by CBD cannabis oil, it is high in CBD which is non-psychoactive and low in THC the psychoactive ingredient.  It will not cause the patients to get high and is administered orally, not smoked.  If a recreational drug user got his/her hands on this, he/she would be very disappointed.  This is what we would give our children.  We will continue to work with Clel and ask for his support.

If you want to continue to help our efforts, please continue to reach out to your elected officials and ask for their support.  https://www.legis.iowa.gov/legislators/find  You can call Governor Branstad at 515-281-5211 or contact him by this link. https://governor.iowa.gov/contact/.  He cannot continue to ignore the issue and bid us a farewell to Colorado any longer.  The time is now and we will not stop fighting until this medicine is legalized in Iowa.

I shall now move off my soapbox and leave you with one last thought.  GO CYCLONES!

Medical Marijuana: Legalize It

You had to know it was coming...Kim is going to talk about medical marijuana.  Yep, it is true.  I am 100% for the use of medical marijuana.  If I could, I would give it to my girls today.  But, I can't...legally. If you have been watching the news at all, you know this is a hot topic at the state house and actually around the United States.  Right now, 21 states including the District of Columbia have legalized medical marijuana.  Many other states have proposed legislation for this year.  Iowa WAS one of them until it failed to advance last month.  Yes, our state government found it more pertinent to legalize the use of fireworks than to pass a bill that would help to improve the quality of life of thousands of seriously ill Iowans.  Really?

Now I have educated myself about the use of marijuana to treat seizures and I am hopeful that it can help our girls someday.  I have also read and heard stories about how it helps people with other debilitating and life-threatening diseases.  Did you know medical marijuana has been approved to treat the following conditions in the states that have legalized use?  This is not a complete list by the way.  

1.Cancer
2. Epilepsy
3. Multiple Sclerosis
4. Parkinson's Disease
5. Huntington's Disease
6. Post-Traumatic Stress Disorder
7. Lou Gehrig's Disease
8. Terminally Ill - Hospice Care
9. Chronic Pain

 How many of you know someone who is affected with one of the above mentioned conditions?  Yes, all of you.  You probably know people who are affected with more than one of the above.  You may very well be affected yourself.  Is marijuana going to cure all of them?  No.  Can it help relieve the symptoms of the disease?  Yes.  Marijuana has been found to suppress cancer, reduce seizures, reduce blood pressure, reduce vomiting and nausea, alleviate pain and even inhibit HIV. It is a natural antioxidant, anti-inflammatory and neuro-protective.   Patients needing to use medical marijuana have tried traditional forms of treatment without relief.  For many, there are no other treatments available.

You do not have to smoke marijuana to receive benefits from the plant.  In our case, we would give the girls an oil that is high is CBD - the part of the plant that is not psychoactive (meaning they will NOT get high) and low in THC - the psychoactive ingredient.  Marijuana can be vaporized and also made into a tincture or capsule. There are other cannabinoids in marijuana other than THC that help treat illnesses.  So please do not think that everyone who uses medical marijuana will be smoking joints and getting high.  It is just not true!  I have included the below visual to help illustrate my point.

Many have asked me what they can do to help get this form of treatment legal in Iowa.  First of all, I would encourage you to educate yourself about it.  Many of you I know fully support it.  Many I know do not.  I ask you to educate yourself about it before making a judgement.  Iowa's most critically ill are not looking to get high for fun.  They are looking to have a better quality of life without constant pain.  They are looking to increase their quality of life while they live with a debilitating disease.  When they are in their last days on this earth, they are wanting to be able to spend time with their families in a conscious state, not a drug induced sleep.  We as parents of children with intractable epilepsy want our kids to be able to enjoy life with fewer seizures and not be in a constant state of worry that the next seizure is the one that will take their life. We are not asking for full legalization of marijuana.  Less than 1% of the population will qualify and it will be strictly regulated. We are asking for a program like what is currently being used in New Mexico.  You can easily Google their program to see how it is run if you want more information. Or, you can click here:  www.nmhealth.org/mcp

Second, I am asking you to reach out to your elected officials.  If you support it, please let them know and ask their stance on it. If they are not for it, ask them why. If you have a story how it could personally help someone you know, please share it.  If you need help with this, please let me know.  Many of our legislators are on board. Many others are admittedly uneducated but are willing to listen.  A few are just plain against it.   For my Adair County family and friends, you all know Clel Baudler is one of our biggest opponents.  I have contacted my old neighbor Clel and shared our personal story with him.  His reply to me was "Got your email. Looking it over. Putting it in my file."  (Copy and pasted straight from my email, word for word.)  Are we ever going to see him change his stance?  No, I am sure not.  But, he needs to hear from his constituents who do support it and who may or may not re-elect him this fall. So please, bend his ear and let him know how you feel.   

Please also don't forget to contact Governor Branstad and share your feelings with him. If you do not know who your elected officials are, click below and you can find out: 

https://www.legis.iowa.gov/legislators/find

Lastly, share this blog or information with your friends and family and if they support it, have them contact their legislators.  The last poll I saw showed that 59% of Iowans are for legalizing marijuana for medicinal purposes.  We need to make sure that our legislators hear from every single one of us.  We are getting closer to winning this fight and hopefully in the near future, marijuana will be a legal form of treatment for Iowa's most critically ill.

Kim
 

Final Report

It has been almost a month since we got the phone call from Pittsburgh and I think we have all come to terms with the new diagnosis.  I think Mason summed his feelings up the best when he said, "I feel like we have been living a lie all these years."  I did get a confirmation email shortly after my last post from the genetic counselor telling me that our Geneticist feels comfortable ruling out any Mitochondrial Disease.

We just got the paperwork from Pittsburgh in the mail this week with the final results.  I sure wish I had the brain to understand what all that stuff means...  Good golly some of it is like a foreign language. I can now see it in black and white that she has a positive mutation in the SCN1A gene..  I also see that she has "six other variants of unclear clinical significance in autosomal recessive conditions."  Autosomal recessive disorders are those in which both copies of a gene must have a mutation (one from mom and one from dad).  Lauren has one variant in an oxidative phosphorylation deficiency (mitochondrial issue).  So basically, she has a mutation from one of us in a certain gene but, not the other and therefore it is determined that she is unlikely to have  mitochondrial disease.  Clear as mud, right?   The other five conditions I have never heard of but, two of them mention seizures...interesting.  Will have to Google them.

If you know me at all, you know that I have spent a lot of time on the computer researching Dravet Syndrome and looking for support groups.  I did find a great support group through Facebook that has led me to a couple of local families that are raising children with DS also.  There are also people from all across the US and around the world that are a part of this support group.  It's a relief to know there are others out there that I can ask questions and learn from.  I also was given names of a couple of Neurologists who specialize in Dravet Syndrome.  We have decided to seek treatment from one who is at the Mayo Clinic in Rochester.  I called this morning to get the ball rolling to get appointments set up with her.  I had to put together some information to fax to them and then they will call us to set up an appointment.  The girls used to receive treatment at Mayo in the early years until our Geneticist left  practice there so we are already established patients there.  We are looking forward to seeing what is in store for us next.

The girls are doing okay.  Been a little rough over the last couple of weeks.  Lindsey had the worst seizure day ever two Saturdays ago when she had 10 "big" seizures. Luckily they were all under a minute in duration. I had the phone in my hand to call 911 a couple of times but kept thinking she was going to stop.  I had given her one more and then I was going to call.  Thank God she stopped!  We have gone six long years without a trip in the ambulance and we sure didn't want to have to break that streak.  Plus, had we taken her in they would have loaded her full of drugs and she would have been a big mess afterwards.  By that night she was good as new and back to her ol' ornery self.  The day before that Lauren fell forward in a seizure and proceeded to cut her eyebrow with her glasses, get a black eye and a fat lip all at once.  That afternoon Lindsey had one at school and hit her head on her desk and also had a fat lip and bruise by her eye.  Needless to say, they both looked a bit rough for a few days.  You know what?  Seizures suck!

When I was going through the girls' paperwork getting things together for Mayo, I looked through their medical records from their first two years of life.  It brought back a lot of memories.  Lauren had her first seizure with a fever when she was 5 months old.  Lindsey had her first seizure three weeks later and one day after her 6th month immunizations. It was interesting to go through and read the documentation from the hospital and doctor's office.  It made me think about all of the ambulance rides we took, some up to St. Paul.  That was one long ride...  I remember one time we were riding up there with the lights flashing and by the time we got into Minnesota, my bladder was about to explode.  So, we pulled the ambulance over at a gas station, I ran in and used the restroom and off we went again.  I wonder what the people there thought... I think by far the worst thing we went through in their first two years was the time that Lindsey had a seizure for an hour and a half, was intubated  and was then  life-flighted to St. Paul from Waterloo late one night.  Unfortunately, I couldn't ride with her in the helicopter which totally broke my heart.  There is nothing worse than watching your child being taken away and not knowing what is going to happen when you see her again.  I have a wonderful friend named Colene who drove me to St. Paul that night while Matt stayed home with the kids.  It was the longest drive ever but, I was so thankful to have her with me.  We kept looking up at the sky at every blinking light we saw wondering if that was Lindsey...  She was in the ICU when we got there and was in really rough shape.  Sometime in the wee hours of the night after speaking to the doctor, Colene and I were taken to a utility closet just off the ICU floor where we shared a bed and got little sleep.  We have chuckled over the years about the night we slept in a utility closet.  It was that time while Lindsey was inpatient in St. Paul that we got the results of her muscle biopsy and were told the girls had mitochondrial disease.  Luckily we did not have another helicopter ride and our many ambulance rides were local from then on.  And as I said earlier, we haven't been in an ambulance for over six years.  We have come a long way!

Enough of my ramblings and reminiscing.  I am reminded once again how God has protected our girls over the last 12 years and am so thankful for His grace and mercy. We are blessed beyond measure.  I will leave you with this picture of our precious girls.  Lauren was having a particularly bad day and Lindsey kept watch over her.  We should all be so lucky to have unconditional love like this.

  

 

A Definitive Diagnosis

The phone call we have been waiting for came yesterday...  Lauren's genetic testing results came back from Baylor University.  The news was something we didn't expect and took us by surprise. But, after doing some research and thinking about it, makes perfect sense.  The lab found a change in a gene for a seizure disorder. The gene is SCN1A and this now gives the girls a primary diagnosis of Dravet's Syndrome.  The genetic counselor spent a bit of time with me on the phone explaining the test results and as my brain tried to comprehend what I was hearing and my hand tried to keep up with what she said, I am still trying to sort everything out.  What about Mitochondrial Disease?  From what I have read in the last day, some patients with Dravet's have a secondary mitochondrial dysfunction.  I am waiting to hear back with some clarification about this.  We will receive a report in a couple of weeks explaining all of the results and it will hopefully answer our questions.  Regardless, we have an answer to what the primary problem is.  We also learned that Matt and I are not carriers.  This mutation happened when God made L&L.

If you haven't already, you may be opening a new tab and doing a search about Dravet's Syndrome just like I did.  Dravet's Syndrome is a rare, incurable and severe form of epilepsy.  There are four different types of Dravet's Syndrome (DS) and unfortunately, the girls have the most severe form.  Seizures typically begin in the first year of life and often after six month vaccinations.  Lauren had her first seizure within days of her 6 month vaccination and Lindsey had hers a couple of weeks later.  Initial seizures are febrile (with fever) and seizure types progress from there to include myoclonic seizures (have them), absence seizures (have them) generalized seizures (have them).  Seizures often result in status epilepticus (seizures that do not stop without medical intervention). The girls had more status epilepticus events than we can count in the first five years of their lives.  Seizures do not respond to standard anti-convulsant drugs. Yep...  Rapid changes in body temperature (fever or outdoor heat) cause seizures.  That is huge for us.  Children with DS often also face developmental challenges such as autism or autistic-like characteristics, cognitive and/or communication delays, social skills and behavioral issues.  Yes, they have all of the above.  See why it all makes perfect sense now?

On the bright side, this diagnosis gives us one more seizure drug to possibly try that we have never been able to due to the mitochondrial disease diagnosis.  Depakote is the drug and can be fatal to patients with certain types of mitochondrial disease.  Every neurologist we have seen has said that Depakote would be the perfect drug for our girls but, they would not prescribe it due to the risks.  We will make sure that everyone is on the same page before seeking that treatment, but we all are hopeful to be able to give it a try.  On a not to good note, one drug that the girls have been on for a few years is not indicated for patients with DS because it can worsen seizures so we have started to wean them from that drug.  Unfortunately it isn't something that we can just stop.  The wean will take 8 weeks...

So much to process and think about.  It's not a great diagnosis but, it is a diagnosis.  It's an answer that we have been searching a long time for.  It really doesn't change much in our daily lives as we have already lived the last 11+ years with a rare and incurable disease diagnosis.  We are thankful for the genetic testing that was done to help us get here.  Science is amazing my friends....I cannot even fathom what it will be like 10 years from now.  Maybe there will be a cure for all of these debilitating diseases that are affecting our loved ones.  We can only hope and pray.  Today, ten years down the road and forever one thing will remain constant.  Our God is bigger than any disease and He is the ultimate healer.  Although healing may not come here on Earth, we will all be whole again someday.  That brings me peace.  I hope you have that same peace in your heart.

The journey continues...on a slightly different path.

Changes...

Here it is almost February already...  It seems the older the kids get, the faster the days and years go by.  I can't believe that in October of this year we will have four teenagers in this house!  I am so thankful that our girls are reaching this milestone but, oh my goodness I cannot believe it!  Mason got his learner's permit this past month so the next thing I know, he is going to be sixteen and driving.  Delaney started her first "real" job (aside from being a nanny) about three weeks ago so she is earning some money and learning how the real world works.  She isn't a fan of taxes being taken out of her hard earned wages.  Join the club my dear...

We have been hunkering down during this dreadfully cold winter.  Who even wants to go outside in this cold?  Definitely not I...  I have been keeping busy with some household projects while staying nice and warm.  Back in 2006 Make A Wish did a basement makeover for Lauren's wish.  A wonderfully talented woman came in and painted a huge outdoor scene in our basement as Lauren's wish was to have the outdoors brought indoors due to the girls' heat intolerance and inability to go outside when it is hot.  Here are some pictures of her work.

The Bible verse is our family verse which is Hebrews 11:1 "Now faith is being sure of what we hope for and certain of what we do not see."  Our favorite part is the huge tree and the little Lauren and Lindsey .  In the pic of the two girls, Lindsey is the one on the left and Lauren on the right.  Little known fact...Lauren is in a t-shirt and underwear in that picture.  For years at Jolly Holiday Lights in Des Moines, the picture below of the girls was on display during the event.  We always cracked up while going through JHL wondering if anyone noticed Lauren's lack of proper picture attire.  Look at those sweet little faces and those curls....how I miss those curls!

In the first picture above you will notice Barney and Baby Bop are the first people you see when walking down the stairs to the basement.  Now that the girls are 12, we decided it is time for a new look and Barney, Baby Bop and Zoe on the next wall have been painted over.  It was hard for me to do.  We are keeping the rest of the play room as it is as we can't bring ourselves to paint over the tree and girlies.  I also painted over the brick wall.  That was what I referred to as our Sesame Street wall.  I painted that as the basement was being transformed.  With Barney and Baby Bop gone, it just didn't look right anymore.  I must say though it does look a bit naked when you look downstairs and Barney is no longer greeting us.  The girls have gone downstairs a number of times since I repainted and have not said a word...

Speaking of the girls, they are doing pretty good.  Seizures are still occurring more often than we would like but, they have been healthy and doing well.  They seem to be a little more tired lately than normal, especially Lindsey.  They are keeping us on our toes with their mood swings and cracking us up with their funnies.  We are still waiting for the results of Lauren's genetic testing.  I am guessing they will come back late February or March.  We have a meeting tomorrow morning with Childserve to get them signed up for the Girls Weekend respite time.  They are going to be so excited when they get to go!  I...am going to be a nervous wreck.  My little babies...not so little anymore.  Thank you God for letting them grow up and become young ladies right before our eyes.  Blessed...