A Summer to Remember

We have had a lot going on around here the last 4 months!

The first bit of news is that we adopted a puppy on May 12th!

Meet Stella, our now 10 month old puppy. She came to us through AHeinz 57 Pet Rescue via another family who had adopted her as a baby puppy and could no longer keep her.  She was already potty trained, crate trained and knows her basic commands.  I tell you what, that's the way to adopt a puppy!  When I first laid eyes on her, I saw Scooby's eyes and fell in love instantly.  Aside from the eyes, she is nothing like Scooby.  She doesn't steal our food.  She doesn't break into our snack cupboard.  She doesn't bark a whole lot and she loves to give kisses.  She is a riot and is bringing a lot of joy to our family.  She enjoys chasing her tail and as you can tell from the picture above, she has found a way to catch it!  We know that her mom is a Corgi mix and we aren't sure about her dad.  We are assuming he was some type of beagle mix but, she has a super long tail and is lightning fast...  We love her to pieces and are so glad to have her as part of our family.

Since I last posted, Delaney has graduated from high school and left for college.  Say what?  How can that be!  We are so proud of her high school accomplishments and look forward to watching her flourish in college.  She is attending Coe College in Cedar Rapids.  It's pretty weird to have her two hours away but, we still talk a few times a day.  Thank goodness for technology!  I miss having her home. 

Mason spent the first few weeks of summer in Driver's Ed.  He successfully completed it and is now looking forward to turning 16 on September 20th.   As if sending one kid off to college isn't enough, we put another one behind the wheel.  He got his school permit just before school started so it is really nice to not have to haul him around anymore.  If  Mason isn't in the basement playing video games, he can be found on the golf course.  He is now a sophomore and enjoying the golf season at school.  I can't say that he is enjoying school though... Unfortunately, he does not have the same attitude towards school as his sisters.

Lauren and Lindsey had summer school in June and July. They went to weekly therapy and exercised at Courage League Sports throughout the summer.  We had a couple of different respite providers that came in during the week and kept them entertained also.  In other exciting news, our beloved "babysitter" Jewel returned from New Zealand!  She came back in July so we are enjoying having her back with us.  Not looking forward to when she leaves again...  Lauren and Lindsey are now in 8th grade and as always love school.  They are riding the bus home from school which is the highlight of their day.  I am thankful to only have to make one trip out there a day.

In other Lauren and Lindsey news...and this is exciting!   I have not been able to speak publicly about the girls' seizures since the beginning of April which is a lot of the reason why I haven't updated the blog.  The girls were chosen to take part in the double-blind placebo trial for Epidiolex (pharmaceutical CBD oil) through the University of Iowa so we were asked to not share any information on social media.  The girls started the trial on May 10th and finished it on August 24th.  Twice a day for the last 4 months we gave the girls the medicine, not knowing if they had the placebo or actual medicine.  We still do not know which medicine the girls had and will not know until the trial is done across the country (still a few months out).  We had to keep track of every single seizure and made nightly phone calls reporting the seizures.  Having two kids on the trial has been kinda cool.  Their medications looked different and smelled different so we had an idea from the beginning that one was receiving the placebo and one was receiving the real medicine. We were really hoping that is how it would work out given they are identical and it would be beneficial to see if it worked.   It was exciting to see how one girls' large seizures started to decrease as the trial continued while the other girl continued to have the same number of large seizures. Unfortunately, the small eye blink seizures have not decreased.  These seizures are our nemesis and hopefully someday will be knocked out.  On August 25th the girls started another clinical trial but, this time both girls now receive the real Epidiolex!  This trial will last at least one year.  If the FDA does not approve the drug by the end of the year (highly unlikely it will happen that fast), the girls' trial will most likely be extended.  Needless to say, we are thankful to have been chosen for this trial and are hopeful for great results for both girls!  It has definitely been an answer to prayer and we are hopeful that very soon, this treatment option will be available for every person who suffers from intractable epilepsy.  With that said, it is still very important that we continue to press our federal government to reschedule cannabis and for our state to enact a full medical cannabis program.  This one strain of medicine is not going to help everyone and will only be available to patients with certain types of intractable epilepsy.  So, we are not done fighting for access for medical cannabis for those who could benefit and I continue to urge you to reach out to your state and federal law makers asking for their support.
 
We are still grieving the loss of my dear mother.  Do you ever stop grieving the loss of someone you love?  I don't think so...  She has been gone over 5 months now and it still doesn't seem real.  I think I am entering a new phase of grieving.  The reality is really kicking in.  Memories come to mind or a certain song comes on the radio and the tears start flowing.  I lay in bed at night and relive the nightmare of watching her fight until her very last breath.  I still long to call her every day like I used to and wish I could hear her voice again.  Sometimes when I call Dad and he doesn't answer, I get to hear her voice on the voicemail message.  It brings a smile to my face and tears to my eyes to hear her beautiful voice.  She would be so happy to hear that her granddaughters finally have access to medicine that they need.  She would have loved to have seen Delaney graduate high school and be there to send her off to college.  She would be nervous that Mason is driving but, excited for him also.  I miss her so much and long for the day I get to see her again.

So there's four months in a nutshell.  It's been quite a roller coaster ride but, that's what life is.  Ups, downs, sharp turns, not knowing what is around the next corner..always an adventure.

Our Greatest Loss

Where do I begin...it's been a while since I have given thought to blogging.  Not sure what to say or if I even want to say it.  The emotions are still raw...

As you know, Mom lost her battle with ALS on March 17th.  She was surrounded by her family as we watched her take her last breath.  I can only imagine what her entry into heaven must have been like.  We held her hand, kissed her head and told her how much we loved her. We told her it was okay to let go.  She fought hard and she fought to the very end.  She never once said, "why me?" even though I am sure those thoughts were in her head a lot.  I remember the day we received the news of her diagnosis.  She was heartbroken and scared but, the one thing I remember is Mom and Dad hugging and mom saying to him, "I am so sorry."  She was apologizing...how could that be?  That's how unselfish she was.  She always thought of others before herself.  She touched so many lives even during her illness.  Everyone who had interaction with her could not believe how great of an attitude she had when faced with one of the worst diagnosis' a person could face.  One of the most strong and independent women I have ever known was forced to be completely dependent on others for everything.  She couldn't even scratch an itch.  In the end, she was barely understandable as the disease even took away her ability to talk.  But yet...when we couldn't understand what she was trying to tell us, she would just smile, chuckle maybe even, and say "it's ok."  This picture was taken as I was trying to figure out what Mom was saying.  I was frustrated, she was frustrated, but yet she had a smile on her face.  We laughed as I would say words that weren't even close to what she was trying to say.  One thing this disease never took from her was her sense of humor.  This was the last picture taken of Mom and I and I will treasure it forever.  

I will share with you something that brought me great peace during Mom's journey.  Shortly after returning from the hospital after her bout with pneumonia and having decided to enter hospice care, Mom was awoken one night.  Over in the corner of her room were three beings.  Jesus was in the middle with an angel on each side.  Mom said at first she thought she was hallucinating.  She closed her eyes and when she opened them they were still there.  She was very descriptive of how they looked.  Jesus wore a gold crown and they all wore white. They were moving about but never said a word.   She told me later that her first thought was, "I'm not ready to die, Kim is coming in the morning."  Tears...  We agreed that Jesus came to visit to let her know that her place in heaven was waiting for her when she was ready.  About a week before Mom passed away, another angel came to visit her in the same corner.  Friends, that brings me so much peace and I hope it brings you peace too.  Heaven is real and we can have reassurance that Jesus has a place for each and every one of us there if we choose to believe.  I can't wait until the day I get to see her again.  Oh how I miss her.  Every single day she is in my thoughts and I wish she was still here.  But, I do not miss seeing her suffer.  There is nothing worse than watching someone you love suffer and not being able to do a darn thing about it.  She is whole again and honestly, she won the battle because her pain and suffering is no more.  We are trying to adjust to our new life without her.  It will never be the same but, she gave us a great example to live by.  Please continue to pray for our family and especially Dad as he tries to adjust to life without his best friend.

We are now preparing for Delaney's graduation from high school.  I cannot believe I just typed those words.  Wasn't she just born?  She is very excited to be graduating and moving on to her next phase in life.  She has chosen to go to Coe College in Cedar Rapids in the fall.  We are so proud of how hard she has worked to make this a reality!  I am so incredibly sad that my baby girl has grown up but, I am equally as excited to watch her spread her wings and do great things with her life.  She is determined, hard working, passionate, loyal and I am so proud to be her mom.  More tears...  Here she is just before her last prom...beautiful!

The girls are doing pretty well right now.  Their moods change like the wind but, I guess you could say that's typical for teenagers.  The seizures are still happening way too often.  Lauren has been so sweet lately when Lindsey has a big seizure.  She had one the other night and when Lauren left her sister's side for a minute, she turned to her dad and said, "Dad, will you keep an eye on Lindsey for me?"  As much as they get on each other's nerves, their love for one another is so amazing.  I am so glad they have each other to travel this journey with.  The girls have had a hard time understanding that Grandma Rose is no longer with us. They know that Scooby and Grandma Rose are in Heaven.  Lauren asks frequently if we can call Grandma in Heaven.  We sing about Grandma Rose being in Heaven every day.  That somehow seems to help make everything better for a while.  

We are still hoping to have access to cannabis oil soon.  Please pray that we will have that opportunity sooner rather than later.  I'm not sure our legislature is going to come through for us this year.  Or rather they would sure like for us to believe that.  If you haven't reached out to your Representative yet, please remember to do so.  If you would like help in doing so, please let me know and I would be more than happy to help you.  The people of Iowa that want this medical option available need to make their voices heard.  Sometimes it falls on deaf ears; but know that there are some pretty amazing legislators in the gold dome who are working very hard to try and make this a reality for us.  We are so thankful for them.

I will leave you with a little reminder once again.  Do not take one day for granted with those you love and hold dear.  Tell them you love them.  Call them, text them, whatever you need to do.  If something is coming between you and those you love, make it right before it's too late.  We are not promised tomorrow.  Thank you all for your cards, gifts, thoughtful words and for holding our family in your prayers.  We are very grateful for them all.  

Kim

    

Rollin' With the Punches

Sometimes you know, life is hard.  We have been challenged greatly these past few months.  My only description that I have is that it's like we are Weebles.  Remember those round bottom toys? "Weebles wobble but they don't fall down."    Well I think our round bottoms are getting a little bit worn and we are starting to get a little slower coming back up for more.

The girls are plugging along.  We met with our Neurologist a couple weeks ago.  She decided that we need to put them back on the medication that we had stopped a few months back.  The girls were in a tailspin and the seizures were way out of control.  So, we are now back on four seizure medications. Things have settled down some since we started and we are hoping they will continue to get better as we increase.  We talked at length about the CBD clinical trial.  We should receive a phone call from her in early March to start the initial phase of  qualification for the trial.  Just because we fit all of the criteria for the trial does not mean we will be chosen.  There are only 130 patients world-wide for this trial and the qualifications are pretty strict.  We hope we will be part of the 130 so please join with us in prayer that our girls will be chosen.

If you didn't already see it, we did a news story with the Des Moines Register a couple of weeks ago.  Des Moines Register is the link if you would like to read it.  We still have a few Republicans who are content with a law that doesn't work.  Hopefully they will have a change of heart and see the need for change.  There a lot of lawmakers who are working hard for us and we hope that once again their hard work will pay off and we will  have access to this medicine.  Not just for those of us suffering with epilepsy but, also those with other life-threatening and debilitating diseases who could benefit. I made a trip to the Capitol yesterday and had a frank discussion with Clel Baudler.  He is one of the Republicans that are content with the law that doesn't work.  It seems the progress he made last year has been completely lost. To say that I am frustrated with him would be an understatement.  If you haven't already done so, please reach out to your local legislators and ask for their support for expansion of the current law.  Find My Legislator  is the link you can use to access your local information.  Sick Iowans need access to this medication IN IOWA.

Our beloved Scooby passed away three weeks ago.  Although he had been dealing with a health condition for a few years, it was very unexpected.  It's quiet here without him.  We don't have a warm welcome every time we walk in the door.  We don't have a vacuum cleaner to clean up our messes on the floor.  We don't have a warm snuggle buddy as we watch TV.  I miss the times he would pass by me and nudge me with his nose; just because.  He was a good dog and he can never be replaced.

"You just gotta roll with the punches."  Those were the words my dear mother spoke as she laid in intensive care after she developed pneumonia and spent 5 days at Methodist Hospital a couple of weeks ago.  I am happy to report that she is back "home" to Fontanelle following her stay.  Unfortunately, her health continues to decline rapidly.  She is now under hospice care at the Good Samaritan Society and our main focus is to keep her pain under control and keep her comfortable until God calls her home.  We had many hard conversations over the last couple weeks and have shared some very emotional times.  Please pray for Mom's comfort and peace, for strength and peace for Dad as he only leaves her bedside when relieved by one of us kids.  For those of us who are blessed to call her Mom, Grandma Rose and friend.  She is handling this with such grace and dignity, I am in awe of her every single day.  She deserves only the finest mansion heaven has to offer.

Thank you to those who are going above and beyond to help take care of our family while we travel down this path of life.  The meals, the cards, the house cleaning, the words of love and encouragement mean the world to us.  There is no greater thing than to see the love of Christ being lived out by those He loves.  "Not all of us can do great things. But we can do small things with great love." - Mother Teresa

With Love,
Kim

A New Year...

Happy New Year.  How can it be the middle of January already?  On a positive note, we are getting closer to spring.  We hope you all had a great Christmas.  We were blessed spend the weekend before Christmas with 11 of the 12 the Novys and to host my family on Christmas day.  We broke mom out of the nursing home and were so happy to have her, Dad and my siblings join us.  We took family pictures, ate chicken 'n noodles and pie, reminisced, laughed and enjoyed spending the day together.  Here's a picture of our little family with Mom and Dad.  I will treasure this photo forever.

Mom's health continues to decline.  ALS is a very cruel disease and I despise it as much or even more than I despise seizures.  When you see your mom, the strongest woman you know, being taken from you by the relentless beast that is ALS, it breaks your heart into a million pieces.  It's unfair and I wish to God I knew why she has to suffer with this horrible disease.  She is my rock.  She is wise, so very wise.  She isn't afraid to speak her mind and stand up for herself and those she knows and loves.  She is strong and has faced every adversity in life head on.  She is so patient.  She loves unconditionally.  She is as beautiful on the inside as she is on the outside and I am so very blessed to call her Mom.   Please pray for Mom and Dad and our entire family as we go down this path in life.  God has a plan...yeah I know I have heard it all before.  I'm angry and I am broken.  They say "what doesn't kill you makes you stronger."  Well you know what?  I am tired of being strong.  I am strong enough, thank you.

The girls are plugging along.  I would like to say their seizures are better but, they are not. The blinks and small seizures are in the hundreds per day.  Lindsey has had a particularly rough couple of weeks with 8 generalized "large" seizures in one week.  Lauren has been holding steady with 1-2 per week.  They are at the grand age where hormones are flaring up so, we are trying to find a pattern.  We weaned them completely off of one drug.  We have tweaked two of their three drugs that had a little bit of wiggle room.  We are now maxed out on three drugs. Our list of failed seizure medications sits at a dozen...and our last hope of cannabis oil sits just out of reach. We follow up with our Neurologist in two weeks.  We were hoping some of the emotional outbursts would go away by getting rid of one drug...yeah, that didn't happen.  I guess those fits of rage are not only drug side-effects but also a part of the Dravet Syndrome curse and those stinking hormones.  Luckily the good days outweigh the bad as far as outbursts so we are thankful for that!  They are still lovey dovey "most" of the time.  They seem to be able to voice their opinions better as of late.  Lauren told me just the other day, "You need to learn how to stop telling me what to do."  I couldn't help but to look at her and smile because I was so impressed that she had just told me off so eloquently.  Then, I nicely explained to her that we don't' speak to people that way, especially her mother.

Last week we said "see you later" to our beloved respite provider, Jewel.  Jewel has been with us for over 5 years!  She has become an addition to our family and we are going to miss her while she is embarking on a 6 month adventure in New Zealand.  We will see her again in person in July but, will keep in touch through our iPads.  Thank goodness for technology!  We love you, Jewel.

 
As you know the 2015 legislative session just kicked off.  I need to get busy and lose the "winter 10" so I can put on the dress clothes and travel to the Capitol again.  Time to advocate for medicine for my girls and many other suffering Iowans.  It should be an interesting year.  Don't forget, you can help us by contacting your legislators and asking for their support for expansion of the ineffective cannabidiol law.  If you do not know who your legislators are, you can click below.  You can show up at their coffees on the weekends and bring up the issue.  Public awareness and support is growing and we need our families and friends to help us with this issue.  We have educated many legislators but, have many more to educate and get out of the 70's way of thinking.  Cannabis is medicine. Thanks in advance for your help.

Find Your Legislator

Thanks for traveling this bumpy road called life with us.  Looking forward to the day we all walk the streets of gold.

Kim