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

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~