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.