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...