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!