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.
