The kids went back to school today and it is also my birthday. I call that a win win! No seriously I can't believe I am admitting this but...I wasn't quite ready for the kids to go back to school yet. This was by far the fastest summer ever and they weren't quite to the point of driving me to insanity. I could have handled another couple of weeks I think. But...they are all at school and my house is very quiet. Scooby doesn't seem to mind the quietness. He can actually take a nap without being disturbed. I do think he misses his kids though. I know I do. I had two excited kids and two not so excited kids today. I think you can probably guess who was not excited. Delaney is in her last year of high school. Sigh... She is going 1/2 days this year so she is checking out early. Mason started his freshman year today and has a golf meet after school to boot. No easing into high school for him. The girls were very excited to go to school. They are officially Junior Highers! They chatted last night at bedtime a little longer than normal about what they are going to do and who they are going to see. I wish their excitement could have rubbed off on the big kids a little bit.
The girls are doing pretty well right now. Things settled down after the addition of our new medication. Adding one med, decreasing two and stopping mid-day meds was quite a transition for them. It was very discouraging for quite a while but, I am happy to report they are doing much better. Their moodiness has also settled down some for which we are very thankful for! They still get P.O.'d every once in a while but, it's not an everyday occurrence like before. They still argue with each other all the time about who buckled their seat belt first, who gets to go first when playing a game, who gets to take a bath first, who gets to get their blood drawn first, who gets the first piggy-back ride. You get the point...sometimes being a twin has some downfalls. You don't always get to be first. Speaking of arguing... whenever I am on the phone the girls ask who I am talking to and sometimes I will just say Georgina Poopina if I don't want them to talk to the other person on the line. Well.. Lindsey doesn't believe for a second that I am talking with Georgina Poopina so she will argue with me about it. I said to her the other day, "why do you argue with me?" Her response... "because I am awesome." Yes....yes you are.
We saw our local neurologist a couple of weeks ago. He walked in the room and I asked him to just look at them and tell me what he thought. He said they looked more mature and more alert. He still had a few concerns about them but, was overall happy with how they are doing. I am happy to report that he said he would be willing to refer the girls for a medical cannabis card. When (and if) the rules are approved and the process completed, the girls should qualify. Still months away... Still too many questions and unknowns to even think about trying to get cannabis oil for the girls but, stay tuned. I am hopeful by the end of this upcoming legislative session, we will have a real medical cannabis program. If something could happen at the federal level, that would be huge! I think times are changing... Hopeful anyway.
Overall we had a good summer. Matt and I were able to sneak away to Chicago. It was a much needed and much appreciated weekend away. We were able to spend it with some great friends and the weather was perfect. Each of the big kids were able to get some time away as well this summer. The girls had two different respite caregivers during the week over the summer so they were able to play with them and have lots of fun. We spent some time at Courage League gym, Childserve for therapy and made many trips for slushies at Sonic. We swam a few times in the pool and hope to get out there at least one more time. The wet towel trick is 3 for 3 so definitely glad we found out about it!
So summer has come to a close. Delaney is playing volleyball this fall and Mason is playing golf so we will enjoy cheering each of them on. Football season is coming soon and we are looking forward to cheering for our Cyclones at Jack Trice. The girls are taking classes at Courage League gym three days a week and going to therapy another two. Our calendar is filling up fast and life is about to get really crazy again. That's okay...I wouldn't have it any other way. Blessed beyond measure...
Monday, August 18, 2014
Thursday, July 10, 2014
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.
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.
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