Here we are three weeks into the school year. Everyone has settled into the early morning routine. Some get out of bed with more excitement than others... The big kids are keeping very busy with their sports and the girls are keeping busy with the gym. Scooby has gotten used to the quietness and so have I. I wish I could say I have gotten great things accomplished but, I cannot.
The girls are doing okay. Lindsey has had a very rough week and a half. Seven large seizures in nine days. Unfortunately, one day she had four and was one shy of going to the ER. The seizures are coming out of nowhere as usual and the blinks and tremors are frequent. We are very much on edge at all times. Just tonight Lindsey was getting water out of the fridge and I heard water pouring on the floor. I ran to her just in time to catch her before she fell to the floor in a seizure. It felt like I was running in slow motion...just glad I got there in time, this time. Have I told you lately that seizures suck? Lauren was having a particularly crabby day today. I think she screamed and called me a baby more times today than she has in a long time. I guess I have been called worse...so I will take "baby." We see the Neurologist at Mayo in two weeks. Lots of things to talk about.
My parents have been through the ringer lately also. Unfortunately, it has been a huge reality check that indeed they are getting older. I like to think they are invincible. You know it is hard to see your parents growing older and seeing their health deteriorate. I got a frantic call from my mom the Friday before Labor Day saying my dad may be having a heart attack. I told her to hang up and call 911 and I met them at the hospital in Greenfield. Luckily, Dad did not have a heart attack. He actually had pneumonia and a pneumothorax. He was hospitalized for two nights and broke out of there as quickly as he could. He is a patient man but, he had enough of being hooked to an IV pole. Mom was at his side the whole time. Dad has since recovered for which we are very thankful for. In the meantime, we are still waiting to figure out what is causing my mom to continue to have weakness in her left side. She is now dependent on a walker for her mobility and has very limited use of her left hand. She has had a couple more falls since her first fall in July. The most recent one was on Labor Day when she fell and sprained her left ankle while trying to get up. She has had an MRI which came back normal. She has seen a nerve doctor who diagnosed her with mild carpel tunnel and nerve damage in her left shoulder. No explanation for her left leg weakness. Yet. We have been waiting weeks for her to see a Neurologist in Des Moines and luckily only have one more week to wait. My patience has really been tested waiting this long for her to see a specialist. I just hate to watch her struggle so much and have no reason known for her to do so. I want her to be fixed. Now. God and I have had many one-sided conversations about this and I wait patiently for His answer. As if their health scares are not enough, their basement flooded with the recent large rains. Twice in one week actually and both with sewer backups...the latest the morning Dad went to the hospital. What a mess. We have spent many hours there cleaning up and getting ready to get it put back together. While there I broke my dad's lawnmower and I broke the recliner on their couch. Luckily, I didn't hurt either of them... I felt horrible. They took it with such grace but, I wonder if they gave serious consideration to sending me home? Lots of discussions have been had in the last couple of weeks that you really don't like to have to talk about. This is hard. Your prayers for my parents would definitely be appreciated. They mean the world to me and I ask for your prayers of protection and healing. Below is one of my favorite pictures of them together. In just three short weeks, they will be celebrating their 55th wedding anniversary. Unconditional love at its finest. They have been through so many trials together and their love for one another has never wavered.
I have a busy week this week with two testimonies in front of legislators regarding the cannabidiol law. We have a lot of work ahead of us to educate and open the minds of many close-minded elected officials to come up with a medical cannabis program that we can actually use. Every day I am reading stories of sweet kiddos who are receiving great results with cannabis oil. Yet...we continue to wait. There is a clinical trial of a cannabis drug called Epidiolex that hopefully someday soon we will be chosen to take part in. If you would like to add that to your prayer list, I would be most appreciative. The latest I have heard is that it will be spring at the earliest that the next phase opens up. But, we are not guaranteed to be chosen. I plan to pester our Neuro at Mayo about it in two weeks. Meanwhile...I will continue to pester our state legislators.
Lots of coals on the fire, lots of plates to juggle and a glass to keep half full. We will continue to put one foot in front of the other, eyes focused on the future and surrounded by the ones we love. Life is precious. Hug those you love and tell them that you love them. And don't sweat the small stuff. We serve a mighty God and I know the days when we don't have it in us to get through the day, He supplies the grace and the strength we need.
I will leave you with this song that I listen to multiple times a day. I think we all can relate. Holding on tight...
Hurricane
You're spinning out of control again
Your life feels like a sinking ship
You're wondering how it came to this
Is it too late? Is it too far?
For him to reach you and come to where you are
Step out on the edge
Don't be afraid of it
And when you feel the rain
Call His name
He'll find you in the hurricane
Don't back down from the fight
He'll shelter you tonight
Just hold on for the change
Call His name
He'll find you in the hurricane
There's a place, there's a place
You can run when you fall
And it's all come undone
You'll be safe in the raging storm
So just let go 'cause you are held in His arms
Blessings,
Kim
Tuesday, September 9, 2014
Monday, August 18, 2014
Goodbye Summer
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...
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...
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