We've been completely without nursing for a while now. In some ways it has lifted a burden, in others, it has just reminded me how important it is to have an extra pair of eyes, ears, and arms around.
The story is long and complicated.
I will probably fill you in soon.
If this post seems extremely disjointed, forgive me. This is just how it has been for a while. I have been having a hard time forming sentences and have to ask people to repeat themselves often.
Thursday, September 15, 2011
Tuesday, September 13, 2011
Practice Makes Perfect
Mom was right. Practice does make perfect in a lot of areas, not just music.
I have been practicing my baking. Now that I live at a totally different elevation (and have a temperamental oven), it is like learning all over again.
I made Pumpkin Cinnamon Rolls and topped them off with Salted Caramel Cream Cheese Frosting. I think that I ate 6 in 24 hours. There is only one left.
and I think that I am going to finish it right now...just preparation for this weekend!
If you like treats as much as me, check to see if someone close to your area is holding a Cookies For Cole bake sale.
Saturday, from 11-2, I'll be selling delicious goodies and bottled water. It's supposed to be a beautiful day!
If you can't make it to a bake sale, you can always donate through our blog. Click on the "Donate" button to the right and all proceeds go to Cole's Cause. You do not need to have a PayPal account.
I have been practicing my baking. Now that I live at a totally different elevation (and have a temperamental oven), it is like learning all over again.
I made Pumpkin Cinnamon Rolls and topped them off with Salted Caramel Cream Cheese Frosting. I think that I ate 6 in 24 hours. There is only one left.
and I think that I am going to finish it right now...just preparation for this weekend!
If you like treats as much as me, check to see if someone close to your area is holding a Cookies For Cole bake sale.
Saturday, from 11-2, I'll be selling delicious goodies and bottled water. It's supposed to be a beautiful day!
If you can't make it to a bake sale, you can always donate through our blog. Click on the "Donate" button to the right and all proceeds go to Cole's Cause. You do not need to have a PayPal account.
Friday, September 9, 2011
Fun In Between The Fight
We managed to have some good times in between all of the headaches and some tears this week. The perfect storm was brewing and there are going to be some major changes in a lot of areas. Starting from scratch. More on that when I have the energy.
On Labor Day, my nurse had a sudden "family emergency" a few hours before her shift. Funny thing, she also tried to call me at 9:30 the night before...it sure was spur-of-the-moment. Hmmm. I decided that it was not going to bring me down and we recruited our friends to go on a drive with us. There is a cute apple orchard a little over an hour away and we were not getting anything accomplished sitting at home. I heard they sold awesome homemade donuts and I wanted one. So we got in the car and left!
Say, "Tacos!"
We had to make a mandatory stop at our old favorite, Cafe Rio. We are so happy it has opened out here! Cole did awesome with all of the noise and even stood in line pretty good. He only laid on the floor twice :) It's the little things!
Even though it was raining, the drive was beautiful and the orchard was quaint. We got some of the most delicious apples and peaches!
I was forced to buy a dozen of the apple cider donuts. They had just sold the last single donut 20 minutes before. Oh well, I shared!
They had a great playground and some cute cut outs to take pictures. We will definitely be going back again, without the rain to see the orchard in its full glory.
Cole really liked playing with the large checkers set. Remember the apple pie tree from McDonalds back in the 80s? They had one! Cole had a 10 minute tonic-clonic as we were leaving. I guess that the drive, a restaurant and an orchard were too much. At least we tried! The donuts were worth it :)
Another awesome thing. We had our good friends Zach and Leslie come to see us, all the way from Texas!
Zach brought Cole an awesome fire truck puzzle. It's 4 feet long!
We were so excited that they stopped by. We have not seen them since the IDEA League conference last year. Zach is one of the oldest people that we know personally with Dravet Syndrome (he is 21). We love him and he truly is the "happiest kid in the world". We love his mom too :)
So in the midst of chaos, we had some bright spots. Friends are so important. We are grateful that we have such wonderful people that we call friends!
On Labor Day, my nurse had a sudden "family emergency" a few hours before her shift. Funny thing, she also tried to call me at 9:30 the night before...it sure was spur-of-the-moment. Hmmm. I decided that it was not going to bring me down and we recruited our friends to go on a drive with us. There is a cute apple orchard a little over an hour away and we were not getting anything accomplished sitting at home. I heard they sold awesome homemade donuts and I wanted one. So we got in the car and left!
Say, "Tacos!"
We had to make a mandatory stop at our old favorite, Cafe Rio. We are so happy it has opened out here! Cole did awesome with all of the noise and even stood in line pretty good. He only laid on the floor twice :) It's the little things!
Even though it was raining, the drive was beautiful and the orchard was quaint. We got some of the most delicious apples and peaches!
I was forced to buy a dozen of the apple cider donuts. They had just sold the last single donut 20 minutes before. Oh well, I shared!
They had a great playground and some cute cut outs to take pictures. We will definitely be going back again, without the rain to see the orchard in its full glory.
Cole really liked playing with the large checkers set. Remember the apple pie tree from McDonalds back in the 80s? They had one! Cole had a 10 minute tonic-clonic as we were leaving. I guess that the drive, a restaurant and an orchard were too much. At least we tried! The donuts were worth it :)Another awesome thing. We had our good friends Zach and Leslie come to see us, all the way from Texas!
Zach brought Cole an awesome fire truck puzzle. It's 4 feet long!
We were so excited that they stopped by. We have not seen them since the IDEA League conference last year. Zach is one of the oldest people that we know personally with Dravet Syndrome (he is 21). We love him and he truly is the "happiest kid in the world". We love his mom too :)So in the midst of chaos, we had some bright spots. Friends are so important. We are grateful that we have such wonderful people that we call friends!
Thursday, September 8, 2011
First Day
Hey, sorry we dropped off there for a little bit. We have been more than a little hectic around here. To add to the list of natural disasters, there is now severe flooding and school has been canceled for the first time ever due to excessive rain. Here is Cole's first day of getting on the bus...it is his favorite part of the day.
The mandatory first day of school picture. Isn't he cute?
We hope it lasts. We've had a couple of hiccups this week regarding the school, nursing, etc. For a moment or two I considered home school (which is what they wanted). I got my fight back and we'll see what happens next week!
The mandatory first day of school picture. Isn't he cute? 
We hope it lasts. We've had a couple of hiccups this week regarding the school, nursing, etc. For a moment or two I considered home school (which is what they wanted). I got my fight back and we'll see what happens next week!
Saturday, September 3, 2011
Dog Shopping
I have been trying to get Cole to understand that he is getting a new doggy. He doesn't have the ability to understand the concept of a service dog, or what this one will do, or that it will go every where with him.
I've just been trying to get him to realize that he is getting a new buddy, and get him excited about it. This has been going on for a long time.
I have had him look at pictures of dogs. I have tried to talk to him about our former family members "The Girls", even showing him pictures and videos of them. He can not remember them. Only recognizes himself in the pictures. Leilani and Lily are a thing of the past for him without constant re-enforcement.
When I ask if he wants a dog, he exclaims, "Yes!" Then continues by saying, "Let's get in the car. Go buy one at the store!" You get everything at the store, silly.
Funny story, as I mentioned, according to him you can get anything by going to the store with monies, even a boat. He told his dad the other day that he wanted a boat. Brian said, "Oh, I wish! I would really like to get a boat too, buddy". Cole answered, "Let's go to store and get one!", totally matter-of-fact. If it were only that easy :)
To say the least, the excitement about the timeline for going to Ohio getting smaller and smaller has been reserved for Brian and I. We are counting down the days. We have even got coordinating Halloween costumes for Cole and his buddy!
Yesterday, I tried again to show Cole the Dogs In Training page to see if it would spark interest. It is like sitting down to a Mail Order Bride website, trying to scan only pictures and a brief profile, to choose a partner for life. Even though technically it is not our choice, it is still kind of fun, and weird all at the same time! Scrolling through the pictures and imagining which dog is going to change your world. I tried this before and he just looks and says, "Doggie!" and runs away to do something else. This time, he looked at every dog. I asked, "Which dog do you like?" He went down the entire page and pointed to every single one, making a comment. He repeated over and over, "I like that one!" or "I want that one". If I scrolled too fast, he would stop me and make me go back. He asked again this morning, "See dogs?" His concentration has improved since being off of the Nano VM and Carnitor. The seizures have started to increase again, but I really think that is because of the Depakote and Topamax. He still doesn't "get" that one of these dogs could be his, but at least he is looking!
Now I have been looking at this page for months hoping and dreaming about our new partner. I have my favorites, but I know that 4 Paws will choose the perfect dog for Cole.
So, every dog on that page is good enough for me :)
After the last few days being from you-know-where, this was a pleasant reprieve.
Which one do you like?
I've just been trying to get him to realize that he is getting a new buddy, and get him excited about it. This has been going on for a long time.
I have had him look at pictures of dogs. I have tried to talk to him about our former family members "The Girls", even showing him pictures and videos of them. He can not remember them. Only recognizes himself in the pictures. Leilani and Lily are a thing of the past for him without constant re-enforcement.
When I ask if he wants a dog, he exclaims, "Yes!" Then continues by saying, "Let's get in the car. Go buy one at the store!" You get everything at the store, silly.
Funny story, as I mentioned, according to him you can get anything by going to the store with monies, even a boat. He told his dad the other day that he wanted a boat. Brian said, "Oh, I wish! I would really like to get a boat too, buddy". Cole answered, "Let's go to store and get one!", totally matter-of-fact. If it were only that easy :)
To say the least, the excitement about the timeline for going to Ohio getting smaller and smaller has been reserved for Brian and I. We are counting down the days. We have even got coordinating Halloween costumes for Cole and his buddy!
Yesterday, I tried again to show Cole the Dogs In Training page to see if it would spark interest. It is like sitting down to a Mail Order Bride website, trying to scan only pictures and a brief profile, to choose a partner for life. Even though technically it is not our choice, it is still kind of fun, and weird all at the same time! Scrolling through the pictures and imagining which dog is going to change your world. I tried this before and he just looks and says, "Doggie!" and runs away to do something else. This time, he looked at every dog. I asked, "Which dog do you like?" He went down the entire page and pointed to every single one, making a comment. He repeated over and over, "I like that one!" or "I want that one". If I scrolled too fast, he would stop me and make me go back. He asked again this morning, "See dogs?" His concentration has improved since being off of the Nano VM and Carnitor. The seizures have started to increase again, but I really think that is because of the Depakote and Topamax. He still doesn't "get" that one of these dogs could be his, but at least he is looking!
Now I have been looking at this page for months hoping and dreaming about our new partner. I have my favorites, but I know that 4 Paws will choose the perfect dog for Cole.
So, every dog on that page is good enough for me :)
After the last few days being from you-know-where, this was a pleasant reprieve.
Which one do you like?
Friday, September 2, 2011
Stories Of Hope
Cole's story (a piece of it) is now being shared on Dravet.org!
You can go here to see it along with some of our other friend's stories.
Dravet.org, Dravet Syndrome Foundation and ICE Alliance are great resources for parents, doctors, families and patients. There are links to all of them on the sidebar of our blog.
We are so grateful to be a part of all of these networks.
You can go here to see it along with some of our other friend's stories.
Dravet.org, Dravet Syndrome Foundation and ICE Alliance are great resources for parents, doctors, families and patients. There are links to all of them on the sidebar of our blog.
We are so grateful to be a part of all of these networks.
Thursday, September 1, 2011
The OTHER Cole
Right now, our good buddy Cole K is having brain surgery.
He is in great hands with Dr Bingaman at Clevland Clinic, who also performed our friend John's surgery last year.
He has been diagnosed with Infantile Spasms and they are taking out his left Temporal and Occipital lobes. This is a very complicated surgery.
Cole and his parents are in our thoughts and prayers today. We've been through some tough stuff together, but this is the most intense. They are SO brave...true warriors! We just want the best for our Cole, and theirs.
You can read the OTHER Cole's story here, or his link is on the sidebar of our blog.
He is in great hands with Dr Bingaman at Clevland Clinic, who also performed our friend John's surgery last year.
He has been diagnosed with Infantile Spasms and they are taking out his left Temporal and Occipital lobes. This is a very complicated surgery.
Cole and his parents are in our thoughts and prayers today. We've been through some tough stuff together, but this is the most intense. They are SO brave...true warriors! We just want the best for our Cole, and theirs.
You can read the OTHER Cole's story here, or his link is on the sidebar of our blog.
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