Web site about Skyler's stuff

Okay, I just want to warn you that Nikki isn't writing this. It's John, I've decided to interject on our family blog. I still haven't decided if I am going to post on here regularly, or post on the blog I started a couple years ago, but didn't keep up on...

A couple of weeks ago Nikki decided to google "VEPTR", which is the name for the device(s) that Skyler has implanted. She found a web site that provides information about the device, and includes a forum for patients and their families to talk, ask questions, and get support from others going through similar things. The web site started back in 2004, but we just found out about it. It has been really neat to see(pictures) and talk to others we have met through our journey, but hadn't talked to in a long time, and to meet some new people. For anyone who may want to know more about the device, what it does and how it helps, click here. I would also like to post some pictures here but I haven't been able to find where we saved them. The only thing I have found is the Power Point presentation I did as part of a research paper at Weber. I don't know how to post it so everyone can view it, does any know how I could? Or how to pull the pictures out of it?

This web site is great, but I don't think we can handle getting on every day. We have been so blessed that Skyler is otherwise pretty healthy, and that he is so tough, we don't have to think about his issues daily. We focus on them right before and after surgery, but not so much the rest of the time that we are constantly overwhelmed by what he has to go through.

My Significant Other

Jen saw this survey on my SIL's page and I thought it was a cute way to pay tribute to your hubby so sorry Jen, I decided so copy you. John hasn't decided yet on whether he is going to share my blog or keep going on his own that he started a long time ago. I am honored to have a husband like John. Many of you don't know John because he doesn't allow people to really truly know him. You might be surprised but maybe not.

1. What is his name? John Tyson Jeske
2. Who eats more? Definitely John, the guy can't get enough food. He's always eating probably due to running all night being a milkman and all.
3. Who said I love you first? John did and I said okay and shut the door of my apartment as fast as I could. It took me a little longer because I couldn't believe that their were actually good men out there. But I sure was one of the lucky ones that snagged a keeper.
4. Who is taller? He is, but I like it that way.
5. Who is smarter? Well that depends on what your talking about. John is book smart but I am commonsense smart is what we call it.
6. Who is more sensitive? This one is a hard one because we are both sensitive but I still play the tough person and he's just quiet but I believe that were both quite sensitive.
7. Who does the laundry? Definitely him! I hate laundry. Did I say I hate laundry? I would rather clean the whole house than do laundry....
8. Who sleeps on the right side of the bed? Well it depends on the way our room is arranged. But for awhile now John does.
9. Who pays the bills? I do. John doesn't want anything to do with money.... It's frustrating at times but we deal.
10. Who cooks more? John does almost all the cooking. I was smart and taught him how to cook all that I knew how to cook and now he cooks and learns new things but if I had to I probably could manage. Not that it would be any good.
11. What meals do you cook together? We usually don't. I pitch in every once in awhile or I'll cook if he needs to sleep a little longer.
12. Who is more stubborn? I don't know. We both are but in different ways. But if I had to say one then it would have to be him.
13. Who is the first to admit they're wrong? John! I'm not good with sorry or admitting that I'm wrong but I'm working on this.
14. Who has more siblings? John has three older brothers and I only have one brother but if you count all the people I consider to be sisters (or like sisters) then I do.
15. Who wears the pants in the relationship? Me! Work in progress!!!
16. What do you like to do together? I really like talking with John if I can get him to talk. Also we like to sit down and watch TV. We love to hang out with friends too but were pretty boring.
17. Who eats more sweets? This one is a hard one because when I first met John, he was very good about not eating sweets but I corrupted him. So I'd have to say it depends on the time. He's pretty consistent now but mine comes and goes depending on things.
18. Guilty pleasures? Going out to eat! There's probably many more but I can't tell all my secrets.
19. How did you meet? We were set up by my mom and a couple that worked with my mom at IRS. They did karoake and somewhat knew him. So yes, we met at a bar but it's not all bad.
20. Who asked who out first? This is kindof ironical and funny at the same time. I met John just to check him out and so that he could check me out at karoake. I danced with him that night and I left early to get home to Jordan. I was really still dating Jordan's biological father. Well, John didn't ask for my number and then my mom went out of town for a week and he couldn't get my number. When he did finally get my number, Jordan's biological father got sent back to jail and John called me. Great timing huh :)
21. Who kissed who first? He did.
22. Who proposed? He did in an unusual place but he asked my parents to be there. But we both had decided that we wanted to be together before that.
23. His best features? John is amazing. Really, having to deal with are whole situation and having to provide for us knowing that we all are relying on him. He is very devoted and caring. He would do anything for his family. Considering the circumstances he's incredible for what he does and doesn't do. I'm proud of him and his accomplishments. I can't say that it hasn't been hard and there's thing that he needs to work on but don't we all. I love him for him. He is gentle, kind, caring, considerate, romantic (yes, ladies very romantic). I could keep going but I won't.

John,
I just want you to know that I love you. I am so proud of you for all that you have done for me and our family. I wanted to thank you for all you do for me and the kids. Thank you for getting up with the kids in the morning on the weekends, for working extra hard to get them off to school so I don't have to get up, for taking the carpool, for getting me a mug every night before you go to work, for cleaning, cooking, and most of all for being there for me (especially lately) when I need you. Thank you for being willing to do everything and anything for me. That is a quality I'd love to have and most women wish they had a man like you (but sorry, your taken and I'm not giving you up). We have been dealt a hard hand but we have made it this far. I know that together we can do anything. I meant everything I said above. I can't explain to you what the last two weeks have meant to me. (You know what I mean.) You are getting things in order and doing what you've always known. You are a good husband, father, son, and friend. No matter what anyone else tells you. Sure things are hard but you have a way of getting through them so graciously. I love you for what you have brought into my life. I don't know where I'd be know without you. You were my lifesaver at the time. You gave me two amazing children. And you accepted Jordan as your own. Believe it or not a lot of people would not have done what you have done. Knowing we are now an eternal family means more than I can say. It was a long road to get here but I'm glad I did it with you.

Love Nikki

I think I'm losing my mind!

Well, I got the name of the doctor in Denver that maybe could help me revise my implant and do another revision surgery so that my neurostimulation device might work for my headaches. So yesterday I spent about 6 hours looking for him on google and all over the internet. I called hospitals, clinics, friends who lived close to Denver and I even called his home I guess. Well I was very frustrated, sad, overwhelmed, discouraged and went and woke up John. We sat down at the internet and I showed him what I was doing and I swear it wasn't there before but the first thing that popped up on google was this doctor's institute. I immediately called and ask what I needed to do and they told me. I had a little hope. I'm trying to stay under control and not get my hopes up there to much because we just don't know yet. He has to review my file and see if he will even take my case. He is the best in the world at this procedure. He has been to, I believe about 15 or so different countries and lectured on this and other things. People fly from all over the U.S. to have them do their surgery. I hoping that they get contracted with my insurance soon and that I will be flying to Denver by the end of the year to have another surgery. WOW! I never thought that I would be so excited about having another very painful surgery but I guess you have to risk to get the reward and the reward would be worth all the risk if I could have the quality of life. I need to be healthy to raise these three amazing boys that I have been blessed with. I need to be able to be the wife that my adorable husband deserves. I need to be able to be me. The me that is inside just itching to get out. I want to be known as me and not as the sick me or my illness. So please pray for me that this process flys by and that the doctor will take my case. I'll keep you updated.

Friends

My mom emailed this to me and told me that I needed to read this right now. She was right. She knows my struggles in my life right now as well as many others that do too and this was exactly what I needed to hear. I never feel accepted and I analyze everything to much. I look at people and automatically assume that they don't like me or they don't want to be my friend. I am working on this and I am realizing that Heavenly Father puts people in your life sometimes for a short time and for a specific reason and it okay to move on. Here is the email my mom sent to me and it fits perfectly.


GIRLS IN MY CIRCLE

When I was little,
I used to believe in the concept of one best friend,
And then I started to become a woman.
And then I found out that if you allow your heart to open up,
God would show you the best in many friends.
One friend is needed when you're going through things with your man.
Another friend is needed when you're going through things with your mom.
Another will sit beside you in the bleachers as you delight in your children and their activities.
Another when you want to shop, share, heal, hurt, joke, or just be.
One friend will say, 'Let's cry together,'
Another, 'Let's fight together,¢ Another, 'Let's walk away together.'
One friend will meet your spiritual need,
Another your shoe fetish,
Another your love for movies,
Another will be with you in your season of confusion,
Another will be your clarifier, Another the wind beneath your wings.
But whatever their assignment in your life,
On whatever the occasion,
On whatever the day,
Or wherever you need them to meet you with their gym shoes on and hair pulled back,
Or to hold you back from making a complete fool of yourself ..
Those are your best friends.
It may all be wrapped up in one woman,
But for many, it's wrapped up in several...
One from 7th grade,
One from high school,
Several from the college years,
A couple from old jobs,
On some days your mother,
On some days your neighbor,
On others, your sisters,
And on some days, your daughters.

So whether they've been your friend for 20 minutes or 20 years,
AND ONLY IF YOU'D LIKE TO,
Pass this on to the women that God has placed in your life
To make a difference.

Even after reading this I still am trying to grasp the concept that it's okay. But also to have boundaries with those friends so that you don't smother them and that you will appreciate them for what they have done for you and they can appreciate you for what you have to offer them. Thank you to all my friends! Thanks to my mom for sending me this for raising me, for sticking by me when she was my only friend. Even though I didn't have a sister and I don't have a daughter. I have an amazing father who is a great listener and has help me through some of the roughest times in my life. My mother that was there for me when I didn't know how to be a mom. That helped to raise Jordan when I was a single mom; she was always there helping me and supporting me. I am also thankful for an amazing brother that was always there for me to protect me and let me be the tag along. I know for him it was very hard to be my brother but he did it and didn't complain about it... I love you Bret. Your an amazing brother and I want to thank you. I am so glad that we are trying to become closer. I know one day I will get daughter-in-laws and I will treat them like my own. I have been blessed to have many good friends in my life. Some of which have moved on now but they still left an imprint in my life. Others that I talk to every now and then and some of the fortunate few who will pick up the phone and get stuck on the phone for hours. LOL :) I love each and every one of you for different reasons. There are people that have influence my life and reached out to me that have no idea what impression they have made on my life. I am blessed to have wonderful people in my life....

Health Update

We have been hoping for the best with my surgery having to be redone but it looks as though it didn't work again. This is very frustrating and discouraging. I went and saw my doctor on Thursday and he doesn't think that the leads are in the right place again. I spoke briefly to my programmer and I might have an option to go to Denver, Colorado and have the doctor who has performed the most of these all over the body do mine again. We are not quite sure yet but we are leaving our options open. This was quite a big blow for me. It's been hard for me in knowing what the right thing for me to do is. But I want the best of the best if I am going to have this redone again for the 3rd official time the 5th time total. So we'll keep our fingers crossed that it will all work out the way it is suppose to one way or another.