It's amazing 9 years ago when pregnant with my oldest son, I didn't think to worry about anything. Even after getting the news that my son would be born with hydrocephalus, being told he would need surgery to place a shunt and things should be fine. Little did I know when my 7lb 11oz sweet baby boy came into this world that the struggle to live would be much more than I anticipated. Now that all the huge issues have been taken care of and Kadyn is at his most healthiest e has been in years there is 1 issue that we seem to struggle with the most and that is his epilepsy. When he was born he wasn't born with epilepsy. It happened when he got his first shunt infection. His first and probably worst bout of meningitis. He started having seizures then and since then they seem to change and get worse. We have battled this ongoing health issue for years. You name the medication we have tried it and for Kadyn he had the opposite affect. He would have more seizures and more intense seizures while on medication. We have also been on the ketogenic diet for years, which has seemed to help the most. He doesn't have as many anymore. Kadyn also recently had a vns placed, which I am less then impressed with for him, but hay we tried. It's time to just face it, and deal with it. Kadyn has untraceable epilepsy. He will continue to have seizures no matter what we do. No matter the medication, diet restrictions or devices his seizures will pop through. Being able to control them and get them to stop while at home is my only concern. Which I have been able to do with his Diastat. It's all that matters to me. I can't cure Kadyn, I can't fix everything that he has going on with him, and let's be honest I don't know how much time I have with him. I can only
Friday, July 17, 2015
Posted by Sara at 7/17/2015 01:17:00 PM
Saturday, July 11, 2015
I've been preoccupied lately and well I just do not update much. So much is going on! But do know that Kadyn is pretty healthy and happy little guy! He just turned 8! Can you believe it 8 years old! Seems like yesterday I was that scared first time mom, who was about to birth a perfect little boy!
This post I am going to dedicate to one of many of Kadyn's abnormalities. One that I haven't talked about a lot because it really does not bother him. Kadyn has horseshoe shaped kidneys. His kidneys are fused together unlike normal kidneys that are separate. This does not bother him or affect him in anyway. He also has cysts on his kidneys but it was determined that they were just cysts and no further treatment was needed unless they started to bother him. He uses the bathroom just fine so I doubt they are bothering him.
Posted by Sara at 7/11/2015 06:58:00 PM
Thursday, February 5, 2015
Today I was at work, when I get a text from Harvey, "Kadyn puked while on the bus." I told Harvey to keep an eye on Kadyn. He did fall asleep pretty much as soon as he got home. Now what really upsets me is my non verbal 7 year old sat on that bus covered in his own vomit. I am unsure for how long, as I was not here to ask the questions. Why? Why were we not called and given the option to come get him at the next bus stop. Would it have slowed the bus down, probably but I don't care, my son sat in his own vomit. I'm not happy about this at all. Is it because he is non verbal and can not tell me how long he sat there. Why did he vomit? Did he have a seizure that no one saw? Why was this not seen. Why isn't a highly epileptic child not being watched? I totally understand that there are other children on the bus, but I do know the other children medically are not as fragile as Kadyn. I feel so bad for Kadyn. My heart is just shattered into pieces right now. How can anyone just see a child puke and let them sit in it! I do not expect them to clean him up, but call me so I can come get my baby!!!! He maybe just a JOB to you, but he is my whole heart and soul to me. He deserves to be treated a lot better than that. He has been through so much and he has moved so many mountains to get where he is today. He deserves better! So I am getting the number to the highest person I can go to and I am filing a complaint. I will be taking Kadyn to school myself unless I can get his bus switched. Right now I can Hardly think to even type this. My heart is broken and my anger has probably never been this high before, but my fight for Kadyn is stronger and I'll fight for him forever.
Posted by Sara at 2/05/2015 07:57:00 PM
Thursday, January 29, 2015
It's been a very long journey. Many ups and downs, bumps, and road blocks, but after many detours and lots and lots of work, we have finally accomplished something. WALKING!! Yes, Kadyn can walk in his gait trainer! He does it without fuss most times.
Kadyn has not had a seizure since his surgery either. No seizures and they have started turning his VNS up to a low therapeutic level. It has not seemed to have bothered him at all!! Thank goodness!!!
Kyle is starting to come around Kadyn more, Kadyn's movements are so unpredictable that Kyle has been kicked in the face once or twice by Kadyn. It's by accident and Kadyn isn't being mean at all. Kyle has learned though to stay away from his feet. They are best friends and Kyle has even learned to say brother and will point at Kadyn, although this is usually followed by a "No!". Many 1 year olds favorite word.
Can you believe that this was Kadyn 7 years ago?? Boy has he grown sooo much!!! He has grown into a handsome strong boy and I am so proud to be his mom!
Posted by Sara at 1/29/2015 08:24:00 PM
Tuesday, December 16, 2014
We are in real need for a van with a wheelchair ramp. I'm not even sure where to start to get help. Harvey and I can not afford it at all, but in order for me to get Kadyn to and from doctors appointments and to even just get him out of the house other than school. So if any of my followers can give me any information on how to get help for a van please email me. Ilovemykadyn@gmail.com. =) I would greatly appreciate it. Thank you.
Posted by Sara at 12/16/2014 11:24:00 AM
Thursday, December 11, 2014
Other than his seizures Kadyn is doing very well. He is happy and playful in between sleeping. Always smiling and very vocal.
The VNS process is going to be a slow one. Once placed they will give him 2 weeks to heal up and make sure everything is ok. Then they will turn the VNS on in office. Then once a week for about 6 weeks they will turn it up until it reaches the proper setting. He will also have a magnetic wand with him at all times. This wand will send more electric impulses when Kadyn does have a seizure. If that does not work we still have his rescue meds. We are hoping to not have to use them, and also not use the magnet either.
This has been quite a journey these past couple months, but I know things will get better. Kadyn normally has a bumpy road around this time of year and then he turns right back around and is much better. We just have to hang in there and do what is best for him. :)
Posted by Sara at 12/11/2014 01:13:00 PM
Sunday, November 16, 2014
Posted by Sara at 11/16/2014 08:56:00 AM