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Friday, July 17, 2015

A life of epilepsy

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

Hope I have forever with him, but I'm too much of a realist to play into the positive people's suggestions that he can out live me. Kadyn is the most amazing kid I know! I love him with all my heart and soul. I just find it fascinating that he has come so far when he was given such an awful prognosis. One thing for sure, I'll cherish everyday that I have with him! 

Saturday, July 11, 2015

I don't update much. my apologies.

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.



Kadyn is an amazing little dude. His epilepsy is still an issue, and we have tried everything. Bottom line is, that his epilepsy can not be 100% controlled and I accept that. I know he will have seizures and the most important thing is that I can now get him out of them at home. He sleeps it off and then its like nothing ever happen. He is an amazing strong boy. I couldn't be anymore lucky then to be his mom! 

He is going to summer school and he loves it!! He is back in his old classroom for the summer and I think he is over the moon for it! He absolutely loves the parapro that is in there, she has always been his favorite! Although I think he can not wait for normal school to be back in session. 

Things are going great with him!


Thursday, February 5, 2015

I don't complain too much but...

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. 



Thursday, January 29, 2015

I can..... WALK

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 amazes me and amazes me more and more every single day. His determination is just so strong. We have been on this journey for 7 years and for most of those 7 years doctors would never believe Kadyn would still be here let along walking. I really have to thank Kadyn's school for everything. For caring and loving him so much!! For pushing him because they believe he could do it! Walking seemed something that was so far away and now, now it's much closer than every before!! I'm very excited and happy to see this!!

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!

:)

Tuesday, December 16, 2014

In need of a van

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.

Thursday, December 11, 2014

VNS surgery.

The date is set. Kadyn will be receiving his VNS on Jan 7th. I took that whole week  off work so I can focus on Kadyn and getting things together for surgery day. Surgery will take 1/2 hour to an hour pending on prep and what not. So we plan on being in the hospital for at least 4-5 hours then coming home. Kadyn's seizures are really tiring him out. He has been so sleepy lately. He naps at school then will come home and nap. It's like his body is just so tired. I am really hoping that this VNS will find some relief for Kadyn. His epilepsy has not been this big of an issue since he was a baby. Now my baby is 7 years old and is having a grand mal seizure once a week. This is not normal for him at all. His shunts checked out just fine, and we do not suspect shunt failure at all. Just his epilepsy getting worse. I believe he has been on the diet for so long now that it's not working as well as it used to. It's sad but the hopes are that the VNS will help that we can sort of change his diet a bit from Ketogenic to a modified atkins diet, this way he can have more food options available to him.
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. :)

Sunday, November 16, 2014

Update on Kadyn

So it's been a rough go lately. Seizures are happening weekly, they are stronger and lasting longer then ever before. I can't seem to get him out of them when he has started. So surgery is in his future now. We are going to place an VNS and start him on a new medication. He has to have an ekg first before starting this medication. I'm not even sure if I 100% want to start him on the medication. With everything changing so quickly im scared. More surgery for Kadyn is scary. It's like he can not go one year without a surgery. It's heart breaking. We will have months of a good go and the. We have months of bad. Kadyn needs a break and I'm hoping the VNS will bring that.