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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. =) 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. 

Thursday, September 11, 2014

Lack of posts

WellI haven't really wrote in my blog. Maybe it's lack of time, or perhaps it's that I care for two children on top of working and caring for a house. Perhaps I am just out of ideas. I don't know, but I wanted to make my readers aware that September is hydrocephalus awareness month. This is the main condition that Kadyn deals with. With a shunt to keep the fluid draining from his brain, he has under gone to date over 30 surgeries. Thankfully in the past four years this shunt system has been working for him. It's been 4 years since his last revision and I am ever so thankful for that. He still has seizures and although they are still not as often they are changing and becoming stronger as he gets older. I was told this would happen. His rescue meds barely get him out of seizures anymore but thankfully there are still months between seizures. Among his many other health issues those are the two biggest issues. Can you believe he is 7 years old already? I often wonder how many followers he has, that are still following his story ( or lack there of due to my laziness in updating my blog) from back when I first started before he was even a year old. I am thankful for eveyone who has helped and or listened or read Kadyns story. He has been through a lot and he still goes through a lot daily. Therapies, special schools, the need to be cared for 24/7. His journey to get where he is today has been a long one, but totally worth it to see his smiles. He is so happy! 

I am going to try and update my blog more often. Now that I have two children and that I am working it proves to be a tad difficult. I love my boys! With that said I leave you with a picture of both of my boys when they at the age of 1. 

Wednesday, September 10, 2014

Sometimes words hurt

I strive to not allow words of others hurt me or anger me. Sometimes this just is not possible. Especially when it comes from someone you don't even know. 

The other day while I was at work a customer who comes in frequently stopped to talk to me. She asked about another co worked of mine who used to get Kadyn on and off the bus for school. This lady looked me right in the eye and asked me if my son was retarded. I was not sure how to even respond to that so I walked away.  I was so angered and bothered by this woman's remark that I was shaking. Normally the word retard doesn't bother me at all, but I think the fact that this customer isn't one of my favorites to deal with didn't help at all. 

With that being said things have been good with Kadyn. He is growing and getting smarter all the time. He actually moved up in classrooms in school which is a super good thing. He is using his gait trainer and making all of his goals for the year! I'm so thankful for the school he goes to. They are soo good to him and for him. 

Kyles getting bigger! He is learning and growing everyday. He can walk now but he is stubborn and chooses to still crawl instead of walk. He is a year old already! It seems like yesterday he was just born! 

Friday, June 20, 2014

1 year Chiari decompression surgery anniversary

It's been 1 year since Kadyn had the biggest surgery yet. It's been a roller coaster and if I'm being honest many backwards step and hardly any going forward. Kadyn lost a lot of abilities after this surgery. His willingness to eat yogurts and soft foods. Him liking his chair is no longer. His seizures haven't got worse actually he isn't having as many as he was before. He tends to hit his head a lot more now and he also hits the back of his neck a lot. July 2nd he goes in for an appointment with his neurosurgeon and I am hoping to explain all of this to dr.ham and get some kind of answers, thoughts or game plan to see if there is something causing him pain. 

Kadyn still has more happy days than bad days but I want him to be more comfortable everyday. Also eating foods is a huge issue. He was doing so good and the. BAM done. Sadly I thought this surgery would set him back some but I didn't think a year later we would still be struggling to "heal". Hopefully after we see dr. Ham we can get some answers. 

Kyle has learned to "dance" it's the cutest thing ever to watch him sit and move his upper body and arms while he dances. I have tried to video it but he sees my phone and stops. He is such a turd sometimes. He is getting so big! It's hard to believe in a few months he will be a year old. 
I love how he has my blue eyes but his daddy's tan skin complexion. I like to think both my babies look just like me though. =). 

Kadyns seizure

Saturday night, well more like early Sunday morning, Kadyn had a seizure. I could sense it was coming. It had been awhile since his last one and I knew it would happen any day. I didn't expect it to happen that night while I was enjoying a night out with friends but, it did. I rushed home to find Kadyn on the floor with his daddy sitting next time him. A wash cloth on his forehead and Kadyn laying next to blood on the carpet. Harvey said Kadyn spit up some blood and had a fever of 102, So I decided to pack him up and take him to Children's hospital. We arrived and things went quick and we were taking back to be seen. Kadyn was super postictle so they hooked him up to monitors and watched him. Here is where I got super angry. Now Kadyn has been hitting his head and the back of his neck a lot. These are things that I mentioned to the dr. He called neurosurgery later and told then and the Rn asked if I felt it was the shunt. I felt it's something that we needed to rule out this time and really the only reason I brought him in was to do so. But my opinion was squashed and blood work showed no sign of infection or anything so we were sent home. Great. 

Yesterday Kadyn slept all day. Now this isn't his normal after seizure behavior at all. Normally he is back to the happy vocal crazy Kadyn we all know. He slept through the night woke up maybe for an hour or two then slept till 7pm that night when I woke him. He was then back to sleep by 10pm. He is sleeping a lot which isn't normal at all. I truly feel he needs his shunts checked. Something I plan on doing. I was going to go into clinic today but I'm going to give him a couple days to recoup from this seizure and hopefully maybe see a change? So far today he has been sleepy and quiet. It's so hard watching him to through this. He has an appintment with NSG on July 2nd (his 7th birthday) so I'm keeping that because I want him to have an MRI. I think his Chiari needs to be looked at as well. Just start checking things off the list. The poor baby has so much going on up in his head that it's no fair! Hopefully we will have answers soon. Sadly if he has surgery he will miss out on some summer school, I just don't think summer school will be in the cards for him ever! So far he has missed every year. Ugh.