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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. 

Friday, June 13, 2014

It's been months

It's been months since I last posted. Not much has changed. Life's busy between work and taking care of both of my babies. Kadyns about to turn 7! Isn't that amazing! Soon I'll have a 7 year old and shortly after that Kyle turns a year old. 

Kadyns doing so amazing. He is making progress in every way possible. His gait trainer he can walk in now, he is up to walking 10 feet in it without getting affiliated. His moments of self abuse has slimed down a lot which is amazing! He also has been in a much happier mood for school and I've received NO phone calls since April about Kadyns behavior which in my eyes is just plan amazing. He is getting bigger and bigger and it's amazing to watch him grow. I look at pictures from last year compared to this and I can see he has gained weight which is good because he needed it! 
I am not really sure how he has gotten so big or where the time has gone but I am ever so thankful that Kadyn is at his healthiest he has ever been. Hospital trips seen to only happen now when e has a seizure and even that has cut down a lot. His last seizure being back in April. Kadyn doesn't have seizures as often but the ones he does have now are stronger than ever, but I think I'll take 1 big seizure every so often compared to 1 big seizure a month. Kadyns very active now too. Rolling all over the place and doing what I like to call his sensory kicks. Many children like Kadyn kick things for sensory reasons. I don't stop Kadyn from doing this but I make it safer. Kadyn also no longer sleeps in his bed as he has found away to roll up and over his railings. Silly boy! 

Kyle, he will be a 1 year old come August. Such a sweet boy he is. It's fun watching him learn his surroundings. He can crawl now and he is cruising furniture. Pretty sure little man will be walking soon. He loves his sippy cups full of water or juice. He is very independent baby. Doesn't like to be cuddled but does enjoy being held from time to time. He loves car rides and going to the store. Strangers make him cry even family members he doesn't see very often make him cry. He is constantly babbling and "talking". He has just grown so much! It's amazing! 
I have two of the most perfect babies any could ask for! Hardly cry, Kyle only cries when he falls hard or when he is hungry. Kadyn just never cries! I've been truly blessed! I couldn't ask for anything better! =)

Monday, March 17, 2014

Life seems busy

Between work and being a mommy I hardly have anytime to update anymore. Do know no news is good news. Kadyns been doing amazing in school. He is getting so big and growing more and more amazing everyday. Learning new things and getting stronger with school. We hardly get any bad notes home from school anymore. His new bus driver says that Kadyn is his favorite as well. Kadyn is also happier on the bus with the new driver. Makes you wonder why Kadyn is doing so much better now that he is no longer with that bus driver. I have no idea. 
Kadyn likes to be cuddled now, not for along time but he enjoys mommy cuddles. It's a good feeling because I never got that from him. Even has a baby he did not enjoy being held. Only one time did I hold him for a long period of time, this was back when he was in nicu and he was having issues with his stats unless I was holding him. I held him for hours. Now I'm lucky to get 5 minutes. I enjoy every moment of it though. Kadyn is sti super vocal, he doesn't talk but makes many noises and can say some words. My handsome prince is amazing! 

Kyle is 7 months old now! Can you believe it? He can sit up unsupported, mimicked noises and sounds, says dada, scoots to get were he wants, rolls from back to front and front back to back. He loves toys and baths and he loves his jenny jumper. He enjoys snuggling and he loves to eat! He still has no teeth yet. He is such a good happy baby. Hardly cries unless he is sleepy or hungry. When he is sleepy he wants his bed to sleep in! We sti don't out Kadyn and Kyle together a lot as Kadyn is rough and he doesn't understand that he can't be rough. Unless I am going to be sitting with them both they play on opposite sides of the room. Until Kyle is older and can protect himself from Kadyns pinches lol. 

Life is good though :) babies are happy and healthy and loved. It's all I can ask for. Working and I love it! I am blessed!