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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! 

Sunday, March 9, 2014

It's that time of the year again!

Walk Season is here! Help out stomp, roll and walk out hydrocephalus! Kadyn has a team this year and we are hoping nothing gets in the way of us going. Even so you can still donate towards the Hydrocephalus Foundation!

Kadyn would appreciate any donations!

Also if you donate, comment on here and let me know you donated. I will then after the Walk (which is in August) have Kadyn choose a name with his activation switch and that person will receive a tshirt from me! :)

Here is the link to his team page to donate :)

Thank you!!!

Sunday, February 16, 2014

Kadyn has a shunt?

With Kadyn's hydrocephalus comes his shunt, or shall I say shunts. Kadyn has 2 shunts. It's been almost 4 years since Kadyn's last shunt malfunction. That is such a blessing. He has been a true miracle. I often forget that Kadyn even has a shunt. Since he has not had any real issues other than his epilepsy. The good thing though is his seizures are not controlling his life as much as they used to. I am thankful for this. Kadyn's conditions seem to have gotten better and not worse. At one point we were told that his conditions would pretty much take over his life, but I do not see that as the case. He has seizures still, but they are months apart and not days. I don't know what the future holds for his shunts but so far they are working perfectly. Kadyn is 6 years old, which is 6 years more than what we were told we would have with him. He is the definition of a true fighter. Everyday he is learning something new, and doing these new skills. The other day in school he said bottle and bye bye for the first time. I haven't heard these but Kadyn likes to say something 1 time or 2 times and then that is it, you wont hear it for awhile or ever again if that. He is also sitting up unsupported more. Not for very long periods of time but he is doing it and getting into the sitting position all on his own. I am so proud of him. He is also taking many steps in his walker at school. My hope is by summer i can take him for walks where he can walk himself.

Kyle is 6 months old today. It is amazing how time just flies right on by. He can roll from back to front and front to back. He can not quite sit up unsupported yet but we are almost there. He loves watching my dogs and touching them. He is exploring his surroundings more. He is still an amazing sleeper. Sleeping through the night every night in his own bed. I think him being able to sleep in his own bed is the best decision I ever made. I know there is this whole big thing about co-sleeping and bed sharing but it was not for me. If my child can fall asleep by me just laying him in his bed, I am all for it. His only comfort items are is stuffed monkey that sings and his thumb. Yup I have a little thumb sucker, but I am ok with that. Thumbs are free, binki's are expensive. Kyle self weaned from his paci at 3 months old. Amazing!

Kadyn is a little more nicer and gentle with Kyle. He knows not to pinch him and to be careful. I think he realizes that Kyle is a baby. I just hope that I can teach Kyle not to judge anyone. I hope that I can raise him around Kadyn to accept everyone for their disabilities and all. I hope I can teach him not to say cruel things to people because they are "different" I want to raise him right. I think Kyle will be a super sweet boy. He is already super sweet and so happy all the time.

Monday, February 3, 2014

I probably should update this more

If I had time anymore I would still update this blog almost daily, but with a new job, a new baby, and Kadyn it's hard to do anything anymore. 

Oddly I like my new job a lot. I like most of the people I work with and I enjoy talking to some of the cool customers there. Call me weird but it's ok :)

Kadyn is back to school this week. After being sick and a few snow days he actually gets to go to school. He didn't have such a good day today but I am hoping tomorrow. Not to mention he was late getting home because of an emergency that happened on the bus and no one decided to call the parents and let them know that their handicapped children where going to be late. 

Kyle is growing and teething. He is getting so big. He amazes me everyday with his personality and his wit. He reaches for my face when I pick him up and he always smiles. He is a very happy loving baby. He loves his foods and snack and juices he gets. Can you believe he will be 6 months old this month. Sadly I wish he wasn't. I want my newborn baby again. He is getting so big and I think it's amazing. 

Kadyns new afo's came in today. I can not wait for him to be able to bring them home. Apparently they needed to be adjusted but I am hoping they are comfy enough for him to wear a lot more.

Nothing really new to report.