Hydro hero

It's been awhile.....A long WHILE

2017-07-17T21:27:00.000-07:00

It has been a very long time since I've last typed out a blog post. I would say it was because we have been busy but that is not even close to being true. I live a totally boring life style now! More laid back than ever. Now that Kadyn is older (10) our hospital visits are few and far between and mainly it has been for his seizures. Which have not been too bad lately. Forgive me for I did not go through my blog to see where I left off last but I do believe Kadyn was still on the Ketogenic diet. He is no longer on that diet. We decided to take him off the diet because after 6 years of being on the diet it was no longer as effective for him as it was in the beginning. So, we decided to take the medication route again. He has gotten bigger, and is much older now so we thought maybe medication would actually work. It does! This doesn't mean he is seizure free, given the amount of brain damage he has sustained with his conditions, I've come to realize that seizures are going to be a life long struggle for him, but the medication he is on (Vimpat) is helping him a lot. His seizures are months apart. About a year ago was his last bad seizure that I needed to call 911 for. Kadyn was in PICU for a couple days but since then the only time he has gone to the hospital is when seizure happens at school, and that is just policy. Kadyn also has a VNS now. (Not if that was mentioned in previous posts) but I believe that with the medication are the real reasons his seizure are better controlled now than they ever were. But Kadyn has not has any shunt issues in many years. He has had to same shunt now for.....7 years I believe.

Just recently we found out Kadyn was approved for Make a Wish and we have decided to go to the ocean for this Wish. Kadyn loves the water and I believe being about to "swim" in the ocean would be amazing for him. Thankfully Jeremy (my amazing fiance) and Kyle (who is going to be 4 next month!) are going with us! It's going to be an amazing 7 day trip! I can not wait until we can go in the spring!

Kadyn is in school still. He is doing the extended year program which means he can go through the summer. Which is wonderful because he gets to keep going to school, learn and do all of his therapies through out the summer. Kadyn really loves going to school, or maybe its just the bus ride he loves. I'm not really sure haha.

Kadyn just had his tenth birthday party! He turned 10 July 2nd. Seriously double digits? This cant be real. Seems like just yesterday I was preparing to have you. Scared, not knowing what was going to happen. Will you be breathing? How bad will the hydrocephalus be. But here you are 10 years later just amazing as can be. Plus you're a big brother! I swore I wasnt going to have anymore, but Kyle completed our family. Then I introduced you to 3 more amazing boys and their amazing dad who fell in love with you! So not only did i find my best friend, I believe I found you your best friend Kadyn.

Here's to many more years of this "boring" life style. I rather enjoy not having to rush to the ER all the time, and the many surgeries. I enjoy not having to put you through test after test. I enjoy all of our appointments being every 6mo to a year. Its just wonderful!

A life of epilepsy

2015-07-17T13:17:00.001-07:00

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!

I don't update much. my apologies.

2015-07-11T18:58:00.000-07:00

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!

I don't complain too much but...

2015-02-05T19:57:00.001-08:00

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.

I can..... WALK

2015-01-29T20:24:00.002-08:00

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!

:)

In need of a van

2014-12-16T11:24:00.001-08:00

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.

VNS surgery.

2014-12-11T13:13:00.000-08:00

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. :)

Update on Kadyn

2014-11-16T08:56:00.001-08:00

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.

Lack of posts

2014-09-11T19:38:00.001-07:00

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.

Sometimes words hurt

2014-09-10T16:09:00.001-07:00

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!

1 year Chiari decompression surgery anniversary

2014-06-20T23:09:00.001-07:00

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

2014-06-20T22:53:00.001-07:00

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.

It's been months

2014-06-13T03:29:00.001-07:00

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! =)

Life seems busy

2014-03-17T18:57:00.001-07:00

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!

It's that time of the year again!

2014-03-09T11:40:00.001-07:00

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!!!

Kadyn has a shunt?

2014-02-16T14:22:00.001-08:00

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.

I probably should update this more

2014-02-03T19:05:00.000-08:00

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.

Keep on pushing on!

2014-01-20T07:27:00.001-08:00

Cherish every moment because they are only little once.

Growing so big now. It's hard to imagine just 5 months ago I was in the hospital giving birth to Kyle. My successful VBAC baby and I am so proud that I was able to do it!

6 Years ago I was undergoing major surgery to bring my little miracle into this world. Doctors doubted he would even live but he is still here and happy. Sure life may not be always fair to him, throwing him into the ER or the OR sometimes but with a smile always on his face he pulls through it all! It amazing how much he has grown in 6 years. How much he has learned and how smart he is. He may not be able to walk, talk sit or stand but he can think and figure things out. I love him soo much!

Every minute I think about how blessed I am with my children. I mean who else has a 5 month old that has been sleeping through the night since he was 2 months old and who else has a 6 year old who was given a death sentence before he was even born. I am truly blessed and I absolutely love being a mommy!

Another year....

2014-01-10T04:06:00.000-08:00

The holidays were great. Both Kadyn and Kyle got many things. Clothes, toys, yogurts, baby foods and gift cards. Things that were needed. I also got them a couple things. They each got a gift from us and a gift from Santa. It seems to be easier that way. Kadyn got a dinosaur paint set which I am going to help him with of course and he also got a Scout Lap Top. Kyle got a toy that jingles and a teether. Seems practical since he is teething now I believe. Kyle has also started baby foods. We were sort of hoping he would start baby foods and his puking would decrease, which in this case it has a lot. Since starting on his veggies his puking has not been as much or as often. I am pretty sure formula just doesn't agree with him, you name the formula we have tried it, so we are sticking with gentlease until he is a year old.

Kadyn is 6 years 6 months and Kyle is 5 months old. Kyle just found his feet. Loves all the veggie puree's, loves sucking his thumb and has learned to roll from his tummy to his back. He sleeps through the night, going to bed at 5pm and waking up at 6am. Thankfully he behaves himself while I get Kadyn on the bus. Kyle loves watching Tv and could sit there for an hour and watch TV.

Kadyn enjoys stuffies with switches on their paws and they sing, make music, talk ect. He has a Scout, Cody, Dog, and a read with me Scout. He loves these things and when he is having a bad day these stuffies will make him the happiest. With being in a special school they don't have grades but he would be in 1st grade. He is "learning" math and reading in his own special way. Kadyn can walk in his gait trainer a few feet and is able to not use the head rest. He has great head control when his gait is supported.

With 2014 my hopes and dreams are for Kadyn to fully walk in his gait trainer, expect many tears when that happens, I also expect Kadyn to learn a couple more words, eat more solids and have NO shunt malfunctions. I am hoping and praying for these things

For Kyle I can't wait to see all his milestones. Sitting up, walking, talking, and being a big boy. Growing and just being the sweet lil dude he is. This year should be amazing!! I see many good changes! :)

Sweet Dreams

2014-01-08T21:23:00.000-08:00

Sometimes the best part of being a parent....

is just watching your babies sleep.

Working Mama with an Epileptic

2014-01-07T11:41:00.000-08:00

Now days it's very rare for there to only be 1 working parent. With the economy both parents have to work. We are in that situation. I know Kadyn's health (as well as Kyle's of course) comes first, but I need to work to provide for my children. So with that said. The other day while at work, my shift was almost over. I checked my phone for the time and noticed I had a text, normally I check see who it's from, if it is from someone who does not have my child I just ignore it and go about my job. Well it was from Harvey, and I knew he was off work and had the children, so I checked it and it was a text saying that Kadyn was seizing. So I responded and asking him if he knew what to do, he said it had been done and he was waiting for Kadyn to come out of it. I then received a text that he was done seizing and sleeping it off, so I relaxed, finished my shift, cleaned up and headed home. When I got home Kadyn was still sleeping so I continued to let him sleep it off. About an hour later he woke up and he was fine, happy and playful. So I decided he was fine and it was just his stupid epilepsy reminding us that it is still here and will fire at any time. So I started researching different epilepsy treatments and found a research center in my area for Cannabis oil treatments for Epilepsy in minors. So, I am going to have a nice discussion with Harvey about this and possibly enroll Kadyn in this study. I am willing to try anything, and if a little Cannabis oil can help I am all for it! I am going to look into it more, call the place, talk to Harvey about it and will probably be making my final decision within a week or two, but something needs to be done. Kadyn can no suffer from these crazy seizures anymore. Perhaps on the Cannabis Oil we will see improvement in his skills.

Kadyn when I got home

I will be posting soon about my trip to WI. It was an over night trip...lots of tears but worth it to show how much my friends son ment to me.

Everyday is a true blessing

2013-12-31T10:30:00.000-08:00

Yesterday we a dear friend of mine lost her son. I am not sure of the details nor would I even post them here but do know he had Hydrocephalus just like Kadyn, although I do not think Hydro is the cause. Zayvier was an amazing happy bright little boy. He enjoyed singing and his mommy loved him so much. We were blessed enough to meet them when they drove here to Michigan to visit us. I have yet been able to travel to where she lives with Kadyn's health and then my pregnancy it was just impossible at the time. I'll never understand why God takes babies so young but I know it's all part of His plan and I trust Him. It's just scary since Kadyn is Zayvier's age as well. It's all too close to home and the only thing I can do is pray for healing over her family.

With all that said and the sadness still in my heart, this is all just a reminder of how everyday with Kadyn is a true blessing and it shall continued to be cherished. People like Kadyn are so fragile and when they are healthy you often forget how fragile their little bodies are. Even those with healthy babies need to cherish the moments they have because you never know what tomorrow will bring.

I've often have sat and wondered how much time I'll have with Kadyn. Every beginning has an ending, there is no such thing as forever. It doesn't exist, so why the word even exists is beyond me. With Kadyn's fragile medical conditions it always worries me when he gets a cold, ear infection, flu, virus, or any infection. These which may seem so small to those who are healthy are huge to Kadyn. Kadyn has epilepsy with many triggers. Fever being the biggest one. Kadyn seized for 25 minutes the other day due to a high fever caused by an ear infection. This is why when people are sick, I stress that they stay way. I know Kadyn is exposed to the elements everyday with him going to school, but I don't need him being exposed in his own home.

I have more fear of losing Kadyn now than when I was pregnant with him. I would go crazy. I know this. I just can't imagine losing him ever. My whole life has revolved around him for the past 6 years. I've done everything in my power to get him where he is today and to have that taken away from me...would just kill me. I pray that I have many days with him. I pray he out lives me and that his baby brother Kyle will continue to care for Kadyn. Kyle I can tell already will have a huge heart. He will be sweet as pie and love everyone. Raising him along side Kadyn I'll teach Kyle not to judge anyone. He will be an amazing little man.

I just ask that everyone hug their children more, be there for them more, kiss them and teach them love and kindness. You never know what tomorrow will bring.

Rest in Peace my sweet little friend Zayvier. I'll always think of you and even though we only met 1 time, you lit up my world forever. I'll remember you swimming at the hotel, humming to the music of every toy Kadyn has, Being on the boat and the exciting squeals you had when we would go under a bridge. Having to leave the restaurant because you didn't want to sit and eat. Going to the Hydro walk together and you being such a good boy! May God bring healing and peace to your mommy Zay during this difficult time.

This year is almost over

2013-12-27T18:42:00.001-08:00

As we approach 2014 and end 2013 there are is so much new in our world. Kadyn can say more words, he is more active, happier and has learned to work some toys with pressing buttons. He can walk in a gait trainer, stand in his stander and he also can hold his head up on his own. He also has grown a lot. He has went from wearing 2t-3t to a 4t-5t with in the year. His shoe size went up 1 size and his personality is shining through so much more. Harvey went from working security to working for Dish Network. We welcomed a new little guy in August into our family and I quit Mcdonalds and now work for CrossMark within Sam's Club. I've met new friends and let go old friends. I've learned that sometimes there are people you have never met in real life who care more about you and your family than those who have been around for a long time.

We also learned that Kadyn had Chiari Malformation and months later we learned that it had gotten worse an he would need surgery. He had surgery in June. He turned 6 years old shortly after. Kadyn didn't attend summer school again due to this surgery. We are still working on him healing from it but I believe it is getting better. Kadyn started eating more solids. More so yogurts than anything. He is still on his Ketogenic diet but his seizures still pop up here and there, but have got less and less frequent.

Kyle Xavier was born on August 16th. He was a surprise pride and joy. We love him to pieces. He was born healthy and happy. Well maybe not so happy, I mean are any babies born happily? :)

I look forward to Kadyn's progress in 2014. I also look forward to watching Kyle grow and learn new things. Children are a blessing and I've been blessed x2. I'm lucky, very lucky.

Hopefully I can provide more updates in the new year!

Growing up

2013-12-26T19:40:00.001-08:00

At the age of 19 I learned of my pregnancy a few months later I learned of Kadyn's condition. I learned a new term Hydrocephalus. I walked through my pregnancy alone as well. I did not know of any support groups or anyone until after I had Kadyn. I felt so alone then. Even alone I made the best decisions I could as a mother. I believe I made the right decisions. Kadyn is 6 years old, that is 6 years that the doctors said he would never have. I was made to grow up when I had Kadyn. I had to in order to be a better mother for my sick child. I almost lost Kadyn many times. Every shunt malfunction, surgery, seizure, illness is almost losing a child so fragile and Kadyn has had over 30 surgeries, 100's of seizures, and many illnesses, and shunt malfunctions, he even survived Meningitis. Gram negative bacteria meningitis. An illness where only 30% of people survive, and illness that I know people have passed from, perfectly healthy young people that I went to school with have passed from this and my son survived it. Tell me that is no miracle? My world, my life, my reason for living has been to care and keep Kadyn has healthy as possible.I'll continue to do so to the best of my ability. Now I have Kyle, My little baby. Gosh, being a mother of two, I never thought I would be a mother of 1 and now 2. I am the luckiest woman in the world. I have an amazing 6 year old son, who defies what the doctors say. Kadyn is going to do what he wants and keep on doing what he does best...living. I also have an amazing smiley 4 month old. He is so sweet, and amazing. He brings me so much happiness and joy. Every time I think about who I am now I am thankful and I know I am the luckiest woman on this earth.

My kids are growing, and getting older and I plan on growing older and wise along side of them.

The Holiday Season

2013-12-25T19:03:00.001-08:00

The holidays are coming and going. 1 more left and the holiday season is over. I am thankful. Although I love the holidays I most enjoy them being over with. I truly am thankful for the gifts that we have received from many people. I could never show enough gratitude for those who have helped out in any way that they could. Being parents of two children is not easy, especially when you throw in a handicapped child. Things will get easier though. I am working again. I work as an Event Specialist at Sam's Club. I am that person behind the cart handing you free samples and hoping you'll buy the product!

It's been awhile since I have updated. Things have just been so busy. Kadyn ended up having a bad seizure a couple days ago. It all ended up being because he had an ear infection. He is on antibiotics and will soon be better. He hasn't had this bad of a seizure in a long time. I actually had to call for an ambulance because he would not come out of it. He had a high fever and I believe that is the reason I couldn't get him out of it with just his Diastat. Once the EMT's arrived he was about done but his heart rate was still high and respiratory down, plus we had no clue if it was his shunt or not and since the seizure lasted about 25 minutes it was a good idea to go get checked out, so off to Childrens Hospital of Michigan we went. We went straight to Trauma since his seizure was so long, plus things move faster in trauma so we would have answers quicker. So of course the minute we walk in the check for fever, 101.4 then they checked his ears, infected. It seems that was the answer to all of it. Kadyn is on antibiotics now and should start feeling better soon.

Kyle is 4 months old now. He is growing up so quickly. Getting bigger and stronger every day. He is holding his head up almost perfectly now and almost sitting up on his own. He loves to laugh and giggle and babble. He throws up a lot still and I am going to ask his doctor about that at his doctors appointment tomorrow. He doesn't just spit up a little, he vomits everywhere, like a water fall and it's non stop between each feeding. I have never seen a baby throw up so much. I am wondering if he needs to be on a Soy based formula. I am pretty sure she will ask for an ultrasound of his belly. We even tried thickening his formula with cereal but he still throws that up a lot. Burping between each feedings and giving him medications are not helping. He is still growing but not as much as he should be. So hopefully we have answers for that tomorrow.

Other than that life is still good. :) I have no complaints. Other than this ear infection and fever that caused Kadyn's seizure things have been great!!