It's been a little bit. Kyle is now 4 months old and Kadyn is still growing as well. Life is good. Really no complaints.
With Kadyn, medically everything is unknown and unanswered. Other than his Neurosurgeon seems to think that his shunt is working perfectly and many of his issues is still healing from the surgery back in June. Although in my opinion Kadyn's behaviors are worse than before his Chiari Decompression surgery. He is more angry, self abusive and in more pain. He seems to have many more bad days than good. It's quite sad and frustrating. I will keep fighting for him though. I want answers and I want him to be better. He seems to have happier day when he is not sitting in his chair and he is not going to school. School doesn't seem to be a favorite of his anymore. I am unsure if it is because they make him "work" or when he is working it hurts. He hits his nose, ears and face during this time. He could not even enjoy his time at the Henry Ford Museum. It makes me sad that he can't be happy sitting up. I am pretty sure his shunt is over draining when he is sitting up.
Kyle is growing so quickly. He no longer takes a paci. He self weened a month ago and uses his thumb for comfort. He is such a sweet little guy. He sleeps through the night, 10-14 hours a night. He started eating cereal at night only. He started sleeping through the night before cereal but I decided to give him some as he lost a little bit of weight. He has since gained that back :). He is soo happy, and he coo's, laughs, giggles and shrieks of excitement and happiness. He loves looking at himself in the mirror and loves looking at the lights on the Christmas Tree. He has his four month check up at the end of the month. I have to discuss the fact that he has a bit of a lazy eye. I am sure she will want him to see the Ophthalmologist, but that is no big deal. I am not worried about that at all! His acid reflux seems to be better now that he is on medication. He still spits everything he eats up pretty much, but he is not screaming in pain while eating or while spitting up.
Thursday, December 5, 2013
It's been a little bit. Kyle is now 4 months old and Kadyn is still growing as well. Life is good. Really no complaints.
Posted by Sara at 12/05/2013 10:06:00 PM
Wednesday, October 16, 2013
Right now I feel as though I am failing Kadyn. Everyday he has had "bad" notes from school. He is hitting himself and needing his arms to be splinted so he doesn't hurt himself. I just feel like I can't fix this for him. I can't help him when he is frustrated. I feel horrible knowing they are splinting his arms at school, but it is for his own good, so he doesn't hurt himself. Every time I see that though I am sad. My heart breaks because I can't make it better. I can not understand why he gets so frustrated with things. I feel a tad overwhelmed trying to figure out Kadyn still. He has grown a lot in the past year. He is also able to do more and when he can not do something he just freaks out and hits himself, or yells. I want to comfort him but he pushes away from me, pinches me, pulls my hair ect.
I know I haven't failed him, and I know I am doing everything I can to help him. I just feel defeated. I know this phase will pass, and it may take awhile, but I can't help but feel hurt for him. He is trapped in a body that doesn't or can't do what he wants it to do. It's like he has no control, and he doesn't know how to take his frustrations out in a proper way. So here I just try and do everything I can to help him, but each and every time I read that Kadyn had a bad day at school I feel frustrated and defeated.
I am not typing this out looking for the "it's okay" or "it'll get better" Nor do I want ANYONE to feel sorry for me. There is nothing to feel sorry for at all. This is my life, I chose this and I am proud of it. I just am going through a rough patch when it comes to Kadyn, and I will have these feelings A LOT. I know it's ok and I know that it will eventually get better. Kadyn is Kadyn. I love him.
Can you believe Kyle is 2mo old already? Yup today is his 2mo birthday! He has grown! He is now 10lbs 5oz. He smiles so much and coo's a lot as well. He cries a lot too, it's a phase. We also found out Kyle has Acid Reflux, so he is on a new formula and Zantac to help with that. He seems to be getting better. Kadyn is still on his same diet. Ketogenic formula and yogurts, but we are exploring with different baby foods with textures in them and he seems to like them. I think one day I will have this little dude eating small meals!
Posted by Sara at 10/16/2013 03:41:00 PM
Thursday, September 19, 2013
My two lil boys are my whole world. I cherish every moment spent with them. I get a kick out of Kadyn's sleeping positions. He is a "all over the place" sleeper.
My sweet little Kyle is going through a phase of not wanting to nap. Yes, 1 month old and the lil guy is already fighting naps. It's so hard to keep him content when he is so tired. He wants you to hold him while he sleeps, but this is something I can not due, especially if Kadyn isn't sleeping as well.
The best thing about having two boys who are still tiny. Being able to buy them matching clothing!
Posted by Sara at 9/19/2013 03:22:00 PM
Wednesday, September 18, 2013
SSI, Social Security Income. It is suppose to be for those who are disabled. Now everyone's definition of disabled is different, but I think we can all agree if your child has a condition but it's not affecting them, and they are developmentally typical for there age, they should NOT receive this money because they are NOT disabled.
Kadyn is not a typical 6 year old. He can not sit up, he can not walk, talk, self feed or do the self care necessary to care for himself. He needs a wheelchair, he goes to a school for handicapped children. He is still in diapers, and can not wipe his own butt. Yet he doesn't qualify per the state of Michigan for SSI, although they agree he is 100% disabled? Kadyn has Hydrocephalus, Epilepsy, Chiari Malformation, and many other little conditions that actually affect his life. He has had over 30 surgeries, 27 which were for his shunt, yet he can't get a dime. In all honestly we are in a spot now where we don't really need it. I was going to save it up and put it away for Kadyn for when he gets older. Harvey and I won't live forever and someone will have to take care of Kadyn. He will always need around the clock daily care.
I see so many parents thinking because their child was born with a condition that they need SSI. No they don't. Having a condition does not entitle your child to money unless it affects their life daily. You have no right collecting money that should be going towards another family who cares for a disabled person, not you at all.
With all that said, I feel a lot better. Kadyn is doing great and so is Kyle. Been way tooo busy being a mom to my kiddos to actually update my blog.
Posted by Sara at 9/18/2013 07:49:00 PM
Tuesday, September 3, 2013
Hydrocephalus is not just a birth defect. It can happen. 6,000 children annually develop hydrocephalus. Brain injuries occurs every 15 seconds which some may lead to Hydrocephalus. More than 50% of hydrocephalus cases are congenital.
There are also other types of Hydrocephalus.
Either congenital or acquired.
Congenital is present at birth as Acquired is present at the time of birth or anytime after.
Hydrocephalus also can be communicating or non-communicating.
Communicating happens when the flow of CSF(Cerebrospinal Fluid) is blocked after it exits the ventricle. It is called communicating because CSF can still flow between ventricles.
Non-communicating is also known as obstructive hydrocephalus. This happens when CSF flow is blocked along one or more of the narrow passages also known as Aqueductal Stenosis.
There are other types that occur more in adults. As Hydrocephalus ex-vacuo and Normal Pressure Hydrocephalus (NPH). Hydrocephalus ex-vacuo happens when stroke or brain injury occurs and causes damage to the brain. Brain tissue may actually shrink. NPH is an abnormal increase of CSF in the brains ventricles. This maybe caused by a subarachnoid hemorrhage, head trauma, infection, tumor, or complications of surgery. There is about 375,000 older Americans with NPH, often times mistaken for Alzheimer's.
Eventually Kadyn's shunt will fail. We won't know when, where or why, but it will happen and he will need surgery. He will need his shunt replaced as quick as possible to relieve the pressure of the fluid on his brain. It's scary to think that this little device in my child's brain is what gives him the quality of life he has today. It keeps the fluid from building up and causing anymore damage.
Today was Kadyn's first day of school. He goes to a special school for the handicapped. He rides the bus in his wheel chair and loves it! He had a rough first day, since he took the summer off do to surgery. Hopefully he will get used to the schedule again and he will settle down. We have also been dealing with some behavioral issues since Kyle has been born. Hitting himself, hitting his head off things causing massive bruising on his forehead. Thankfully with him in school the teachers, parapros, and therapy staff can help break Kadyn of this. I think once Kyle is out of his newborn demanding stage things will get easier too.
Posted by Sara at 9/03/2013 01:28:00 PM
Monday, September 2, 2013
- Projectile Vomiting
- Sun setting eyes
- Swelling or redness along shunt tract
- Periods of confusion
Posted by Sara at 9/02/2013 12:01:00 PM
Sunday, September 1, 2013
Hydrocephalus Awareness Month
Chiari Malformation Awareness Month
(Ignore the dates on the photos below, I did not have my camera set right lol)
Harvey and I have been together for 5 years when we found out we were expecting our first child. We were young, I was only 19, scared, still living with my parents and still at that stage where I would be afraid to tell them. Around 22 weeks pregnant I went in for my formal ultra sound. Who knew that day would change our lives forever!!! It was so silent as they were looking at our baby, which we found out would be a BOY! That was the most exciting part of the ultra sound. After the scan, the tech could not give us any answers, instead she rushed us off into a cold room where we waited for the doctor. I could just feel my heart ripping from my chest at this point. The doctor came in, and said "We found something wrong with your child's brain. I'm sorry but he has Hydrocephalus. The outcome looks grim because we could hardly see any brain tissue. It looks to be all fluid. His chances of survival are slim to none, most likely won't live to take his first breaths and if he does, he will need extra care his whole life. Severe cases like this usually end up in the child being mentally retarded or death. With you being 22 weeks along, it's only legal to terminate the pregnancy until 24 weeks. I ask that you think long and hard and consider all the possibilities. Think about how young you are, and about your unborn child also. I ask that you make this decision sooner than later please."
That was it. our whole lives at that point were turned upside down. The only thing we could do is hold each other and cry. Harvey called my mom to tell her because I was a mess. I couldn't talk, walk, or think. We decided though at that moment, we would fight for our child. We would put it in God's hands and just wait and see. My philosophy was I'd rather give my child chance, and meet him one way or another instead of terminating and spending my whole life wondering what would of happened.
So my pregnancy went on and on July 2nd 2007 I gave birth via Csection to a 7lb 11oz handsome baby boy who we named Kadyn David. I got to hold him for maybe 15 minutes before he was whisked away on to his first of many surgeries.
|Holding Kadyn for the first time|
|Kadyn in NICU|
|When he was allowed to come home!|
|Lil man loved his swing|
|He was tube fed through an NG tube for 3 weeks|
|I taught him to drink from a bottle though. No more NG Tube!|
Just this past year Kadyn was diagnosed with Chiari Malformation. When they first discovered it, the condition was not that bad and just something his Neurosurgeon wanted to watch. He had a follow up MRI 6 months later and we received devastating news. Kadyn would need surgery. The fluid flow from brain to spine was blocked, his cerebellum was into his spine even more, and a piece of his spine was up into his brain. He also had two pockets of fluid on his spine. Kadyn had surgery to repair his Chiari in June of this year. It was successful and he has been doing great since.
Kadyn became a big brother August 16th 2013.
Posted by Sara at 9/01/2013 12:39:00 PM