Kasen's Journal

2009-04-30T06:06:00.000-07:00

Sometimes when Grandpa and I are playing a bit to rambunctious, Grandma throws us in the pen! HaH, grandma doesn't know that I have more fun laughing at grandpa in this little playpen!!

Well, if I can get my peddle fixed I'm going to play at the park with my cousin Jace. Darn peddle.. I wonder if Grandpa is outta the pen, he can fix this...

This is Jace! He is my cousin.. His Mommy and my Mommy are taking us to the park. Jace is real fun to play with. We have this this secret language we speak.. it's very amusing looking at the funny faces the grown ups make while they are trying to figure out what Jace and I are saying to each other. Lol..We understand though...

We had a Blast at the park. We played on swings and slides. I think Slides are my favorite!

We had a great day!

I had my appointment this past Wednesday with the Cardiologist. She said the hole in my heart has remained the same, so they will continue to monitor it. She is not as concerned with the fast heartbeat, as the Halter monitor indicated that it wasn't a consistent fast beat. She will also keep a close eye on this as well. I won't have to go to the Cardiologist for 6 months, Yipee!!!

I'm Doing Great!!!

2009-04-16T07:15:00.001-07:00

Oh boy... It's been a while since I have wrote... I have been having so much fun growing up!
I have been learning so many new things... This world is incredible, isn't it?
On Easter this big furry white thing they call the Easter Bunny left me and my sister a basket of Candy and toys.. that is a pretty cool thing! Then we went to church.. My mom said Easter is all about Jesus. I am still learning about Jesus at church and I like learning about him... After church we went to my Granny and Gramps. They hid these colorful plastic eggs filled with candy and money. This was a fun game..

There is my sister, Jasmine. She is looking for the YELLOW egg. Can you see it?

This is my GREAT- GRANNY Carolyn. She stopped by to watch us find those magical eggs!

I think Jasmine found one.... I better hurry before she finds them all....

Oh boy! I found the last egg..Yay!!! This was a fun day :)

I haven't given an update lately of my health issue's.

I have a very, very fast heart rate along with the other heart valve problem. My Cardiologist has done many tests including having me wear a ekg harness which monitors my heart 24/7. There is no explanation to show why my heart rate is so, so fast. Soon I will be going back for another echo cardiogram to see how my valves are doing and maybe it will show an answer to as why my heart beats so fast.

As for the seizures, they were diagnosed as Myoclonic Epilepsy

I take medicine and it helps a lot!

Before you leave, I would like to share this poem with you...

Life isn't about waiting for the storm to pass...

It's about learning to dance in the

Rain.....

~Kisses and Hugs To My Family & Friends

2009-02-13T22:51:00.000-08:00

Results from the Echo- Cardiogram

2009-01-31T09:35:00.000-08:00

Hi family and friends, this is Kasen's Granny D. I am writing for him today as he is still resting off the meds used for his tests he had done on Thursday. Kasen went in to have his Echo test. They had to sedate him because he was so young, this medicine takes several days to wear off. Sides effects are, tiredness and limited motor skills. This wears off but does take 2-3 days. Everything went very well during his test. The medical team working with Kasen were wonderful. Friday, the cardiologist called Mandi, to tell her the results. He does have a hole in his heart. It does not need immediate repair and said that sometimes this repairs itself with time. However, by age 4 if it has not healed itself they will do heart surgery to fix it. The swelling of the heart was minimal, they will keep a close watch on this. Kasen's heart rate is unusually fast, this raises a concern because the echo didn't give an indication as to why it is so fast. They are keeping a heart monitor that records what his heart is doing all the time. this is then transmitted directly to the doctor. They are hoping this will explain the high heart rate. The seizures Kasen is having are not related to his heart. His Neurologists can now go forward with treatment.
I just love that little boy , and have so much love and respect for his Mommy and Daddy. This has been so hard on them, as it would any parent. Our children are so precious. Mandi & Rob, I want to tell you how proud I am of the both of you. You are so strong for Kasen and so loving parents. And Kasen, Granny D Loves you :)
I have to run back to work, talk soon...

~ Little bits of good news

2009-01-27T11:13:00.000-08:00

Here we are in another one of those waiting rooms...they have books to read.

and more books to read. I sometimes get a little antsy when I have to sit for a long time even if I have a book in my hand.

My Grandma Belinda came with us today. I had to crawl off my chair to sneak this pic so I could show everybody my Grandma. I love her a bunch!

So here we are finally, in the room with more of those wires. I really didn't want them to put them on me again, but my dad talked me into it.

My parents were under the impression that I was getting the Echo today. The new Dr. explained that she wanted to give me a thorough examination and run another EKG. She heard my murmer and assured my mom and dad that I would not need immediate hospitalization. ( YAY, That's good news!) She did the EKG and this time it it came back normal. She explained that sometimes after trauma of a seizure, the EKG can often come back abnormal. They want to see what my heart does when I have a seizure, so she gave my parents this strange little monitor that I wear all the time, and yes it has wires too. This will tell the Dr. if my seizures are heart related. Today we will get word of when they do the echo test. Because I am so young and full of wiggly worms they are going to sedate me for this test.

I think that the visit today with my new Dr. gave my parents some peace of mind. Even though they are still searching for answers, she made all of us feel better in knowing that my life is not in danger right now.

I am sorry I didnt write until today, but I will admit I was a bit cranky last night trying to get used to this monitor. I am accepting it better today, and the cranky mood has left me and I'm back to my giggly self. Today was a great day for writing.

I went to my Granny and Grandpa Mac's today!

2009-01-22T19:15:00.000-08:00

Today my Mom and Dad had a big surprise for me. They were going shopping for my sister's birthday and I got to go to my Granny D's and Grandpa Mac's house! I was sooo excited because this was the first time my parents have let anyone baby sit me since my first seizure. I had to hurry and find something to wear! I tried on several pairs of shoes before I came across these bad boys ....... How do I look?
Hmmm... Mom said that I looked real handsome in them However, she felt I should wear my warm and fuzzy sleeper because I would be staying kinda late at my grandparents house.

When I got there, my grandpa had a special surprise for me. It was a rocking horse named Kee Bee Appo. My great-grandpa made it for my grandpa when he was a little boy like me. At first I was a little scared to ride it but after I saw both of my grandparents ride it, I decided to give it a try. I had so much FUN! I cant wait to go back and play again, and next time I go there we are having a art & craft day. We will be making Valentines for my mom,dad and big sis. SHhhhh.... that's a secret between me & you.

My visit with the Neurologists

2009-01-21T20:12:00.000-08:00

Hi friends and family! I want to tell you about my visit with the Neurologists. But first, I would like you to meet my mom. Her name is Mandi, I just call her mama. She takes very good care of me and I love her so much! Today my mom and dad took me to see the Neurologists.

We waited in the cool waiting room. Here I am with my Dad. I love him so much and I know he loves me so much because, he takes good care of me too. We were waiting for quite a long while, a very long while, you can only look at fish so long before boredom sets in.. We found out that we were several hours early to our appointment. Our bad! Lol,giggle,giggle..

They finally called my name! So into another room we went. I met two very nice Doctors. They said that my EEG did not show any seizure activity at the time of the test. This did not mean that the episodes I have been having were not seizures, it just meant that I wasn't having any at the time of the EEG. They said that there was no neurological damage to my brain from these episodes but after reviewing my chart they were very alarmed by the heart findings from that night in the ER. They said this may be directly connected to the seizure like episodes. Before they could do anything else they need a Cardiologist to do an echo cardiogram of my heart. Both doctors examined me from head to toe and each one listened carefully to my heart. Both doctors heard a murmur and said my heart was also enlarged. They were puzzled as to why the ER doctor did not get me in right away to have a Echo cardiogram. My Dad and Mom explained the big mix up on the hospitals part and said it was set for Feb.20th( That's a whole other story, and we wont get into that and all I can say is my mama wasn't very happy and if mamma ain't happy, no body's happy) anyways, these doctors said this needs to be asap! So they found me a new Cardiologist and I will go this Monday for the Echo test.

So today was a mixture of emotions. I am so thankful that my brain has not been damaged, I am thankful for these wonderful dr.s but we are all very worried about my heart and these seizure like episodes.

Thank you for your thoughts and prayers for me and my family. I colored a picture especially for all of you!

I have to go to bed now but I will talk to you on Monday.

~Love Kasen

2009-01-20T08:27:00.001-08:00

This is my sister, Jasmine. She is 6 years old, on the 28th of this month she will be turning 7 ! I can hardly wait for her party.
In this picture we are playing at Granny D's house. I love to crawl inside my toy box, and Jazz always watches over me.
Tomorrow, we are going back down to Primary Children's and my Dad,Mom and me will meet with the neurologists. Hopefully they and the EEG can make sense of these strange happenings. I will give you an update tomorrow, on how our visit with the Dr. went.
For now, I think I will color a birthday card for my big sis.

2009-01-16T07:11:00.000-08:00

Yesterday I had my appointment for a EEG at the Primary Children's Hospital. This test is supposed to help with identifying the seizures or what ever it is that makes me zone out and shake uncontrollably. Speaking of... I had another seizure this morning. I'm just not sure whats going on with me but I have faith that we will find out and learn how to either fix it or properly manage it.
But first,my Mom and Dad took me to BUILD-A-BEAR before going to the hospital. I got to pick out my bear, kiss his heart and make a wish and watch him be stuffed. It was soooo cool. I even got to give my bear a bath. When we come down to the hospital next week, I get to bring my bear and pick out some clothes for him. I am way excited!!!!

We just got here at Primary Children's Hospital. There are lots of other kids here too. Some are waiting for tests and others are staying here awhile because they are very sick. I wanted my mom to take pictures of my new friends, but she said that it would not be polite thing to do. I was having a great time playing with the other kids and sharing the cool toys. Then suddenly, I heard them (The Adults) call my name. I had this big ball of jitters in my belly. I was scared...........

My Mom & Dad was telling me that I would have all these wire thingies attached to my head for the test. They assured me that it wouldn't hurt. I have lots of faith in my parents words, however it was very scary at first. The wire lady was so nice and gentle, my dad and mom stayed by my side and it didn't hurt at all! Just like they said.

This really looks worse than it is! The wire lady had to wrap my head up so that all the sticky things & wires would stay in place between tests.

What A DaY! I am all tuckered out. I'm going to snuggle up with this cool Thomas the Train blanket, the nice wire lady gave to me and sleep all the way home!

Hi, My Name Is Kasen

2009-01-15T05:46:00.000-08:00

Meet Kasen. He is the youngest of my three gran children. Just like his mother Amanda, he is bursting with giggles and smiles. Kasen will be 17 months old January 27th.
Kasen has been a seemingly healthy child. Except, on occasion for no reason what so ever he would stop breathing. He would have a panicked look, his eyes dazed and mouth wide open with complete absence of any air. These episodes would last less then a minute but to the loved ones around him, it seemed to last forever. My daughter was very aggressive with getting answers from his pediatrician. He was diagnosed with acid reflux and told he would outgrow this condition when he started sitting up on his own. However, these strange episodes continued. He seemed to get frequent colds accompanied by wheezing always requiring steroids, nebulizers and antibiotics. He was then diagnosed with Asthma. This seemed to be an acceptable diagnosis and we all felt with the meds and prompt and careful care, that he was doing much better.

Sunday, January 11, 2009 was like any other fun day. Kasen had a friend his same age sleep over (Manda was babysitting) and of course he had his #1 favorite sister, Jasmine there. They played and played and played some more. All tuckered out , Kasen was layed down for his afternoon nap.

When Kasen woke up he acted a bit unusual. His eyes would not open and he sobbed a little. Amanda held him a bit, then placed kasen in his highchair for lunch. Jasmine hollered, dad there is something wrong with Kasen. Rob turned around from cooking lunch and saw that Kasen was shaking uncontrollable. He was turning purple and looked as if he was far,far away in another world. Amanda quickly rushed him to the hospital only several blocks away. His seizure had stopped and his color returned. After blood work and a physical exam, Kasen was immediately sent to Primary Children's Hospital in Salt Lake City.

Kasen was diagnosed with a fixed splits2 and a left ventricular hypertrophy. The Cardiologist and Neurologist ordered more testing to be done this week. So here we are.. worried and waiting...