It's beginning to look a lot like Christmas!!

Hi Everyone! So mommy dressed me up today and took my christmas pictures! I had so much fun! I also went to the eye doctor yesterday and he told us that I am doing great and I was looking at all of the different toys he was holding in front of me! So I don't have any eye issues!!! We also went and bought our Christmas tree and decorated it on Sunday! I have been doing great on my medication wean, so if things keep going this good, I might be medication free before we know it! I am only having about 10 or 15 seizures a day now, which is a huge step from the 100 to 150 a day I was having before the keto diet! This weekend mommy and daddy are taking me to the mall to sit on Santa's lap so there will be more pics to come!! xoxo

Happy Thanksgiving!!

Happy Thanksgiving Everyone!! We had the best Thanksgiving ever!! I got the news that I get to start eating solids again! So I am beginning on Monday, after Mommy talks to the dietitian about how to properly make my special meals! On Thanksgiving we got up early and watched the parade and I hung out with Mommy and Daddy until we went over to MaMa and PaPa's house for Dinner! They have their house decorated like a winter wonderland so I loved to look around at everything and be held by everyone!! I just got over my first major cold. I had an ear infection and a really bad cough, but the antibiotics the doctor gave me started to work only after a couple of days of taking them. I am feeling so much better now. The doctors are starting to wean some of my medicines because the ketogenic diet seems to be doing wonders and I don't need to be on meds at the same time! So we don't have a lot of appointments scheduled thank goodness! Happy Thanksgiving everyone and thanks for following my blog!! xoxo

My 1st Trip to the Ocean!

Hello Everyone! I just back home from my first trip to the ocean! Mommy and Daddy took me to St.Thomas for a whole week! I did so good on the airplane! I love to fly! They took me into the ocean the first day we got there and I got to feel the waves run over me when I sat in the sand with Mommy! We had such a good time! I even was breathing better down there because of the humidity and because we were at sea level! I definitely am a good traveler! We went to St.John one day as well and rode on a ferry boat to get there! My eyes were as big as Dollar coins the whole time! I am a month into being on the Ketogenic diet and doing pretty good. I am still having seizures, but the doctors say to give it 3 months so we can give it a good try. We go to the hospital on Wednesday to have my 1 month checkup and bloodwork, so hopefully we can start getting me off some of my meds. I now weigh 16 pounds! Thank you for reading my blog, I will keep you posted after my next doctor appointment! xoxo

(I want to say thank you to my Doctor for secretly stashing a Swine Flu shot away just for me!)

October 3rd, 2009! I am 1!

Mommy and Daddy through me the best birthday party ever!! We had all of our family and friends come over and we all ate pizza and cupcakes! I got some awesome presents that I love to play with! So thanks to everyone who came and for everyone who sent cards and presents!! It was the best 1st birthday party!!

So tomorrow mommy and daddy are taking me to the hospital, and we have to stay there for 4 days! I am starting the Ketogenic Diet and I have to go through a 36 hour fasting period in order for my body to reach a level of ketosis which helps kids control and sometimes rid of their seizures! We are all really afraid, but we are in good hands at children's hospital and mommy has met so many families that have had amazing results from the diet. So please take a little time out of your day sometime this week to say a prayer for me and my family! Mommy will keep the blog updated as we go along this process! Thanks for reading my blog! xoxo

I am almost 1!

It has been a long time since mommy has updated my blog! We have had a really busy summer trying to enjoy the weather but to also stay on top of my seizures! So mommy and daddy have been working with my doctors on a plan of attack for my treatment. Mommy has been going crazy researching all sorts of different medical treatments, but after all is said and done, they are starting me on a diet called the ketogenic diet. It is basically a really high fat diet that helps the body reach a state of ketosis which doctors are not still sure why, but it helps stop seizures. So I am going to be put on the diet on October 4th! Mommy and Daddy are so happy I will be able to eat cake and ice cream for my 1st birthday now!! There is a story in the old testament that tells the story of a child with epilepsy and they put him through a fasting period and his epilepsy was cured! So please everyone say a little prayer for me and mommy will post pictures from my 1st birthday party when its over!! xoxo

Lots of News!!

There has been so much going on in out household it has been pretty much impossible for mommy to update! (which we are so sorry about the delay) I have been having a great summer! I love to go to the pool, mommy and daddy took me for my first time over the fourth of July! I love the water! We also got to go to Canada where I got to go on my first plane ride and get a stamp in my passport! We had so much fun seeing Tata and Papa and everyone up in Calgary! I now weigh over 14 lbs and I am over 2 ft tall! Not even my pediatrician believes how well I am doing! I am surprising everyone with how much I am improving and growing! I started a new medication for my infantile spasms and seizures call Vigabatrin, which is working amazingly and I have not been able to stop making all sorts of noises! I love to mimic anyone who talks to me! Because of the medication we are monitored every week at Children's Hospital and we have to be admitted next week for a 24 hour EEG! So please cross your fingers and say a prayer for us because spending the night or 2 or 3 at the hospital is always trying on all of us! Today marks my 10 month old birthday and I am doing and feeling better then ever! Thank you for following the blog and I love you all very much!! xoxoxo

May 27th, 2009

Mommy is slacking on keeping up with my blog! I am doing so good, nobody can believe how quickly I am growing! I am now officially 11 lbs 2 ozs!! I had a swallow study done not to long ago and it made it clear that I aspirate liquids, but not really thick solids. So mommy and daddy thicken my solids with rice cereal and I gobble it up. I still have to use my G-tube for the majority of my feedings but hopefully as I grow and gain strength I won't aspirate and we can work on continuous oral feeds!! Mommy is going on her first trip away from me next weekend(her and Tata are going on a spa vacation) and daddy gets to go fishing in northern Canada the week after that!! I have a MRI scheduled for Friday and my tests are being sent to a pediatric neurologist that specializes in Cerebellum Hypoplasia in Chicago. So as soon as we get any answers, we will keep everyone informed!! I am so alert and I make so much noise now! Thank you for following my progress!! xoxo

I'm 10 Pounds!!

I officially hit the 10 LB mark!!
Woo HOO! Mommy took me to Children's hospital again for some blood work and a chest x-ray and everything came back normal!! Yay, that means I don't have pneumonia anymore and my white blood cell count came back down to normal levels! We don't have a very busy May compared to the months past when it comes to doctors visits! I have to have an MRI on May 29th (they sedate me) and a swallow study on May 18th because as you can see I love to eat solids now!! My favorites are Sweet peas and especially peaches!!! The swallow study is being done just to make sure I am not aspirating, which Mommy and Daddy are pretty sure I am not! I also have started to make so many noises, I love to coo all night long when mommy and daddy try to sleep! Thanks for following my blog, xoxo

Kingsley's Baptism on Easter!!

I had such an eventful Easter weekend! My whole family got together for Easter and my Baptism! It was so magical and special! Auntie Skye became my godmother and daddy's best friend Chris is my godfather! We had such a great time at church and then we had Easter brunch with the whole family afterward! I have been getting so much bigger too! I am almost 9 pounds now!! I just got all of my 6 month vaccinations yesterday and the doctor was so pleased with my progress! Mommy took me to the eye doctor this morning and the doctor told her I can see and I will not need glasses!! We also started an infant developmental class at this fancy new facility called the Anchor Center. It is so neat and I did so good! My favorite part was laying in the big square swing while mommy pushed me! I will keep everyone posted on my development and growth as we go!! xoxo

March 26th, 2009

What a time I have had! I checked into Children's Hospital last Wednesday to get my fistula fixed. But it turns out there wasn't a fistula after all! So my surgeon Dr. Partrick (hands down the best pediatric surgeon around) decided to give me a G-tube instead. This is because I am aspirating liquid when I drink from the bottle and I am not gaining weight very quickly. So I got my G tube Friday night at 10pm and I was out of surgery and into recovery by 1:30am! We got to leave the hospital on Tuesday, so I am home now and doing great! Its an adjustment for all of us, but now I sleep through the night because I get a slow drip all night long! So mommy and daddy are happy about that! So we are all excited to see how quickly I gain weight and finally get out of my newborn diapers!!! We will keep everyone up to date as time goes by! xoxo

Update!! March 17th, 2009

It has been way too long since mommy has posted an update! A lot has been going on in the Larsen household. We found out I have a fistula, which basically means I have a whole in my esophagus where liquid is getting into my lungs. That explains why my breathing has been really rapid and short. We went into the hospital for a routine EEG and then found out that I have respiratory pneumonia. So, I am getting surgery either Wednesday night or Thursday morning. We are all praying that my lungs are strong and healthy enough to get me through it and that I can handle anesthesia as well. So we are all very scared, but certain everything is going to be ok. Please say a prayer for me, and we will keep everyone posted as we go along! xoxo

New Casting on My Hands!!!

I know its been way overdue for mommy to inform everyone on my condition, but here we go!!! I finally got a bright green cast put on my right hand today to start the process of getting my thumbs straight! I was such a good boy, I slept on Daddy's lap through the whole thing! I only wear it for a week, then we do the left hand! I am doing so well off of my feeding tube, and I am now over 8 LBS!!! I am having a swallow study done on Monday (just to make sure my milk isn't getting into my lungs) and then we have to spend the night at Children's Hospital on Wednesday so they can do a probe study down into my stomach to see about my reflux!! So we have a busy couple of weeks ahead, but as soon as we get results we will share with everyone! xoxo

Home from the Hospital (yet again)

I am finally home from the hospital yet again! I started having "spells" last week that were very alarming to mommy and daddy so they took me to the emergency room last Wednesday and I ended up staying in the hospital until Sunday! It turns out I am suffering from a severe case of epilepsy and I have infantile spasms to boot! The diagnosis is unknown, but mommy and daddy aren't letting that bring them down. I am now on a feeding tube (this springs "must have" accessory) which is helping me with my caloric intake. I have been put on a different seizure medication so we are all just waiting to see if that is going to help with my spasms. Its been a long week and mommy and daddy are going on no sleep, but we all will get through this. Please say a prayer for me as often as you can and I will keep everyone updated on my progress! xoxo

January 29th

Today is a day I could use all the prayers I can get! Mommy and Daddy took me to the emergency room yesterday afternoon because I was shaking, crying and not eating to the point my pediatrician told them to take me. I am still at Children's Hospital in Denver and getting all sort of tests done so we can find out why I am so fussy and my saturation levels aren't stabilized at all times. As mommy is writing this blog, I am under a 24 hour EEG observation and will most likely be here through the weekend. Please say a special prayer for me tonight and any spare chance you get! Life is so fragile, so please don't abuse it! xoxo

January 17th, 2009- My 4 month Birthday!

We are now halfway through the month of January and I am doing great!! I wasn't feeling good at all during the beginning of the month and had to go to the doctors almost once a week to make me feel better! But I am doing so much better and I am eating so much and growing really fast! I have to have surgery on my feet, but the doctors told Mommy and Daddy not until I am 6 months old up to a year old, so that's still awhile away! I have to have my 4 month shots this week, but I handle them pretty good, so I am not scared! I am officially 7 lbs 8oz and I am really long!! I have started rolling over, so that's what I do most of the day!! I will keep everyone posted on my progress as I learn!! xoxo

Happy 2009!!!!

Happy New Year's!! I celebrated my first New Year's with Mommy and Daddy from bed!! We were all so glad to be asleep by 9pm!!! We all had such great holidays, but daddy and mommy are ready for the new year! I have some doctor's appointments in January, I am going to see the orthopedic doctors on the 5th and back to see the Metabolic team on the 13th! They are just check ups nothing too big or scary! I am still growing at a good pace, I am over 7 pounds now and I can no longer fit into my preemie clothes or diapers!! So as the month progresses or if any new info comes about, I will be sure to keep you informed!! xoxo