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Journal |
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Sept 21, 2008 I have had a busy and eventful few months. In June I started something called the Ketogenic diet , I had to spend a few days in the hospital and couldn't eat for a while, mom says it was to make my body change from burning sugars for energy to burning fat for energy (ketosis), after this happened, I was put on a very strict diet of mostly fat, some protein and some carbs for some reason this helps me not have as many seizures. It wasn’t too bad but I had to have another EEG which I’m not very fond of and get stuck with needles a few times but the best part was getting mom’s complete attention for three whole days without my brother and sister around :o) Mom has to be careful of EVERYTHING that touches me now(lotions, toothpaste, diaper wipes, sunscreen etc.) because anything that could contain carbs, or protein could set my seizures off when it is absorbed into my skin.
On July 11th I turned 4yrs old! I hade the best birthday party ever! All of my friends and therapist came, I got to bounce in a big jumper, sit in a pool and even go down the slip n’ slide! I LOVED to look at all the balloons and I had big smiles for my cake! I knew that it was all for me and It made me so happy to see everyone that I love. I wish more of my family could have come but they live very far away. Each one of my guest and even some that didn’t make it to my party brought me a piece of fabric that will remind me of them, some had a special print on, some had pictures, some had textures… all different kinds! Mom is going to have a quilt made for me with all the fabric and that way I will always have something to remember all my friends from Montana by. . I grew so much that I grew right out of my chair so I got a bigger one now that is sooo comfortable! My legs don’t hang off the edge anymore and there’s more padding to keep me comfortable. It took a long time to come but definitely worth the wait! (see picture to left)
After 6 long months daddy finally came home YEAH!!! As soon as he came home things got a little crazy around our house, a crew of people came in and packed up all of my things and then a big truck came and took it… I was a little worried but Mommy assured me that I would get it all back soon… then we took a long 4day drive and sure enough… after a few days all of my things showed up and now we have a new house and live in sunny Arizona. It was a bit of a rough trip cuz I was a little worried and the altitude in the mountains caused me to have more seizures but now that I’m settled in my seizures have decreased a lot. I like it here a lot, my brother keeps bringing fun things to show me, like lizards and frogs :o) I wasn’t able to take all of my doctors and therapists with me so now I’m in the process of meeting a whole new crew of people that will be working with me. My neurologist was really nice, he took some tests and wants to see me again in a couple weeks to see if we can work on getting rid of my seizures. I met my new physical therapist and occupational therapist, they were really nice and did fun stuff with me but leaned fast that I don’t like being on my tummy!! I’m going to be seeing a speech therapist, an orthopedic doctor and a pediatric ophthalmologist soon and mommy is still working on getting me a new GI doctor, there are just so many people that want to meet me!!!
May 29,2008 So much has happened I’m not sure how to fit it all in. Mommy and Daddy sold our house and moved on the base in town, it’s a really nice house and my breathing has improved dramatically since the move but Mommy tells me that we will be moving again so not to get to comfortable. Daddy is in Texas training for a new job in the Air Force, I miss him a lot but I get to see him on the computer sometimes and when he comes home (in August) we are moving to Arizona, Mommy says it will never be cold there and there wont be as much wind… two things I’m not so fond of so I’m pretty excited. My seizures have been pretty bad lately so next month Mommy is taking me to Helena and my neurologist is going to try a diet called the Ketogenic Diet, I’m not sure what it all means but mommy tells me that we will stay at he hospital together for a few days and that I’m going to be very hungry for a day or two and then their going to feed me some new stuff and somehow that will make my seizure go away. I don’t really care since I don’t taste my food anyway, it’s really more of a change for Mommy than it is for me. I’m going to have a new baby cousin in November, congrats Auntie Amy and Uncle Kurt!!! Well that’s the shortened version of all the chaos that’s been happening in my life, please keep me in your prayers that this diet will work for me.
November 2nd,2007 I have had so much going on in the past few months I don’t even know where to begin. Grandpa Dan, Grandma Candi, Auntie Amy and Uncle Kurt all came to visit, what fun that was! I just love all the extra attention and it’s always such a treat to see them because they live so far away. I made another trip to Spokane and had my tube changed to a Mic-Key, now I don’t have the long tube connected to my tummy anymore and it is a lot less irritated than before. It was a great trip, my Grandma Candi came with to be with me and help mommy chase after my sister. I did fantastic! I got to leave the hospital as soon as I woke up after the procedure and I was all smiles within just a couple hours, yep… I’m pretty amazing! I had a prickly test done with an allergist and found out that I’m allergic to soy, horses, weeds and dust. Now I have to be extra careful in Hippo Therapy. My speech therapist got a new job working with big people and since she is irreplaceable to me I don't have therapy every week anymore, but I have a soft spot with each of my therapists so she has a greed to continue to see me for swallowing therapy when I need it. I have grown so much that I’ve almost outgrown my chair! I only have two more inches and I wont be able to use it anymore so Mommy and my therapist are looking into a new set of wheels for me. I started a new therapy called “Cranialsacral”, it is very relaxing!! Mommy is going to look into taking a class to learn how to do it. I went trick-or-treating this year for the very first time!! It is unusually warm this year so we walked around our block and I showed of my incredible cuteness (see picture to the left) to the neighbors. Daddy was supposed to leave for Iraq in August but he is still here, yeah!! He still might have to go but is on “hold” for now, Mom and Dad say it is complicated to explain but we’ll take whatever comes our way and make the best of it, for now we’re just happy he is home! I saw a genetic counselor but they didn’t really have anything new to tell us, they said we pretty much had everything in order and that I was doing fantastic (like I didn’t already know that) . I had an eye Dr apt with my new pediatric ophthalmologist and he said my eyes look great and he doesn't need to see me again for at least another year. I had to see the pediatric dentist because during a few of my really hard seizures I loosened a few of my bottom teeth. He said that they will tighten back up and as long as I don’t do it too often then I should be able to keep them and not have any problems. My seizures are still not under control so Mom and Dad are changing my meds around again and if that doesn’t work they are going to look into the Ketogenic Diet for me. I guess that’s about it for the important things, basically I’m doing great, looking handsome and keeping busy!!
July 13, 2007 As usual mom’s been slacking so I have a lot to update on. I’ll start where we left off… My trip to Washington went very well, they took lots of pictures (x-rays) and even put a camera down into my stomach to look around, mom said that I am just so incredibly handsome that they wanted to see if I’m as good looking on the inside as I am the outside… turns out that I am!! Everything looked great, they didn’t end up putting in the G-J tube, they changed and increased my reflux meds and increased my daily water and I’m doing GREAT! My Grandpa John came to visit for a week so I got some extra cuddle time in:o) I’ve had some amazing accomplishments. I got a communication device on loan through therapy, it has four large buttons that mommy and big brother Carter record messages on for me so I can talk, the two messages I like the best are “bath time” and “wanna play”. Mommy says if I work really hard and show that I can use it than they will get me one of my own. It’s going to take a lot of hard work but it’s looking like I’m going to figure it out! I have so much to say and I can’t wait to start talking! I have been doing great with my upper body and head strength, I’ve even impressed my therapist with all my hard work! I went 6 long and wonderful weeks seizure free!!! I’m have a few a day right now but I’m not complaining, it’s much better than the 12 a day I was having and I know that I’ll be seizure free again. Mommy and Daddy finally figured out that I have some allergies and found a new home for our kitties and since then my breathing has improved so dramatically that I no longer have to wear my neck brace (I had to wear it to keep my chin up and airway open), I haven’t worn it now for three months!!! I turned 3yrs old on the 11th!! What a great day I had!! Mommy made me a caterpillar cake with my favorite colors (red and yellow) and even put my nickname on it (bugaboo) and I got to eat some frosting YUM!! Since I’m a big boy now Mommy and Daddy took me to my first movie! We went to Ratatouille, I really enjoyed the lights and action all around me, there was one part that was a little noisy and mom had to cover my ears but the rest of it was great! I got some new toys and books and a Twilight Turtle (constellation nightlight) but my greatest gift by far is still a work in progress. Mommy and Daddy got a digital recorder that they are sending around to all of my family and special friends, each one reads me a story or 5 (I wont name names Grandma *wink*) and then they send it back and Daddy transfers it to my MP3 player which then plugs into my teddy bear and I get to listen to stories from all my favorite people every day!! I have quite a few stories already but Mommy says there are still a lot more people that love me and want to share in this special gift :o) Mommy and Daddy have been very busy preparing for a fundraising garage sale for me, they are raising money to pay for our new van they bought to have adapted for my chair and for my supplements and other things that I need. I have a lot of appointments coming up in the next month or so. I have an appointment with Shodair to see a genetic counselor, I’m going to a new eye Doctor (my eye Doctor moved away so we are going to a new one about 4 hrs away), to the GI doctor in Spokane, WA, to an Allergist to find out what all I’m allergic to and the Pediatric dentist… boy are we going to busy! Next month my Grandpa, Grandma, Auntie Amy and Uncle Kurt are all coming to visit… I’m so excited!
February 25, 2007 Since Mommy started a new website for me I’ve decided to open my journal with some highlights from the past year. Last January Is when I got my feeding tube, it has been so wonderful! I am now able to get the nutrition I need without worry. I am still eating by mouth but only when I feel up to it. In February is when I started my supplements that stopped my seizures for over 2 months and have improved my health dramatically! April 28th my baby sister Aviana Faith was born. I am always very aware of her and I like her until she tries to put my hands in her mouth, then I give a shout out to Mom for some help. She also likes to pull on my hair and ears. The summer was fun, I got to spend a lot of time outside which I really enjoy unless it’s windy, I have a little trouble catching my breath in the wind. In October we traveled by RV to WI and MN to visit family and Auntie Amy married my new uncle Kurt. My little sister must have seen all the attention I get and decided it wasn’t fair so on October 27th she began having seizures as well. The doctors were able to stop them the next day and now she takes medicine just like me. She does not have the same condition that I do but now I have someone in my family that understands what a seizure feels like. On Halloween I dressed up as a hippy with my brother and sisters… we were one big “hippy” family:o) I surprised Mommy and Paige when I blurted out “HI” very loud and clear!! I like to be sneaky and do amazing things when nobody is expecting them! :o) We had many visitors throughout the year. My Grandma and Grandpa Pat and John, My great Auntie Rita and my Grandpa and Grandma Dan and Candi. I love having visitors because I get a lot more cuddle time :o) Christmas was fun, we spent the day with Auntie Jenna, Uncle Jim and my cousins Garrett and Gavin. I got lot’s of fun new toys! I got a stander on loan from my therapist. I really like it but I can’t stand up straight yet because my legs turn blue. Mommy says it will just take a little bit of time, since I’m not used to being upright we have to take it slow. Next week I will be traveling to Washington with Mommy and Daddy to talk to some doctors about getting a new kind of feeding tube called a G-J tube. It goes right into my small intestine and not into my stomach. I have a lot of trouble with reflux and with the new tube I wont have anything in my stomach to come back up. Please keep me in your prayers, Mommy seems to worry a lot when I have to be sedated, I don’t know why? It’s just a nice nap for me :o) Mommy and Daddy are setting up a therapy corner in the living room for me with mirrors and fun stuff to work on with me. My Daddy is working on putting a lift on the front of the house for me. And I have a new feeding chair and a new car seat on the way. What a spoiled little man I am! :o) |
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Hospital starting keto diet |
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Before new wheels |
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After new wheels. Ahhh that’s better. |