Thursday, July 28th 2011

Uhhhh ohhhhhh today I got a little frisky with my fingers and pulled out my tummy tube. Mommy said she doesn't know how I did it but it wasn't hard at all really, I just grabbed and pulled. Hopefully I'll get it out for good soon anyways. The doctor told mommy today I'm doing so well and everyone is very proud of me. I guess I have to be atleast 5 kiligrams before I can get any treatment and infection free as well. So far so good because today I gained 85 grams. Everyone is hoping that my weight is real and not just fluid again but I'm pretty sure it is because this time I dont have a problem breathing. The doctor also said that I can't gain weight too fast because it'll be too hard on my little body. Gain weight but not too much weight. I dunno it's all too confusing to me. I got to have a nap with mommy today on her and daddy's bed. It was so comfy all snuggled up with mom. We slept for hours. I love my mommy! :)

Wednesday, July 27th 2011

Well I guess I should give an update on how I've been feeling lately. It's been a few days since I kept everyone informed. I haven't had any big changes really besides the fact that I'm doing AWESOME!!! I drink my bottle pretty good most of the time. I'm up to 80mls now but sometimes I only get part of it in my tummy so they put the rest through my tube. Daddy finally let mommy use my tube, he was so scared. She tops me up through it instead of the nurses. I've been growing like weeds too! I'm up to 3850 grams now and mommy said we are going to have a 10lb party so I still have lots of growing to do. Mommy and daddy let me lay on their bed all the time now. I like to lay on my belly and talk to mom and dad. They get a big kick out of me making my noises. Mom and dad have also been leaving me with some nurses so they can go on dates. I'm glad they get to go out but I really wish I could go with them. Today I have to get my sixth needle for my treatment. The doctor only wants me to have it once a week now instead of twice. He said my lymphocyte count is going up too fast so they would need to give me more chemo if it got too high. I definitely don't want that and besides one big poke a week is enough. Oh and I have a new nickname...it's Mr. Cranky pants. Thats what mom and dad call me. I have a lot of calories in my formula which makes my belly sore so I've been doing some crying and just can't seem to get comfortable. I hope my tummy gets used to it because I need those calories to grow and get treatment and get out of this place YaY!!!

Friday, July 22nd 2011

Woooohooooo!!!!!!!!!!! They took the tubes out of my nose and my oxygen is still great. The doctors told mommy and daddy they want me to drink more too and drink did I ever. Five minutes and I downed 45mls, then ten minutes for 55mls, then eleven minutes for 60mls. Dad said I just punished it. Everyone is telling me I'm doing awesome and I think I might believe them. I've been feeling much better the past few days. My breathing isn't so fast, my oxygen tubes are out, and I get to drink food. I smile all the time now and I make noises to let people know I'm around. Everyone seems to get a big kick out of it so I like to keep them entertained. My WBC's are back to normal and my inflamatory markers are down. I got another big poke today for my treatment and only cried for a few seconds. Daddy gave me my sugar and water this time so I got lots. Yummyyyy!!!!! My big tube in my head stopped working tonight so that was an even better reason to take it out. I cried a little but only because they ripped my hair out taking off that sticker on my head. Ouch! Mommy and daddy were so excited that they took me over to thier side of the room. I got to sit on thier bed and everything because I had no IV and no oxygen. Just one more tube to go and I'll be free. We got a little bit of news today about my bone marrow match. It turns out none of my uncles or aunt matches my tissues. My uncle Vinnie is the exact same as mommy though so the doctors might have to test my cousins. Everyone pray I get a match!

Thursday, July 21st 2011

Splish splash in the bath this morning. I think I'm starting to enjoy it a little, so warm and relaxing. I wanted to get all freshened up for all my visitors. Today was a busy day. People were coming in and out all day and mommy and daddy didn't get much of a break. I slept the whole time so I didn't even notice. The doctors said if I was a good boy they might let me drink out of a bottle today. Mommy was so nervous that I was going to choke or forget how to eat. I showed her because I gulped it down in no time. They would only let me drink a little bit but it was better then nothing. They also turned my oxygen down a tiny bit because I was doing so great. Also I might get this thing in my head out tomorrow. All the doctors will talk about it and make the big decision. Mom said she was scared for all the changes but I showed her I could do it. I hope tomorrow they give me even more food. Yum yum!

Wednesday, July 20th 2011

Red stuff, red stuff, red stuff! They got me good this morning with all that poking and took it from my arm again. Mom told them they better get it on the first try and they did. They told me they were impressed with how good I was and of course mommy was there to make me feel better too. She holds my hand, rubs my head, gives me sugar and water and talks me through it. Mommy left today for a few hours with auntie Nicole and Crystal. I got to hang out with daddy for a bit and have some man time. I cried most of the time. I like to test my daddy's patience and he passed the test. I love my dad! The doctors said my chest sounds clear today and they think my infection might be on the mend. Hopefully they are right because I would love to get rid of some tubes.

Tuesday, July 19th 2011

More antibodies today, the doctor said my levels were low again.. Will they ever give me a break I'm so tired. Atleast I didn't have to get poked again today or get any red stuff taken. Daddy went to work today in Halifax. He'll get to stay here with us until all my treatments are done. I'm so happy he gets to stay here because I missed daddy and so did mommy. Mommy said we won't be moving to BC any more because I have to stay close to the hospital after my treatments. Mom said it was the only good news to come out of this whole mess. The doctors told mom and dad today that I have a 40-50% chance of not being able to hear and might have some problems learning when I get older. It's all because of those stupid toxins in my body that are hurting all my organs. Mommy told me not to worry about any of that right now because she will make sure that I am a smart cookie. We've started early doing the alphabet and numbers and Nan is going to buy me flash cards so mommy can work with me everyday. I love you and miss you Nan! xo

Monday, July 18th 2011

I got some red stuff taken from me today. They woke me right out of my sleep. Mommy said she was so proud of me because I didn't cry once. I'm getting used to all this poking. I also got my fourth big poke in the leg for my treatment. I cried with that but thats a really big one. Mommy put me in this thing that rocked me all around today. I loved it! It calmed me right down and I smiled the whole time. I guess my mom and dad like when I make all these faces and noises, they get really excited and flash bright lights in my face. Mom says those will be for facebook. The doctor gave me more stuff to make me pee today too. I wish I didn't have to pee all the time because it burns my bum. Mommy puts all this gooky stuff on it when she changes my diaper. It's so annoying! I try and pee on her every time. I got her and the nurse good today. I peed and pooped all over them. That will teach them for pickin at me ha ha!

Saturday, July 16th 2011

So I guess I missed all the excitement last night. I had such a busy day that I just couldn't keep my eyes open to see everyone at the dance. Mommy said everyone got to see me though so that was the most important thing. Mommy and daddy said everyone was dancing and having some yummy drinks. Mom said she wished her and daddy could have had a few drinks with friends but the three of us were there in spirit. She said people really love me and gave me donations to help with all the expensive treatment I'm going to be getting. Daddy and mommy said they were so greatful to have such amazing people to help us. Mom said I'll get to meet all those people some day. I can't wait! I'll be able thank everyone in person for all the hard work they did just for me, but for now I will say thank you from a distance. From the bottom of my little heart, THANK YOU! xo

Friday, July 15th 2011

I had a rough day today. I got my third poke for my treatment today which I am sort of getting used to. Mommy had to help the nurse hold me down but she gave me this sweet stuff that kept me occupied while the nurse stuck me. I saw mommy cry today for the first time in a while. She said we got a bit of bad news that will set me back again. The doctor told mommy and daddy that I have new stuff growing in my lungs and that none of my medicines are working. I got all new ones today that made my tummy sick so I wasn't very happy all day. Everyone says I go ahead a step and go backwards two. I don't know what they are talking about because I can't even walk yet. Mom did say there was some good news today though, people are having a party just for me. She said there are some very special people in her life that organized a dance. Mom said I'll get to see them all on the computer tonight. I'm so excited to see everybody. I miss having lots of people around. I hope I can stay up that late.  

Thursday July 13th

I had an exciting morning today. Mommy and daddy let me out of my crib and I got to sit in a chair on the floor. Well, not exactly on the bare floor because anything that touches the floor has to be thrown in the garbage. Daddy put a blanket down and they scrubbed all the germs off the chair before I sat down. I got to see a whole lot of new things. My nan and papa were here this week to visit me. They spent most of the time looking at me through the window but one time mommy let them come in the room just for a few minutes to get a quick peek at me. They had to dress up all funny just like everyone else. I also got to see uncle Christopher and aunt Lisa through the window. I miss everyone, especially my cousins. I can't wait to play with them again. Mommy says once I get a bit stronger and get some treatments I'll get to see my family again. Miss you guys...xoxoxoxo

Monday, July 11th 2011

This morning I was really happy to see mommy. I gave her a smile and she went crazy. She told da to get out of bed and come look but he was being a sleepyhead. I'll do lots more of that anyways. Another important day in my treatment today, I got another sharp poke in my leg. I cried again. Mommy says I'll get used to it because I have to get big pokes twice a week. I like the snuggles I get after each poke. It makes me feel better. I love mommy and daddy.

Saturday, July 9th 2011

I went a little backwards today says mom. I had to get those tubes up my nose again to help me breathe. I hate those things. I gave mom and dad another little scare. I'm pretty good at doing that. Mom always says shes getting grey hair from all the stress I give her. I also have another tube that goes down my nose and into my belly. Thats how I get all my milk. If I drink through a bottle I choke and throw up. I'd rather keep the food in my belly. Mommy says it will help me grow nice and strong. I get medication that makes me pee and I always have soggy diapers. Mom has to change my bum all the time because it's red and sore. I cry when I have to get changed. I have this white stuff on my tounge too so I get special medicine to help take it away. Its yummy but I get more of it on my face then in my mouth mom says. Hopefully tomorrow is a better day.

Friday, July 8th 2011

Mom and dad said today was a very important day for me. I started my first day of temporary treatment. They said it's just for a little while until the doctors all over the world make the big decision where I get to go. I got poked in the leg and it really hurt. I cried for a while but mommy gave me lots of cuddles and I forgot all about the pain. I also got antibodies today. This was the second time for those. They will help me fight off tiny germs that might hurt me but not the big ones so we still have to be very very careful.

Wednesday, July 6th 2011

Mommy told me that tonight lots of people are praying for me. People that know my mommy are going to church just for me. It is a special night. Mommy and daddy say thier prayers all the time now. They say everything will be ok and I don't have to worry about anything. All I have to do is grow and everyone else will do the rest.

Friday, July 3rd 2011

Today a man came to see me and put water on my head. Mommy, daddy and uncle Josh were there too. Nan and papa got to see me on the computer and nanny and poppie looked at me through the window. Daddy said Josh was my godfather and he loves me lots. Uncle Josh makes all kinds of funny jokes. I wish we could play but no one can touch me but mom, dad, and the nurses and doctors. Mom says she dreams of the day when I can play in the mud. Me too!

Saturday, July 2nd 2011

Mommy and daddy told me lots and lots of people are thinking about me and sending prayers my way. Mommy said there's a group of girls who love me lots too and they are washing cars today to get me lots of money for my treatment. Mom and dad said I'll have to go on a plane to a new hospital soon to have new people poke at me. I'm not scared though because I'm a tough little man. Daddy said once it is all over we can have lots of fun playing with bugs and germs so I can't wait. The doctors tell mom and dad that I might lose my hair but thats ok because then I'll be like poppie Vaters and hey it's only hair mom says.  

Tuesday, June 28th 2011

Mommy came back today YaY! I missed her so much.

Friday, June 24th, 2011

Today I got to take a trip in a tiny box to a new room. I'm going to miss all my nurses and doctors but mommy and daddy told me I'll make all kinds of new friends on the new floor we are going to. I get a special room and my new nurse said I was the first of my kind to use this room. It has two big doors that have to be shut all the time and everyone dresses funny to come and see me. I get to see mommy and daddy's faces again though and that makes me happy. Mommy and daddy tell me all kinds of good things that are going to happen to me in the next few weeks and months. They said I will be getting a lot of attention from lots of people. Mommy says I'm one in a million. Mommy had to leave today because she wasn't feeling well. Looks like it's goning to be just me and dad for a few days. I hope he knows how to change my bum and put milk in my tummy. I'm going to miss my mommy.

June 19th 2011

YaY! Daddy's home! Daddy was sad when he saw me today but I was so happy to see him. I love my daddy!

Saturday, June 18th

This past week was very busy. Mommy says I'm such a little fighter and I'm so strong. I had lots and lots of tests. Lots of red stuff taken, machines taking pictures of my lungs, heart, kidney's, gallbladder, and stomach, big pointy things sticking in my hands, feet and back, people sticking sticks in all kinds of places but worst of all they cut my hair to put a long tube in my head. It was so exhausting I couldn't take it so I had a little break and stopped breathing. I don't remember what came next but mommy says she was talking to daddy on the phone and heard "CODE BLUE ROOM 734". Mommy said people came running from everywhere just to see me. Mommy said they gave me a good pound on the back and I woke up. I remember mommy crying and the doctors telling her to sit down. They were scared she was going to passout. I was wanted to be snuggled by mom and wanted daddy  to come home. Mommy said daddy was away long enough and was hopping on the first plane home to see me. I'm some special to have a daddy who travels across the country just for me.

Monday, June 13th 2011

I got to drive in an ambulance today. Mommy told me we were taking a trip to a new hospital with all kinds of sick kids. She said the doctors at the IWK are some of the best in the world and they will find out whats wrong with me for sure. It was a long and bumpy ride and everytime I would get comfortable mommy and the nurse would wake me up. They said I was being a naughty boy and that my oxygen was dropping too low. They put this big mask on my face to help me breathe. It wasn't very nice. Mommy was so excited when we finally arrived to the hospital. She said it would all be over soon.

Sunday, June 5th

I got lots of tests done today. Another trip under the big machine for pictures and more red stuff taken from me but this time from my arm. Mommy stayed with me the whole time but nan went for a walk. We both didn't like that part but mommy says I'm tough like daddy. I also got my first IV today. The nurses took me away from mommy for a little while so I could be poked. I didn't like that either but mommy's right, I'm tough. I have this thing on my foot that beeps all the time. It tells the nurses when my oxygen gets low. It beeped and beeped and beeped so they put these tubes in my nose to help me breathe. I don't like them at all so I try and pull them out. Mommy keeps putting mittens on my hands but I fool her because I can get them off.

June 2nd

I went back to see the special doctor today. He said we get to spend the night at the hospital so nurses can watch me. I love being watched. Mommy says some day I'll have to beat the girls off with a stick. Daddy told me he'd tell me all about that stuff when I get older. I get to talk to daddy on the phone everyday, well daddy gets to talk to me most of the time. Sometimes I make some noise so he knows I'm there. He really missed me today.

June 1st

Today I got to see my doctor again. I haven't been feeling so great the last week. I feel hungry but can't seem to keep my eyes open long enough to eat. I sleep most of the day and night away. Mommy tells the doctor my respirations are high. She tells me I'm like a choo choo train huffing and puffing. I had to get poked again today and be held under this big machine to take pictures of my insides. It was chilly in there and I didn't like it. Mommy held me down and I cried but she promised me all the toys I wanted when I got bigger. I also got to see a special doctor today too. He watched me drink my bottle and listened to me with this funny thing in his ears. Mommy tells him all my problems. He picked at me for a while but I just wanted to sleep. He says I have a lung infection. We went home for the night and mommy stared at my the whole time. She loves me lots.  

May 24th

Today my mommy and nan took me for my first visit to the doctors office. I got weighed again but didn't seem to change any since I left the hospital. It's probably just a different scale says mom. The doctor wants me to come back next week just to make sure. I love my doctor, mommy and daddy tell me shes great! Oh and she thinks I'm great too! 

Monday, May 23rd

Mommy and daddy were sad today. Daddy had to leave and go back to work. He says some day soon we will all be together and I can't wait! Daddy gives the best snuggles. He also walks around with me all night long when I can't sleep. I love my daddy! Mommy Gave me extra snuggles today too! We spent the day hangin out in mommy's bed. That's my favourite place to sleep these days.

May 16th

Ohhhh Ya! I get to go home again for the second time but I still have to come back to the hospital a few times this week to get poked. Everyone says I'm looking really yellow but I still think I'm pretty cute and mommy agrees.  Dad tells me my 2 goofy uncles are coming to see me this weekend. More beers are in store but none for me.

May 15th

I got poked in my foot by those lab coat people again today and they took more red stuff. This time the doctor tells mommy and daddy I have to spend the night tanning. Ohhhh I hate those bright lights. Mom and dad say I look like a little glow worm but I'd rather be in mommy's arms all night. The nurses let me watch tv with them sometimes though so mommy and daddy can have a break. I hope there's something good on tv tonight.

Friday, May 13th

Yay! Mommy and daddy say today is a big day. We get to go home. They say I will love it there and lots of people are looking forward to seeing me. Papa and nan have been looking at me and shinning bright lights at me all week. Papa says he'll put them on the computer but mommy says that might take a while. Dad says it's time I  meet nanny and poppie Vaters. They are coming to see me today too. Poppie Vaters will have lots of beer. Mommy says I won't get to have any of that stuff but daddy says he'll sneak me some when I get older.
The doctor told mommy I'd have to come back to the hospital tomorrow to get poked again...ughhhh how annoying but wooopie I get to go for an extra drive in the car, even though I hate those straps they put me in.

May 11th

I've spent the majority of the last 2 days sleeping and getting poked at by these people with lab coats. They like to talk with mommy about how cute I am but I just want them to hurry up and let my foot go. They collect all this red stuff and say its for tests. Mommy says I'm a good monkey everytime it's over. I don't know what monkeys are but they must be something special if i'm one. I hear lots of talk these days about this bili thing and lights. The nurses and doctor tell me I get to go tanning. This should be interesting.

May 9th

After 30 long hours and a lot of coaching from daddy, nan, and aunt Lisa, I finally made it out to see mommy and daddy for the first time. Everyone was crying and saying how awesome mommy did but personally I think I did all the work. It took me a little while to catch my breath and I was freezing cold but after a while I enjoyed being out of there and of course loving all the attention. Mommy says I'm a ham already and people say they could just eat me but I'm not really sure if I want that to happen.

May 8th

Today at 1:30 in the morning while mommy and daddy were txting back and forth I decided to suprise everyone by coming a few weeks early. Mommy was always talking about me being born before my due date so I figured it was time. Mommy and I also missed daddy a lot so we knew if I was born then he would come home and we were right! As soon as daddy heard the good knews that mommys water broke, and with a little convincing from uncle Christopher that I was definately coming today, he hopped on a plane to fly accross to country to be with mommy for my arrival.