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!