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I miss you now, my heart is sore, as time goes by, I miss you more. Your loving smile, your gentle face, no one can ever fill your place.
Thank you to all the Doctors & Nurses @ Mount Sinai Hospital AND HUGE hugs to all the doctors and nurses at Sick kids in Toronto. Dr. Calderone, Dr. Seaward, Dr. Menon, Tracy, Brenda, and to Mary for being the nurse on duty to help me hold my son for the 1st time, the 4D nurses, cherish, amanda, nicole, sarah, kelly(all the girlfriends)
Congradulations I am finally here to : Mum and Dad, Aunty Erica, Unckie mike, Aunty Kerri, Mazzin, Ian, Grandma C, Grand-dad J, Granny B, Grand-dad E, Grandpa Eddy, Nana Pat, Aunt Penny, Opa Eric, Grandma
Kathy, and to the rest of the Lamch, Linck, and Burns family and friends. (,my girlfriend megan)
NEW UPDATE FROM DAIMON: hi! i just wanted to tell you guys that today (feb 4th 2004) i've now been waiting for a brand new heart for exactly ONE week! I'm doing okay but kinda fussy! I've had alot a visitors lately, i now know how to SMILE! (i've been practising alot!) well, if i could ask you ALL for 2 FAVORS please....1.) say a prayer! and 2.) fill out your donor cards today...cause everyone that does gives new life! thankyou! and takecare!
FROM DAIMONS MUMMY: please check our site once and awhile to see updates on daimons progress! thankyou to everyone that signs our guest book!
FEB 9th 2004 FROM DAIMON: hello! well tomorrow it will be 2 weeks i've been waiting. yesterday i gave my mum and dad(and grandpa's and grandma's and aunt jen too) a little scare...i had a fever of 39 (cel) and my Heart Rate went up to 205.... but i'm better today. I'm sleeping alot today so that i can get my strength up.....nothing can Hooooold ME down..nope!
Feb. 19th 2004
From Daimon: Hi everyone! i had a busy week! my meds have been changed to make me a happier baby! and its working. I've been giving my mum a smile everytime i see her. Thats how i say hello to everyone now. I met my unkie mike for the 1st time this week! And we all had a great time. My new thing i've been working on this lately is copying my mum. When she says ooooh, so do I! when she says grrrrr, i growl right back at her! Than we have a great laugh! One of my nurses bought me a toy, and it rattles and squeks and is my new favorite toy! well I'll write again soon! Take care! thankyou for your prayers! and if everyone could tell one person how important and special it is to be a donor than that would really make me smile! thankyou!.....love daimon..xox
Feb.27th 2004
Daimons update: Thankyou SOOOO much everyone for signing my guest book! Big Hugs and lotsa kisses for everyone especially for my friends that have HLHS!! Well this week i discovered peek-a-boo!! my mum is funny! and dispite the fact that my PICC line(the long term line that goes in my arm up to my right artium) wasnt working, and i've had numerous pokes this week...i've been a pretty good boy! a little upset when they poke me, but i'm trying to be brave! My great opa and oma and great aunt monika came to visit me and i smiled for them lots! just to show how brave i really am! Well grandpa Eddy came to visit today aswell and help mum give me a bath so that i look cute(as a button my mum says) for my daddy to come and visit for the weekend! I'm going to show him my new game i play(peek-a-boo)..well time to go nap! love everyone LOTS!!!! oh yEAh!....please look at my photo gallery...THANX!
March.1st 2004
FROM DAIMONS MUMMY: Hi everyone! DAIMON GOT HIS HEART!!!!!!!!!!! YAY! I'm so proud of our little boy! He recieved a type B heart (even though he is a type O) that is called A ABO incompatable. Which means he can get a A,B, or O type heart. He is only the 3rd in the world to receive a heart With a high PRA level. PRA is the level of antibodies. So we're not out of the woods yet! BUT we are on the path!!!! Thankyou everyone for YOUR prayers! Please keep praying in hopes that Daimon will have a smooth recovery and (dare i say) Go Home! wow....thankyou to Grandpa Eddy, Nana, And Aunt Penny, And my hubby(love you always)....I'll update soon....
March 2nd 2004
From Daimons mummy: you all make me cry...what wonderful people you all are! Daimon is going through a few rough moments today BUT the docs are in control....I pray that our little daimon will keep his strenght and win this long battle...thankyou everyone for keeping faith.
March 4th 2004
From Daimons mummy: Daimon is having a few problems now...because of the heart and lung machine he has parts of his brain that are not receiving blood and he is now on meds to control some mild sesuires he has had...He is receiving kemo meds(not radiation) to kill the memory cells in his body that will try and reject his heart...he is going to be okay though...i just know it...he's strong, and has so many of you praying for him...he is the 1st to have such strong anti-bodies...hopefully we will prevail...and pave a road for others that come....
March 9th 2004
Daimons mummy: today daimon is going for biopsy..we will know exactly whats going on when we get that done...hopefully we get a couple of steps ahead of his antibodies...we need some positive steps for the good guys...as far as surgery wise goes...everythng looks good!...i just pray that his little body lets his new heart stay....thankyou all for all your prayers and for keeping up with his updates.
Update from Daimon: Hi everyone! I'm starting to feel alot better! My CT scan came back and looked much better! and so did my EEG! I have mild rejection...which is great. The doctors are very happy with me!
March 14th 2004
Update from daimon: HI everyone! big kisses! well kinda, haha, i'm wearing a mask that gives me pressured support for when i breath because my diaphram is not working that great and the mask helps me alot...i dont like it but it works and makes me feel better...and um besides that i'm still in the ccu but they moved me into a new room and we all are transplants..i'm the youngest one in there so i get told i'm cute all the time..and i am! my mum told me so..hehe..my mum went to get all my stuff yesterday from home so that i can stay with her at the ronald mcdonald (my dad didnt want her to leave)...so we'll just wait and see what happens soon...cross our fingers we can go home soon...
March 15th
Hi everyone! well not too much has changed except today i was speaking to transplant and we discussed daimon going for a easy surgery done to his diaphram...because it has been damaged. They will simply cut his side and go in and stretch the diaphram so that the lungs can expand properly and to aid in the diaphram repairing itself...they are'nt too concerned about it. Another thing is that Daimon will be going up on his Seisure medication..because this morning he had another seisure, hopefully i will be able to sit down with someone to talk about this matter today....other than ALL that (ha!) he is doing fine...his levels are all great and seems to be content! I'll update ASAP...thankyou all for your support, and we look forward to easter so that Opa and grandma Kathy can come visit and see Daimons beautiful smiles....
March 23rd 2004
Well yesterday daimon went upstairs to the 4th floor! YAY!!! and right now as i type we (aunt jen, daimon and i) are all down stairs in the library. Yup thats right! Daimon is allowed to randomly roam the hospital! HA! well under my supervision...I'm so happy that i'm overwhelmed with joy! So i guess by telling you this much, you can already guess that he is doing awesome! not 100% yet...but wow what a huge leap from even just last week. Well we're going to go continue on our walk..Cya! Big hugs from (our free) daimonxox
march 30th
well i just got back from my teachings on how to draw up daimons meds when the rest of the translant team interupted to have a little talk about daimons ECO that he had today. His heart function is down and they want him to have another biopsy tomorrow. So here we go, thats how i feel. My nerves are completly shot at this point, because i didnt think we would be going down this path just yet. john and i have noticed a change in daimons colour lately. I just figured it was because of his low hemoglobin. But yesterday i started to get that sick feeling in my gut that just said things arent going as good as everyone thinks. I even mentioned to daimons doc about 15min prior to them reveiwing the ECO, that he wasnt himself, he has barely smiled compared to what we know him to do. So my prayers will be on top notch tonight and tomorrow morning until i know what exactly we are looking at. They do have treatment for rejection, but it's hard to say what path we are heading down. He will recieve his kemo today and hopefully our rejection is managable. There is 3types of rejection: Mild(what we know from the last biopsy daimon has) than theres Accute (which is the normal rejection that everyone goes through) than theres where we expect daimon to go through, Vascular which is the highest. Hopefully, i pray to god, that this is only accute and hopefully we dont see(if at all) vascular. I also expect us to be staying downstairs after biopsy in the ccu because of daimons resp issue which hasnt been great lately. I'll update ASAP.
April 3rd 2004, Well as some of you might know daimon had his biopsy done and the results are puzzeling. It showed nothing, it has everyone stunned. Even the docs....everyone is speachless on why he is rejecting yet not showing anything, but i know why. Because my baby, was put here, on earth to change it. To help doctors realize that anything can be done! He is recieving a new drug called Ritxamal. Its commonly used in cancer patients but has only been used once in a 50 year old woman that went through similar situations as daimon. I believe that if, Actually WHEN daimon gets through this he will turn alot of heads to show docs that they dont have to ever say no to a person that needs a transplant because of them being highly sensitized. I always knew daimon was a miracle! And he is showing all of his true colours and abilities right now! he is so strong, and i thank ALL of you for your prayers and hope and i beleive daimon will return all of the strength that all of you have brought to him in prayers and wishes to those who may have not been given the chance to have a transplant because of being highly sensitized...i pray that god will help guide my son through this so that he can change medical books forever.
From DAIMON: hi everyone! big hugs and slobery kisses! I'm feeling abit better even though i'm still in ccu, i was sticking my tounge out today at my mum and grandpa, i was even trying to smile today. Anyways just want you all to know I'm 5MONTHS TODAY YAY! and 1month 1week post tranplant! BIG YAY! love you all!
Check out our Journal and photo gallery!!!
**NEW** Please take the time to read daimons journal to find out more about him and myself.
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