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Old 06-30-2010, 02:56 PM   #1
J'sMum
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Join Date: Jun 2010
Location: Maine
Posts: 375

J's Wish Trip Dream Factory/GKTW October 1st-7th 2010

Hi, Not sure where or how to begin here. I started out with curiousity about gktw and stumbled my way upon these forums. I will start by saying thank you to those of you who have shared your stories and inspired me to write a bit about mine.

I'll start out with who we are:
There is ME: Mum - My DH - My DD (17) and my DS (14) Dream Factory Wish Kiddo
well we have had some pretty bumpy roads along the way, my daughter was always our very ill one, she has had pnumonia countless number of times starting with her first round at 5 months old, and she's had it at least once every year since sometimes multiple times despite having pnumonia shot. she has Asthma and arthritis and a hollow bone in her knee and IBS. and she is not the wish child !
My son was always colic as a baby, had an umbilical hernia also as a baby that never went away but despite that he seemed very healthy. until at nearly a year old he was anemic. Now my dr blamed me for this and gave me all sorts of information on "food pyramid" etc etc etc it's always interesting when you are a young mother how easily you are dismissed. and I have to add the fact that i nursed my son for 2 years, and obviously gave him food at the proper steps. and what my Dr did not realize is i had chosen to take parenting classes several years prior to having my son. ( NOthing like turning a short story long is there) ok back to my son.
This went on for several years my son being anemic then not anemic roller coaster.. he grew at a slower rate then my daughter but was very smart so i presumed he was just going to be my lil guy.. then at about 7ish he sorta quit growing now mind you in all this i am dealing with my daughters illnesses and sicknesses so i had not fully become aware that he was not growing fast enough. well in that time frame my son was hit by a car (seperate long story) and that sent things rolling in a different direction.
OK now my son is past the car accident finally and things seem to be once again getting better and at about my sons 10th birthday it hit me.. He is Tiny ! amazing how on a particular day you notice something that has been right before you. he was so small at age 10 that i could hold him up on my hip comfortably. well i took him for a 2nd physical that year and again he was anemic
I started giving him 2 vitamins vs 1 per day and making sure he had the breakfast protein drinks along with his regular breakfast jussst in case i was missing something as Dr's were saying it was something i was doing yet again. a couple months later he had lost some serious weight and begun looking pale this was at the end of july of his 10th year at this point. we started taking him to the dr's weekly asking dr after dr what was wrong. they would just shrug it off say he was ok and send us on our way. few weeks later the bleeding began or when my son finally come to me and asked me if blood was normal ... off to dr's that same day .. Dr says oh well maybe e-coli... son now starts to sleep constantly and is becoming paler and paler, a few more months pass and still taking him to the dr's weekly watching him cry in pain he could no longer walk as his ankles hurt dr's said nothing was wrong.. well long story short Christmas Eve was here.. now any kiddo is excited on xmas eve
not my son
he was tired and seriously looked like he was from another dimension. the color of him was there is only one way i can describe it and if i try it will just get me crying so i wont even try, its just not a good feeling seeing your child that small and that pale and not care that its christmas cause he is fighting to survive( i just didnt know how much he was fighting).
family kept saying "oh his father was always pale too" yadda yadda well day after christmas i took him back up to the dr's this time i meet new dr that is still in training. so i am iffy about her
i finally look at her and ask 1 simple question can you please tell me why my son is anemic? WELL bang.. she looked at me i looked at her course i am in tears at this point cause now i am having to carry my son everywhere he goes he simply cant walk.. she says i want you to go for blood work and i'll see you in a couple days.. my son and i get home after blood work i no more then had just taken his jacket off and boom she wanted to send an ambulance.. hemoglobin was down to almost 4 just under 4 now this was foreign to me i did not know what this meant... but i drove my son cause it is faster then waiting for an ambulance Blood transfusion time.. and thats when life again begun to change... ok so he is admitted finally for testing and dr's are looking at me like i am a horrible woman for letting my son get so ill , i even heard one say something about me out in hallway as i stood in room looking at my son getting someone elses blood .. dont get me wrong i am greatful for the donation and i do donate blood but i was oddly angry that someone elses blood was running into my sons veins when it should be mine.. course when i finally went home to see my daughter for awhile i decided to google up everyone of my sons symptoms and it come up to 2 conclusions .. Leukimia or Crohn's.. BOTH Scared me so it become a waiting game took 1.5 montsh to finally diagnose him and he did in fact have Crohn's disease. his gets so severe that he gets the ulcers inside his mouth in esophagus all thru entire digestive system hios colon already looks black in areas and has several spots dr's could not even get to with a scope. he also gets the ulcers on top of his head and gets a rare crohns rash all over his arms n legs when he is having a severe flareup. with this Crohns he has arthritis .. gets migrains and easily tires.. well this has started a long road of every 6 to 8 weeks he goes in for infusions and takes a slew of drugs in the morning just to try and avoid a flare up. can have no whole grains .. only white breads no fresh fruits and veggies unless its a melon with no seeds.. the list goes on and on .. easily summed up.. If its good for you its bad for him. Even though i was feeding him correctly whole grains plenty of fruits and veggies etc etc for him all those years i was feeding him incorrectly.. so In short Crohn's disease .. before my son was diagnosed i had never heard of it now i wish i never had. there is more to the whole Crohn's than i have listed here as far as complications can go but as far as letting you all know why J' is so in need of this trip and his sister too this would be why... EEgads a book sorry all and sorry for all the typos !!!! and after this background i can start telling more about the Upcoming trip !! something positive finally :D

Last edited by J'sMum; 07-08-2010 at 09:55 AM.
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