i'm starting a blog.  well i guess i've started a blog.  and this is it.  i've been wanting to do this for a number of years, but haven't had the time or concentration to do it.  i want to document life with my babies, namely my beautiful boy, so i don't forget anything.  i haven't been sure where i should start or how i should go about this whole blog thing, so i'm just going to wing it.  it'll mostly be like an online journal for me, so pardon the poor grammar and improper writing form.....i think in all lower-case in my head.  :)

so i'll start by giving a brief background of what's been going on in my life, and i'll just have to fill in the blanks as i go......

i have 2 kids.  a 6 year old girl, aubrey.   and a 5 year old little boy, connor.  aubrey is such a sweet, energetic, smart little girl.  and she's the best big sister to her little brother.  connor is my sweet boy, my beautiful boy.  he's special. for many reasons.....connor is currently undiagnosed with some sort of neuro-degenerative brain disease.  which means his brain is atrophying, or shrinking.   he has an "unspecified movement disorder".....which means that if he's awake, he's moving.  he can't control his movements and because of his brain disease he can't swallow properly either so he aspirates anything he swallows.  he is strictly tube fed, with a GJ tube that was surgically placed in his stomach.  the tube feedings bypass his stomach and go straight into his jejunum (intestines) so he doesn't throw up.  

let me take you back a bit.......connor was born seemingly normal-----on time, nothing traumatic at birth.   he always seemed a little 'jittery' and definitely cried a lot, but his doctors just chalked it up to colic.  around 3 and a half months, however, he stopped eating.  he wouldn't let me stick a bottle in his mouth, he would writhe and scream.  after about a week of trying to force feed him, we took him to the hospital to get a NG tube (nose tube) so that he could get some nutrition.  that's when they did a swallow study and found out that he was aspirating everything he swallowed.  i felt so bad!!  here i was, trying to force feed him for a week and he was trying to tell me i was drowning him!! :(    so ever since then, the doctors have run test after test and cannot figure out what is wrong.  the only test that really comes back abnormal is his MRIs which show that his brain is atrophying. he had his saliva glands removed completely because of all the secretions he was having, and i suction him all day long in order to keep his lungs as clear as possible.  i've taken him to the MAYO clinic in Rochester, Minnesota.  my dad and i went there with connor for a week long testing stay when connor was just around a year old.  they did numerous tests, including a muscle and skin biopsy and everything came back normal.  just recently my dad and i flew out to the hospital in Rochester, New York to the top neurologist in the country when it comes to movement disorders and diseases of the basal ganglia (the part of connor's brain that is shrinking most)   but he had no answers either.  it was a hard trip :(

so now we are just living day to day, hoping connor can stay physically healthy with no bad illnesses, especially this winter.  so far, so good.  crossing my fingers!!!  i love my sweet boy so much and will do whatever i can to make him comfortable and as happy as he can possibly be.  

so i think that's all i'll write for tonight.  i'll have to fill in the gaps and vent about the rest of my crazy life at another time:)