proud parents

so we went to the doctor yesterday..along with speech therapy..speech went awful which got my hopes down about the CF center..vince would not eat anything and cried most of the time..he didnt even want to touch any of the food..so we go up to the CF center,the nurse weighs him and he did in fact lose weight because of being sick and not eating..he had no fever and ear was already looking better...he was not put on any new meds..just to continue..his doctor even told me how proud of me he is (including sam) the dr said when a CF baby turns "1" and is at 50% for both height and weight the chance of him dying prematurley is almost "0" so as long as we keep up with his meds treatments and being super duper clean,he has no limit to his age!!!! its a major relief it feels like hes normal but with meds...its not a cure but feels almost as good..and it all because we've done everything to keep him clean and healthy...we also fouund out his gene mutations which are :::R553X and Delta F508

ugh..thinking of changing docs!!!!

today i will use yellow as vince loves duckys...he started getting some spots in his diaper area and on his hips,i knew he could be having a reaction to his MMR shot and be getting measles...so i called the doctor and they say keep him hydrated and call if hes worse..so i call and they wont see him even though his fever continues to go higher,he wont eat--at all..the most hes had all day since 9AM and it is now 3PM is 6 ounces of pediasure and a few drinks of juice...he has only eaten a few yogurt melts..let me just say this is no where near normal for him...the dr says to take him to the Urgent Care..so here after i write this im making a list of all his meds so i remember them all,i want sam to go with us....the dr was not even worried that hes not eating or drinking,or that he has a fever...they say hes not eating because hes getting teeth..no i know my baby and he is not getting any he isnt even chewing on anything like normal...so i better get this list started..but i am VERY upset with our doctors...oh and they will not even let me report this to the state!!!!

hmm???

i really had no title for today...ive been thinking alot lately about CF..vince was admitted 3 times in his 1st year..when they drew blood just after he was 1 they already could not use his right arm because it was too scarrd..so if hes admitted again in the near future by like thanksgiving,im thinking im gonna question a port before all his veins are scarrd but i am not sure yet..he is up to taking more than 4 steps on his own and has 5 teeth..he also says "wiggle,wiggle,wiggle" and in which we think is adorable...here lately it seems as if alot of days have been rough for me...i hate seeing him sick..yes i know there are people living in their 50's and 60's with CF...but what about the young ones?? its always in my mind that sweet conner was only 7..im so scared i will lose my baby boy..maybe i just dont know enough about death and heaven..but i hope my lil guy will live forever,atleast longer than us..and hopefully we get to see him have his own babies..i think im gonna make this short before i burst into tears thinking about it all...