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...

is it getting worse?

i ask is it getting worse..because he has been sick 3 times in less than a year..twice is just 4 months...is this really normal? i know each CF child is different but how come he always has to be sick or coughing..how come i feel like people look at me like im nuts when i say is there smoking? can you wash your hands? no one could possibly understand the day to day events of this disease unless you have it yourself or your child does..i feel so guilty when i tell vince "no" or when he cries...i just want him to atleast be happy if he cant always be so healthy...i feel guilty going tanning and leaving vince at home..but hes with daddy so i shouldnt feel this way...so why do i?how can girls/women that have smoked,drank,and done the illegal drug use while pregnant have a "normal" baby..but an innocent person that does everything possible to keep healthy and safe still end up dealing with a "terminal" disease..the smell of smoke makes me want to gag and vomit..the site of someone smoking makes me want to scream at them...CF is not fair and no one deserves to go through this..

update

ok so back on august 3rd i took vince to his normal CF dr appointment knowing that he was still coughing and throwing up..the doctor ordered an xray..turns out the mucous was too much and turned into pnemonia once again...so they admitted us..they asked if we could be admitted right then and i told them i needed to go home and pack and get the laundry done..so the next morning we had to be in admitting at 930AM..then we were taken right to pre-op..that was scary since he was suposed to get his room 1st then get ready to go in at 11..turns out the had not 1 open room on the peds floor..luckily right before he went in for his line at 1pm instead of 11AM...a room opened up..i didnt want him in the PICU..so i was glad a normal room was open..things went well..we had a 10 day stay..they did a sputum culture after about 5 days..it came back clear of all bacteria..this was a 1st in his life...his xray was looking better so the dr agreed to let us go home after just 10 days..but man did it feel like a lifetime..vince was also told he no longer had any nutrional needs and could have anything his little heart desired...for once it felt a little more "normal" he is now above adverage weighing over 23lbs.but on the short end at just 28 1/2 inches...he is now taking up to 4 steps all by himself like a big boy...tomorrow will be 1 year since i was due...im so proud at how far he has come...congrats baby boy

admission

well vince went to his "normal" checkup on tuesday august 3rd...since he was still coughing and the docs could not hear anything in his lucgs,but knew he cultered bacteria just a week earlier,they opted to do a chest xray..sure enough the mucous was worse than in the culture and he would need to be admitted...so we came in on wednesday and were admitted,before he went in surgery for his pickline we were told the hospital had no pediatric beds open..luckily right before he went in 1 opened up..and it was a new room..so glad =) his arm was sore the rest of the night and he didnt eat much..he went to bed around 1130pm for a nurse..we left around 11:15 as we needed to get our rest and be back when he got up...when we got here the nurse had accidentally woke him up..so she was feeding him some breakfast..now we are waiting for him to get unhooked from his IV...so he can crawl around and play...

SUMMER FUN!!!!

yesterday vince played in his pool and had a great time..he started his bactrim yesterday,and it is not going well...the 1st dose he pretty much just kept spitting it at me..then last night i tried putting it farther in his throat so hed swallow it and he gagged until he threw up..then he fought the rest of his meds and treatments...this morning...the same,except i mixed it with a little gerber berry yogurt.and he took the 1st bite,then started his gagging and once again threw up!! now he is napping and i plan to put him in his pool when he wakes up..

He was pooping really well and im pretty sure we got the blockage out,it was the worst smelling poop hes had,even before he had enzymes when he was born..so he has only pooped a small amount once today so i will try the Miralax once every other day,every day was causing too much poop..sometimes you have to work with different meds to see what works best..like he gets his vitamins and salt in the same bottle and has since he was diagnosed at 3 weeks..other than these issues he seems to be having a wonderful time this summer....however hes been mad cause sam has been cleaning the fish tanks out,and vince cant be on the floor to crawl and get into things..well i am gonna get off here,and get things ready for the pool when he wakes up..here is a picture of him in his pool yesterday =)