Standing in my toybox =)

Standing in my toybox =)

Thursday, August 19, 2010

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 this really normal? i know each CF child is different but how come he always has to be sick or 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 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..

Wednesday, August 18, 2010


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 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 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 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 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 so proud at how far he has come...congrats baby boy

Thursday, August 5, 2010


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 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 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 she was feeding him some we are waiting for him to get unhooked from his he can crawl around and play...