Standing in my toybox =)

Standing in my toybox =)

Saturday, November 27, 2010


ok sooo...last night i heard something went wrong with a friends CF test..and looked about every 5 minutes to her page hoping for an update..but nothing came until this afternoon..saying how this sweet inncocent 4 year old cutie may need a lung transplant...seriously? how can someone be healthy for part of their life then all of a sudden slide down's not fair..there's not been a moment today where i thought today how is vince going to progress? will he be ok? am i doing everything possible? he means so much to me..i just hate seeing a 3 year almost 4 year little girl have to come home early from her make a wish trip because shes sick and in pain..its a wish..cant CF take a 4 day vacation? and a 4 year old,cant she go to school and play with her friends? and a 7 year old,why did CF take him from his 2 younger brothers...vince is my life..and tonight i honestly can not take my mind off of these 4..because vince is included...i love him to pieces and just hope to be doing everything right

Thursday, November 11, 2010


ok to we went to the dr today for vinces CF check-up...his o2 was down a bit at 98..which is still good but he has only ever read that low after he gets outta surgery..his weight was also down a little by 4 ounces..but since hes still at 55% the drs are not for the puking,we are to mix 1/2 pediasure 1/2 milk...we were given chewable vitamins,we are to crush and give him 1/2 a day in applesauce...his little boy private parts were very red and "raw" looking..we are to give him a very warm bath every day with mild soap,and use aquaphor,if it spreads or does not get better he will be having testing done..the doctors were also ok with the fact the i have decreased his relieved...he got his 2nd dose of the flu vaccine and got his 1st hepitits A vaccine..over all things are good,just a bit worried about the rash..could be STAPH not MRSA..we were told staph is on everyones skin but when something such as a diaper is rubbing the area it can become infected but at this point does not look serious..also i got a list of all the times hes been to the doctor and his diagnosis' says CF,CFRD..and something else-i dont have the paper in front of wondering why i was never told about CFRD and if maybe his blood showed high sugar levals at some point..this is so far my big question for next month...i will be mentioning this to sam as soon as he walks in the door...