Standing in my toybox =)

Standing in my toybox =)

Tuesday, March 15, 2011

and the list goes on...

well vince has staph growing still,and is growing a new bacteria-flavobacterium..the new one could have been a contaminet...the staph has always caused vince trouble when it gets above 1 or 2...last time he was on cephalexin for staph and Psedamonous growth in december..well the 1st 2-3 days he puked the 3x a day he got the med..today i was able to get the 1st 2 doses in through pop without him knowing..so therefore he took it since he loves pop...but the 3rd time he saw the bottle of medicine! so of course he wouldnt drink the pop! he also had diareah and his cheeks were bright red as if he were hot but he had a light jacket on in the car...i took his temp it was 99.4...a bit high but not too bad..hes acting normal so i didnt worry..i'm hoping i can continue tricking him with the pop starting tomorrow! i really dont want to force him into taking this med to the point where he pukes 3x a day and quits eating..im thinking he may need IVs next time if the staph grows again in a few months..but for now his cough isnt bad..it has never gotten like real mucousy or green snot ruuning down his face...he always has a SLIGHT cough..nothing can ever be heard it is always found through xray! soo im hoping he does ok! i love my baby man!
here is our routine for the next 2 weeks:

wake-up > ventolin
vest
flovent
breakfast (vitamin, 2 probiotics)
cephalexin

1230pm> lunch
ventolin
vest
nap!!!

230pm- cephalexin

5pm> dinner

730pm> cephalexin

845pm> ventolin
vest
brush teeth
pulmozyme

Tuesday, March 8, 2011

what a day..cleveland style :)

so today we had our appointment with cleveland..1st off,the dietician,Terri,weighed him..he was 26lbs. 4oz. and was 32 inches..although i do believe his height was incorrect..but it is what it is..he gained 1 pound this month from me doubling his calories and adding duocal when possible..he was at the 50% last month..good..but on the low end for VINCE'S growth...he is back up the scale at the 54%...his milk was switched to boost kid essentials 1.5cal..this has 355 calories in 8 ounces..he really seemed to enjoy it..although he had a screaming fit,and we're not sure what caused it he will be watched closely with the new milk..the dr checked his ears since he has been having balance issues..dr believes he is just going through a clumsy phase but to keep an eye on his falling...some meds were switched,stopped,and put on hold..meaning i have extras of things for those in need..you pay shipping!

he went from albuterol to ventolin..ALBUTEROL LEFTOVERS
pulmicort to flonase..SMALL PULMICORT LEFTOVER
zantac is on hold since he refuses,why fight?
TOBI is on hold until the next culture is back..if its clean i have almost a 28 day supply!!!!!

he mentioned that if his allergies act up this year he will see an allergist to determine the cause and best treatment plan..if a handicap sticker is needed through the summer it will be approved..along with one being approved again around november..vince will be starting hypertonic saline when he turns 2 years old...

he also went to his 1st new speech therapy appointment..it went great..she chose to use the 1st day as a getting to know each other day..they played with toys..vince interacted with everyone..she had snacks out (appropriate for his age) his ate a few yogurt melts and fed the toy dog a goldfish..he just picked up the goldfish like it wasnt a big deal..i was so proud of him today!! he got his 1st balloon (ball-ball) and he played with it most of the day...today went great!!!! but the ONLY bad part..my back is extremly sore from driving there and back again!!! so im taking some excedrin back pain relief and going to bed with warm blankets hoping its better in the AM...

Thursday, March 3, 2011

i just don't know...

i'm not sure why but today i just feel a bit down..i took Vince to WIC..had his little mask on and was proud that he wore it the whole time..they weighed Vince at about 25 pounds..this was with clothes,a diaper,and binky! I had really expected him to of gained atleast something in this past month..we have been adding duocal to his food,benecal to his bottles,an enzyme that is working..and i have managed to almost double his calorie intake this month..yet still nothing..he is still at the 50% park for his weight! so no i shouldn't be worried..but a CFer needs to be on top of things! his lowest % was 46 and that was before he was diagnosed and had pnemonia..understand now? 50% is LOW for him! i just really thought that doing all of this would have made a change! he was 24 pounds 10 ounces in the begining of september and is now only 25..not even a full pound in 6 months! this hurts! i am doing everything possible!!!! cleveland,however DID approve to try an appetite stimulant..so atleast the things he will eat he will take more of,along with maybe more bottles..i still realize the feeding tube may be a good idea,and i am positive it will take the stress off,but i feel as a mom i want to try everything beforehand..he has until he loses weight and then he will need it..i just don't know what to say..im quite saddened..WIC had to catoragize him as slow growth! and i wasnt happy that the lady working with us was coughing..like i said im glad vince wore his mask!