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

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...

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!

cleveland....

well we made our choice..that being cleveland..it really was a long thinking process..and after not knowing what to do i contacted the CFF by phone..i talked to a lady named leslie..she told me from the sounds of it that cleveland was doing a good job..that the only thing i can report is vince being yelled at in toledo..the other stuff is from every clinic being "different" but that i CAN file a complaint about toledo not looking into his feeding issues or the vest..cleveland has been awesome (atleast through email) i asked what happens if vince is admitted..is he allowed home for a holiday,bday,or contest) can he do IV meds at home? the answer is he cant go home for a day but scheduling can be done around a bday or whatever..and if vince tolerates meds he would go home with a picc after 3 days and finish meds here at home..ahhh! such a relief!!!!! cleveland ordered the vest which should be here tomorrow!!!! im really happy that he will be able to get the care he desevers! it SHOULD be less stress on me,sam and most importantly VINCE!!!! i think he would do better being at home on meds!! his own food,clothes,toys,and bed....
ok so onto the family drama..i miss going to my dads..but the last time i was there they all got mad because i wouldnt spank vince for kicking a toy..for one that little baby boy is MINE and i will do everything possible to protect him..then i go on to mention that he goes in time out or gets his hand smacked when appropriate..and my step mom jumps in and says that is considered child abuse! seriously no!!!!! my kid is the happiest cleanest kid i've recently seen in public!!!! he is 18 months old!!! he shouldnt be spanked!!!! i have talked to legal people and they ALL say i am doing the right thing!!!! my dad is still talking to me..however my sister has things posted on FB and my step mom left the day we argued..therefore i am not taking vince into that environment where yelling will more than likely occur! what gets me the most out of this,is that that SAME day my sister and i had went to lunch..were getting along..and agreed with toledo doing wrong by yelling at vince..then the other day says i need to yell at vince so he isnt afraid when others yell at him!!!! wow! really??? why yell at a baby??? i see how other kids act being yelled at..not gonna happen to a baby for sure! vince is doing the NORMAL toddler things!!! he has hit the 2 year old brain early..lol..yes he climbs and gets into things..yes he hits,and pinchs..he is told "no" and then after is put in timeout if he continues..well i could go on and on..but i just needed to get off my chest! i am trying to just keep my mouth shut..but hes my baby boy!

no,no,NO!

so we went to Cleveland yesterday for a 2nd opinion..he had some good things to say..such as vince fit into both the chest wrap and the vest from hillrom..he gave us samples of duocal and zenpep...he would not write for the vest unless we switch all of our care to him..we hated the drive through that much traffic and to top it all of off we had to pay $8 to park after we were told it was FREE? seriously? the rooms were tiny and the doctor was EXTREMLY slow! so i decided to call toledo today since i have tried feeding vince 4 different times today and he wont take anything..he will hardley drink anything! so i told toledo that cleveland was reccomending the vest and they basiccally said well were not gonna approve it until he is 2! if you want it that bad you can transfere your care! and luann (the dietician) wont be back until monday so they wont prescribe an appetite stimulant or the duocal..so what they want him to starve? and since luann thinks this is all behavioral she isnt gonna ok anything anyway! so not what? im not happy with toledo yet wasnt pleased with cleveland..so what do i do now? i am so confused i have cried half the day away wanting the best for vince! and he was still only 25 pounds yesterday! thats been for like 3 months now! please help :(

seriously?

ok so today was Vince's first day back to Occupational and Speech therapy..i reminded the recepionist that i did not want vince to start out with food or where he left off..i wanted him to have a different approach,a slow positive one..which meant maybe no messy play just touching cookies,crackers and such..and trying out new textured toys like bubble whistles and sand..or paydough..he really does not want anything to do with food and i didnt want him overwelmed today! she ahd EVERYTHING..celery,peanut butter,grapes..blueberries..vince enjoyed playing with the grapes because he thought they were balls..then she has the nerve to say he isnt talking..for one if you have heard him at home,he doesnt shut up..here are his words

boggie
baby
booga
dog
mom
dad
fish
ball
more (in sign)

this may not be a ton of words but he is definitly learning fast! help me grow says he is right on target..i had liked the therapists until all of this and now i dont know what to do..i told sam the other day that i wasnt sure if i should even take vince back because he was no longer making progress! the descions NEVER end..
***i am getting really scared and nervous about going to cleveland tomorrow..im excited but yet scared..unless you are a CF momma you cant possibly understand what i feel right now..and if you're not a CF momma i bet you think im NUTS! well im not!!! no one gets what i am saying about his eating and his behavior..his meaness is getting better but i mean his behavior over food..he just acts scared..sometimes he acts not hungry,i just dont know..i want answers for him but i dont even know where to find these answers!

:(

i've been a little sad...vince was weighed last week with help me grow and was just over 26 pounds..sam and i weighed him yesterday (monday) since he hadnt eaten much through the weekend and he was down a pound at 25 now! this was his previous bottle recipie

coconut milk- 2 ounces:100 cal
pediasure-4 ounces: 120 cal
whole milk-3 ounes-75 cal
this totaled to 295

i began adding 1 packet of the carnation instant breakfast and one packet is 130 calories!!!! this brings the bottle up to 406 calories!

also i found out the mexican nectar juices are very high in calorie and vince actually loved them..they are a little thicker than normal juice but he is drinking a lot of it :)
vinces calorie intake has been around only 400 for the past few weeks..with thoe jucies added yesterday brought it over 650! today we made it over 1,100!!! this is HUGE! we are weighing him again friday in hopes he has gained some weight back! we will be going to Cleveland for our new CF clinic opinion on tuesday the 8th! im excited and nervous all in one! and for those who havent heard the front of vinces hair was really bothering his eyes so sam and i trimmed it..he looks adorable and he has eyes! if this were a girl it would have been fine cause i could then put it up :)