I'M DONE....

i'm so through with toledo and their "ways"...i have asked about getting vince a vest since before he was 1..i accepted to wait until he was closer to being 2..well here we are 17 months old and he is too strong for me to do his day "beatings" and is almost too much for sam on SOME nights..some nights he still goes to sleep with it...so with the doctors knowing what is going on i consider that medical neglect-on the doctors behalf..so i emailed the hill rom vest company to see what i could do..he was in toledo at the time and offered to stop at the CF center and work his magic..well the stupid butts said that vince is "afraid" of the tape measure..ok thats one things he is no where near afraid of he would play with it! so there is a lie..then they told the vest employee that if i go anywhere else they may not see us again and deny vincent care..seriously? well good cause im tired of their CRAP! im calling cleveland about getting in next week around thursday! vince has a snotty nose and a slight cough (but he is majorly teething molars) and i want a throat culture done VERY soon!!!!! im mad,angry,upset,hurt,and if i werent so mad i would cry! this is just plain unacceptable..i only want the best possible care for my baby boy!!!!!!! cleveland and akron were both willing to try a vest on him in their office and evaluate him in getting one during his 1st visit! cleveland was also SHOCKED to hear vince has had contipation issues since being put on creon but was never given an option to try zenpep..also if we use cleveland and i feel his cough is bad and want any procedure such as an xray done it can be here at Firelands since they are associated with Rainbow babies and childrens!

mommy knows best..AGAIN!

well today we had a second opinion type of ordeal through help me grow! another dietician came out and really just asked TONS of questionsa and gave me her thoughts..before we make any REAL changes,she wants to contact the speech therapist and his CF dietician...she said no child should want to take salt mixed in something like a bottle or fruit..although i know some do.and vince used to in his bottle..and every child is different..she said vince seems to like the "sweet" foods which is why he has only ever eaten were fruits and cereal with juice and juice rather than milk/pediasure...and the only veggie is sweet potatoes...so ok there is one issue..yes he has some behavioral..such as only liking one flavor cherrio (the multi grain) some is the oral aversion such as putting a food in front of him and he cries! another behavioral is when he smacks the spoon for the fun of it..he also seems to not be hungry like he should be..which is why he will fight the food he likes..because he doesnt realize he is hungry..really just all of this makes SO much sense!!!!
**there is a fruit drink like juice we are hoping he will drink rather than normal juice since he doesnt want the pediasure except at night and that he gets full if i allow it during the day..its very nutrional but doesnt have much calorie wise..HOWEVER there is something i BELIEVE called chlorocal..its calories..but instead of needing to be absorbed in fat its carbohydrates so this is something he wouldn't need enzymes with (is what im told) they are also thinking of an appetite stimulant.but we are waiting to see what the G.I. has to say next monday...everyone wish us luck in getting the vest approved tomorrow at another appoinment!!!

from the begining!

ok,on december 24,2008 (chrsitmas eve) w found out we were pregnant. it was conifrmed on december 30th! i was very nautious through the first few months including my birthday! moving on....i was tested around may to see if i ws a carrier for CF,his was the only genetic testing i WANTED done..so since i was positive,sam was tested and he was positive..we went to Toledo for a detailed ultrasound and learned vince had mucous in his colon and it was a high chancehe did in fact have CF..but since it was so close to my due date i opted for no further testing. I'm glad..so i was induce at 40 weeks and 5 days and vince was born at 40 weeks and 6 days weighing 8 pounds 6 ounces! i never wanted a big baby,but now knowing that he was less than this at 1 month but still a good % i felt relieved that he was a big baby..he wore newborns for a few months before moving into 0-3. while i the hospial after his birth he pooped and we actually took pictures! we were so happy and had high hopes he didnt have CF because he was able to poop on his own..i was brestfeeding him and he lost 1/2 a pound in the first 24 hours and was started on formula in addition to my feeds..once he was home he began eating tons..like 6 ounces at a time,but would then puke most of it back up! it came through in his newborn screen that he tested positive for CF..so off to toledo we went for a sweat test which of course was positive..we were devestated and didnt want anymore kids after this..but as we are seeing CF is very manageable and is livable..i dont want the next baby to have CF..but yes are going to have more kids..

***today's news:::: vince has chicken pox! his nose is now scratched open and since he is napping i put a little a and d on it with an itty bitty band aid! he is still eating OK but not as well as we would like..we go to see a GI on the 31st at 1130AM..and once again that vince is taking enzymes he is very constipated..so that will also be discussed!!!! we went an applied for a loan yesterday so we can purchase our very first home! we also were able to file our taxes and are getting more back than last year :) yippie!

ahhh :)

well today was amazing! vince woke up early at 530AM and slept in bed with me until almost 8 (sam leaves just after 530) so we got up,and i made a mistake..i allowed him to have gummy bears..plus he had a bottle at 530,about 5-6 ounces..so i did his TOBI and offered breakfast and he only ate about a 1/4 of it..so i let him have some juice and play around and things..then we headed to the store to get our new friend a birthday gift :) then by time we got home it was already 1pm! so i was like ok lets try lunch..i get out stag 3 sweet potatoes and he ate all except the last bite and the scrapings! i kinda had to sing to him that the food was yummy in his tummy..lol..i did his meds and he fell asleep..so i was able to for once get house work done and prepare dinner..and let me just say that was tasty! so i told sam to try feeding vince stage 3 spaghetti,which at one point he loved! and it has chunks of noodle so sometimes he gags..but not tonight! the first bite he ate and swallowed but looked unsure so we said "yay vince" and he clapped and then we gave him a high five! and he ate all except the last 2 bites! i almost cried..how can things be so bad one day and so perfect the next..he even took his enzymes! so we put some of our food in front of him while he ate cherrios after his spaghetti and gave him a fork and spoon..he had gotten some potatoes on the spoon and must not have realized it..and stuck it in his mouth..of course he spit it out and started gagging A LITTLE! but we told him good job,yay,and he wouldnt give a high five! i am so happy and proud of him! even my dad sounded excited through just a text! vince does go to see the G.I. on january 31st at 1130AM...

my, oh my!!!!!

ok so here is what happened..it wasn't an AWFUL day..but it wasnt great!!! the thrush is gone,the ear vince is pulling on is clear,and his lungs are of course wonderful :) the bad:: EACH person (doctor,nurse,therapist,ect) has a different opinion..then sam and i have ours..

DR "MIC" (not a main CF doc,but still a CF doc at the clinic) says that vince should get the tube! didnt really give a reason though...

THERAPY (speech and OT) say he should get the tube because he is not making progress the way he should and this will be a lifelong battle...

HELP ME GROW- helping us to get more "food" opinions

CF DIETICIAN- one day she says he should get the tube and another says he shouldnt..i wish shed make up her mind!!! her along with the social worker think its all behavioral..umm have you seen him FIGHT??? this isnt..he is TERRIFIED of food..he's MY son i know him better!!!!

CF SOCIAL WORKER- thinks i should only feed him in his highchair 3 times a day and not let him have anything else..not even a freaking drink!!! does she want him dehydrated???? he is always fed in his seat,or atleast we attempt it!!! and right now im about willing to let him eat anywhere he is comfortable!!!!

**so my thing is **I** think the tube would both still be good and bad..but more good..he needs his meds,and he needs food..but yet since he has started eating a little again i would like to once again work with him..i originally wanted to wait until he was 2 to begin with but with him not eating ANYTHING for a week i was worried..what mom wouldnt be?! and sam says we should continue trying what we have been and wait with the tube..

vince was also refered to a G.I. doctor right above the CF center..gee just what im looking forward to,more appoinments..but i am hoping it helps with answers..his name is dr bobo..no joke :) what do you all think??

thinking,thinking!

it's the night before we go to the CF clinic! and im SUPER nervous! vince FINALLY ate something today! between 5pm and 830pm he had 3 of the single size cups of flavored applesauce! he ate for sam! 1 1/2 per sitting! of course im happy and excited..but he still had that look like he wanted to puke through his bedtime routine! but he kept it all in amazingly! 1st day in almost a week without puking and eating without a fight!!!!!! but i'm still worried for the obvious..they mentioned he may need admitted if hes not eating..and i REALLY dont want to be yelled at..BUTTTT..vince hasnt taken any oral meds since wednesday night..we still try giving his zantac but he spits it EVERY time..he also has had no enzymes as many nurses and doctors say this can bother the thrush A LOT! well guess what! i want a poop fat test thingy ma bob done because vince's poop is NOT greasy as it should be without enzymes!!!!! so if he does need them its definitly not what the docs have him on..when he got enzymes with every meal like he was directed he became VERY constipated!!! even if it was only 1 per meal...i just want vince to feel better and to KNOW whats going on! i also LOVE having my new friend brandi (another brandi :) her daughter is going through some of the same with not eating (but for other reasons) we are also the same age!!! it feels GREAT to know of someone who knows the frusterations of meals!!!!

just....

i really just don't know what to do! i have made the choice that a feeding tube yes would be the best thing for vince! However since i found out he has thrush i am hoping he will eat something by monday..right now he is just screaming at the sight of food!!!! his food (yogurt) my food (baked raviolli) but is still drinking 5-6 ounces in a bottle about 3 times a day! i called the CF center since everything (all the fighting with vince) makes sense and falls into place! he fights his treatments,CF center says these can irritate the thrush but to continue with them and brush his teeth and tounge VERY well after! he will currently not take ANY oral meds..i will not eat even a BITE if food for enzymes..his poop isn't and hasn't been greasy, in fact has been a bit hard but not like mirilax hard..so im not doing the enzymes,i try his zantac and he spits it everywhere instantly! the doctors know he hasn't had vitamins or salt for quite a while now and we are working to find a way to get them in but no luck! the CF center also said to NOT use probiotics to just brush his teeth better..ok first off he gets his teeth scrubbed twice a day with a baby/toddler tooth cleaner! but hello! he has an oral aversion, i do the best i can! the CF center is always telling me not to take him anywhere but to them for any type of treatment because no one has experiance with CF..well maybe the CF docs need some experiance with oral aversions since vince's was caused by having to force all this F-ing medicine!!!!! im so frusterated STILL!! he cries all day..my sister and i had a lunch date and he cried through that..luckily we went to a not so busy place! he threw up this morning from the oral nystatin which means he also threw up his tylenol..and something must not be working in his stomach because when he threw up he hadnt had any form of milk or pediasure for about 8 hours before hand!!!! i need to start my list of questions for the docs on monday..i finally come to admit that even though "I" want vince to look normal and not have scars on his body that right now its whats best for his health!!!