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!!!

a little relief..ahhh...

ok,so finally a little good news..although for Vince i guess it's still not so great, and may make him more resistant to food..he does in fact have thrush! in the mouth, but since i had noticed his "privates" were a little red a raw looking that is having a cream put on as well..i showed the doctor at the urgent care and he looked at vince's mouth and sure enough he has it..he may not be in so much pain but its irritating,along with food going down can burn :( the doctor was not sure what is causing vince to puke when he does eat though. I am to check his mouth once a day and offer NO solid food for 2-3 days unless he "asks"! so we go to toledo on monday as a follow up,we are hoping the puking is caused from the thrush as well..he also is not taking his Zantac like he should be..he either spits it or refuses..so this could also be causing the puking..if we are able to get him to eat that will push the feeding tube away for a while..which would be wonderful!!!! so every lets just hope he can get better and begin to eat..

more....

ok,so vince had an appointment with Help Me Grow...she right away asked about the dark circles under vince's eyes..i told her my mom ha dark circles and that vince has always had some what of the same mark,but that i do think they have been worse than normal and she suggested she thinks we should have his iron tested that he is not getting enough..she also said yes he has thinned out BUT not in his tummy :) but hs face is thinner..he was weighed and was 8 ounces less than on january 4th..on the 4th he was naked with not even a diaper..this time he had clothes and a dy diaper on..i know scales can be different but im sure he has lost some weight..but atleast its in the ounces and not the pounds..vince has had 1 bottle today and 3 cups of juice..he also tried a new cup today its LOOKS like a straw but is a little wider and still sucks on it like a cup..im hoping since he likes it and its a little more like a bottle i want to try the pediasure in it,but i DOUBT it will work! i also showed Tracy from HMG the video i took of dinner last night and she was in a "wow" state..she said it as GREAT that i took this video to show people how serious this really is! we are still waiting on the nurse to call with some dates...

it's happening

it's happening..i have made many phone calls,and talked to many therpists and doctors..vince NEEDS the tube..not only for his weight but also because he has become very whiny and doesn't want ANYTHING..he will "act" hungry and go to the kitchen if ask him that,but when he sees the food he screams! he fights more and more each day to sit in EITHER highchair..if you stood at my door outside while we got the food out,placed him in the chair and attempted to feed him..you would tink we were hurting him extremly badly..but we arent..his therapist said we should NOT wait until he loses,that his nutrionist has said his percentile is not good and is falling,therefore we should do it now so he can catch back up..the therapist also said it is OUR choice if we want this done locally at our hospital or if we want it at the toledo hospital..i am hoping to be refered to a local GI surgeon..my uncle is also a surgical technician and would hopefully be able to atleast be in the room with vince during the procedure! this is GOING to help tremendously!

another day...

of not eating well..he ate about 5-10 bites of applesauce (way less than half) although did eat some cherrios..he has LOVES his juice ALL day long..but wouldn't take a bottle until now at bedtime..for dinner he had about 1/2 of one of his favorite baby foods 2nd stage ham/pinnaple/rice..in the jar is 120 cal. he got about 60...my dad got him to eat an orange tootsie looly this afternoon and vince wanted another tonight (but it was late for a lolly) my dad,sister,and step mom made me my favorite kind of cake for my birthday (which was wednesday) i stuck vince's hand in the cool whip which he pretty much allowed me to do! so i said look vince you can taste it too..well as soon as the cool whip hit his lips he was gagging and wanted to puke but we were able to get him calmed down and wiped clean quick enough..right then my step mom agreed that vince should get the tube..i think when others actually SEE what i see,it makes a differance..vince will hide his face and hit..which would sound like a normal toddler thing by just typing it..but when you see how he is doing it,it makes a big differance..im still not 100% ok with the g tube..but i continue to think about it and in my mind KNOW that this is what is best..sam wants to wait until he is 2..but im not sure we should wait that long..the doctors say even without getting the vitamins and salt that all his levals are perfect..hes not hardley eating,yet still in the like 46th % for weight.. i dont want him to get tiny..and let me tell you,i never in my life wanted a fat,chubby baby..but now im glad that he fits into clothes,that in this situation i HAVE time to think about things..i so badly want for vince to be ok and to eat..but i know its gonna be months or possiblly years before he eats a toddler sized meal and foods..i am still very much afraid that he wont be himself...i know this sounds bad but most people in school look at those who are "different" badly..i know i have said this before but i just want him to grow up and have that perfect life that every parent wants for their child..and maybe,just maybe if we get this tube now..and continue to work with things that are yummy..maybe he will begin progressing! i am gonna have a long talk with the speech and OT therapists on monday,and also with help me grow on tuesday..and i hoping to get him weighed on one of them 2 days!

what a day...

well vince started out not wanting to eat..althogh sucked down a 6 oz sippy of apple juice..so i went ahead and did his TOBI and tried breakfast..did better eating about 4-5 bites of applesauce..only 1 enzyme instead of 2 since he had a little poop trouble yesterday..but not bad..so he started whining at the kitchen and wanted more juice and i allowed it..he climbed the gate so i got the monkey off and sat him in his highchair,since he didnt fight me with the chair like normal i offered his sippy and cherrios while i switchd laundry..he has eaten cherrios very wll since about 11 month old..but when i turned aound to sit the clean clothes on the dryer i noticed his tray looked funny,so i check and he puked a TON mostly juice..and 1 cherrio..it scares me because this was the 1st time in 2 days that he has eaten well and then he puked..maybe he ate too fast or something im not sure! and so on my wall i posted that i am not ready for a g tube that im afraid he won't be himself once he gets it..i also hate the thought of anesthia!!!!! but as what is becoming a good friend told me maybe this is a sign from GOD that we shouldn't wait too long for the tube..he may need it sooner than we exspected..i know in my min and in my heart it will do wonders for ALL of us..we wont have the stress of almost needing to force him to eat each day,the stress on vince of having to touch food either here or at therapy..althogh when he gets this tube im thinking take a break from therapy only a short few week break,for us to get adjusted to the "new life" and for vince to heal and not worry (on us all) but i DO want to continue with therapy and not make the g tube a lifetime ordeal..unless it NEEDS to be..i want to continue to fight and help my baby boy...i want to have a meeting forour families who are interested in knowing more with us coming in to see vince and have a meeting right in his room with the dr! i really dont know what the best thing is right now..im so lost and confused..i am also a bit worried about school..for myself..my schooling is online and although i can take my laptop it does not have all the required programs..my teachers are wonderful and already understand that i have things going on at home! im hoping at therapy they have a scale so we can weigh vince..if he has lost by that point i will call the dr! if he is about the same i will try having him checked each monday at therapy..if his weight does not change and he does not begin to eat breakfast and dinner the way he was a month ago then on Feb. 1st when we go back to the CF center we will discuss the G tube more in depth and possibly set a date..please keep us in your prayers as this is a VERY hard choice to make!

i did it!

i made a decision that i think fits US best! i watched the tube feeding dvd today,and it all makes sense why he SHOULD have one..but since he LOOKS wonderful i am holding off..i am ONLY waiting until he quits gaining all together..but if and when he quits gaining an isnt eating any more than he is now then yes i feel he does need to get one because he ca not live on gummy bears and yogurt when he is 3 years old...i really dont wnt the g tube because i wnt him to be normal,look normal,and go to school,pay football and wrestle..and at some point have a gorgeous girlfriend who he falls in love with! i want nothing but te best for vince..but after watching the dvd and seeing it looks just like the piece where you blow up a beach ball it makes me feel better..it also makes me feel better seeing a litte girl flop on her belly with one..knowing that as clumsy as vince is he would be ok..it also says it can be done without anesthesia and is a really simple procedure..that it can be done overnight..so he could still eat his yogurt and gummy bears at age 3 but be getting the nutrition and fat that he needs...i want to continue with therapy and also try new foods that have more calories..he is on a strict high calorie det made by ME...lol..his dietician said if he likes pop so well to let him have it as long as it has calories,and i can use that for his meds such as vitamins and salt...thanks goodness!!!! all feedback is welcme,but please stay positive! and thank you for all the birthday wishes! :)

:(

ok so we went to the CF center today...vince gained almost a pound he is 25 something now and 32 inches! i told them what was going on with speech and that he is no longer progressing and is still only eating very few foods..right away they wanted to do the g tube..i told them i wanted to wait since he is still gaining weigt with what i am doing here at home and that his therapist has one more idea..so we are waiting..i want to hold off until he is atleast 2..but we will have to see! not the news i wanted before my bday but i knew it was coming..i really am not even ready to think of this yet and never thought it was in his future because of how good hes been doing..so we are pushing the calories and BACK to the bottle MOST of the day for pediasure! tonight he finished his peas/sweet potatoes/turkey (baby food) and he also ate !!!!!4!!!!!!! packs of fruit snacks in one sitting! those are 100 calries each..so today he did good..on the plus his lungs sounded WONDERFUL!!!!!

thinking

thinking how i wish so many kids weren't sick..when one that i read on and check updates becomes sick,it makes me sad..i want them to feel well..knowing how much i hate seeing vince sick..i just cant imagine going through so much more..today in speech i got the news vince is not progressing well enough..they have another option they want to try but he is not doing much and is back to crying through speech..i have a feeling,although i am able to keep his weight up now with small things the older you get the more food your body needs..i really think they will end with a feeding tube..like i said i dont feel he is at risk NOW since he is in fact gaining weight,but what about when he is 3 or 4??? he really cant get full and live off gummy bears and cherrios along with applesauce and yogurt...i haven't told anyone this fear but its definitly been in the back of my head,and now that i got this news it's furthur forward making me think..he HATES things near his face!!!!! as soon as we started the new med he instanlty fought everything that went near his mouth!!! the therapist also said they feel this will be a lifelong battle with food and a VERRRRY long journey to make progress...i dont want sympathy but i do want support on if any of you have gone through the same thing! i am of course worried,and not even sam knows yet as he is still working..he is at 11 hours so far making $2 more than he was..bout to be another nice check! just thought id say that!!!!

vince is....

feeling better :) i think i have done my research on FB and asking others parents their input and it seems that what i have been doing is really helping..we are almost to the 6 month point ( 2 months to go) for the longest vince has been without being hospitalized..im almost certain he would have been in back in november im gonna say he woulda been in by turkey day..but i suggested TOBI and he was cleared up..i kept pressing the fact that he was coughing and "i" knew it wasnt a cold..sure enough culture was positive now with the TOBI and cephalexin vince has almost no cough and seems to be acting more normal!!! and im glad..im starting to think i know more than his doctor..HA! im just glad to be fighting these battles and winning them over..i am normally a quiet person but i need to speak up for my sons sake! especially since i know what i mean now..and what to look for..i think all the time what if we hadn't found out about asthma before this winter..we would have been in MAJOR trouble! he's doing great, we are keeping him healthy,and he is gaing weight and getting taller..those are most important to a CF momma! of course words and milestones are important but sometimes and extra treatment is more important than trying to sort shapes for 20 minutes..i'd rather do 20 minutes of TOBI and no shapes than being in a hospital for 2 weeks doing nothing but sorting shapes..and i hope you all understand what i mean by this last part :)