CF showing its ugly side

hello everyone...ok so vince had started coughing pretty bad and so we made an appointment with the CF center for tuesday the 13th..however the monday a week before i took him to the peds and he at that time had just a cold and 2 ear infections..he was put on zithromax for 5 days..but after 2 days he completly refused no matter what i did to help him...by friday he was worse and i chose not to wait the weekend out..so we went back to peds...and he wanted an xray right away..he didnt even want to wait until saturday morning..well luckily it showed no pnemonia meaning no admission! the ped said it could either be RSV or CF related...well RSV looks to be out now..which in a way is good..so its more than likely CF related (we will know monday for sure) so we went to the CF center this past tuesday and dr chmiel was impressed with how well the peds dr did on friday and how he handled things...vince had also been urinating alot more than normal so his dr of course says its not normal..lovely..NOT!...so we did his throat culture..went to their lab and did blood work (he screamed like crazy..the lab tech man gave him 3 stickers and a lolly) then we came home with a urine back to get a sample checking his kidneys and for infection..well i got 1 sample-but was left out too long..so they gave me a new bag..and it was a NEWBORN...needless to say..i was quite little and didnt fit..but i did my best to cover just so he could pee in the bag and then it fell off at some point..so now we were sent home with the correct size and let me just say those bags are pure cruel to a little boy!!!!!!!!
vince's med list also changed..
he gets ventolin-4 puffs 2x daily
albuterol-if run out of ventolin
pulmicort 1mg (2 .5mg viles) 2x daily-when sick
pulmozyme-1x daily
hyper-sal--2x daily
zenpep-2-3 per meal w/fat
zantac 1.5ml 3x daily
miralax 1/2 cap up to 4x daily

november '11 update

ok i know everyone has been wanting me to update about what happened yesterday!!
for those still learning about CF vince can become constipated easily because of the amount of mucous throughout his body..he is on miralax as needed for this..in fact he just had some maybe 4 days ago and things moved the way they should (a little too well)...well he got backed up a bit yesterday and when i changed him i found enough blood to cause worry..took the CF center almost 2 hours to return my call..luckily peds was on top of it and had us an appointment and a call from the ped before the CF center contacted us...anyway by time we got to the dr it showed negative for blood,HOWEVER..the dr said its obvious its there (especially since he eats nothing red!) the dr thinks vince strained to go to the bathroom and tore something/broke blood vessles on the inside...we are gonna d miralax every day/other day now instead of as needed..we are to go back right away if there are any blood clots..
on a good note,his lungs and ears looked great and his belly is still soft..but he has not gained much weight since his birthday back in august,but is still near that 50% goal mark...

surgeon update

ok so,we went to the peds surgeon today to get a 2nd opinion on the 2 cysts on the back of his head..the surgeon says these are lymph nodes that are enlarged trying to fight off an infection he has..which he is coughing and and sometimes trying to puke from it...the surgeon wants to leave them go..he wants me to check them atleast once a week..if they grow at all in size then the surgeon will drain them,possibly test them and if needed remove them..since we were in cleveland and vince still has that cough i walked up to the CF center without an appointment and was able to get a throat culture done..those results will be in monday...

bad news...

ok so,vince started coughing shortly after CF clinic..we were told his staph was 2+ rather than being his normal 1..he also had ecoli and an unknown bacteria (that we were not told about) well with the cough he was started on Cipro for the staph infection..he has also been pretty constipated getting miralax 1-3x daily wasnt doing anything (which is VERY odd) along with there being a neon yellow fluid..it was not shiny meaning it was not greasy..so we called the dr back and they wanted him tested for C-Diff and constipation and then we will be treating the unknown bacteria...so at the peds we got BIG news when i found a lump on the back of his while finger combing his hair..i mentioned it to the dr who then found another lump..both are pea sized,soft and move..so these indicate cysts rather than lymph nodes..however i am scared and am wonering if i should demand more testing on these such as doing an MRI or a CT scan...im afraid of these more serious than "just a cyst"...peds think for sure vince is constipated because its not likely for him to of gained a pound in less than a month..we did 1/2 an enema this morning and had "ok" results..we are to do the rest later today..and increase miralax even more...we should have the C-Diff results tomorrow...please keep vince in your thoughts and prayers that thse cysts disapear..

potty training

ok,as you all know vince is now 2 years old..i have mentioned before that i want him in preschool both at age 3 and 4..i want him to have the social skills and i want to see how his health is before school "matters" now i know of atleast 1 school that i can get him into and he would not need to be potty trained..but this is a private school which could get costly! if i put him in the public preschool he qualifies based off medical needs for free schooling..but would need trained..he knows how to take his "diapy" off,take his pants off,sign potty,wants changed when pees or poops..soo...how do i go about it..i know 1st thin in the AM..but then what..every 1/2 hour? after he eats? do i give him a book to try and occupy him so the time goes faster? what about when we are not home? he is starting therapy twice a week 30 minutes from home and is afraid of the "big potty"...i have heard plenty of times that boys take longer than girls...but i feel i should atleast be TRYING! please give me all the info you have :)

small update***

ok,so after vince not eating the past few days and puking or atleast gagging when we give his enzymes,so i called the dietician and we talked alot! she says to take him to the peds for a possible ear infection or sore throat...she also still recomends behavior therapy (but finally admitted,the therapist would be counseling us,not vince) we have tried everything and i am not gonna go to a counselor on how to feed/raise my baby who has been nearly perfect his entire life! the dietician is happy that i am putting vince in a toddler group food clinic where they address both sensory,behavioral,health and medical needs all involved in each child...its a 30 minute-1 way drive..so 60 minutes 3x a weeek..but help me grow has agreed to pay the gas money! vince ate sweet potatoes once really well...and then dinner was his once favorite yogurt..he fought at 1st,then i gave him his prize bowl (with his rewards and treats) and he took 2 bites with any fight...then gagged once and puked TONS!!!!!!!!! dietician also mentioned a blockage which i didnt believe until tonight when he had sweet potatoes again and began gagging towards the end...hes still pooping a good amount (although hadnt gone all day saturday) so depending on how he does food and poop wise tomorrow will determine either a ped visit or an ER visit...
and another thing..his toes used to crack on the bottoms in the winter with footie pjs..well we got his toes healed up by leaving his feet bare as much as possible..then we started putting footie pjs on again with the AC on (as he loves it) and his toes are bad! his right big toe looks like it was sliced open with a knife on the bottom! its not actually bleeding,but you can see the red open sore and its the whole crease where the toe bends under...we showered him and then put some A and D on it with a band aid (and tape to make it harder for him to get off) hoping it starts helping..but i think i want his toes tested for bacteria!

eye opener

so yesterday i learned of a little girl with Cystic Fibrosis (who i have talked to her mom here and there) but i learned she had yet again been admitted (she was just in like a few weeks ago) but this time i was told she was coughing up blood,had one of worst CF bacterias in her lumgs (MRSA) and that her O2 was dropping and she was on oxegyn at night...i was in complete shock!!! how could this little girl who is vince's age be so sick!!!

no family of sam or i's can honestly say they understand what would happen from SMOKING,or the wrong bacteria getting in his lungs...how would each of you feel if the dr's did a bronchoscopy on vince (camera in the lungs) and found grey mucous...because you THOUGHT you were far enough away!!! but yet no one thinks about the fact that his mucous in his throat and lungs is THICK and STICKY! i think every day how many people that i know actually think about vince and the fact that any little cold could become fatal...

we have tried so hard to let vince be 100% normal lately...we try not to freak out when someone doesn't sanitize anymore...we let him be a boy and play in dirt and rain water...and he just loves it! however i am terrified to see his next throat culture! it has been 4 months since his last culture..which showed staph and psuedamonous..well i believe the PA is gone because he always has a cough with that! and the staph is in every culture! before his 1st blockage i was able to get him to start eating a few new flavors of baby food..however now he is back to sweet potaotes :( i had to buy 2 cases today and im hoping it lasts through the weekend..

i honestly have no clue what i would do if i was in this other mama's spot..its terrifying to see what just 1 bug can do to our babies :/ they dont deserve this...and they surely dont deserve RUDE people who think its ok to smoke right behind him! its not his fault he has CF and if you want to kill YOUR lungs than you can go do it where vince is no where to be found! he shouldnt have to move,and i shouldnt have to move if i'm the one holding him! what if it were your kid?!?!?!

1st blockage

well we went camping over the july 4th weekend..it was very hot but vince tolerated it very well..we had no concerns..until we got home monday night and he had thrown up (a ton) and so we chose not to tell the dr since it only happened once and he had no sign of infection (cough,fever,ect.) well tuesday comes and he puked again right after dinner..again we weren't gonna tell the dr for one more day..until he threw up for no reason about 30 minutes later..both times were alot and that 2nd time he was dry heaving and holding his throat as if he were choking..it was scary! so right away i emailed the dr (much faster response than calling) and the dr thought since vince had no other symptoms other than very blood shot eyes that he probably had a small sun poisoning..so i accepted that he'd be fine in a day or 2..i knew he was in the sun alot..well then on wednesday he didnt poop and also puked but not as much..then thursday no poop and puked..so i emailed the dr before the weekend came..and even though he wasnt pooping and he was puking he had no hard stomach like it should be during constipation..so the dr said to take him to the CF e.r or locally..we chose locally and i said his symptoms and the dr even knew what CF was!!!!! i felt a bit better at that point..and so he orders an xray and says that vince had a blockage right at the end that was there to come out but couldnt..and that his intestines and stomach was filled with soft poop..so he said he would try an enema and if that didnt work he was gonna really have to torture vince..and on that im not going in to detail..its hard just thinking about! so anyway the enema helped but that was scary as well..vince got a good amount out the 1st time but then while trying to go more (in a 2nd diaper) he zoned out and had poor balance and was gagging...it was terrible..sam and i were both scared!!! so the dr let us go home since vince got 1 good diaper and 1 small diaper's worth out in like 15 minutes..he said continue miralax and the rest should work its way out..well its 3pm here and vince has yet to go and is 100% cranky and lazy..i bought he pediatric enema to try tomorrow..but otherwise we will be heading back to the ER atleast for an updated xray..this is his 1st blockage! and when we got home last night (well at the resturaunt) he sucked down a pop...i allowed it as a treat..it was mine so it was diet so no sugar...but he enjoyed that..then we got home and he ate a good amount and took 4oz of boost..and wanted more but began gagging...

too much in one day!

ok so most of you know vince has many texture issues and oral aversions..after talking to a friend i chose to have him evaluated for Sensory Processing Disorder..althoug vince is too young to be 100% diagnosed with the disorder none of the 4 parts came back as a normal score..he has 2 probable (lkely) and 2 definite..the definite was the oral issues and the other definite is how things have to be his way,such as where when he falls in the grass and cries if he cant get up because he doesnt want to touch the grass! the probable was his sensitivity to noise and his behavior..so all this meaness towards (mainly me) isnt exactly his fault..which in a way i feel relieved to know my child isnt just a brat..there is something causing his problems..it's why he runs and whines when some noise normal to us scares him..its why he cant and wont eat food (although the new thrapist has already made improvements with him) for those of you that dont know S.P.D. is on the Austism scale..now this doent mean vince has full blown autism..he acts for the most part like a normal little boy,he shows love,doesnt get carried away when his routine is unexpectdly changed..this jus explains so much..for all my family or friends who have contact with vince this doesnt change him!! hes still my 100% perfect BEAUTIFUL and HEALTHY little man! the only thing is we will learn through Occupational therapy how to discipline him for hurting us (pulling hair,biting) for now we are to just redirect his attention..and it helps but not all the time..i will also not try making him try any food..its all up to him..he needs to have trust in us and the therapist..
the peds wasnt too bad..although i honestly do not think he has gained weight..on that scale naked last time he was 27.6 today he was only 28 with jeans,shirt,socks,and im sure a wet diaper...they do believe he has allergies..he is to get a small dose of benedryl over the weekend and we are to call and make an appointment to see an allergist!

we're home for easter :)

well easter is this coming sunday! last year vince was admitted just before easter with pnemonia caused by staph..it was over stressful having one of his 1st holidays in the hospital..we are grateful to toledo childrens and the RMH for giving vince easter gifts..including sundays for mommy and daddy..this time last year vince ate ice cream,jelly's out of sam's donuhts..and he was even trying french fries..this year he is not eating ANY of those...today was the 1st day he ate anything in about 4 days..he ate stage 2 sweet potatoes/corn..although i hate that he doesnt eat foods..i am thankful his formula is allowing him to gain/maintain his weight for right now..as most of you know my car broke down last week..the oil pressure light came on ONCE 2 days before i went to cleveland..we checked all the fluids and everything was fine..so my car drove great all the way until i got off the highway..as soon as i stopped at the stop sign on the exit ramp my oil light turned on..then it continued to turn on every time i stopped..i noticed the temp gage was a BIT warmer than it had been when i was on the highway..the hospital/CF center is only about a 10 minute drive..so i made it there..as i was finding a parking space which of course the day my car is about to explode there are no open spaces! so i started hearing this crazy loud girggle under the hood and my car was as hot as it would go..i pulled into a valet spot hoping to not be towed away knowing i couldnt drive any further! i immediatley saw tons of steam and when i opened my car door i noticed radiator fluid everywhere..so naturally i thought my radiator went out..my car was still making terrible noises and smoking so as i was panickly shaking i struggled to unbuckle vince and get him out hoping for the best that we weren't going to blow up (i'm a girl with my son alone..i have no clue what a car is capable of) i told the parking garage people what happened and they had no problem with my car being there..after the appointment they even helped check my fluids..well everything was fine..so i tried driving home..i didnt even make it to the highway before the same thing happened..so we sat at a BP in a bad area and waited for 3 hours for a tow truck...atleast we made it home safe! all that was wrong is the motor went out in the cooling fan...my oil light still comes on if i've drove for a while and then stop..but it doesnt get warm...the chrystler dealer said it will need fixed but is ok as long as the light isnt on while driving..sooo they think the sending unit is just reading that i dont have oil even though i do...so that will be happening in about a week and a half...
vince had his worst throat culture yet..with staph (his normal) psedamonous (has had,but has been gone 4-5 months) and ecoli (only had once at 3 weeks) to all you non cf experts...NONE of these are contagious...we ALL breathe these bacterias in DAILY however we are able to breathe them out..instead they stick to sweet vinces little lungs and cause him infections...im glad to be home this easter :)

major update!!!!!

ok so in the begining of march vince's throat culture results came back showing staph and flavobacterium..he was orally treated since he had a cough..so he was put on cephalexin (keflex) this is the same med that caused thrush back in december! i increased his probiotics and gave him as much yogurt as he would take to keep good bacteria in his stomach and prevent diareah and C-Diff...within a few days he had diareah..then he quit eating..then he started peeing orange..his diareah got worse and became slimy..help me grow said i should not wait any longer on cleveland to call me back..to head to urgent care right away..he had a fever around 100.1 for a few days..but the fever was only there after he would poop! so i took him to urgent care and he was around 26 pounds..27 pounds on our scale at home! they gave me stool sample colectors and sent us home..i was able to get samples that night and took them the next morning..they said it'd be 72 hours before they had any results..less than 24 hours later i get a call from urgent care saying vince had C-Diff both "A and B" toxins..so i was liked freaked out and everything..cleveland wasn't going to treat him unless he went to their ER..she said go back to urgent care..so off we went..he was down to 25lbs 14 oz. only 2 days later! well urgent care couldnt treat him..the on call doc at cleveland said they had no open CF rooms! so he called in a script for oral flagyl 4x daily for 2 weeks..this caused vince to throw up! he has been on flagyl for 6 days with no improvement! today his poop is only worse,so dark of a green it looks black!!!! i am more scared of this infection than when he normally has pnemonia! i never thought i would need gloves to change my own childs diaper! he is currently not eating a thing..taking only 2-3 boost bottles..and some juice..with 1-2 ounces of pedialyte..today the doctor decided to change his med to vancomycin!!! i really hope this helps!!! easter is coming up and it will be his 1st one AT HOME..please pray for my baby boy!!! today on my scale he was down to 26..he normally reads 27.4 on ours...this is not good news!!! plus he is getting his synagis shot tonight! i hate that he is being tortured!!!!

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 :)

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 :)