biggg update!

it's been a long time since i updated here...vince was doing REALLY well for a long time! lung wise he went from i believe april-october with no antibiotics reguarding his lungs or sinus (he had a few skin infections this summer)..on september 21,2012 we had our 2nd baby boy Trevor (who does not have CF)..vince was up to 34 pounds,taking all of his medications! in november he started preschool-going 4 days a week from 1-415pm! he has learned so many wonderful things that he would not pay attention to at home! he knows how to spell his name and knows most of the alphabet! he can easily count to 10 and even knows his last name! he's only 3 and has a full year left to go in preschool so i am not worried..he also knows all his colors and most of his shapes now! it all started a week before christmas he got his 1st cold of the season and had a double ear infection..this winter he has been on 99 days of antibiotics (going on 101 now)because he has CF that cold turned into a sinus infection..his symptoms will be gone maybe a week and then return...so 20 total days were not due to his CF/sinus but 10 for an ear infection and 10 for strep throat..he also tested positive this winter for influenza B...his brother and i (mom) had RSV this winter..brother was not admitted even though his o2 was only 94% and he was not eating well they told me to give him some of vince's albuterol and to watch him closely!
  **NOW** we recently saw an ENT (ear/nose/throat) dr..mainly to clip his tounge in hopes of helping his speech..they also saw how sick he'd been with sinus issues and chose to do a cat scan that day in the office (talk about a silent panic attack,while trying to remain calm in front of a 3 year old) but he did wonderful though it..they showed and explained the CT to me and his left side (near his nose/under his eye) is great about a quarter size opening and moslty air with little mucous! his right side was the size of a golf ball or maybe bigger and completly filled with mucous (it looked like a water balloon ready to explode)..they said the head sinus cavities dont develope until around age 5 which is great because it's not causing vince severe headaches at this point! they could see his adoids are almost completly blocking his airway so while having the tounge clipped he will have his adnoids out..he will also have his sinus cleaned out and the bone shaved to make the nose opening bigger and allow infections to properly drain..(he will have no external openings/scars) his tonsils are medium size and he may grow into them so the dr is going to try to leave them alone since he's never had an issue with them before,and it would make for a much longer recovery..vince will be intubated during surgery meaning he will having a breathing tube in his airway to protect him and to also ensure that blood doesnt drain into his lungs during these procedures...while having all of this done the CF team has chose to do a bronchscopy which is where they go down into the lungs and clean them out and take a bacterial culture..the last one he had done was the day before he was 1 month old...through all of this vince will be admitted atleast overnight-a few nights for observation since we live so far from there! they have approved trevor to stay with us and we all can sleep in vince's room as he has said he wants us to! i am definitly nervous but we have informed vincent that this will make him feel much better!

september 17,2009

so 2 days ago on the 17th was 3 years since sam and i were given the terrible news about our baby! that day we thought we'd never have more kids,that vince would never be normal...he'd already had a chest xray that day,a sweat test,a throat culture,and was starting many medications and therapies! we were told he'd be fine that he'd be normal with extra precautions taken at home..and less than a week later he was admitted for his 1st round of IV antibiotics from pneumonia! things were very hard those 1st few days and is still hard to think about..it caused sam and i to argue some (mainly i'd yell cause i was stressed)...today sam and i are stronger than ever and have a beautiful healthy 3 year old boy! we at the time thought CF was the end of our world...but as time grew on we learned that CF was less of our worry when it came to his eating and sensory issues,which are more stressful now! CF is very manageable! and for that we are thanful..sure it has it's rough times,but when you go out it's not know,it doesn't have to be told that there's a "problem"..but when you go out to eat and a toddler doesn't get food,the looks you get are horrible...if only the people watching really knew how much it hurts that he doesn't eat..and that forcing will just make things worse! vince is getting much better with food in all settings and eats a few things at home now...CF has changed our lives and how we raised our son..but in a way it changed it for the better! we learned we are not alone,and we learned how things we were once doing or going around even hurt our own lungs! we didn't and do not smoke,but now if we are around it we go home and wake him feeling sick! i'm glad CF has taught us how to be a little healthier for our baby love! and we plan to raise vince's little brother Trevor just the same whether he has CF or not!!!!

upcoming plans :)

as everyone knows i am getting closer to my due date..and having a young child with special needs and no babysitter has had me thinking on what to do with him while i'm in the hospital..sam and i have come up with the perfect solution for US! during labor and delivery we will invite someone to watch vince..if he is asleep then this person will sit in the backround very close to vince (i'm taking his travel bed) incase he were to wake up..otherwise if he is awake we will try having him in the room-the same person will still hold him in a chair or such...if he becomes too "noisy" or not listening they will go to the waiting room...there will be 1 other person in the room with a camera for those 1st moments of the new baby's life! we will allow those 2 people to stay for a while and after that we will give the new baby his 1st bath and have our 1st family of 4 time! vince will be staying at the hospital from about dinner until the next morning..he will have a few cars and i'm getting him a portable dvd player and cat in the hat dvd's to help entertain! sam will take him home for a few hours in the day for a break and "rough play"...i will only be in the hospital 1-2 days after delivery..BUT with vince rarely having a babysitter i feel he'd be more stressed staying without us..along with that i want him as involved as possible! it's working well and he is not yet jealous,although i know that can change but i think this is the best for all of us!
      he is still doing alright..some more asthma trouble and tummy issues but they are getting better! his weight is still the same at 30 pounds but i'm glad he's not losing..his ribs are much more noticable though..he has gone 9 months now with no gain!

this will become private!

I have decided now that vince is getting older alon with the fact that some of his "family" doesn't seem to care much about him or his health i will be making this blog private! please be sure to leave an email address so i can add you to the "invited group"!!! Vince's lungs are doing amazing as far as bacteria goes! he is currently only growing staph which he has had atleast since his very 1st throat culture when he was 3 weeks and 2 days old..so this is great! the heat has caused vince a large amount of trouble with his asthma,i'd say worse than the cold this summer! he is on ventolin and advair inhalers and is not on singulair..i add this crushed to his juice and he does not even notice! it is helping a TON! he is now taking all of his oral medications! his prevacid is also put into his juice..he takes childrens gummy bear vitamins at a 4 year old dose! he also takes gummy fiber chews! i like these better than miralax for him! it feels like less of a medication! and both of his dr's approved it! he even takes his creon 12,000 (enzyme) before his pediasure! BUT it's still not helping him gain weight! and he's getting 1-2 pediasure 1.5 in daily! thats 360 calories per can! he is eating new flavors of cherrios..he bit a bite out of an apple this week which he spit out,but the fact that his teeth went into it is amazing! he chewed a small piece of pretzle at therapy this week and gagged multiple times but was able to work through it! there are so many things that he is doing now! he is fully potty trained (within a week) and only at the age of 2! he still wears a diaper at bed,and i'm thinking about working on that around age 3 or when baby comes! (since i will be up in the night anyway i can get him up as well) he i just doing amazing! he has lost a few more ounces putting him right at 30.0lbs! any more weight lost and he will be under 30..as i start buying things for the new baby and reading more weight limits alot of them go up to 25 and 30lbs! such as infant swings! it's just crazy! his ped said his weight is not good but it's not the worst,and the fact that he is filled with muscle is keeping him looking good and not scrawny! he is talking more now too! he will be starting preschool this fall which i'm both glad and sad...i can't believe he's growing up! in exactly 1 month it will be the 2 year anniversary of his 3rd/last hospital admission date!

vitamin k

ok..as most of you know vince only eats these foods (and it's on occasion-not an every day basis) cherrios/vanilla yoplait yogurt/applesauce/fruit snacks/gummy bears...he does not take ANY of his oral medications including his enzymes/antacid/vitamins/salt/or antibiotics (although we really push the antibiotics as much as any human really can!) because vince needs enzymes to absorb both fat and nutrients he does not gain weight or get the nutrition he should..including vitamins to his body and brain...his vitamin D came back low in december's blood work and he was started on 1ml of that daily...at 1st he'd do it..now it's a struggle! he also has not gained weight in the past 6 months..but has been able to maintain his weight...dr's are very confused how a CFer can not eat/take enzymes and not be losing drastic amounts of weight! lately a new problem has come up...i noticed unusual bruising.. (upper thighs/butt/back) and he had no complained of hurting himself in any way..so i thought i'd call the peds and do that along with a weight check..peds believes vince's vitamin k is low which is a fat soluble vitamin meaning vince needs enzymes to absorb this! yesterday he was standing near me while i got his pediasure and i noticed his arm looked funny..well it's bruised so bad it looked like he had been abused...red/purple/blue...he has a couple little ones up near his eye (he told me fell off the bike-but he shouldnt have bruised) and he has another largish one on his ankle...the way these are popping up i'm glad i called the peds when i did..the only thing vitamin k is found in that i can get into vince is blueberry juice..and it was only in this organic stuff that was like $5.99 on sale! and the bottle is rather small...peds is agreeing 100% on a gtube and even called akron and recomended that to them as well..(we're going to akron for a 2nd opinion on april 17th) i talked to our pharmacy (in person) and they feel vince needs the feeding tube NOW..that even april 17th is too long to wait!!! well this is the update for now..we are doing all we really can for vince and pushing this gtube as much as we can...

CF clinic update

ok...so i posted yesterday that things did not go well...most of you know that i went in wanting a feeding tube..vince has not eaten since he was 9 months old..he eats cherrios/lucky charms minus the marshmellows/crunchy nuts/fruit snacks/vanilla yoplait....he takes pediasure 1.5 but refuses all oral medications...he will spit and sometimes gag on enzymes..all other oral meds he gags and pukes up and sometimes begins dry-heaving when he doesnt have much in his stomach..his oral meds are these:::
zenpep 5,000-2-3 per meal
zantac 1.5ml 3x daily
salt 1/4tsp daily
CF vitmain 2ml daily
vitamin 1ml daily..
plus abx and steroids when needed
because he does not take his enzymes he does not abosrb most of the fat or nutrients in the foods he takes in..so therefore both his body and brain will grow at a slower rate..here is what happened yesterday!
yesterday..vince weighed in at 30 pounds he is in the 50% for weight and about 40% for height..which but his BMI right around 50% so overall he looks ok..but i dont like that i can see his ribs...his pulse ox showed only 95% which i believe is vince's lowest yet! but i was told they dont worry unless its below 93..and also i heard would need oxegyn at 90..so i didnt enjoy seeing a 95..i told the CF dr that both the ped and i along with sam and our families agreed on a feeding tube..he told me that it would be malpractice to perform this surgery on a child who is in the 50%...he says i am letting vince control me and that i need to be him mom and make him do these things..i told him he didnt understand and began to "yell" and say he did understand because he had 3 toddlers! ok well i bet none of them were in this situation...he said he made his son go a week without dinner until he ate green food..i have tried refusing vince his pediasure and after 2 days he quits asking because he knows he can not have it...i told him that vince does not eat and he said well he must be because he gained weight..(he's been at the peds all winter just about every week and has now lost weight..) so he doesnt even believe that vince doesnt eat..he says its all behavioral and that he needs to see a physcologist..even though he is currently being watched for sensory processing disorder! sooo....after all that he did not look at the blisters on vinces butt/mention the 95% o2/or even say when he wanted to see vince again! so i don't know where to go from here! he is the head dr at the clinic so there is no one else..pesd already agreed on a feed tube so i'm hoping he will refer us to a surgeon! and then i may possibly get a 2nd opinion from toledo..what do all of you think?

gube?

ok so i KNOW vince needs a gtube..he is 2 1/2 years old..he was born at 8 pounds 6 oz...he gained fine once on enzymes and always has since (for the most part) at 9 months old he was admitted with pnemonia (his worst one) and at that time ate french fries/ice cream/jelly...once home he quit eating EVERYTHING! baby food went from 2 jars down to 1/2 and he would gag on anything else i offered even his cereal...he eventually started eating cherrios and fruit snacks and vanilla yogurt...he was put on pediasure at 10 months for nutrtional value..as he got older he refused and gagged on more and more...at 18 months and we switched clinics and he was put on a higher calorie formula..but is still refusing the enzymes...he never had to many greasy problems...so now that high cal formula is no longer working..even when increased..and when increased it is blisterin his butt...i KNOW he needs enzymes/vitamins/acid reducer/salt/allergy meds....but that is really not easy in our situation..no matter what we do he usually pukes from forcing those things...our entire famil in now in agreement that vince should definitly get the gtube...the dr's just say they dont want to perform the surgery for "no reason" he has not eaten in almot 2 years and has gotten worse...what makes them think he is gonna eat out of the blue? so my question is how do i cnvince the dr's that its time...he needs this tube? he is very aggressive and i've heard it can mean he is hungry...he also whines alot he will say he wants more milk/yogurt ect but then begins gagging...so advice?

biggg update

ok so here it is...vince has had a cough most of the winter,especially since december! he has also been stuck at 30 pounds for quite some time...he is in a major refusal of his enzymes (pills to digest food/absorb fat)..so with that being said yes it will be hard for him to gain weight..but he doesn't have a terrible innsufficiency..but it is there..so we have increased his pediasure...which is return is sending out more grease and now he has a blistered looking rash on his little bottom! he hates being changed right now and will wait to tell us he has pottied so he doesn't "have" to be changed...the CF center was notified by the peds (who is awesome) about the weight issue and they are not pleased but do not feel he is in danger yet..and will not yet do a feeding tube..ugh really? just put the thing in so he can get his meds and used to it before he starts school this fall...ok now onto the cough..like i said he's had this cough most of the winter with a few day/to a week breaks..we have tried a few antibiotics-both oral and inhaled..neither have which helped long term..we even increased his inhaled steroid and that did not help but more than about a week..so now tomorrow we will start a 5 day course of oral steroids and if this does not work there is a POSSIBLE admission..that i am planning to push for!! he has not been admitted since august of 2010!!!! and i feel he has been on plenty on antibiotics in the past year and a half..and now they are not helping more than a few days/weeks...so let's get him in and get him "fixed" for a while again! i was told cleveland's policy is to admit him and get the picc line in and then after about 3 days on abx if he is tolerating everything we would come home with a picc and meds...so that's what's going on this time around...i also found out i carry the R553X mutation...

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