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!