Standing in my toybox =)

Standing in my toybox =)

Friday, April 29, 2011

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 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'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 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!

Tuesday, April 19, 2011

we're home for easter :)

well easter is this coming sunday! last year vince was admitted just before easter with pnemonia caused by 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 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 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 my car drove great all the way until i got off the 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 i made it 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 naturally i thought my radiator went 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 i tried driving home..i didnt even make it to the highway before the same thing 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 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 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 glad to be home this easter :)

Friday, April 1, 2011

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 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 me grow said i should not wait any longer on cleveland to call me 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" 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 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 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!!!!