frusterated with....

the fact that our CF clinic completly SUCKS! I called vince's therapist this morning because yesterday he refused breakfast and we fought him to eat dinner and was only able to get less than half of a yogurt in him..then last night when we gave the oral med he puked EVERYWHERE!!!! luckily i took my shirt off,because it seriously went all over the place and it was my favorite shirt! vince is having more than one side effect from this new med..im not sure if it said rash but his face and neck have some hives,he must have an upset stomach since he is refusing MOST food,he has MAJOR stinky diahrea..and just a few days ago it was extremly hard! each time we give the med he either spits it out and gags, or pukes it all back out..he will take it in about 2 ounces of pop but that is the ONLY way! the nurse suggested i do tiny bits in the back of his throat even if it takes 10 minutes..do you think it worked? of course not he spit ALL of it EACH time!! so i measured the dose again and put it in pop and he barely took it this time! the therapist says to offer meals and if then will not eat or does eat much to give a bottle..the nurse says oh give him yogurt for probiotics..what did she not understand about HE WON'T EAT? so i got drinkable yogurt,ya think he drinks it?? NOPE! i looked for the culturelle probiotic at walmart and they were out! im just so frusterated..i rely on my CF momma friends to get me through..i'm not sure how many you actually care but i NEED people to vent to and this really is my only way!!!!!

seriously?

ok so i did my job by reading more on the cephalexin for vince's sake..on ithink it ws drugs.com it says not to use if you are allergic to penicillin..we have told vince's doctor there is a chance he is before and that we would prefer him not be given this as he has enough issues going on..so how much arethese two meds related? he seems to be fine and he has had 3 doses so far..his poo is becoming aqishy and he does not want to eat real food only gummy bears and a few cherrios..so feeding him yogurt is not going to work..so i am gonna have to try yogurt juice..also how do you tell the differance between diareah and C-Diff? especially when the child can not tell you how they feel? also does anyone know what the liquid probiotics smell or taste like? vince is so picky and AFRAID of anything that goes near his mouth!

CEPHALEXIN

ok so vince was started on cephalexin and is being started on his TOBI a day early..he grew rare psedamonous..meaning not much..and staph..few..which is more than his normal growth..he really does not like the new med its a thick orange smelly like cat pee med! the tobi alone is a 20 min treatment! and the new cephalexin can cause C-Diff..from what i have heard it's a nasty intestine infection that hard to kick out! and comes back very easily!!! it can also cause nausea..great vince already doesn't enjoy eating! yogurt diet for him to give him the good bacteria his tummy needs back..this is just a VERY quick short update..please keep him and me in your thoughts..this many meds is getting confusing not too much to handle just alot to remember and to take on..by the way he looks so adorable in the ducky quilt my sister had made for him with his name tonight! thanks bryttny! feel better my sweet baby love!

CHRISTMAS!!!!!!

ok so christmas is almost here..we have both good and bad news...good is we are home..vince has 2 new teeth which makes 8 in his mouth..when we did an "emergency" visit to the CF center monday xrays and cultures were taken..xray was GREAT meaning no pnemonia! this is one of his longest periods of no infection! wahoo! however the culture was "suposed" to be in today and its STILL growing,which is no good..they said its his normal bacteria so nothing new yet..but since his cough is lingering around he may be treated..they also asked how SOON he will start TOBI-which is wednesday the 29th. so im assuming he is growing a good size amount of psedamonous! he is doing pretty well..got hurt today which isnt anything unusual but i did get more worried this time! he is doing great tonight and acting himself..CRAZY!!!!!!! he also helped cut out the cookies and even frost them..well he played in the frosting :) and the flour :) he has now eaten fairly well 2 days in a row..yesterday for the 1st time i can remember since he was about 10 months old..he ate 2 WHOLE meals..he had strawberry yogurt for breakfast and even ate all the berries..normally he would spit these out and even gag sometimes..then he has sweet potatoes for dinner!!! so everyone have a good night and merry christmas! will update after monday when we get HOPEFULLY a final culture result!

good/bad news

ok so as of right now it is still a head cold..his lungs look AND sound perfecto! but because of the cough we are continuing with TOBI starting wednesday following christmas as planned. another throat culture was taken to be sure nothing new is growing. if he continues coughing after this round of TOBI and the holidays are through they are thinking of admitting him just to clear things out. a small positive he gained almost 2 ounces in 2 weeks. he is 24 pounds 8.8 ounces. and still 31 inches. but we were just there less than 2 weeks ago. the main pulmonologist says there is no reason to have him on the bottle the way he looks..he said vinces weight is wonderful. also on the way to the clinic my marketing teacher called. i have done SO much work for the 1st quarter and extra credit that i have an "A" and do not need to do anymore extra work since i started late in the semester. i only have one other class to get caught up on and finish before january and then my other classes start and i can not wait! i hope all my teachers are as great as this guy!

Torn between...

the fact that vince was starting to finally eat more food along with new food when i decreased his bottle intake. but i dietician was not happy and wants him on a bottle until he's 2...i did NOT like this idea..and now im really hating it..now that he knows his bottles are back he wont hardley eat! i try and try and it doesnt work..its his favorite foods at his normal times..and still no luck..its just cause hes knows the bottle is back...he will not drink pediasure any other way than in the bottle..i have started adding oil and cereal to his food in hopes to get his weight back on..he is down 8 ounces...i mean i know the pediasure is helping him with calories,but no bottle is helping his feeding issue!!!! please give your input on this topic through facebook!! thank you!

good/bad

ok so things are going pretty well...now that vince's meds have been increased im seeing some relief..we will be picking up the inhaler and aerochamber today..well when vince wakes from his nap!

**today i am feeling both up and down...down because as most know the death of my mom when i was just 13..i am trying to be happy and such but this week is gonna be a rough one...i am VERY excited about the fact that i was accepted into school and i should receive a call tomorrow to set up delivery of my computer and printer..i will also receive an account with office depot to order printer paper,ink,ect.

**tomorrow IF school is not canceled my sister,Bryttny,and I will be delivering balloons and cupcakes to our baby sister..only she's not so baby anymore! she will be 7 tomorrow! the timehas gone by sooo fast! i still remember when she was an itty bitty baby,her 1st christmas,easter,and 4th of july...she's growing into a very pretty little girl...and does wonders with little vince...i think that is all for today...so i will be cleaning and rearranging furniture to make room for everything!

update-december

ok so we went to vince's appt..he isnt doing TOO bad..he is not gaining weight in fact he lost a few ounces...he is at 24 pounds 7 ounces and 31 and 1/2 inches tall...his eating is getting better..today he ate about 1/2 a strawberry PUDDING!!!! this was a 1st he has ALWAYS gagged on it..so proud :) he did in fact get his handicap sticker which is good until april 2011..if his allergies bother his asthma in the spring he will get another..he was given a ventalin inhaler..its from what i understand a stronger form of albuterol put into an inhaler..

***today i called my step mom (my dad had told me she wanted to talk to me) so i called and she was more or less worried about me..this year has been hard..seeing and reading the hardships of CF and vince's condition both worsening and getting better both in different areas..she told me things i already knew but it felt GREAT to hear come from someones else mouth other than my own..that i have a BEAUTIFUL little boy...and a GREAAAT man :) which yes i knew,but like i said i have had a rough year and the holidays are never easy..she told me she wished i could be happy again how i was before all of this..i wish the same and i am gonna try to keep my head up and stay positive!!!tonight they invited me to dinner..im just hoping sam gets back from fishing in time to do so...well thats all for now!!!

for yleana

yleana,
i just wanted to say sorry that you couldn't read my blog the other day...i will try to make it so you can see from now on!!!! i hope you have a good birthday this year! and i hope you will come see me soon! vince has been a bit sicker and can not go out in the cold much right now! so i love you lots and hope to see you sometime soon!!!!!!!!!!! here's a kiss "muah"

this posting is not for kids :)

ok,so i was told my last posting made a few people "mad"...i really didnt mean anything negative about it..and i had no idea a 6 year old (my sister) was reading this...i didnt even know my aunt knew this profile existed!
***LISA*** like i said i didnt know yleana was reading this..i will try to keep it happy and fun..but please remember this is to update on vince and things may not always be pleasent,such as his asthma attack the other day..if i think its too much i will put a warning type lable on it :) i hope you understand..please tell ylea i love her!

***TARA,DENISE,BRYTTNY*** honestly im not sure why tara and denise you were upset by it,but i am sorry..i have liked coming over recently and tara i like seeing our boys play together..bryttny..you also said this year has been hard for you..and i am VERY thankful for you coming with us to toledo and everything!

***anyone else*** i didnt know that this would offend everyone saying about my mom dying the same day my sister was born...it was NOT yleana's fault..my mom was VERY sick..pnemonia,strep pnemonia,influenza a,meningitis,brain hemorage,and an anurysm...my sister was saved,and for that i am thankful..i love her so much...yes i miss my mom...this time of year is very hard! but i DO NOT blame her at all! i only meant in my previous post that yes it did in fact happen the same day,but nothing about the fault..so i hope everyone understands..for now that is all!!!!!!!!!!!

crap!

well..yesterday (monday) vince had an asthma attack just from my back door to the car,the cold caused him trouble..then today he had a major one in the car as i was pulling up to a store..his face turned white,his eyes,and mouth were red..and he had passed out or instanley fallen asleep from the coughing/choking/gasping..because he had just been awake..i always check on him through my mirror..and now im up and cant get this outta my head!!! here is what his breathing meds normally are,and then what they will be...

***NORAML***

9-10AM..albuterol

5pm..pulmicort

9pm...albuterol/pulmozyme(not mixed)

***NOW***

9AM..albuterol/pulmicort

1pm..albuterol

5pm..albuterol/pumozyme

9pm..albuterol/pumicort

and this is just until thursday when we go to clinic..he will be getting a handicap sticker for our cars..although more mine..today was extremly scary..i was told i was lucky he came out of so easily..seriously a 1year old shouldnt have to deal with this!

and on top of all this..in 1 week my baby sister will be 7..and it will be 7 years since i lost my mommy...then 11 days after that christmas..and then in another 11 days i will be 21...

so ya..i could really use some love and support through this season..and vince could use some prayers and some open airways...please keep us all remembered this season!!!!

vince also despite everything i felt the need to get pictures of him playing in the snow for his 1st time!!!!

the grinch WONT steal our xmas!

ok..so it seems we will be having xmas at home..THANKFULLY! it is now 4 months since vince was admitted..not our record..but definitly doing great..i love what the TOBI has done for him..he is progressing nicely in speech/occupational..and im glad i chose to get him help..we ave decided as a group now is a good ime o kick out bottles..vince will NOT drink pediasure other than in a bottle..sooo he will still get his bedtime bottle but none during the morning or day..and he has NO problems drinking from his sippy :) and since his favorite "real" food is yogurt he will be getting calcium there..and i plan to add oil to his foods for calories..and start him on yogurt juice for calcium...im sure his weight will be easy to maintain,as we have not had many issues with it since he was started on enzymes and other meds..today he saw santa,played with markers,and ate TONS...off to bed...