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...

heartbreaking

ok sooo...last night i heard something went wrong with a friends CF test..and looked about every 5 minutes to her page hoping for an update..but nothing came until this afternoon..saying how this sweet inncocent 4 year old cutie may need a lung transplant...seriously? how can someone be healthy for part of their life then all of a sudden slide down hill..it's not fair..there's not been a moment today where i thought today how is vince going to progress? will he be ok? am i doing everything possible? he means so much to me..i just hate seeing a 3 year almost 4 year little girl have to come home early from her make a wish trip because shes sick and in pain..its a wish..cant CF take a 4 day vacation? and a 4 year old,cant she go to school and play with her friends? and a 7 year old,why did CF take him from his 2 younger brothers...vince is my life..and tonight i honestly can not take my mind off of these 4..because vince is included...i love him to pieces and just hope to be doing everything right

update-november

ok to we went to the dr today for vinces CF check-up...his o2 was down a bit at 98..which is still good but he has only ever read that low after he gets outta surgery..his weight was also down a little by 4 ounces..but since hes still at 55% the drs are not concerened...as for the puking,we are to mix 1/2 pediasure 1/2 milk...we were given chewable vitamins,we are to crush and give him 1/2 a day in applesauce...his little boy private parts were very red and "raw" looking..we are to give him a very warm bath every day with mild soap,and use aquaphor,if it spreads or does not get better he will be having testing done..the doctors were also ok with the fact the i have decreased his enzymes..so relieved...he got his 2nd dose of the flu vaccine and got his 1st hepitits A vaccine..over all things are good,just a bit worried about the rash..could be STAPH not MRSA..we were told staph is on everyones skin but when something such as a diaper is rubbing the area it can become infected but at this point does not look serious..also i got a list of all the times hes been to the doctor and his diagnosis'..it says CF,CFRD..and something else-i dont have the paper in front of me...im wondering why i was never told about CFRD and if maybe his blood showed high sugar levals at some point..this is so far my big question for next month...i will be mentioning this to sam as soon as he walks in the door...