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...

UPDATE

ok so here's the deal...on monday at speech therapy we noticed vince was having a hard time breathing,and since we knew he was growing bacteria and that he has asthma we chose to call the doctor and because his poo was not regulated yet...so we went up tuesday for xrays on his chest and abdomen..he did infact have extra mucous in his lungs but it is not pnemonia..he also has extra poo in his stomach,but as long as we keep up with miralax and that he goes each day he should be ok...i also FINALLY got the doctors listen to me and he will be started on tobi this coming wednesday..he will go to the clinic to be sure he doesnt have trouble breathing...then i chose to mention a rash he has on the backside of his hip where his diaper sits,and they say it could be the start of MRSA..but yet NEVER tested him..so i decided i was NOT going to let this go..i took him to the local urgent care at 1pm when they opened the following day..they said it looks to be an irritation of the diaper and told me i could cover it with a band aid or gauze at night and also gave me a prescription cream..the 1st night of doing this and the rash was almost gone..so now we are just trying to get caught up on some things at home..
***DONT FORGET TO CHECK OUT MY TEAM VINCE ALBUM AND SUPPORT THE CF FOUNDATION WITH A PURCHASE...i will also be selling pumpkin rolls WHOLE-$10 and HALF-$5....

new diagnosis

well we went to our monthly visist this tuesday..vince's cold was mostly gone,although they did a culture to be sure there is no bacteria since he is still having trouble breathing..although from the info i told the and my concern they started him on an inhaled steroid called pulmicort..it seems to be helping after just 2 treatments..he is still a bit stuffy but much better..he was also still constipated so they upped the miralax to 2x a day and 1/4 - 1/2 cup of plum or prune juice each day..so much to remember..so the doctors do infact believe that vince has asthma..he gained a tiny bit of weight..he is up to 24 pounds and 1 ounce..and 30 1/2 inches tall...
his speech therapy has improved and his therapy time is down to a 1/2 hour once a week instead of an hour...he has tried many,many new foods in the past week,and i am very proud of him...he is now trying to run...

just a cold?

so vince started getting a snotty nose and cough over the weekend..so by tueday when he coughed up yellow mucous i decided i better call the dr to be sure it wasn't an infection...so we drive the 60+ minute drive to learn its just a cold (at this point)they said to continue 4-6 hour albuterol treatments during the day and to allow him to sleep at night...ad to give motrin around 5 since he has been cranky and his body could just be sore...latr after we made it home and were doing another treatment vince puked a large amount..which in a way is good so he gets the crap out...yesterday (wednesday) he was doing much better although still stuffy and has trouble breathing when he runs around...today he is about the same as yesterday..but as of yesterday was eating foods he had not eaten in a long time..soo we go back tuesday for his normal scheduled monthly appointment and they will see how he is...he has no fever which is a big sign there is no bacteria :) so lets hope he gets better completly by tusday!!!!!