It's been a couple of years

Where my life is now still stressful and not normal. Kayla is 17 a new driver and has a boyfriend of 5 months she has had a double lung transplant almost 3 years ago (2-13-13) it has been a long rocky road but it has been a big change in our lives. We go to Pittsburgh PA every 2 months for a clinic visit and a biopsy she has had mild rejection 2 times she is still very small only 4'10 and 80lbs. The boys Ethan is 14 (will be 15 in March) and still hasn't been hospitalized for his cf. Zach is 14 and is growing like a weed. Kayden is 13 and is growing just got glasses now Zach is the only child without glasses. And the Baby of the family is Dylan he is 12 still hasn't been hospitalized for his cf. Went to Disneyworld for the first time On March 14 2014 It was Ethan make a wish and went for Dylan's to Disney World on Feb13 2015 and our Family has been dreaming and wishing to go Back. Not only is it a magical place it left us feeling normal and forgetting about the daily treatments and the meds and the worries of a Cystic fibrosis/Transplant life I would love to go every year to give the family great memories but will never happen again just not in our budget sucks never having money for fun things. Been looking for a job but I have been out of the workforce for 17 years its hard to find one.

its been a while

Its been a while since i last wrote a lot has been going on in life,Kayla has been really sick didn't think she was going to pull through this but she did she is a fighter and that makes me love her even more she was on iv's in july-beginning of aug She started 6th grade on aug 28 and made it for the first week then she got sick:( she has been on iv's since sept 7th the doc added a new iv on sept 28th and that when she took a turn for the worse she was spiking high fevers and coughing blood.The doc put her in the IMC at hershey medical center when she got there she needed 10 liters of oxygen but every day she got better she had only spent a week in the imc now we are home and waiting for our trip to pittsburgh childrens hospital for a double lung transplant evaluation. The boys are doing great getting big and have been troopers through all of this, since i've been focused on kayla and i feel bad that i don't spend alot of time with them right now.

This year has been really tight since i can't babysit right now so that extra income is gone so christmas is looking very bad for the kids:(((( and my husband makes to much to get any help. on a onther note my brother is a father not only was my nephew born on my brothers birthday(Aug 9th) that was the day my dad died 17 years ago so i feel greatful for xander it was nice to see a new life born on such a sad day its like my dad came back into our lives all over again
I LOVE YOU XANDER VEGAS TATRO! u are a joy to have in my life jerry you are an amazing father you stepped up when tara was sick but now she is better and is a part of his life again.

"What are you or will you be doing in 2010 to create change and how will winning this technology bundle help your efforts?" I want to help in efforts of fundraising and getting the word out about cystic fibrosis since i have 3 kids who have cf this would help me when i'm not at home since my kids are allways at the doctors plus at metings since I do speaking for fundraisers and would to stay in touch with new parents with lots of questions.

Kayla is finishing up another round of ivs we got it before she need to be put in the hospital. well I have some good News Kayla don't have an eating disorder its all a control issue!!!!! she has been doing great she gained 2 pounds in the last month she finally is 64 lbs still needs a lot more weight to stay healthy but that is a start. Today is a snow day we had so much snow its as high as our pool deck i would lose the kids if we went outside to play and we have more coming on monday ugh! I hate snow!

I've been entering more giveaway for babys since my brother and his wife are expecting so far I won a Bumbleride Stroller and I'm so jelouse that is a sweet ride only if i could shrink one of my kids. My baby is turning 6 wow how time flys and now i have the baby blues .

Man do I hate Hershey Medical Center!!! they turned me into childeren and youth because Kayla is under weight and I didn"t take her to a appointment that was my choice SHE DON'T HAVE AN EATING DISORDER!!!! she just don't eat much because she isn't hungry because you give her 2,000 calories at night so now they want to take her away because she is 63lbs and it just makes me so mad! How many kids with cystic fibrosis are heavy? most are under weight duh your the doctor and don't even know that! thats funny that they only say about Kayla I have 2 boys who have CF and nothing is even said about them!UGH I just want to scream! f you have a child and it needs to go to Hershey RUN!!!! do not go find a better hospital!

UGH!!!!! why when you show a hair cutter a picture they always mess it up I should know better then just get it cut all one lenght now it so short i look like a boy and its all chop not jut even I HATE IT!!!!!!!! I know it will grow back back but when? Every time I look in the mirror I want to cry I miss my shoulder lenght hair.
Kayla is going back to school after being home since October 19.She don't want to go back and I don't want to go outside but life goes on and w have to do things we don't like or know better and should go with my gut. Kayla so far has raised $40.00 for her May 1st walk wish it was more but with the holidays no oe wants to give her a $1.00. we are selling subs but won't know the total until all sub papers are in which will be soon I'm hoping she can reach her goal she has been doing wonderful on treatments and putting on weight.time to get kids to school

need 2,988 more to reach kayla's goal!!! 12 people so far gave money thank you!!!!! i know we can reach this goal we have until May 1st to reach it

So far a good morning! kids have off of school ugh i love my alone time, how do you get a 6 year old to stop tattling? he is in first grade and his teacher had a baby 2 weeks ago and a sub is taking over until she comes back and the sub has this thing called the tattling turtle and ever since that he tattles on his brothers and most of the time is about nothing I SO HATE TATTLING! . WOW Ethan is getting big he now weighs 67lbs that is a nice size for a child with CF. Some one said that CF is a blessing what? a blessing I know that its not to our family I don't wish CF on anyone and that a person with CF isn't limited? yes they can do what a normal person can do but they aren't normal i know i don't have to do vest for 30minutes 4 times a day and breathing treatments and take a pill everytime i eat and other meds just to stay healthy so how can't that be limited? i just want my kids to be normal and just be able to take a vacation and not have to go back to the motel for treatments or have to take the hole house so they get everything they need to stay healthy. I just don't know what people think,Its hard as a mother not knowing when your child is going to die but knowing that a child with CF can die earlier then a healthy child but i'm not saying that i would change my life God gave me 5 kids I'm very happy for that and he gave me 3 extra special kids I still don"t know why I'm not a strong person i get so upset and worried about everything and I'm a big cry baby.

kayla still needs 2,994 people to donate $1.00 please help her and others with cystic fibrosis! i know we can do it please if you see this post pass it along to everyone its $1.00 i know alot of people don"t have the funds but its not going in our pockets its for funding to find a cure!!!!

kayla's doctor appt.

Kayla had a doctor appt. yesterday and it was the best one that she ever had she gained weight!!!! she gained 3lbs in a week wow i have know idea how ahe did it because she doesn't eat she gets night time feeds through her g-tube but its nothing new. And her doctor said this is the best her lungs ever sounded since he had her (thats 2 years) so what happened there? could it have been the IPV machine? or the steriods? i still have no clue but we still have 1 more week of iv's oh yeah her pft went up from 33% to 43% she was that low we had put her on the lung trantsplant list but now we can hold off on new lungs!
Kayla is still trying to reach her goal in getting 3,000 people to donate a dollar she has some people sending some dollars but still has a long way to go if you live in PA and near jonestown we are selling subs to raise money for cystic fibrosis! and if anyone has ideas of fundraiser or has anything to give for chinese auctions or your a place of bussiness that would like to donate we would love to hear from you!

kayla has a wish she is looking for 3,000 people to donate $1.00 to the cystic fibrosis. She just wants to find a cure and wants to see how many wonderful people are out there. she is only 10 but she has big dreams and wants to live a normal life she has to miss out on alot of things because she cannot miss a treatment or she will get sick.One thing kayla has a hard time doing is eating she is never hungry we tried everything and nothing works and on top of that she ia very picky. if anyone would like to help here is the link http://www.cff.org/great_strides/dsp_donationPage.cfm?registeringwalkid=6477&idUser=236667&source=SNFB

kayla's wish