On Friday, October 1st Melissa had her CF Clinic appointment. She is doing well and growing like a weed. Her doctors are very pleased to see her doing so well. As the winter gets closer we start to get worried that she will come down with something, but she has had her flu shot so that will help, but can't keep the head cold away from her at school. Melissa's Doctor and Respiratory therapist think that it's time for Melissa to have her own Vest. In the past Paul and I have been doing her CPT's, but the Vest is supposed to be better for her and it also helps clear her lungs (if she has anything in them) better. Here is the website about the Vest if you want to know more http://www.thevest.com/
The Vest was invented for CF patients so it's one of a kind. Now days it's being used for other patients with other lung problems.
Melissa received her Vest on Saturday and after being trained on how to use it, she has been using the vest everyday. We requested a pink vest, but they sent her a black one. Should be getting the pink one soon. I just wanted to give you and up date on the new treatment for Melissa. She can do her breathing treatments while the vest is on. As you see in the video she likes it for now, but she might get tired of it like she does with her breathing treatments. Check out the video below.
Melissa's vest treatment
Melissa swallows her pancreatic enzymes all by herself
Thursday, July 8, 2010
As you all know Melissa has been taking her pancreatic enzymes since she was 3 weeks old with applesause. Last weekend she had a milestone. She started swallowing her pills whole with out the help of applesause. We forgot to grab the applesause as we walked out the door so when we ate lunch I asked Melissa "do you think you could swallow our enzymes with applesause?" She said " yes mommy I will let me show you" What do you know she did with out any problems. She has been taking them ever since last weekend all by herself. I can't tell you how happy I am that I don't have to carry around applesause anymore.
2010 Great Strides Walk Plano TX at OneTrueMedia.com
Saturday, March 13, 2010
Hello Family and Friends,
It's that time again for the Great Stride walk benefiting the Cystic Fibrosis Foundation. This will be our 4th year to walk. Paul, Melissa and I will be walking in the Great Strides Walk on May 1, 2010. I hope we can count on you this year by making a donation and join our team "Melissa's Crew" and walk with us.
Please pass this on to your family and friends.
Please see the following link to my Great Stride Website to make a donation or to sign up to walk.
http://www.cff.org/Great_Strides/TraciLiberto5889213076
Melissa started her TOBI treatment today
Wednesday, March 10, 2010
After a week of waiting to start Melissa on TOBI the day has come. When Melissa and I where at the CF Clinic last Tuesday her Social Worker gave me a coupon for a $10 co-pay for TOBI. She said I think you will need this. Boy was she right about that. After dropping off Melissa prescription the pharmacy called me and told me that it would be $1,095.21 that we would owe. I was in shock had no idea it was that much. Our insurance would pay $4000. So I told them to hold off on filling the prescription and I called the Novartis $10 co-pay and Melissa was eligible for the program. I can't tell you how happy I was to only pay $10.
After reading up on TOBI and getting some advice we started Melissa on it this morning. She has to take 2x day 12 hours apart for 28 days. Melissa morning began around 8:00am with her albuterol breathing treatment about 15 minutes and then the TOBI for 30 minutes. It is giving me some good bonding time with her. I pray this will kill the bacteria and she doesn't grow it again anytime soon.
I'll keep you update on how she is doing with the treatment.
Latest Update on Melissa
Tuesday, March 2, 2010
I wanted to give you an update on Melissa. Two weeks ago Melissa came down with either a sinus infection or an Upper Respiratory Infection (URI), took her in to her primary doctor. After three days (last Friday) she started coughing really bad. With Melissa having CF we always have to keep and eye on her when she starts coughing. After talking with the CF Clinic on Friday we started her on her breathing treatments and they wanted us to call back on Monday (yesterday) to give them an update on Melissa. She was still coughing so they had Melissa come in today for a checkup she had to have chest x-rays taken.
After talking with the doctor the cough could be one of three things.
1) she could be coughing because of the drainage from this last URI
2) RSV is going around and she could had had a touch of it
3) It could be caused by a bacteria called Pseudomonas aeruginosa.
Back in December she had a throat culture taking and it showed that Melissa was growing Pseudomonas aerugionsa. This is a type of bacteria that, among other things, causes lung infections in people with CF. Melissa is now taking her regular breathing treatments but has to take TOBI( Tobramycin Inhalation Solution which is a inhealed medication for CF patients. Melissa is also on a strong antibiotic to help kill this bacteria. If untreated this could cause a lot of lung problems for Melissa. Her chest x-rays came back looking good and her lungs sound clear. So with this treatment we should be able to stop the bacteria from spreading to her lungs. She isn't contagious so she can still be around everyone.
Paul and I want to thank you all for being so supportive of Melissa. She has been doing well these past 2 1/2 years and we hope she stays this way for ever. We know that things could get worse, but we pray that the cure for CF comes soon.
Please continue to keep Melissa in your thoughts and prayers.
Thank,
Traci
Melissa having stomach problems CFrelated
Thursday, February 25, 2010
Over the last couple of weeks I have noticed Melissa has had some stomach issues. As a CF caregiver one thing I have to do is make sure Melissa's BM is normal. If you don't have CF or don't take care of anyone with CF then this post might seem like to much TMI (To Much Info). Well one thing Paul and I noticed when Melissa was born she had a lot of greasy stool. As she has gotten older we have had noticed it every once an a while and also that she has a lot of gas. Since Melissa has been on enzymes she has only had to increase the amount she takes four times. The last time the doctor increased her enzymes was back in September 2009. That put her at 4 enzymes per meal and 2 enzymes for a snack. Two weeks ago when I noticed Melissa having trouble the doctor said to give her 5 enzymes per meal and 3 per snack. That didn't seem to help. Melissa was still having lots of gas and her stool was still greasy. This past Monday I called back and told the clinic and they said to give her 6 enzymes per meal and see if that helps. I have to say it is working!
I'm sure all of you with CF can relate to Melissa. I'm glad we could figure the problem out that nothing else was wrong.
CF Investigational Drug VX-809 Shows Encouraging Results in Phase 2a Trial - CF Foundation
This is great news for Melissa and cystic fibrosis patients who have the Delta F508 gene mutation. Melissa has the Delta F508 gene. I just hope this new drug will come out before Melissa has any lung problems.
Thanks to all those who have helped raise money to find a cure.
Click on this link to read all about the drug.
CF Investigational Drug VX-809 Shows Encouraging Results in Phase 2a Trial - CF Foundation
Melissa's CF Appointment
Wednesday, December 23, 2009
Melissa had her CF appointment yesterday and everything went well. She has gotten taller since her last appointment 3 months ago. She is right at 36in and she weighs 31lb 11.9oz. She didn't gain much weight from her last appointment, but her doctors aren't concerned at this time. Her lungs sound clear, praise the lord! She does have some congestion in her nose, but it could just be the change in weather and having the heat on that has got her congested. I know that both Paul and I have had some sinus pressure the last week.
Melissa did great today at her appointment she received her 2nd half of the H1N1 shot and also had to have blood work today. The CF Clinic gave her a stocking full of fun things in it, like her first barbie doll, a reindeer, Christmas book, a nice warm hat and some fun ELMO cups. Also every year the clinic gives the patients a Christmas ornament, she picked out a snowman ornament this year.
As we were waiting to get her blood taken the staff down in the Lab gave her a Beanie Baby Christmas Bear. She thought this was the best thing coming to this appointment getting all kinds of fun things.
We are so blessed this Christmas that Melissa is doing so well. It has been fun this year to get out and do fun things with her this season. We still are being careful where we take her, but she is have a lot of fun this Christmas season.
Melissa with all her goodies
Melissa's CF appointment
Tuesday, September 15, 2009
Melissa had her CF appointment today. I can't believe it took us 3 1/2 hours today! I found out that the clinic is going paperless and the Doctors are having a hard time with the new system. I hope they know how to us the system in December or I will have to come up with some fun things to do for Melissa. I have learned over the last year to bring toys, books anything that will keep her happy. Melissa did really well today. She was a big girl today when she had her x-rays taken. Her chest x-rays looked really good. She still has clear lungs. Melissa has gained 2lbs since her last CF visit. That is good that she still continues to gain weight. It seems to be harder to feed her these days. She is getting so picky about what she wants to eat. I still have a hard time getting her to eat her vegetables.
Paul and I have noticed that Melissa was having some stomach problems like lots of gas. We didn't know if this could be CF related or not. The Doctor and the Dietitian thought it could be that Melissa needs extra enzymes. They have increased her enzymes to 4 capsules per meal and 2 per snacks. We will see if this will help her stomach out. Other than that nothing else to report. Melissa will go back in December right before Christmas!
I did ask about Melissa getting the swine flu shot and they recommend that she gets one and also us. We have already received the regular flu shot, but the swine flu should be available in October.
Katey Ballard Graduates
Tuesday, July 21, 2009
I was going to post this back in May and forgot to do this. I want to share a video of one of our CF Friends Katey. She has an awesome story to tell. As a CF mom, I often find myself wondering what Melissa life is going to be like when she is older. With all the research and new drugs out there for CF patients, I know Melissa will one day be Graduating from collage like Katey. If you have time please go to Katey's blog and follow her story. Check out her video of her graduation day. Congraulations Katey on your graduation.
| Katey Ballard graduates from UAB |
Melissa CF Check up
Last Tuesday Melissa had her CF Check up and it was another good check up.
She has to go every three months. First I have to say it has been a fast two years. On this day Melissa took cupcakes to the CF Clinic to help celebrate her 2nd Birthday, but also to thank the CF Staff for all they have done for us. It hasn't been an easy two years, but it has been good. The staff was so surprised that Melissa thought of them. I think it's important that we thank them.
Melissa's check up was great once again she is doing well. Her lungs are clear and her weight is good. She weighs 29lbs and is 35 inches tall. Melissa's was examined by Dr. Prestidge today. He was one of the first CF Doctors we met and he was shock to see her. He said that she doesn't look like a CF patient. He means this because of her weight and she isn't cough all the time.
Paul and I went to a CF seminar back in April and got to meet Adult CF patients. It was great to hear their stories and how they are living a normal life. The oldest adult was a 51 year old female. She has twin boys who are 21 years old. She was telling us the stories of when she was diagnosed. She said the Young kids these days have it made with all the drugs, and medical supplies.
Also a Doctor from Cook's Children gave us some great news that there is a drug in the testing faze that looks promising.
Once again thanks for your prayers, I truly believe that this is why Melissa is so healthy because of all the prayers.
Here are some pictures of the CF Staff with Melissa
Another Great Stirdes Walk: Lubbock Texas
Wednesday, May 20, 2009
On Saturday, May 16, 2009 Melissa, Paul and I walked in the Lubbock Texas Great Strides Walk. This was our 2nd year to walk in Lubbock. Melissa's Crew had 15 walkers this year! The weather was cold and raniey, but that didn't stop the walk.
Paul and I were so happy to see this many turn out for Melissa. I had a big smile on my face the whole day. We had close friends and family walking with us and also a lot of my moms (DD) co-workers. My Uncle Sherwood drove all the way from Dallas to Lubbock just to walk for his Great niece. He could not be at the walk in Plano this year. We thank all of those who came out to walk with us at the Lubbock walk. Also thank you DD for getting a team together again this year and raising money to find a Cure.
The Early Show on CBS News to Feature Great Strides
The Early Show on CBS News to feature GREAT STRIDES and CFF Volunteers!
On Saturday, May 16 from 7:00 a.m. to 9:00 a.m., hundreds of GREAT STRIDES walkers will line the sidewalks on the set of The Early Show and be “chatted up” by weathercaster Lonnie Quinn. Families will carry banners and cheer for GREAT STRIDES on national television. Don't forget to tune in!
Texas Legislature to Fund CF Newborn Screening
Texas Legislature to Fund CF Newborn Screening – All 50 States Soon to be Screening for CF
May 11, 2009
The Texas Legislature has approved legislation that includes full funding for newborn screening for cystic fibrosis. Once passed, the legislation will provide funds to ensure that every infant born in the state is checked for CF at birth.
Texas was the last state to adopt a full newborn screening program. The state will determine an exact start date for the program shortly.
Babies that are screened are more likely to be diagnosed earlier, which means that they can start treatment sooner. Early treatment for babies with CF can lead to better health, fewer hospitalizations and longer lives.
Legislators in Texas supported newborn screening funding after hearing from CF Advocates about the importance of the program. CF Advocates have been instrumental in bringing about newborn screening successes. Since 2005, Advocates have helped convince forty five states to require that all newborns be screened for cystic fibrosis.
You can speak out to your elected officials on behalf of people with cystic fibrosis.
2009 Collin County Great Strides Walk
Tuesday, May 12, 2009
On May 2, 2009 we walked in the Collin County Great Strides Walk. We had a good turn out at the walk. Our team was small this year because of the date, but Melissa's Crew raised $2, 795. We still have some more fundraiser coming. Enjoy the video and watch the end with Melissa dancing.
Please Pray for a CF Family
Sunday, March 22, 2009
I have been following baby Ethan's Story. Ethan had CF and other health issues and he had been fighting from day one. I just read his blog and he passed away, he was Born August 1st, 2008 and passed away March 13th, 2009. I know his family would appreciate all the prayers. You can read Ethan's Blog at http://ethanamurray.blogspot.com/
This hits home to Paul and I because of Melissa. We count our blessing everyday that she is doing well with her CF, but that doesn't mean that tomorrow or in the future she will have more health problems. We need to find a CURE SOON so CF stands for CURE FOUND! The average life span is 37, but with Ethan's story it was only 7 1/2 months. Please help us find a cure for the disease.
Update on Melissa's CF Appointment
Thursday, March 12, 2009
As I said in my last post Melissa had lab work done. Her doctor wanted to check her vitamin D level. We got good news this morning. Her vitamin D level is 37 and last time it was 23. The low end of normal is 30.
Melissa's CF Check UP
Tuesday, March 10, 2009
Melissa had her check up at the CF Clinic today. It was time for her to have another chest x-ray and her lungs still look good. She also had to have lab work done to check her vitamin D level. Back in September her level was low so she has been taking vitamin D chewables. We won't get the results either later today or tomorrow.
Once again Melissa is doing well. She gained one pound in three months, but that's ok because at this age she will stop growing so fast. She has slowed down on eating.
We also got good news that starting in May we can introduce Melissa to the church nursery. It's time for her to be around germs oh and kids! We can also let her attend in the fall/winter, but have to be more concerned with cold and flu season. Maybe we can also put Melissa in a mother's day out program for 2 days a week. We will keep you posted on that.
Melissa started swim lessons last Saturday. She loves the water. I will post pictures after this weeks class when Paul can be there to take pictures for me.
Please continue to pray for Melissa that she stays healthy.
Traci
2009 Great Strides Walk
Hello Family and Friends,
It's that time again for the Great Stride walk benefiting the Cystic Fibrosis Foundation. Paul, Melissa and I are walking again in the Great Stride Walk on May 2, 2009. I hope we can count on you this year by making a donation. We would also love for you to join our team and walk with us.
Please see the following link to my Great Strides Website
http://www.cff.org/Great_Strides/TraciLiberto5889213076
Check out Melissa's 2009 Great Strides Video
Thanks for your donation
Sick
Wednesday, January 21, 2009
So I haven't updated in awhile. We have been under the weather the last week and still sick. Melissa came down with a cold 9 days ago and I was hoping it was a mild cold. Well it turned in to a cold/infection. I kept holding out before I called on the doctors. The last couple of times she had a cold it wasn't anything to bad. This time it wasn't going away and her green snotty nose was getting worse. She also started coughing and as a CF mother I started to worry. I don't know about any other CF parents but I have a hard time deciding who to call. Do I call Melissa's pediatrician or do I call the CF Clinic. On Monday I called the CF Clinic to talk with a nurse. After telling the nurse that Melissa was going on 8 days of a green snotty nose and she was coughing she said to bring her in on Tuesday (yesterday). I had started Melissa on her Albuterol to help with the congestion in her chest. Funny thing is Melissa has never liked her breathing treatments and this time around she is acting like a big girl and sitting in the chair and not fighting me on this.
Yesterday I took Melissa in and found out that she also has an ear infection. Her lungs sound clear (PTL) but the doctor was concern about her green snotty nose for 8 days and the cough. She had a throat and nose culture taking. We haven't found out anything on that yet.
Melissa was put on 2 weeks of antibiotics. I think she is getting better already because she slept good last night, 1st time in over a week and she took a 3 hour nap today! She is making up for lost sleep!
Melissa has past her cold on to me. I am congested and have a cough. I'm trying to taking over the counter medication.
