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.
Saturday, March 13, 2010
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.
Today Melissa's class at preschool dressed up in their western wear.
Let me set one picture up for you.
Melissa doesn't have anything western wear so I was in walmart looking for a cheap cowboy hat, found one in the toy area for $5 and then went looking for some kind of boots. Since they had all there winter boots on sale I just knew I would find some type of boots for her to wear. Not even looking for cowboy boots. I came across some cowboy boots for $7 marked down from $19. Then I remembered Melissa had a pink bandanna that Auntie Peyt gave her when she was born. Over the weekend I had Melissa try on the boots and hat to make sure it fit.
I will let the picture speck for it self.
Monday, March 8, 2010
On Saturday Melissa and her friend Garrett got to ride on Thomas the Tank Engine. It was a 25-minute ride, but the kids had a blast. Melissa is really in to trains so this was a great experience for her.
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.