My name is Lorita Valdez and I am a proud parent of a child with Cystic Fibrosis. You probably wonder why I say I'm "proud", right? I am proud that my eight year old son is fighting this disease with every fiber of his being. My husband and I went through the same thing that you are unfortunately going through. Andrew was diagnosed with CF at 3 months old and until I read your letter, I thought Andrew was the youngest patient ever diagnosed. I read your letter and I was like "Wow!" . I will share my experience with you and let you in on what I've learned along the way. I hope that it helps and if it does I would surely like to hear from you.
You see, our experience began when Andrew was around 1-2 months old. He began asperating on the milk I was giving him. It was coming out through his nose. I kept telling his pediatrician about what was happening and he kept giving me the "Oh, you're a new mother aren't you?" bit. It took me going through about five other pediatricians before we found someone that seemed to be on our side. Before I had Andrew I didn't know the kind of power I posessed when it came to the medical care of my son. I didn't know that I could demand a hospitalization until they found out what was wrong with him. I kept letting them send me home hoping this was going to be the last trip to the hospital. I didn't know that I had the power to demand the doctor's take a chest x-ray. It wasn't until I got mad at the world that I found out the key is just don't take "NO" for an answer. It doesn't matter how rich or poor you are, when there is a disease that has afflicted a part of you, come hell or highwater you will get the necessary treatment for your son/daughter.
I am in Tucson, Arizona. My mailing address is 2025 S. March Place - 85713. In my city, there is what is called The Children's Rehabilitative Services (CRS). They are currently providing Andrew's pediasure with fiber. He is alotted 10 cases every month, and before we were connected to them, we were getting the pediasure with fiber from his Pulmonologist's drug representative. If you need help paying for this I would suggest you inquire about a program like this or get in touch with the company that makes Pediasure. I am looking at a can now and it looks like the company is a product of the ROSS company. If you let them in on your situation I'm sure they can either help you or point you in the right direction. CRS is also paying for all of Andrew's other prescriptions too. Andrew also gets SSI through the government. He is listed as disabled. It's only around $200/month but it helps put food on the table. I am a stay-at-home mother, not by choice. We also have a healthy 3 year old who is a blessing as well. We knew what we were getting in to when we decided to have another child but we took that chance. I, certainly, wouldn't blame anyone who wouldn't want to take that chance. It was a scary jump but my husband and I have my side of the family to help watch the "little one" when Andrew's in the hospital. I am blessed for that.
My son, Andrew is currently in the hospital for what they call a "tune - up". He's currentl on I.V. medication and has his pt's 4x's a day. Andrew is eight years old and he's able to use the "Vest". I'm not sure if you know about the vest yet but there are products out there that cant help you when your child gets older. The vest is a product that allows the child to be pounded on while taking their albuterol or xopenex treatment. Andrew does Xopenex for his treatments with one month on Tobi and alternating one month on the Pulmozyme. Pulmozyme works best to break up the mucous plugs that grow in his lungs. Andrew has the most common type of CF. While I consider any child with CF severe, his is also severe. His defective gene is the Delta 508. If it sounds like I know alot, it's only because my husband and I have been through alot with Andrew. When Andrew was around one year old, he also had a g-tube in place but because I was in denial I thought he was gaining weight and he didn't need it anymore so I had them remove it. I regret that move now, only because I see that in doing so it has only put him that much more behind in his growth and weight. I hindered his health without knowing all of the facts. I try to comfort myself by saying that I didn't know what the future would hold. I thought I was helping him by thinking positive and saying to myself that he will eat on his own. He will get better and overcome and he will win this fight. I am scared too. All that your are feeling is right on the button and it is okay to feel whatever it is you're feeling. Don't let anyone try to tell you otherwise. There are people that are going to tell you that you have to be positive otherwise your child will pick up on your negative feelings. That much is true, but you have the right to FEEL any damn way you want on your own time. I don't know if anything I've said is helpful to you but if you have any questions please feel free to contact me via e-mail or my mailing address. When Andrew was first diagnosed his Pulmonologist gave me a book about CF. The name of it is Cystic Fibrosis - A Guide for Patient and Family, By David M. Orenstein. I never could get through the introduction without breaking down in tears so here it sits, next to my computer.
When Andrew is home, he also gets night feeds that run 175/10 hour period. He is also underweight and not in his growth range for his age. He is small but has the heart of a lion. I know you will agree with me that children with CF seem to stand out more so because of the hardship they go through.
I hope you don't feel bad about feeling bad. I can't stress this enough. In order to become stronger, I feel you have to go through the storm so that you will eventually be able to see the sunlight again.
Hope to hear from you.
Sincerely,
Lorita Valdez
Please take good care of your self
