What Cystic Fibrosis means to our family

Cystic Fibrosis is such a broad word. Our family was introduced to the heredity disease when we went to Iowa City hospitals to have a sweat test done. When I received the call from the nurse saying that her new born screening test was not normal. Part of me wanted to hung up the phone and forget the call ever happened. I then came to m senses and scheduled an appointment.

I have heard Cystic Fibrosis before, but had no idea what it was. The day of the appointment it just seemed like any other day, taking one of the children to the doctor. We also have a 3 and 1 year old at this time. They completed the sweat test, which is exactly what the word means, but it is done on the leg. She was wrapped in plastic wrap. She was such a great little girl, slept through the whole thing. The sweat was collected and we had to wait for the results, which took around 2-3 hours. We went and had lunch and my husband and I talk about many difference topics. One thing that I will never forget him for saying was "hope we never have to come back here again". He spent alot of time at the hospital when his father was sick about three years ago and was not keen on the idea of coming there on a regular bases.

Finally we were called into the office and all the test show very high numbers and that she had Cystic Fibrosis. As the nurse and the doctor was going over some treatments and they were talking about the worst I thought that we would never leave here and she would be in the hospital every other week. We we both scared for her, we did not know what was going to happen in the future. The doctors and the nurse we going over problems that Cystic Fibrosis children have to overcome. It was overwhelming. They talked about feeding tubes, coughing all the time, all the treatment that would have to be done. I was horrified wondering if I can do all this, have a full time job and take care of my husband and children.

They offered support groups and different ways to go though this challenge. That was great and I took all the information in. In some ways they made us feel overpower by this disease and they gave us the worst case scenarios. They are doctors and they know what they are talking about, but why do they have to mess with all your emotions.

When the shock was over, they discussed putting her on some pills that she would take every time she eats. Think about it she was eating every two hours and what was going through my head, how is that going to happen.

We left the hospital and neither of us spoke, we were silent all the way home. Made a few calls to family and friends and explained the whole story. For the first month it was rough, being introduced to something new and then trying to manage my time without thinking about what could happen. Nobody wants to think about the pain a child is going to have to go though or even losing a child.

Thinking back to the first month of her life there we times in a day that she would want to eat every hour, now we know why. Her diapers we full and very smelly. The pills that she would be taking now seems to be helping.

Mady is 18 months old and she still is taking her pills with every meal. That is the only treatment she is on currently. She is at 60% tile on the national average weight for children and 25% tile on height. We dealt with the issue and now currently there is not issue anymore. We treat her just as we treat the other children and she is doing great. Of course there are many questions that pop up along the way and we deal with them as they come just as we deal with our other two children.

Many times when there is a issue or problem everyone thinks the worse and that is fine, but not for our family. All of our thoughts were just what they should have been when my daughter was diagnosed with Cystic Fibrosis, but we moved on and you can't run, but you can live your life to the fullest.

Children getting bit by dogs

My husband had the day off in April of 2006 and decided to spend the day with our oldest daughter Annabelle, she was 4 then, 5 currently. I received a call around lunch time, and my husband said they were at the hospital and his dad's dog bit Annabelle in the head. I rushed to the hospital of course it had to be the one furthest away. The image of her I will never forget. She was doing OK, but it was very emotional to see her laying there with bandages wrapped around her head. I was wondering what was going through a 4 year old's mind at that point. For her to be at grandpa's house and have a horrible thing happen like that.

She came out surgery fine and we went home the next day. She laid on the couch for two days before she was able to lift her up. She was in good spirit, all she wanted to do is get up and play like nothing happened. From that day on we always spoke to her about how there are bad dogs and good dogs. She was upset with Grandpa for a while, she would not even look at him when he visited.

What is so upsetting about the whole thing is who are you mad at the dog of course or is the owner? And who gets to make the decision on if the dog get reported?

As far as the relationship between our family and Grandpa, we no longer see him at his house due to that he did not follow the law and report the accident also the dog is still alive. Not by my husband's choice. If Annabelle was not hurt so bad and had to go to the hospital the dog would no longer be alive. But would that be right or would it just be making him feel better.

Currently I have hired a lawyer to settle with the insurance company, but is that wrong?

Since then we adopted a yellow lab named Lily,and I think it was the best thing we could do for Annabelle. They play and the dog loves the kids. We just have to reassure her that there are good dogs and bad dogs.

Thank you reading

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