Introduction
When Clare was born in 2007 we thought she was the healthy normal baby everyone prays for. We were thrilled! Our nephew was born only a few weeks earlier. Clare grew just like we expected her to. Our nephew didn't grow and didn't thrive. His doctors and parents urgently searched for an answer. When Clare was two months our nephew was diagnosed with Cystic Fibrosis. He began treatments and in a few months was beginning to catch up to his cousin in size and weight.
Clare has always been very similar to our nephew in size and weight, coloration, and very smelly diapers. We were thrilled at how well he was doing with treatments. Recently our nephew even passed Clare in weight. At one point I wondered why they were still worrying so much he was healthier than our Clare who didn't have CF.
However there was always this little fear in the back of my mind that said they were too similar. But my fears seemed more like the bogyman than reality. I was reassured time and again by our pediatrician that she was growing normally and staying on the growth curve. Checking Clare for CF felt like checking for monsters under the bed. I didn't want to look foolish and secretly I feared that the monster might be real.
We were happy and told ourselves that Clare was perfect. On St. Patrick's Day we were playing outside and Clare fell down a short set of cement steps. She turned upside down in the air and landed on her head on the edge of the bottom step. We rushed her to the ER where they did a CT scan to determine if she had internal damage of any type. She was fine, at least her skull, brain and forehead were. They could see from the scan that her sinuses were extremely enlarged and full.
They told us it's probably an acute sinus infection. The ENT Dr. checked her out and disagreed. She's had no fever, only a clear runny nose and no lethargy or other signs of being sick. "She's not sick", he said. He thought the ER might have been mistaken and overreacted. When he looked at the CT scan he knew they weren't.
The suspicion was a mucus plug or nasal polyps. Both of which are very common in people with CF. It was after hearing this that I did tell him there is CF on her dads side of the family. We scheduled the Sweat Test and MRI for the next week.
All week I dreaded these tests. I asked myself, "what if she has it? what if she has CF?" And I wouldn't answer that question. I had to hope that we would go in, the Sweat Test would be negative and the MRI would show normal sinuses. CF is just a monster under the bed, just a bad dream, Clare couldn't have it, not for real. The only thing these tests would do is confirm that she doesn't have CF. I was so sure that nothing would come of this that I didn't tell anyone, other than my husband of course, about the Sweat Test. I didn't want to raise unfounded fears and concerns. I let both Grandmothers know about the MRI but I made sure they thought it was just routine. It was to be sure her sinuses were now clear, nothing to think twice about.
The day before we went in for testing I almost called it off. I called my husband Rick to tell him I wasn't going to do it, I couldn't take her in, she's perfect there's nothing wrong with her. Luckily he could answer my call at that time and was able to calm down before I spoke with him. Yes, we were going to do the tests. There was no reason not to.
So Clare and I got up early the next morning. I packed us some food and the two of us left. The MRI was okay. I was sure they wouldn't see anything that wasn't normal. The worst part was coming out of sedation. Poor Clare was so groggy she couldn't walk and walking was all she wanted to do. The Sweat Test was horrible. She screamed and cried and struggle so much it took two of us to hold her down for the five minutes she had to sit still.
It ended, we had enough sweat and we went home. It was time to have a great Easter weekend. I told Clare that it will be a long time before we have to spend another long day in the hospital. And it would be at least a month before her next doctor appointment. And we had just finished her antibiotics for the sinus infection so it would be a long time before she had to take medicine again too. So, it was over. And it wasn't too bad. The result would be normal so they probably wouldn't call with them until Monday. 4:15pm our doctor called.
He told us the results were back. I hadn't expected him to call. The Sweat Chloride Test was positive. On the phone I was calm but shocked and sad. He gave me all the information he could and told me they CF clinic would contact me on Monday.
I got off the phone and grabbed Clare who was playing right next to me. I hugged her and sobbed. I told her she's still the perfect little girl, she's still perfect. I dialed the doctors number, there had to be a mistake, this couldn't be right. Couldn't it be a false positive? The high chloride levels in her sweat had to mean something different. Rather than choosing a number on the automated system I hung up. I called Rick. He had just gotten off work. I tried hard not to sound upset while I told him the news.
That Easter weekend was the hardest weekend I've had up to this point in my life. I kept thinking, "this couldn't be right. We're going in to the CF clinic on Monday and they'll say, this girl doesn't have CF. She's perfectly fine." But it got more and more real as we told everyone. We already knew a lot about CF because of our nephew. We explained it over and over. We posted it on or blog and our facebook pages. We knew there wasn't really a mistake and that we wanted everyone to know.
We made the appointment to go to clinic on Monday. our nephews mother was planning on coming with because Rick was going to have to go to Vegas for work. Rick was too sick to go to Vegas so Sunday night, after spending all day in bed he got a hold of a partner at work and they postponed the trip for a week. I was actually a little happy. Ricks trip was canceled and now he could be home with Clare and I he could go to clinic with Clare and I and we would learn and get used to this together. I thought he must have gotten sick so that he could stay home and be with us. I even told our nephews mother Rick would be there so she didn't need to come. Wrong again. Rick was unable to get out of bed for the next three days. We went to clinic just Clare and I. I didn't ask anyone to come with because I kept hoping Rick could come. Even after Clare and I got there and we had started the instruction I kept hoping. I hoped he'd make a miraculous recovery and join us.
Of course he didn't. So I got through our first clinic appointment by myself with Clare. It was a whirlwind of doctors and specialists coming in and out giving us so much info. I was so glad I had already learned as much as I could when my nephew was diagnosed. Half of what I heard was stuff I already understood. The other half of the information was new and I couldn't have understood it without the fist half.
Now five weeks later Clare is better than ever! She has twice the energy. She is happier and growing faster. She has a tan for the first time in her 18 months of life. This calm kid who was the "perfect angle" and sat still for long periods of time was simply malnourished. And now she was finally trying to climb things and she began jumping as I held her in my lap for the first time only weeks ago. What an amazing change. Everyone who knows her has noticed it. She's even better around relatives whom she knows. No wonder she was so clingy to mom before she probably felt like crap. Life is so much better now that we know about her CF and can help her with it.
Clare has always been very similar to our nephew in size and weight, coloration, and very smelly diapers. We were thrilled at how well he was doing with treatments. Recently our nephew even passed Clare in weight. At one point I wondered why they were still worrying so much he was healthier than our Clare who didn't have CF.
However there was always this little fear in the back of my mind that said they were too similar. But my fears seemed more like the bogyman than reality. I was reassured time and again by our pediatrician that she was growing normally and staying on the growth curve. Checking Clare for CF felt like checking for monsters under the bed. I didn't want to look foolish and secretly I feared that the monster might be real.
We were happy and told ourselves that Clare was perfect. On St. Patrick's Day we were playing outside and Clare fell down a short set of cement steps. She turned upside down in the air and landed on her head on the edge of the bottom step. We rushed her to the ER where they did a CT scan to determine if she had internal damage of any type. She was fine, at least her skull, brain and forehead were. They could see from the scan that her sinuses were extremely enlarged and full.
They told us it's probably an acute sinus infection. The ENT Dr. checked her out and disagreed. She's had no fever, only a clear runny nose and no lethargy or other signs of being sick. "She's not sick", he said. He thought the ER might have been mistaken and overreacted. When he looked at the CT scan he knew they weren't.
The suspicion was a mucus plug or nasal polyps. Both of which are very common in people with CF. It was after hearing this that I did tell him there is CF on her dads side of the family. We scheduled the Sweat Test and MRI for the next week.
All week I dreaded these tests. I asked myself, "what if she has it? what if she has CF?" And I wouldn't answer that question. I had to hope that we would go in, the Sweat Test would be negative and the MRI would show normal sinuses. CF is just a monster under the bed, just a bad dream, Clare couldn't have it, not for real. The only thing these tests would do is confirm that she doesn't have CF. I was so sure that nothing would come of this that I didn't tell anyone, other than my husband of course, about the Sweat Test. I didn't want to raise unfounded fears and concerns. I let both Grandmothers know about the MRI but I made sure they thought it was just routine. It was to be sure her sinuses were now clear, nothing to think twice about.
The day before we went in for testing I almost called it off. I called my husband Rick to tell him I wasn't going to do it, I couldn't take her in, she's perfect there's nothing wrong with her. Luckily he could answer my call at that time and was able to calm down before I spoke with him. Yes, we were going to do the tests. There was no reason not to.
So Clare and I got up early the next morning. I packed us some food and the two of us left. The MRI was okay. I was sure they wouldn't see anything that wasn't normal. The worst part was coming out of sedation. Poor Clare was so groggy she couldn't walk and walking was all she wanted to do. The Sweat Test was horrible. She screamed and cried and struggle so much it took two of us to hold her down for the five minutes she had to sit still.
It ended, we had enough sweat and we went home. It was time to have a great Easter weekend. I told Clare that it will be a long time before we have to spend another long day in the hospital. And it would be at least a month before her next doctor appointment. And we had just finished her antibiotics for the sinus infection so it would be a long time before she had to take medicine again too. So, it was over. And it wasn't too bad. The result would be normal so they probably wouldn't call with them until Monday. 4:15pm our doctor called.
He told us the results were back. I hadn't expected him to call. The Sweat Chloride Test was positive. On the phone I was calm but shocked and sad. He gave me all the information he could and told me they CF clinic would contact me on Monday.
I got off the phone and grabbed Clare who was playing right next to me. I hugged her and sobbed. I told her she's still the perfect little girl, she's still perfect. I dialed the doctors number, there had to be a mistake, this couldn't be right. Couldn't it be a false positive? The high chloride levels in her sweat had to mean something different. Rather than choosing a number on the automated system I hung up. I called Rick. He had just gotten off work. I tried hard not to sound upset while I told him the news.
That Easter weekend was the hardest weekend I've had up to this point in my life. I kept thinking, "this couldn't be right. We're going in to the CF clinic on Monday and they'll say, this girl doesn't have CF. She's perfectly fine." But it got more and more real as we told everyone. We already knew a lot about CF because of our nephew. We explained it over and over. We posted it on or blog and our facebook pages. We knew there wasn't really a mistake and that we wanted everyone to know.
We made the appointment to go to clinic on Monday. our nephews mother was planning on coming with because Rick was going to have to go to Vegas for work. Rick was too sick to go to Vegas so Sunday night, after spending all day in bed he got a hold of a partner at work and they postponed the trip for a week. I was actually a little happy. Ricks trip was canceled and now he could be home with Clare and I he could go to clinic with Clare and I and we would learn and get used to this together. I thought he must have gotten sick so that he could stay home and be with us. I even told our nephews mother Rick would be there so she didn't need to come. Wrong again. Rick was unable to get out of bed for the next three days. We went to clinic just Clare and I. I didn't ask anyone to come with because I kept hoping Rick could come. Even after Clare and I got there and we had started the instruction I kept hoping. I hoped he'd make a miraculous recovery and join us.
Of course he didn't. So I got through our first clinic appointment by myself with Clare. It was a whirlwind of doctors and specialists coming in and out giving us so much info. I was so glad I had already learned as much as I could when my nephew was diagnosed. Half of what I heard was stuff I already understood. The other half of the information was new and I couldn't have understood it without the fist half.
Now five weeks later Clare is better than ever! She has twice the energy. She is happier and growing faster. She has a tan for the first time in her 18 months of life. This calm kid who was the "perfect angle" and sat still for long periods of time was simply malnourished. And now she was finally trying to climb things and she began jumping as I held her in my lap for the first time only weeks ago. What an amazing change. Everyone who knows her has noticed it. She's even better around relatives whom she knows. No wonder she was so clingy to mom before she probably felt like crap. Life is so much better now that we know about her CF and can help her with it.
by Raelene
