SydneySquad
New member
I am new to this site, but certainly not a new CF parent. My husband and I are starting to feel quite alone in parenting a child with CF. We have many friends and family who will solicit their advice(wanted or not) but no one has actually had any experience with CF in any way. Our daughter is almost 6 years old and has two copies of deltaF508 and wasn't diagnosed till 16 months old when it was almost too late. She was the only one in our entire family to have CF…we didn't even know what CF was until her diagnosis. Since then, she has endured many tune-ups and hospitalizations due to pneumonia or pseudomonas. So many people try to make us feel better by saying, "But she looks so healthy, CF must not affect her too much." I would say, I do consider her a relatively healthy little girl…but it is hard work!
My husband is active duty in the military and we recently moved to Maryland. It has not proven to be a very good move for our daughter because she has had 2 hospitalizations in 2 months. When we lived in Washington state, she could go a whole year without a tune-up. This past summer, we struggled with the idea of sending her to Kindergarten in public school. She had a tune-up right before the school year began and we sent her. She LOVED it. She is such a social and happy little girl. However, she couldn't shake any colds and ended up being admitted through the ER within a month of school starting. She had pneumonia is both lungs, labored breathing and losing weight. After the 3 weeks of nursing her back to health with IV meds and extra PT, we were forced to reconsider our decision to send her to Kindergarten in public school. I work from home part-time and we also have a 4 year old (without CF). We now keep Sydney home with the help of the Home and Hospital program(public school provides a tutor at home 6 hours a week). We still goes to gymnastics and a gym and art class at the Y to stay socialized and active. However, she is rebelling and angry at this point. She got a taste of public school and she is angry that she can't go back without getting sick. She is very disrespectful to her tutor…often yelling at her and throwing things. When the tutor asks her how things were done in the classroom she will reply angrily, "I don't remember! It's been so long since I was in school"
We obviously don't condone the disrespectfulness from our daughter and are very upset with it. However, she is obviously hurting and upset with her situation. She wants to go to school but doesn't want to get sick…
I have thought about taking the tutor out of the equation and homeschooling her myself. That is uncharted territory and I'm worried she may eventually resent me as well. Not to mention, that option doesn't help with her anger about not going back to school. We don't know what the right path is at this point and we are just curious what other parents have done with their school aged children with CF??
My husband is active duty in the military and we recently moved to Maryland. It has not proven to be a very good move for our daughter because she has had 2 hospitalizations in 2 months. When we lived in Washington state, she could go a whole year without a tune-up. This past summer, we struggled with the idea of sending her to Kindergarten in public school. She had a tune-up right before the school year began and we sent her. She LOVED it. She is such a social and happy little girl. However, she couldn't shake any colds and ended up being admitted through the ER within a month of school starting. She had pneumonia is both lungs, labored breathing and losing weight. After the 3 weeks of nursing her back to health with IV meds and extra PT, we were forced to reconsider our decision to send her to Kindergarten in public school. I work from home part-time and we also have a 4 year old (without CF). We now keep Sydney home with the help of the Home and Hospital program(public school provides a tutor at home 6 hours a week). We still goes to gymnastics and a gym and art class at the Y to stay socialized and active. However, she is rebelling and angry at this point. She got a taste of public school and she is angry that she can't go back without getting sick. She is very disrespectful to her tutor…often yelling at her and throwing things. When the tutor asks her how things were done in the classroom she will reply angrily, "I don't remember! It's been so long since I was in school"
We obviously don't condone the disrespectfulness from our daughter and are very upset with it. However, she is obviously hurting and upset with her situation. She wants to go to school but doesn't want to get sick…
I have thought about taking the tutor out of the equation and homeschooling her myself. That is uncharted territory and I'm worried she may eventually resent me as well. Not to mention, that option doesn't help with her anger about not going back to school. We don't know what the right path is at this point and we are just curious what other parents have done with their school aged children with CF??
