After the first full day of school, this was how he responded when I came to pick him up
I had to pry his little hands off the playground in order to get him home.
Of course we are concerned about germs from the other kids making him sick, and we worry about whether his teachers will give him his enzymes correctly before snack, but at this stage, when he's becoming so interested in other kids and clearly needs more than what we can give him at home, we feel like the risks are worth the benefits. Ask me how I'm feeling about that balance come winter. In any case, we wrote up a letter to his teachers and the parents of his classmates explaining his condition and asking for their support in keeping him as healthy as we can through the school year. I put the text of the letter at the bottom of this week's post in case it may be of use to any of our fellow CF parents who follow the blog
The other highlight of this week was a wonderful visit from Uncle Jared and Auntie Lauren. They had a blast with Lemon and Lime. They gave Lemon a belated birthday present that he absolutely loved.
Dear Tera, Cherie, and fellow Room 3 parents,
We are looking forward to sharing a fun-filled school year with all of you. As we begin this new adventure together, we wanted to make you aware of the fact that our son, Lemon, has a genetic disease called cystic fibrosis (CF). This disease primarily affects the lungs and digestive system—aside from these issues, Lemon is a completely normal two year old. Because this is a genetic disease, it is not contagious and poses absolutely no risk to your children. However, it does cause some issues for Lemon that we would like all of you to be aware of, and we hope you will all become our partners in keeping Lemon as healthy as possible throughout the school year.
CF: The basics.
People with cystic fibrosis produce mucus that is much thicker and sticker than normal. This causes two major types of problems. First, it blocks the ducts that connect the pancreas to the intestines. That means that the digestive enzymes made by the pancreas can’t reach the intestine to digest food. Second, the thick mucus in the lungs makes people with CF very susceptible to respiratory infections. Because of these two types of problems, kids with CF used to survive for only a few years. However, thanks to tremendous medical advances in the last few decades, people with CF now live into middle-age and beyond. For more basic information on CF, please don’t hesitate to ask us or visit the Cystic Fibrosis Foundation at cff.org.
Lemon’s digestive issues
1. Lemon needs to take supplemental pancreatic digestive enzymes every time he eats to help him digest his food. The enzymes come packaged in tiny white beads, and will be given to him by Tera or Cherie in a spoonful of applesauce prior to snack.
2. Because Lemon has trouble digesting his food, he needs to eat a very high calorie diet in order to get enough nutrition to support his weight gain and development. We will be providing him with whole milk or high-calorie shakes to drink at snack time instead of low fat milk, so that he can get the calories he needs to get through the school day.
3. People with CF become dehydrated very easily. Especially in hot weather, Lemon will need to drink a lot of water. We will provide him with a water cup to drink out of.
Lemon’s lung issues
1. Lemon spends over an hour every day at home doing therapies to keep his lungs clear. This includes medication that he has to breathe through a nebulizer, and treatments with a special vibrating vest that help to break up the mucus in his lungs. These therapies help to prevent him from developing lung infections.
2. Even with these treatments, Lemon is extremely susceptible to lung infections. Even “normal” colds are very severe for him, often requiring antibiotics and possibly even hospitalization. Because of this, the single most important thing you can do to help Lemon is to prevent the spread of germs in the classroom. Please be sure to follow the school’s sickness policy—if at all possible, please err on the side of caution when making a determination about sending a child who might be sick or contagious to school. Also, please support Tera and Cherie in their efforts to teach our children good hand hygiene. We know that Lemon will get sick this winter and will probably have to miss a lot of school as a result, but anything we can do to minimize the number of times he is sick, and to give him time between illnesses to recover, will be extremely helpful to him.
3. People with CF are susceptible to lung infections that are not a risk for people with normal lungs, and they can pass these infections to each other. Therefore, it is extremely important that unrelated people with CF are never in the same room together. We are not aware of any other children with CF enrolled at the Meeting House this year. However, if you become aware that another child with CF is enrolled, please let us know so that we can work with the other family to develop a plan to protect our children.
Except for the things noted above, Lemon is an entirely normal two year old, and should be treated just like all of his new friends. Because he is so young, he is not yet aware that he has CF. We hope you will support our efforts to gradually build his knowledge about himself and the ways in which he is different from other children in a way that is honest, sensitive, and developmentally appropriate (“He has to take medicine with his food so that he doesn’t get a stomach ache.”).
Thank you for partnering with us to care for Lemon. Please don’t hesitate to reach out to us if we can answer any questions. We look forward to getting to know you and your children, and hope that we all have a fun and healthy school year!