I realize we are just getting started helping our children and family as a whole unit live and succeed with chronic disease. We have definitely had more experiences in the hospital and at the doctors than an average family, but know there are other families that absolutely have had more experience than us. Watching each of our infants experience at some point an extended hospitalization left us feeling confused, afraid, lost, guilty, and often very angry. In the beginning I remember a toe to toe nose to nose discussion with one pulmonologist on call one day in the hospital with my 7 month old son (who heart breakingingly screamed bloody murder through every IV). The pulmonologist told me to “get used to this mom, you have to get used to this, you have children with a chronic disease you need to expect weeks in the hospital.” I was furious. I told her I refused to accept the hospital as normal and I refused to quit asking to go home as soon as we could as often as I could. She never came back to our room, and I never saw her again. She asked another pulmonologist to handle us (lets be honest me). I think I would like to let her know now that I apologize and I understand. I’m not happy about it, and it still feel angry about it a lot of the time but I understand that being intermittently hospitalized is part of my children’s life. We also understand that our emotions are second to helping our kids do their best to prevail with positivity and hope. Our attitude will be mirrored and magnified in them especially if it’s a negative one.

Monday, March 9, 2015

High fat, I've been practicing for years!

People with Cystic Fibrosis have a very different nutritional goal than someone who does not have CF. Clearly a balanced diet is important for everyone's body and certain vitamins and essential nutrients remain essential, but the body of someone with CF experiences malabsorbtion at a very high rate. Because of this a CF person's nutritional goal is high fat and high protein. They need meals and snacks with a calorie PUNCH. Maelee loves whole milk. We buy half & half to add to her whole milk to give her the calorie punch she needs. Orson is our vegetable man so I always make sure he has ranch dressing or sour cream to eat his veggies with. When the kids were little enough (now I can't get away with it) to not notice I would add oil to their orange juice in the morning to give them a little calorie punch. We know other parents with CF teenagers who have super active kids and are participating in sports to benefit their lung function who have to consumer 10,000 calories a day to keep their body at a healthy weight.

This all being said my kids came to the right place! I love to bake and now can just skip the margarine and applesauce low fat replacement recipes and go straight for the cream cheese extra's and caramel sauce. Clearly I cannot consume the amount of these treats that I hope my kids do (sometimes I do though, woops) but the point is I have had kitchen role-models to follow that have showed me how to make some awesome stuff. So the answer we give is "YES! You absolutely can have a second slice of cake! Good job buddy!"

------Side note of further enzyme explanation-----------

A CF pancreas is blocked from releasing natural enzymes by their thick CF mucus so they take prescription enzymes to aid in more of a normal digestion process. Still though the enzymes they take when they eat do not make up 100% for the bodies lack of natural enzyme release.

The amount of enzymes a CF person needs is calculated by their age, weight, and other growth factors combined with any malabsorbtion symptoms they are experiencing (pain, BM issues, etc). Adults with CF can even get to a point that they "max out" with the amount of enzymes they need compared to how many is safe for them to take.

So even though a CF person takes enzymes their stomach is often sore and hurting. Knowing that their digestive process would never be 100% comfortable I am exceptionally sensitive to when the kids say their stomachs are bothering them. The kids talk about their stomachs hurting often. I hate it because I can't see it to fix it. It's not a skinned knee or a sore ear, I can't get an antibiotic for it - it just hurts because that is how their body feels even when it is doing its best to function.

  
Posted by at

No comments:

Post a Comment

Subscribe to: Post Comments (Atom)