Our sweet second born, Griffin, was diagnosed with CF on 3/3/22 at exactly 2 weeks old. This was an absolute shock with us having had no family history of it. The last 11 months, we have really developed an understanding for the disease and what it means for his future.
While donations to the CFF/our Great Strides team are so very much appreciated, your support means more than anything. We have been so fortunate to have wonderful family and friends (and especially our daycare staff who have been more than accommodating to us!) to help us through all this. I am sharing our life as it stands below, not for sympathy but so that everyone can understand what all goes into caring for a child with CF.
Griffin is pancreatic insufficient, which is a common issue with CF, but not something I think they general public knows about. In a healthy person, the pancreas secretes enzymes that are needed to digest fat and protein. Because he has PI, he requires enzyme replacement with Creon—every time he eats something with fat or protein. He was showing signs of this from the time he was born (which may be why he was so tiny at just under 6lbs). We started the enzymes at about 3.5 weeks old. Creon comes in capsules which have tiny beads inside. Since he can’t swallow pills, we dump the beads on applesauce. He started with one capsule per feed, and is now up to 6 capsules with each meal/bottle, sometimes only 2-4 if he eats a small snack. Right now for a big picture idea, he ends up using about 38 capsules every single day.
Because his lungs secrete so much more mucus than normal, we have to do chest physiotherapy (CPT) with him. This is a 20 minute session twice daily with him where we work to clear the various lung areas (4 spots on the front, 4 on the back, and 1 on either side) by patting/vibrating the spots. When he is sick, we increase this to 3-4 times a day. Once he turns two, he can be fitted for a vest that will shake/vibrate him and break up the mucus that way. Right now he uses albuterol only when sick; we are fortunate not to have to do any other daily breathing treatments with him, especially since he hates them.
Reflux is common in babies with CF, so Griffin takes Pepcid twice a day. He also is on a special vitamin that he takes 5 days a week (was every day but his levels at 6 months old looked so good we were able to cut out the weekend doses)—this is formulated to make it easier for him to absorb certain vitamins (A,D,E&K and iron). Probably the strangest thing to us was having to add salt to his diet. If you have kids, you probably know that when they are very young, salt has to be limited in their diets. Individuals with CF actually lose salt far more regularly than those without. Because of this, he gets 1/4 teaspoon of table salt every day, divided over his bottles/food.
1-2 times a year we will do blood work to check his vitamin levels. Starting this month, he will have an annual chest X-ray to monitor the appearance of his lungs (though unfortunately we have already had a handful thanks to various illnesses). He will also have breathing tests (PFTs) every 6 months which started this past fall. While he is young and cannot do the test on his own, he has to be sedated while they use a mask and some special chest huggers to do the test for him.
What we are anxiously awaiting is for him to be able to start a medication called Trikafta at 2. While it’s not a cure, it is a drug which helps to correct the abnormal gene that causes CF. We are very fortunate that Griffin has two copies of the most common gene mutation (DDF508) which will qualify him for this drug. Right now, it is on track to be approved by the FDA for the 2-5yo age group, and may be approved for the youngest before his second birthday.
Thank you for reading my novel. Griffin is turning into such a cool little guy and we are very hopeful that we can give him a great future.
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