Today we meet with nine year old identical twins Caleb and Kaden. They both have CF, DDF508, and Tourettes syndrome, and anxiety, and OCD. They were born and raised in Indianapolis Indiana. Their favorite things to do are playing their Xbox, jumping on the trampoline, playing with action figures, and swimming.
Caleb and Kaden have two other siblings, Melanie is 15 and she has type one diabetes and juvenile rheumatoid arthritis and growth hormone deficiency and Natalie that is 14 and she is healthy and keeps everyone laughing.
The boys were both diagnosed at the newborn screening. Their mom delivered them at community East Hospital at 36 weeks vaginally. Caleb came first weighing in at 7 lbs 1oz and then Kaden was stuck further up so it took 58 minutes to get him out. When he came out he was gray, purple and had the umbilical cord around his neck. He also had some respiratory issues but weighed 6 lbs 10oz. Both boys were taken to the NICU and they put a NG tube in Kaden because he was jaundiced and not eating much. They said they would have to keep him a little longer. Caleb also had to stay longer because the staff was tracking his food intake wrong and he needed a NG tube placed as well. Both were on bilirubin lights for jaundice.
At 13 days old they got a call at 6am from the boys pcp explaining their diagnosis of Cystic Fibrosis. Shortly after that they met with different doctors about their diagnosis. They were in shock because nobody had mentioned that anything was wrong with the boys. So they rushed to the hospital and demanded to know what was going on.
“It was a lot of work especially since Brandon was at work from usually 8/9am -7-9pm, the girls were only 4 and 5 at the time and Melanie had just got diagnosed with her diabetes on July 24 of 09 so I was still new to that so it was a lot but I knew we had to do it and we could do whatever it took. And we did.”– Elizabeth Bennett (Caleb & Kaden’s Mom)
- They get their vest and nebulizers (albuterol inhalers/sodium chloride/pulmozyme) then their steroid inhalers and nose spray.
- They eat breakfast, brush their teeth and get dressed and goto school.
Their daily routine starts at 5:30 am.
- At school they get their acapella at 10 am and 2 pm, have lunch at 12:30pm.
- The boys mom goes to lunch with them everyday because they have sensory issues. If it’s too loud in the cafeteria and they won’t eat which makes them sick.
- They get a snack and milk at school at 10 am with their acapella and inhaler and then at 2 pm they get a milk with their acapella and inhaler and then they get off the bus at 3:05
- Come home wash their hands and do their homework
- Then they get their vest. They shower, eat dinner and get their vest again with their nebulizers (albuterol inhalers/sodium chloride/pulmozyme) then their steroid inhalers and nose spray and then they do their sinus irrigation rinse before bed.
They have had many problems with medications being filled due to Medicaid changing their policies. United Healthcare did try to get them in a counseling session for their tics for Tourettes and neither of their insurances would cover that. It can get very frustrating. The boys both have problems with their sinuses and they have had cultured pseudomonas quite a few times in just their short life.
“They have a lot of GI issues and I so wish they were 12 so they were able to start taking trikafta. They are on orkambi now. But I want them to be able to live forever like everyone else. They want to be able to have a gaming computer so they can be pro gamers and I think it’s so awesome. They think they are part of the police department. They are so amazing and they are so grateful for everything and don’t take anything for granted.”-Elizabeth Bennett
Thank you Caleb and Kaden for Sharing your story with us today! You two truly inspire!
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