In May, there will be a walk called Great Strides that will benefit Cystic Fibrosis. The money raised will go to funding research to cure Cystic Fibrosis. We will be participating for Jax. You can purchase a shirt , all profits from the shirt will go to the Cystic Fibrosis Foundation or you can donate on Jaxs Great Stride page. :)
Having Jax has been the biggest and best blessing in Beau & my life. We have continued to see God bless Jax and us the past year and half. At the CF Clinic we visit regularly for appointments, check ups, etc. they call Jax the guinea pig. He has two of the most common but also most severe mutations of cf. His health is exceeding the expectations of what they see in most children with cystic fibrosis. One characteristic of cf is a difficulty gaining weight. When Jax was born 5 weeks early, his size/weight was not even on the growth chart. Getting his weight up to the 50th percentile (where cf doctors at least like to see their patients) seemed like a daunting task. Every visit they could not believe the weight Jax would put on. God has blessed Jax with now being in the 95th percentile for height & weight for his age!
Some of the medicine that Jax would take on a daily basis was vitamin d , the nastiest multi vitamin EVER, three Creon capsules before each and every meal / snack, prevacid, and Kalydico twice a day. Twice a day he has to complete a treatment where he uses a breathing machine for hypertonic saline, and pulmozine. He uses an inhaler for albuterol and a vest that shakes you like a rag doll. All of these are preventative methods to keep him from getting sick. When he does get sick we have to increase the amount of times we do the treatments a day. The technology and medicine available to cf patients is such a blessing to help them live longer, fuller lives. As Jax gained weight, the amount of creon capsules would also increase . By the time he was one, he was taking 3 capsules before meals, 2 before snacks. In a days time, that is ALOT of pills for a child to take, especially when they eat all day. Around Thanksgiving, doctors noticed that he was taking a very low dose of creon and not showing any signs of needing to increase. They decided to do something they have never done before: ween him off creon. Tests were continually done during the weening off process to make sure he didn't react & to God be the Glory, JAX IS 100% OFF CREON!!! The doctors couldn't believe it. Because of it, they further tested him and removed him off more meds, now the only meds Jax takes a day are vitamin D and Kalydico, along with his breathing and vest treatments. This was huge for us to not have to force nasty meds down our child's mouth! The doctors can't believe it , they had Jax retake tests multiple times, but we know that it is God who has placed his hand on Jax.
Unlike Jax, many CF patients struggle daily with their health and many parents struggle daily with getting their children to take the medicine and to do the treatments. We have been blessed with the CHOA CF clinic who has the most spectacular staff. It is our hope that we can raise money for the CF Foundation to further fund research that will benefit Jax and everyone else in this world who battles CF. The Lord has blessed us and I pray the Lord can bless others through research and medical breakthroughs.
