Preparation for the battle

God has been so good and prayers have been answered.  Grayson has a team of medical professionals that will journey with us throughout his life to see that he gets the very best and latest care.  Just to name a few-Dr. Black, who is on the board for the Cystic Fibrosis Foundation, a CF nurse who is available 24/7, a dietitian, a lung therapist, and a social worker who is an advocate for Grayson in so many areas.

We are encouraged just knowing that so much is being done to find a cure for Cystic Fibrosis.  So many of you are asking about fund raisers and I’ll do my best to keep you posted on those.  I do know that May is Cystic Fibrosis month and during that time, there is a walk for the cure in Charlotte.  I’ll be there with my walking shoes on and I would love for you to join me!  We appreciate so much your support and prayers.

Cystic Fibrosis has come so far over the years.  It appears that Grayson has more of the digestive part of CF versus the lung involvement.  They will begin treating his lungs though just to assure prolonged good health.  Grayson’s body doesn’t absorb fat like yours and mine.  He has to take enzymes before each meal that will aid in the digestion of his food.  We can already see that he is less hungry than he was before the medication was started.  What an answer to prayer just seeing him feel satisfied.  I can’t imagine the hunger feeling he has felt for 5 years.

Along with the enzymes, he is using a bronchial dilator.  This opens up his bronchial tubes so that the salt water nebulizer that he uses will penetrate his little body.  Having CF, your body expels any salt that it takes in.  When I kiss him…he has a precious salty taste.  I think of him as my beach bum.  You know how we all taste and feel after being on the beach for a while…that’s my Grayson!

He also has a “shaking vest”.  What a God send this thing is!  Before, twice daily, he had to be manually whopped on his back, down his sides and on his front side for 30 minutes  to keep any mucous that might build up in his lungs to break loose and move on through his body.  CF children have thickening of mucous and the very worse thing to have happen is for this mucous to build up, which can lead to pneumonia and other complications.  Now, this wonderful little vest inflates and strategically shakes his chest, sides and back for us, again 2 times a day for 30 minutes.

Grayson sees his team of professionals every 3 months for evaluation.  So far, he has handled it like a champ!  He understands that God made his body a little different than most others and some of his body parts just do not work.

Thank you for all of your encouragement and prayers.  It’s going to take a village to raise this little guy!