26 inches
Aspen's lungs sound awesome!
70% percentile for both height and weight
"How is THIS possible?"
Such awesome words to hear from the doctor. So many smiles by all. So many grateful hearts for the progress that he has made. When we think back to Aspen's first CF visit... and to the words... "If we could just get him to the 10th percentile we will be happy" - we stand in AWE of God's mercy.
70th percentile! ! !
How awesome is that????
Ephesians 3:20-21
20 Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us, 21 to him be glory in the church and in Christ Jesus throughout all generations, for ever and ever! Amen.
He IS doing far more than we could have asked! We praise HIM!
Many people have asked how Aspen is "different" from other children...what medicines does he take?
http://www.cff.org/AboutCF/
CF affects the lungs and the digestive system. Each patient is different but following the care plan given is one of the best ways to give Aspen the best chance at being as healthy as possible. Lindsey and Chris have done such an amazing job of following his care plan.
Aspen's pancreas doesn't work at all. Praise the Lord that there is a medicine to help him digest his food. It's working as evidenced by him being in the 70th percentile. Aspen takes 4 enzyme capsules (poured into a teaspoon of applesauce) with every bottle of any type of food that he eats. The enzyme amount will change as he continues to gain weight.
A defective gene and its protein product cause the body to produce unusually thick, sticky mucus....
Aspen takes a breathing treatment in the morning and at night called "hypertonic saline."
Hypertonic saline is extra-salty water that is sterile, so there are no germs in it. Because CF airways are known to lack enough salt and water, hypertonic saline mist helps to clear the thick mucus from the lungs.
Aspen also takes a breathing treatment at night called Pulmozyme. This medicine also helps to thin mucus.
Aspen currently has normal lung function and the goal is to keep it that way as long as possible.... prayerfully and hopefully for life! God sees and God knows and our God is ABLE!
Aspen's immune system is no different than any other child's. He isn't contagious.... the BIG difference is his lungs and pancreas build up a thick mucus that cause a breeding ground for infections and when he gets sick, it CAN be much more serious than other children.
Another everyday treatment is known as “airway clearance.” Performed twice a day for approximately 30 minutes at a time, airway clearance requires that the person with CF do special mucus clearance or breathing exercises.
One of the most important things a child with CF can do to stay healthy is to minimize exposure to germs and harmful bacteria. Frequent hand hygiene, which includes washing one’s hands with soap and water and/or using alcohol-based hand gel, is best.
http://www.cff.org/LivingWithCF/AtSchool/TeachersGuide/
The things that will be important for Aspen as he grows:
* Consume 1 1/2 times the number of normal calories normally required
* Stay away from sick people or large crowds. Aspen isn't allowed to go to day care or church nursery because of this for the first few years of his life.
* He will require and need extra salt (he takes 1/4 tsp in his bottles).
* Exercise! Exercise! Exercise... anything to move the mucus in his lungs around.
* Take his medicines, breathing treatments and airway clearance EVERY day.
* Nutrition! Nutrition! Nutrition... what a GOD thing that Lindsey is majoring in Nutrition. A coincidence... we don't think so. It's another GOD thing in this journey of ours.
With new medications and better care, people with CF are living longer, healthier lives. More people with CF are attending school, graduating and pursuing careers. People with CF have chosen to become doctors, lawyers, teachers, health care workers, electricians, and even race car drivers.
Aspen is perfect in EVERY other way. He is SO precious. We don't want CF to define who he is. He's a normal baby with a unique "mutation." We are praying every day for a cure. There are some promising medicines in the works. We are hopeful that as we raise awareness and research continues that there will be a CURE in the near future.
Aspen already loves the outdoors. He loved hanging in the ENO with his Pops!
He loves swimming. He was a "natural" at it.
Aspen and his new buddy, Claire! We couldn't be MORE grateful that Claire's Mom, Mattie, is keeping Aspen two days a week. What a HUGE, HUGE answer to prayer. I can't think of a better person to help with his care. Dee Dee keeps Aspen the other two days :) that Lindsey is at school. Our hearts are SO grateful for her willingness.
Such a HAPPY, sweet and precious baby Aspen is!
We would appreciate your prayers for Aspen and for a CURE for this disease. This fall/winter season is a little scary to us. The doctor's instill fear in us because of the flu season. We know that God wouldn't have us live in fear about the "what-ifs". We know that God desires us to trust in Him. We are choosing to do that and praying for a healthy "flu season" for this sweet baby.
Isaiah 41:13:
"For I am the LORD, your God, who takes hold of your right hand and says to you, Do not fear; I will help you."
There is a drug being researched right NOW that could potentially help Aspen. We would appreciate your prayers for the researchers of this trial.
Words can't express how grateful we are to all of our friends and family for their constant love, prayer and words of encouragement. We love you all!
No comments:
Post a Comment