Monday, September 16, 2013

70th percentile on Aspen's 5 month visit - Praise, praise, PRAISE!

17. 3 pounds

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! 




June, July and August... What an awesome summer this has been!

We are so grateful for the summer that we had. Aspen was in the hospital from April 1 until May 9. We feel like we missed spring. When he came home, he was at the ER 3 times in the month of May.

In June... we feel like we were "normal" again. Aspen was able to start getting out some and what a blessed summer it has been. This blog was just started in September, but I can't resist sharing some pictures to show how Aspen has grown and to give glory to GOD for all the many things and ways He has worked in Aspen's life this summer.

 Aspen at his 3 month visit to the CF clinic. We was in the 50th percentile. We were SO grateful. It's hard to believe at his first visit that he wasn't even "on" the chart.



This face is HILARIOUS!



Father's Day 2013.... Aspen's first time in the pool! 




Papa, Danny and Aspen... 3 generations! 




 How sweet is this!





Aspen is 3 months old! Look how much weight he has gained! It's amazing! 







Happy 4th of JULY! 




Aspen after his first ALL day excursion with me and his Mommy! :)
 He was sad! How cute is this???



Aspen back at Egleston at his 4 month CF appointment.
Happy 4 months Aspen! He's shouting HORRAY!!! :)





Aspen and his big boy jeans!

Playing around with his Dee Dee




Loving on his Granny!


Playing with his Grandma Hazel. Aspen is blessed to have 2 great grandmothers.

Getting some Papa love! 



Aspen is so cool in his shades! :) Going on a walk with his Mommy!
Our little ray of sunshine! 




Happy 5 months sweet baby! 








Aspen loving on his Pooh! :)


He sure does love his Mommy! He's going to be an "outdoors" little guy. We can already tell.







Hanging out at the pool!




















Look how far Aspen has come! This is actually from birth, March 29th... until the 4th of July. God is showing us HE is able to do more than we could "ever ask or imagine" (Ephesians 3:20-21).


Join us as we continue to pray that Aspen will WOW the doctors.

Saturday, September 14, 2013

CF Clinic Appointments... There's nothing like it! ;)

Wham! Welcome to the world of CF. That's what the first appointment to the CF Clinic felt like. It was overwhelming and tiring. The first appointment took around 4 hours. But, I will say... this was the most people we have ever seen in ONE doctor visit. LOL

Aspen will have to go to the CF Clinic once a month until he is 6 months of age and then every 2 months until he is a year old and then every 3 months after that.

They take you into a room and people are in and out for hours. We see a nurse, nutritionist, social worker, research coordinators, two doctors and more. We were quickly told that if we didn't bring him every month, DEFACS would be called. Well now! Let's first assume that we WILL be there before saying something like that. LOL

The nurses are all nice but it's a long drawn out process. We are SO grateful to have heard such comments as "He looks awesome", "His chest sounds clear", "How is this possible" (referring to his weight gain) and smiles galore.

We're grateful to have these resources and to have doctors that are researching not only children with CF but babies with CF.

As of September, 2013... Aspen was in the 75th percentile for his weight and height. To think back to him not even being ON the chart... we are amazed! The doctors told us they would be happy if he could get to the 10-25th percentile. WOW! How God has answered prayers!

HOW AMAZING IS THAT?  A GOD THING! 


We are so thankful that the CF Clinic moved down the road to a much better location. :) 


Cystic Fibrosis Walk - Walking for a CURE

May 18th, we participated in our first CYSTIC FIBROSIS walk. We raised $1,800 from all of our wonderful and supportive friends. We had a great turn-out and were so encouraged. Because Aspen wasn't released from the hospital until May 9th... we really didn't have too much time to prepare but God was so good.


It felt so good to be outside... and to be walking for a cause so close to our hearts!

We had a great time... we even did a little photo "bombing". :)


So thankful for our family!



Friends are a blessing!








We saw Ken Cook take his rain jacket off and we knew we weren't going to get TOOO wet.  So thankful for good friends and their support and laughter! :)


Lindsey and Chris sure do love their baby boy. A precious new family!


Papa Thomason walked the entire 3 miles with us! We were SO glad.



Most of the group! We felt so loved and supported. Thank you ALL so much!