Summer months are so much fun. Long daylight hours. Warm temperatures. Flip flops and shorts. I always love the cooler temperatures when they come but I'm beginning to love all that summer has to offer, in spite of the humidity. Before Aspen was born, I didn't think as much about catching a cold or flu season. Having a sweet grandchild with Cystic Fibrosis will remind you what's good about the summer months and for our family….that means less chance to "catch" something. We're so grateful that Aspen has done so well this month!
June has been a busy month; Danny and I traveled a lot during this time. I sure did miss seeing this sweet face and the face of the rest of my family.
Lindsey graduated in May and has been "off" enjoying the summer. Who knows… this might be her last summer, for a while anyway, to enjoy time with Aspen and her mother :) …. so we sure are enjoying our time together.
It seems like something changes with Aspen every day. He has 6 teeth now. We don't know how much he weighs because….PRAISE….he hasn't seen a doctor since his last CF visit in early May. He's not scheduled to go back until early August. I must admit that we are all getting used to how "healthy" Aspen is. We're praising the Lord that he hasn't been sick and hasn't been back in the hospital.
Aspen's personality couldn't be any cuter. He's fun, outgoing, hilarious, fearless, adventurous, easy-going and keeps us all laughing. His vocabulary has exploded this month. This is the first month where he's repeated so much of what we say. He says "thanks" when you give him something he wants. He says "more" when he's not done with something or simply wants more. :) He says so many new things, it's hard to name them all but to name a few… cool, hat, six, thanks, more, dog, goat, coke (even though he does NOT drink it….ha). He says many more things but my personal favorite is, "Dee Dee". He doesn't just say, "Dee Dee". He says it with such excitement and repeats it over and over as I say…ASPEN….! back to him. He warms my heart and fills it with such happiness. He loves his Mama something fierce… Only she will do when he's upset or really tired. He loves his Daddy in such a sweet way. Chris can make Aspen laugh like no other. Chris gets Aspen to laugh down to his "belly." The cutest laugh and sound in the world. Aspen loves to turn the lights on and off. He loves to turn the light to the fan on and off too and the TV on and off as well. He loves Bow Valley and isn't afraid of her on any level. I'm always amazed how tough he is. He never stops. You can see the wheels turning in his head constantly. He's inquisitive and always picking up and copying what you are doing. He is the sweetest and he is FIFTEEN months old. How can that be???
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| He is fearless… I think he gets that from all the fun he has with his Daddy! |
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Lindsey and Chris are going to be in trouble when he asks to have his very own dog! :)  |
Playing outside with Bow and on his swing are two of his favorite things…
His personality makes you want to squeeze him! He has so many facial expressions! :)
These faces will melt your heart….
Aspen is a future corn-hole player! :)
This face!!! Precious! He doesn't sleep very much in his car seat but this day he was pooped!
Aspen is so blessed to have his own personal nutritionist. :) He loves avocado. He wants to do everything himself these days, including using his spoon to feed himself.
Aspen and Lindsey went with us to take Bow Valley to the doctor. He is so patient while she bites his fingers! :)
We were gone on Father's day so we celebrated a week late. Aspen loves the pool. This is my favorite little family! :)
He has the sweetest looks and the best kisses!
If this face doesn't make you want to push for a CURE… I don't know what will.
Lindsey and Chris hit a new "milestone." Aspen sat through his breathing treatment AND his vest chest therapy and didn't make a peep. He amazes me how patient and sweet he is. Sitting with this vibrating vest for 30 minutes in the morning and again at night is a long time for this little guy.
June was an exciting month in RESEARCH!
Ivacaftor was approved by the FDA as a stand-alone drug for people with the G551D mutation in 2012, and eligibility for the drug was expanded to people with several other closely related mutations in February 2014.
Dr. Beall continued: “Kalydeco's approval was the essential first step in treating the underlying defect in CF; now, with this promising drug combination, we are taking another critical step forward in making sure that all people with CF have effective treatments, regardless of their mutation. We will not rest until we reach that goal.
http://www.cff.org/aboutCFFoundation/NewsEvents/2014NewsArchive/6-24-Vertex-Phase-3-Results-Lumacaftor-Ivacaftor.cfm
With this promising new drug combination that showed significant results… this could be the answer that as much as 50% of the CF population is looking for. While Aspen doesn't have two copies of the Delta F508 mutation, he DOES have one copy and research is advancing every day. We are grateful for the progress that is being made!
It would be so easy to complain about Cystic Fibrosis. It would be so easy to complain about the time that goes into it and so much more. It's a time consuming disease.
BUT….
God always reminds us to THANK HIM for the troubles we don't have. Thank you Lord for our homes, for insurance, for doctors that care. We choose to focus on the fact that doctors started testing ALL newborns in 2008. If that weren't the case, Aspen could possibly not be getting the early treatment that he is currently receiving. We choose to focus on the fact that insurance covers this vest that allows the mucus in Aspen's lungs to "move" and therefore helps to prevent infections. There are so many things to be thankful for.
But happiness is different than JOY. We are thankful for the JOY that can only come from the Lord despite our circumstances.
Joy comes when we continually praise what God has already done.
For you make me glad by your deeds, Lord; I sing for joy at what your hands have done. How great are your works, Lord, how profound your thoughts!- Psalm 92:4-5 (NIV)
Not only does reflection fill us with joy, it makes us glad. But Psalm 126 adds the dimension of joyous laughter.
The Lord has done great things! Praise His name!Our mouths were filled with laughter, our tongues with songs of joy. Then it was said among the nations, “The Lord has done great things for them.” The Lord has done great things for us, and we are filled with joy. - Psalm 126:2-3(NIV)
Happy, HAPPY 15th month birthday, sweet Aspen! We all love you more than words can say….
We are praying:
1. For Aspen to have another healthy month
2. For Aspen's splicing mutation to be a "mild" form
3. For the mucus in Aspen's lung to improve or not change
4. For researchers that are making progress towards a cure/medicine for Aspen's mutations
5. For Aspen to grow accustom to his treatments
6. For Aspen's brother or sister to be born healthy
Thank you for continuing to pray for sweet, Aspen!!!!
