*** If you would like to donate to help FIGHT CF - this is the link:
https://fightcf.cff.org/site/TR/GreatStrides/40_Georgia_Atlanta?px=3724294&pg=personal&fr_id=7914&fbclid=IwAR2dmJeDouAvMP9WLqolgFydrGUwDX7mOIz64KsXF-n6EXefYOvH1PcMB14
Happy 6 years and 11 months. It's your final month as a 6 year old. GASP! You are growing so quickly and my heart isn't ready. You are fun and silly, yet you can be sensitive and analytical. You have a big heart and are fiercely independent. You love to be "one of the guys!" You love to HELP your Dad and Pops when they are working. You still love you some Chipotle (we're getting one in Loganville), milkshakes, fruit roll-ups, chicken wings and pizza. You love chase, anything with a ball and anything with water! :) You love to hike and often ask to go and get upset if you know I went without you. :) Your favorite friend at school is Ella. You like your teacher, Mrs. Strickland and think it's the perfect class if two girls weren't in there. LOL You love reading and have grown so much. You told me you love reading so much because it helps you get better and better every day. SO grateful for that. Your teacher tells your Mommy that she wished all of the kids in class were as good as you are. We are very proud of you!
You had a great month and were heavily involved with the CF Foundation. We made a video for "Insure the Cure" where you are one of the ambassadors - faces! One of the questions for the video was "What is it like to have CF?" You answered... "it's fun because I get to make these videos and have my picture taken!" I know you don't understand much about all of this but one day you will. One day, I pray you will look back and see how hard your Dee Dee FOUGHT for you... fought for an end to CF!
I'm so grateful that God made you with JUST the right personality to fight this disease.
You love for Dee Dee to scratch your back!
Mommy and I came to have lunch with you...
Your teacher was supposed to be sending you to clinic to get your enzymes before your class left for lunch but she kept forgetting. You would have to leave the line and go to the clinic to get your medicine. That happened this day. You were pretty upset about it too. In fact, you didn't even want us looking at you. :( We later discovered it was because you wanted to sit with Ella. You wanted us to meet Ella and getting out of line messed that up for you. It broke this Dee Dee's heart. Your Mommy arranged for you to start going by the clinic AFTER lunch and that's working out much better.
February has been an extremely WET month and broke several records. We didn't get to play outside much.
You have started "putting away" the food!
Pops and your Daddy are building our deck. You want to help SO badly. You did help with the demolition process. :)
It's not raining and it's not freezing! That didn't happen much this month!
I'm so proud of you and your dedication to helping your Dee Dee help YOU!
We have played in the backyard more than usual because they have been building the deck all month.
Dee Dee was having a green apple and almond butter. You LOVE apples but wanted to try the almond butter. I told you, you probably wouldn't like it but wanted you to find out for yourself. I had my camera ready to capture the "almond butter" moment. LOL - NOT a fan! ha!
You love to draw and you're really good at it!
Dee Dee and Pops received an award for "Outstanding CF Advocates!" We were pleased to go to a dinner in Buckhead to receive our award. We are with Mary Dwight from the CFF home office in Maryland.
You LOVE playing with your Dad !
It snowed! And the weather people didn't predict it! Bennett had the flu and y'all couldn't play outside long but it was fun to see the HUGE flakes coming down and to play for a minute.
I LOVE that you two can run up the hill to see me!
Your little snowman! You loved him! :)
You still love a good game and you are as competitive as ever! You really don't like losing but are learning that it's going to happen from time to time! :)
The Cystic Fibrosis Foundation Georgia Chapter asked Pops and I to go to Washington to advocate on your behalf and all those with CF.
I love that you still pick me flowers... especially then the daffodils begin to pop out in February.
You love to draw and to cut. You wanted to make your Mommy a Valentine's Day card.
You couldn't wait to give it to her!
Your Mommy is the best! She stops by after school and lets me see your excitement after school. You traded Valentine's Day cards!
You got two special candy grams. I can't even remember who the 2nd one was from but your favorite one was from Ella. She said you were her crush! LOL This Dee Dee isn't ready for that and think's you can date when you are 21. :)
You've had so much fun with the big red balls you got for Christmas!
Dee Dee made you two a heart basket!
I gave this shirt to Bennett but he quickly said he didn't want it but YOU did! You love getting clothes and buying clothes! And shoes! :)
You put all of your candy together in one tin heart! TOO cute....
We had a plumber out all week and he replaced ALL the pipes in the house. SOOOO hard. He was supposed to be finished by Valentine's but instead he worked until 9:30pm and still wasn't finished. You were so interested in the holes in the ceiling.
Thankfully Valentine's Day was beautiful and we could play outside!
On Valentine's Day afternoon... you had Ella come over to get her birthday present. You were sick and couldn't go to her party. You got a 102 fever that lasted only a few hours!
You two played well for over an hour...
I picked you up from school and it was too cold to go outside. You wanted to read. YES!!!!
You've made friends with the little boy next door who is 7. His name is Sam. He found this portion of a deer skull and gave it to you. A little bit later he asked you for $10 for it. We had a great lesson that day in learning what is right and what is wrong and how to think these things through. I'm glad you have a neighbor you can play with.
We went to Walmart with your Mommy and you saw a cactus. You REALLY wanted one.
You have to push the cart now....wherever we go. We went to Aldi.
Silly face time!
Your Mommy let you take the day off from school and we went to Roswell to speak to some insurance companies about YOU! This was the first event you have been to in person - other than our Great Strides walk, obviously. I didn't think about you coming when I wrote out what I planned to say. I didn't think about what the "story" would be from Insure the Cure. Your Mom did and we made a few adjustments. We weren't sure if you were ready to hear that "CF used to be a death sentence and children born in 1955, when the Foundation was formed, rarely lived to go to elementary school. We know the day is coming and you'll be one to have a LOT of questions. I am praying for just the right time and words to be shared. I'm praying you won't ever have to struggle just to breathe. I'm praying for Trikafta to work profoundly in you with no side effects. I'm praying for a CURE!
Watching the ladies set up for the lunch!
The company is competing between you and Adalyn. Only one of you could go to the kick-off those because of cross contamination between germs.
I'm so proud of you for being willing to go in front of these people to speak!
You didn't want to eat the lunch we were served. You wanted to go to Chipotle. :)
Dee Dee bought you some new Nike's this month. You REALLY wanted some that tied because you know how to tie now. :) We found you some tie-died ones and you were so excited to show your Dad!
Our basement is all torn up too so we ate dinner in the floor!
Another deck day but the day started out so cold you found pieces of ice in the yard!
I LOVE you!
Wanting to build SOOOO badly!
I love to see the three of you in the halls of the church...
We went back to Lake Lanier since we had a really cheap Groupon! We missed this the last time we were there. Dee Dee HAD to try to run across.
OOPS! Look at your face! hahahaha
We screamed and had so much fun!
You were determined to get better at ice skating and you DID!
You got a headache on the swing. I'm so glad it got better!
Mommy, Daddy, you and Bennett coming down!
You love playing in the snow!
You can put away some funnel cake! :)
Super fast slide...
This will forever be one of my favorite laughs! The man that worked there told me I needed to lift my legs up in the air when I came down. I thought he was serious so I did. That made me FLY down and I turned sideways. As I did... I "clothes-lined" you! Look at your face! You fell straight down and didn't know what hit you. I knew my leg hurt but had no idea either. We laughed for days!
Thankfully everyone was OK and we went to Frontera's for dinner!
You love to pull the cheese out of a mozzarella stick!
SILLY!
Finally the day for Pops and I to head to Washington, DC to meet with our lawmakers!
I.CAN.NOT.WAIT!
Our hotel was about 1/2 mile to the White House. We booked it down there just to take a picture and run back! :)
During our training, we saw this picture of us last year. We were meeting with Representative Jody Hice.
Your official picture I took to take to Washington. SO handsome.
When you realized I wasn't coming home from D.C. but going straight from the airport to our ladies retreat in Dillard, GA with your Mom!
Pops and I had a few minutes to think about what we were doing. We got a little emotional. Pops got emotional when he saw how much time I put into trying to help you. He's more of a "natural" at talking to these people but my passion is so big for you! We truly want to be a part of making a difference in your life so you can get married and have a family and fulfill your dreams.
On the way to Capitol Hill to talk about YOU with lawmakers and their staff. We met with Representative Lucy McBath, Congressman Jody Hice, Congressman Drew Ferguson, Senator Loeffler and 2 other staff offices.
Representative Lucy McBath
Walking the halls of the House building
We weren't set to meet with Representative Drew Ferguson but he was in his office.
A cold, windy but beautiful day at the Capitol!
Senator Loeffler
We missed our picture with Jody Hice
All 50 states were represented on the Hill on 2-27-2020. This is everyone before we stormed the Hill!
Dee Dee and Pops brought you home a Air Force One plane to build - Legos. You built it with Pops while Mommy and I went to a retreat in Dillard, GA!
We're heavy into the fundraising season and people are beginning to donate. It always blows this Dee Dee's mind when people will give $$$ when they don't really have it but care so deeply and then people that have it don't give. Dee Dee has to turn this next couple of month's over to the Lord and tell Him to "take it" from me because I get overwhelmed with people that are friends don't give and people that aren't really "friends" don't. I don't know how anyone hears your story, sees your sweet face and can't give up a cup of coffee to help you #breatheeasy ! It is my prayer that hearts will be softened this month - your birthday month - and they will give.
You four had guys night at Frontera....
and had a fire!
We came home from the retreat to find you four waiting for us in the driveway. OH.MY.HEART!
SO excited to have your airplanes from Washington.
Aspen sandwich! Your Daddy loves your Mommy so well and this Dee Dee is SO grateful.
Playing with Pops!
You have an awesome Dad. He's cutting you a shark out of wood.
Dee Dee wore this to sing Love Shack at the church at a marriage conference. You found it in my car. HAHAHAHAHAHA!
A few silly pics... LOL
We went to eat at Chipotle. We started out outside and the temperature starting dropping quickly!
You brought your wallet in your back pocket and you were SO proud of it. You wanted to buy a book in Publix with your OWN money.
Getting your wallet out!
I love watching you in action. :) You are NOT shy.
Dee Dee and Pops bought you Mario Cart at Game Stop. We had fun taking turns...
You took my phone and took a selfie! You are beginning to look SO old. You are also getting more and more freckles!
I'm so proud of you and how well you do your vest! You don't mind the vest as much as you do the breathing treatments...You say they taste GROSS! :)
You had clinic this month and it was a great visit.
You weighed almost 51 pounds... you were 50 pounds and 14 ounces. And increase of 4 pounds in 3 months and in the 23% for weight! What a praise is THAT! The biggest weight gain you've ever had in that time frame. You grew in height too.
I love your determination and competitive spirit SO much. You first blew a PFT in the 90's and again in the 90's and then a 99. You asked if you could go for 100 and you tried one more time and got a 101. What a PRAISE! Your best PFT in awhile. Your lungs sounded clear. We are still waiting on your cultures to come back but you had a really good visit. Dr. S was super excited in your progress.
You are eligible for Trikafta when it gets approved for your age group (6-11). It should be by the end of 2020 or the beginning of 2021. That was one of the reasons that Dee Dee and Pops went to D.C. was to ask Congress to fully fund the NIHI and the FDA so that this drug could get pushed through quickly.
We are SO thankful you are in the 90% of the people this drug should benefit. There are still 10% of the CF population this won't help and you COULD have a reaction to this medication. We're praying now that you'll be able to take it with no or minimal side effects.
There are such exciting things in the works in the world of CF. Dee Dee and Pops had the opportunity to listen to scientists and doctors in D.C! We can't wait until CF stands for CURE FOUND.
Praise the Lord for His hand on you, Aspen!
Prayer Requests for Aspen:
* Maintain his weight gain
* Cultures to come back OK
* Stay healthy for the remainder of the flu season
* Trikafta to be approved for Aspen's age group
* As he begins understand more and more what CF is... that he will handle it well
Aspen... your Dee Dee loves you to the moon and back and back again! You Dee Dee's little buddy and I'm so thankful for you. Praying for you daily.
Next week the days get longer.... It will be daylight until 7:45pm. I CAN NOT wait.
Happy birthday month to you and me!!!
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