You are such a BIG boy! You are so much fun. Every week you do so many different things that keep us laughing and our hearts melted. Dee Dee and Pops were in Utah at the start of this months birthday. This is me and you the night we got home. We stopped by to see you all!
April 30, 2015
You went with us to pick up Bow Valley from the boarding place. You LOVED seeing Bow and Bow Valley was happy to see you too! :)
You stayed with me the next day while your Mama worked! We got a milk shake from Chick-fil-a. Anything to get those calories on you! You love a vanilla shake though!
This is you doing your "shocked face"! You have so many faces! :)
You've lost weight this month. One of the problems with CF is that it's hard for you to keep your weight on and to grow and for the nutrients to be absorbed properly. You saw Dr. Hutchins this month and you were 36 inches and 25 3/4 pound. You have lost some weight and are now in the 25th percentile for weight (down from the 50th this past February)… the lowest you've been since you were a tiny baby. You were in the 75th percentile for height, so that's good. You can tell you are getting taller but your little waist is SO tiny. You can't keep your 24 month pants on… and some of your 18 month clothes are too big too.
Your enzymes were bumped up to 5 capsules of Creon at your last visit in February. Your "stools" look ok but you've become a pickier eater and sometimes just refuse to eat. We sure are praying that you will put some weight back on.
You are pancreatic insufficient (about 5% of CF patients are sufficient), so that is why you take the enzymes with meals and snacks. You run low on your Vitamin D and take mega doses of that. You were also a little anemic at Dr. Hutchins in early May, so we are anxious to hear what the clinic has to say. You weren't severely anemic (it was 11.2), so that's not too bad.
Your Mommy painted the picture on the left from verses out of Psalms. I love hers the most! :)
Me, Nelly and Mrs. Sandie painted different ones but all were in YOUR honor. Mrs. Sandie is one of your biggest encouragers and prayer warriors for a CURE.
This is Michele…. she was responsible for the fun and money we raised!
SO many things to be thankful for. It's easy to look at the problems we have but I pray we will always take time to stop and be grateful for the blessings we have… small things and the big things!
You went on your first fishing trip…with your Dada to Lenora Park. I think the look on your face says it all. You weren't quite sure what to think! LOL
This makes me smile really big! You truly didn't know what to think… or at least that's what it looks like! :)
The first weekend in May, you came down with a really high fever. It went as high as 104.7 and scared us all. You didn't have any symptoms so that was confusing. Thankfully you had a doctor's appointment already scheduled for the next Monday. Dr. Hutchins said she thought it was viral but gave you an antibiotic just to be on the safe side. CF makes her a little more nervous than she would normally be. You were so pitiful. I'm so grateful that you only had this for a few days!
You were supposed to go to the CF clinic on Tuesday, May 5th but they didn't want you to come sick. They rescheduled your appointment for July. This is the longest you have ever been not going to the clinic and the first appointment you've had to miss. We're thankful you were able to see Dr. H!
A few days later… feeling all better! #grateful
Look how much he looks like Lindsey at the exact same age! #makesmetearup
Mother's Day weekend was full of fun! Friday night, your family and Pops and I went back to Lenora Park for a picnic. You LOVE the outdoors so much. It makes my heart so happy for it to be warm outside. I love this picture of you talking to your Mama by the lake!
Pops loved fishing with you!
We also spent some time on the playground. Look how big you are! You aren't afraid of anything, it seems, and are fearless on the playground.
Dee Dee loves to play with you and to slide down. You are GO GO GOOOO and that makes me smile!
Me and your Mama had so much fun playing with you!
You LOVE to swing in our arms. You've gotten good about saying, "THANKS" before you take off swinging though. :)
On Saturday night, we went to Athens and ate at Chipotle and had frozen yogurt for dessert.
You're SO big now…. you won't "allow" a booster seat or a high chair. You need to sit in a big chair. :)
Stare down contest with Cookie! HAHA
On Sunday, Mother's Day… we had a picnic at Lake Varner. It was a beautiful day! You loved playing by the water.
Your sweet family! You will say "CHEESE" really loud but don't always look at the camera or smile when you're saying it but you are a ham bone for sure!
You keep us hopping so you don't end up IN the water but you are so much fun!
This is one of my favorite pictures EVER of us. So sweet and so peaceful. I could stay outside with you ALL day!
Pops is pointing out a fish to you! I LOVE you two and I love this picture!
One of your favorite things to do is play with "TOM". You are amazed by him and never seem to get tired of him. Your Tom time is limited and you don't appreciate being interrupted. haha!
So much fun with Pops and Bow Valley...
You finally did what we've been waiting for you to do… but I thought you'd climb OUT of the crib… not into the crib. You opened Bennett's bedroom door and climbed into his crib while he was napping. He was petrified. I'm sure you just wanted to play though! :)
WOW! I love this picture! We raised over $15,000 for a CURE for CF. We had so many generous, kind, loving and big-hearted people show enormous support for our family and for you! We sold t-shirts, had a Pampered Chef fundraiser and a Thirty-One party. Many people gave generous, deep from the heart, selfless donations. A couple of people formed their own "teams" just for YOU! We had a fundraiser at Chick-fil-a, and raised money at Belk's. We worked so hard and had so many bless us in powerful ways. We are grateful for each one of you that helped us reach our goal.
I'm so touched that people shared our efforts and supported us in multiple ways and never got tired of showing their support. Thank you ALL and may God richly bless you.
This was our first year for family to join us and it was a wonderful feeling! Thank YOU all!
You did not know what to think of the CFA cow. haha!
It was fun watching you and Grady "talk" and walk hand in hand.
Hope and Will from CHOA. We loved seeing them at the walk but prefer NOT to see them at CHOA. :)
You have so much support from your family. You are a blessed little mister and we are blessed to have you!
Some of our biggest supporters! We missed you Bill and Robin. Thank you for your support and encouragement and many prayers for our little man!
This sweet girl knows how to be a friend! She loves Aspen and prays for him every day at school with her friends. We are grateful for her!
This is my sweet friend, Wanda! She raised over $1,000 for a CURE. She loves you and we love her! She is so encouraging and supportive and we are grateful.
We walk… we stride… for YOU!
Our t-shirt design WON! YAY! #believe #Aspen #foraCURE
Atlanta raised over 1.8 million! #amazing #thankful
Dee Dee was asked to hold a number because our team worked so hard! There I am holding a "0"!
An Aspen sandwich for YOU!
Carole, Janet and Wanda…such sweet supporters of yours!
My sweet friend, Michele! She encourages me with her support for you and a CURE!
Special friends of Dee Dee and Pops! These were our SS teachers back when Pops and I first got married. They just moved back from AZ and I'm so thankful they came out to support you and our family. They have supported us every step of the way and we are grateful!
SO many reasons to "STRIDE!"
This is why me and your Mommy stride...
An interesting fact about the walks. We have to keep you 6 feet or more from other people with CF.
It's hard to see from the OUTSIDE the damage that is going on INSIDE someone with CF. Oftentimes people think you "look" healthy but you already have some signs on your chest x-rays. When you go in July, they will do bloodwork, another chest x-ray and possibly a chest CT scan. It's so important to keep your lungs as healthy as possible for as long as possible.
This was on the CF Foundation's Facebook page. This is just PART of the reason that Dee Dee "strides" for YOU!
We can't thank everyone enough for your support! SO much selfless, generous, loving giving of your time and money for a CURE. Our family thanks you from the bottom of our hearts. #BELIEVE
After the walk, we went to the Varsity for a special treat! You loved the chocolate milkshake.
You came home with Dee Dee and Pops to spend the night so your Mommy and Dada could go off for their anniversary. You and your suitcase make me smile!
You LOVE, LOVE bananas! You like to refer to them as bagaa's. I'm thinking ONE day you'll change the name to a banana. :) Your smile here makes ME smile!
It sure is hard after a full day of fun and excitement to "tie" you down to a machine for 30 minutes. You do a 20 minute breathing treatment and a 30 minute vest "chest therapy." It's easy to get bothered by this and bummed out because you do NOT like to do it… but we know you should. I'm thankful they have this technology to help you breathe better. :) Not that many years ago, children with CF didn't live much past the age of 5. The vest really is a blessing, even though at times it feels like a "drag." It allows you to stay healthy for longer and we are blessed. We couldn't be more grateful for the advances in medicines and therapies to keep your lungs as healthy as possible for as long as possible!
We had plenty of time for fun in the basement! :) You LOVE to watch Percy (Thomas), play with your balls, trains and jump all over the couch.
This sweet face is WHY I stride. To give you a chance for a long, happy, healthy life! #foraCURE
We ate at our favorite… Chipotle!
You ate your entire bag of chips all by yourself. :)
This picture still makes me smile! Your Mama took it one morning. SO CUTE!
Bennett loves you. He thinks you are hilarious! :)
Sitting in your big boy chair eating some ice cream I brought you when you were sick! Look how old you look! :)
Playing outside with your Dada and Bow Valley… some of your very favorite things!
We celebrated Pop's 50th birthday this month! We rented a house in Blairsville, GA and you were so happy. 17 acres of pure bliss for YOU! Bow Valley, land, balls, and beautiful weather. All you wanted to do was WALK! haha! These are our friends and family that came to celebrate.
I love my family so much! You and Pops in the special person chair. :)
You and Grady chilling…
Down by the creek with Pops!
This is the first night you got there. You were so excited.
The "after party" with Nicole, Chris and Noel. What a fun weekend.
You can entertain yourself no matter where you are if you are outside.
Dee Dee and Pops teaching you to say, "Peace OUT"! You are learning the hand motions. #youarehilarious
It won't be long before you are kayaking with Pops! Mommy said we could get you a life vest. :)
Fishing on the banks with your Mama...
You entertain yourself for hours with Bow. You love to throw bark on her back or pull her tail. She's very patient with you!
Cookie loves playing with you. He's helping you fish.
Fishing with Pops, Cookie and Nelly!
I wish I had a picture of you crawling into Bow Valley's kennel and sitting down and eating his dog food! It was funny but NOT funny! It shocked us so that we didn't take a picture. haha! You ate your grapes in your bowl on the floor for the rest of the weekend. :)
We had a campfire with smores. You ate the marshmallows like ice cream… you licked it!
Dee Dee bought you a ball at Vogel. We played outside with it when we got home.
Our cabin… lots of space to play!
Dee Dee loved playing outside with you!
You went up and down and up and down. :) #sobig
You spent the last night in Dee Dee's room. You slept ALL night…until 7AM. I was so proud of you! I love, LOVE to snuggle with you. You had just finished taking a "sha sha" with Pops! :)
The next morning you snuggled with Pops on the couch!
It's after weekends like this that it's easy to forget, for a moment, that you have CF. We try so hard for CF not to "define" you and for you to grow up doing what little boys do. It takes much faith, courage, strength and prayer. #trusting #believe
Aunt Nelly and Cookie bought Aspen a trampoline for Christmas and he's just started using it. It makes us all happy because it's a WIN-WIN! He loves to move and bounce and jump and in the process it's moving the mucus in his lungs around. #funtherapy #thankful
The night before your 26 month… Mommy, Nelly and I came home from a meeting to find you and Pops outside playing in the puddles. Your pants had gotten wet and you were having so much fun with Pops! I had to snap a few pictures! :)
We ate dinner (Where's Aspen???) hahaha
And played with your trains...
And played inside the new tent Dee Dee and Pops bought you…
You're so silly! We had so much fun playing with you tonight. I'm amazed at how much you've changed since last month.
SO much to be thankful for. I give thanks for the progress you are making and how you have been well this month!
This sweet face of yours sums it up! You are hilarious! You have us all wrapped around your finger….but that's OK! :) You love to throw things in the toilet… yes, IN. haha! You never stop. Like never. You know your colors and can say your alphabet, with help of course. You're learning to count. I think your favorite color is orange but that's just Dee Dee's guess. You tell your Mama when you "pee pee" and she thinks you're getting close to potty training. You know what it means… you're just all boy, so it will be interesting! :) You surprise us every day with words and phrases. You dropped something recently and once said, "Oh shoot" and "dang it." haha! Where did they even come from? We just have to laugh. It's fun being able to "communicate" more. We know so much more of what you are saying this month. You talk, talk, TALK a lot. I can't wait to be able to understand it all. You have a stubborn streak, you are still j-e-a-l-o-u-s of Bennett but you are getting better. You are just used to having us all to yourself. haha! You know how to make us laugh, you have the funniest faces and the sweetest expressions.
You're going to the CF clinic in July and I have to admit I am a little more anxious than normal.
Would you join us in prayer for:
* Aspen to gain weight and to have a better appetite
* His chest x-ray/scan to not show any further damage to his lungs
* A CURE - medicines to help improve quality of life and the trials already in place
It's really exciting that they have a drug that has been approved for those with TWO copies of the DF508 mutation. Aspen has one copy from Lindsey. His other mutation is a splicing, class I mutation but we are hopeful for something to help him soon. There are currently 11 trials underway and I believe that the foundation won't give up until ALL with CF have a CURE. SO many encouraging, positive things going on. One of the trials is for those with just ONE copy of the DF508… there is reason to believe if they can get that mutation to work SOME that it will significantly improve health.
Trials get complicated but please pray that something beneficial will be found by the time Aspen is 6 (the age that many drugs can be taken) and that he won't experience any permanent damage before then.
Aspen's "rare" splicing mutation (1898+1G>a) is a coin toss. While it's a Class I (the most severe), it seems that people with this mutation either do really well or really poor. I am excited to have come in contact with several people this month with Aspen's combination of mutations. Up until this month, I have only talked with one lady. Genotypes (mutations) aren't an "end-all" in how you will do… there is much more that goes into it such as genetics but it's nice to connect with those that share the same.
http://www.cff.org/research/ClinicalResearch/FAQs/CombinedKalydeco-VX-809/
To those that ask about Aspen, pray for him and love him…we THANK YOU! Thank you for helping us add "more tomorrows" and quality to his life.
Aspen… Your Dee Dee loves you to the moon and back and back again. I'm so grateful that I'm your Dee Dee. I love you and Bennett so much. I'm so happy that I've been able to help raise awareness this year and that our team "Aspen is growing like a tree" has been recognized. People know who you are and it makes me happy to share your "journey."
I'll never stop wishing and praying for a CURE for you and all those with Cystic Fibrosis. I love you little Mister!
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