Ashby update

Today, I thought I’d share a little update on Miss Ashby.

First of all, thank you so much for your prayers on Friday morning.  Friends, THEY WORKED.  I promise you, we felt your prayers because Ashby had been so scared and nervous, but once we arrived at the hospital, she had this amazing peace come over her.  Your prayers worked.  I am forever thankful that you love my daughter enough to lift her little life up in prayers.  We felt them.

For those of you who don’t know/are new, Ashby was born with Klippel-Trenaunay Syndrome, which is a type of vascular malformation.  When we first got Ashby, we didn’t know anything about KTS (we didn’t even know she had it…we just thought she had a more basic malformation), but have learned a lot over these last almost three years.  Bless her heart…she has been such a brave little warrior!

In October 2015, Ashby had an aneurysm removed from her lung and debulking in the veins on her right hand.  From there, we began researching and praying over the next steps.  We have a wonderful team of doctors who work so well together to make sure Ashby receives the best care possible.  This past March, we even went to get a second opinion in Boston at their Vascular Anomalies Client and were assured that she was exactly where she needed to be here in Dallas.

Friday was Ashby’s 10th procedure in a series of procedures we’re doing in order to keep Ashby safe and healthy.  At first, the doctors thought that Ashby would only need six…but right now, they’re thinking she’ll need closer to twenty (her doctor told us that the record right now at Children’s in Dallas for this particular procedure is 14).  So, it’s been a long road, but we’re most likely only about halfway through.  In a nutshell, they’re reducing the size of Ashby’s veins with each one.  They’ve started in her hand and have worked up to her elbow.  They have to keep going until they get her whole hand, arm, shoulder and chest done.  Her little body can only take so much at a time which is why this is a marathon and not a race.

So, why do we do this?  So many people have commented on how good Ashby’s hand is looking and while we do enjoy the aesthetic/practical benefits these procedures have (she can now bend her fingers, make a fist and even grasp things with her affected hand), the real reason is that it keeps Ashby safe and allows her to keep the limb as long as possible.  Blood clots and aneurysms are very common (she just had a clot removed from her hand on Friday), so these procedures help reduce that.  KTS affects people differently and the more Facebook groups I join and people I speak to, I realize everyone has a different story about how KTS affects their life.  The thing about KTS that always remains true though is that the older you get, the worse the condition gets.  Unfortunately, this isn’t something that can be fixed/cured, but something we’ll always be managing (especially more as she ages).

This precious girl faces challenges daily (so many that I don’t document but keep private), but ALWAYS overcomes them.  The older she gets, the harder this all gets.  She has been asking questions lately like “When will my special hand look like my left hand?”  and the answer is hard.  Ashby has to trust Andrew and me to make the right decisions for her health and we have to trust the Lord.  At only five, I believe Ashby has touched so many with her bravery and strength, and I just know that will continue as she gets older.  She is such a joy and a light in our family.  She really is the SWEETEST little girl.

So, that’s a little update.  Thank you again for your prayers.  We are blessed by them more than you’ll ever know.  What in the world would we do without this precious little girl?  She is such a blessing to us.  I am so thankful that God worked it out so that a little girl born in China would be our daughter.  How cool is that? xo

 

Print Friendly, PDF & Email

86 Comments

  • Reply Charmaine Ng | Architecture & Lifestyle Blog November 13, 2017 at 4:37 am

    I knew Ashby had a condition, but since I’m a relatively new reader, I never knew about the specifics. Thank you for clearing things up. I’m so glad Ashby is okay now! She is so blessed ❤❤

    Charmaine Ng | Architecture & Lifestyle Blog
    http://charmainenyw.com

  • Reply Leslie Z. November 13, 2017 at 4:43 am

    I love that you call her a brave little warrior, because it seems so fitting! I can’t imagine what all of those procedures are like for an adult, much less a child. Praying for Ashby’s healing and recovery!

    http://www.withlovefromgablog.blogspot.com

  • Reply Erika Slaughter November 13, 2017 at 4:50 am

    Ashby really is the sweetest little thing! God is doing such amazing things through her. We love that girl BIG over at our house! XO

  • Reply Lynn November 13, 2017 at 4:58 am

    She’s just a little inspiration. Praying for this precious little girl x

  • Reply The Nelson Nook November 13, 2017 at 5:09 am

    Prayed for her and knowing that she is in the best hands ever. God will continue to heal her. She is such a trooper and love seeing all the updates.

  • Reply Tish Ferry November 13, 2017 at 5:17 am

    Praying for sweet Ashby and for you and Andrew as you continue to make hard decisions. I love how Ashby’s smile shows through her eyes! Much love from our home to yours!

  • Reply Bethany November 13, 2017 at 5:21 am

    This is the best! We are continuing to pray for Ashby and you guys as well!

  • Reply Lynne November 13, 2017 at 5:33 am

    She’s so blessed to have such a loving and fun family! Will keep the prayers coming for your sweet girl❤️ 🙏

  • Reply Carly November 13, 2017 at 5:35 am

    Precious, sweet Ashby! God is doing big things through her story! My daughter has both a lymphatic malformation and a vascular anomaly called Ectasia of the jugular, and we’ve done more procedures than we can count and some miraculous, created for her surgeries at Children’s in Dallas. It is so hard when you don’t know what the future looks like and can’t guarantee “normal.” We have to rest completely in the promise of Psalm 139- that God created her and knit her together, and even though the drs don’t even really know what’s to come, we serve a God Who does.

    Much love to y’all and to brave Ashby ❤️!

  • Reply Sarah November 13, 2017 at 5:36 am

    Awwww she is seriously SO BRAVE!!! 20 surgeries?!?! Your poor baby!! I will continue to pray for her and your family during this journey. Stay strong, Ashby!!!
    -Sarah http://www.thefrugalmillionaireblog.com

  • Reply Megan November 13, 2017 at 5:40 am

    Thank you for sharing even the hard stuff.

    http://www.lettinginthelightblog.com

  • Reply Dana November 13, 2017 at 5:42 am

    I was just telling a friend who is visiting about Ashby’s story. Thank you for sharing, I’ve always wondered and been concerned about what the other issues could be since you’ve alluded to them. What a special little girl and incredible story of redemption. May our Lord give you all wisdom as you seek to treat this. I think I speak for many people who have grown to care so much for this little girl and your whole family!

  • Reply Elisabeth November 13, 2017 at 5:45 am

    What a precious gift you have! Thanks for sharing a bit of Ashby’s story/update today. Her smiling face and brave attitude is such an inspiration!

  • Reply Casey November 13, 2017 at 5:53 am

    She is precious and so blessed to have you two for parents! Prayers for her, as well as Mom and Dad!

  • Reply KimW November 13, 2017 at 5:54 am

    Thank you for sharing this update! Ashby is a tough cookie – that is certain!!

  • Reply Hanna November 13, 2017 at 5:55 am

    Continuing to pray for sweet Ashby! ❤️

  • Reply Elspeth Mizner November 13, 2017 at 6:17 am

    So sweet! Bless sweet Ashby! What a true warrior! She has a wonderful family to support her the entire way! Keep the faith!

  • Reply Lizzie Horne November 13, 2017 at 6:19 am

    Ashby is an inspiration to us all, what an incredible little girl she is, sending much love from London xx

  • Reply Paula November 13, 2017 at 6:23 am

    Thank you for sharing a bit of your family’s story. As a momma, I empathize. My daughter is 10 and has Angelman Syndrome. It breaks me daily. We are currently trying to gain seizure control & it is awful.
    Blessings.

  • Reply Katie November 13, 2017 at 6:27 am

    I am in awe of her bravery at such a young age! It also gives me goosebumps when I read the doctors in Boston said she was right where she belonged in Dallas. Of all the places in the world and of all the families, the Lord orchestrated her to be a Shull. He is truly GOOD! Thank you for sharing!

  • Reply Britt Hensley November 13, 2017 at 6:38 am

    What a beautiful testimony!! Praying God’s will continue to be done in Ashby. Thanks for sharing with us.

  • Reply Lizzie @ This Happy Life November 13, 2017 at 6:46 am

    Thank you for sharing Shay – what a long journey for Ashby (and you guys) but I don’t think there’s anyone better to care for her than you & Andrew! I wish the procedures continue to work for your sweet girl!!

  • Reply Erin Port November 13, 2017 at 7:00 am

    You are an amazing momma and she is an amazing little girl :). Thanks for sharing, I know it encouraged so many including me! xoxo ERIN

  • Reply Laura November 13, 2017 at 7:14 am

    Ashby is so inspiring! What a strong, sweet girl. So glad you all could feel our prayers. 💗

  • Reply Neer November 13, 2017 at 7:21 am

    God Bless ur family .u r awesome mom !!

  • Reply Andrea H November 13, 2017 at 7:21 am

    I can’t offer any help from so far away, but I can tell you that this little girl is loved all over! Bless y’all and all you do for and with her!

  • Reply Becky Bays November 13, 2017 at 7:27 am

    Thanking God for families like yours!!! And for Amazing doctors!!!

  • Reply Wendy Walker November 13, 2017 at 7:27 am

    Thank you for sharing. I can’t imagine the hurt your mama heart must feel for your precious girl. Keeping you all in my thoughts and prayers.

  • Reply Michelle Nordstrom November 13, 2017 at 7:39 am

    Thank you for sharing. I hadn’t previously understood the depth of what they were doing and that that wouldn’t “fix” her. Please don’t hide the hard stuff that she struggles with. I know you want to keep things private for her and also be a positive blog in a cloudy world. I will pray for her day to day life and not just the surgeries.

  • Reply Narci November 13, 2017 at 7:40 am

    Ashby is a rock star, and we love her to pieces. Her sweet smile and voice melt my heart every single time! Praying for you, sweet girl!

  • Reply Laura November 13, 2017 at 7:54 am

    Your Ashby updates always bring me to tears. You can tell just by looking at her sweet face that she has such a gentle, special spirit. I’ve never met her, but I know that she’s going to do amazing things.

  • Reply Melissa November 13, 2017 at 7:55 am

    Bless her sweet heart…and yours as I know it’s so hard on the mama too.

  • Reply Sheaffer Sims November 13, 2017 at 7:56 am

    Ashby is a warrior and a hero for so many. Her sunny disposition and absolute joy for life are nothing short of inspiring. Every single time I think about her, I think about how brave she is. And yes, so thankful that she’s with y’all and getting all the medical attention that she needs. Thank you, God!

  • Reply Courtney November 13, 2017 at 7:59 am

    Continued prayers for Miss Ashby, such a brave little girl! Thank you for the update Shay, have a wonderful week!
    XO
    Courtney
    http://www.greywoodmama.com

  • Reply Marti November 13, 2017 at 7:59 am

    Having to watch our children go through such things is HARD–no way around it. Just keep relying on the Lord.

  • Reply Rebecca Brittain November 13, 2017 at 8:00 am

    Praise God for renewing Ashby’s strength and trust in you and Andrew as well as in Him. He works all things out for His glory and good and while this is a major struggle for Ashby as well as your family to go through, she is setting an example to all of us as well as to her little friends throughout her life. She is a miracle in itself, born for your family across the globe. That is nothing short of a beautiful marvel of God’s work in our lives. Thank you for sharing your precious family with us.
    XO
    -Rebecca @ EveryPieceFits.com

  • Reply Myka November 13, 2017 at 8:01 am

    Oh my, Miss Ashby is growing up so fast! Love these little updates, Shay! Ashby is just too precious and beautiful.
    Myka
    http://www.supersimpleways.com

  • Reply Megan Butler November 13, 2017 at 8:05 am

    She is such an amazing warrior!!

  • Reply Cynthia THurlow November 13, 2017 at 8:08 am

    I love your updates about your beautiful family…as an NP with a cardiology/ER med background, I marvel at the medical advancements that are made possible for Ashby as well as so many children. I’m so glad to know that her procedure went well. Sending love well wishes and continued prayers from Washington, DC 🙂

  • Reply Amanda @ That Inspired Chick November 13, 2017 at 8:30 am

    It just breaks my heart that she has to go through this but she is a mighty brave warrior for sure. I know you and Andrew would do absolutely anything for that precious girl. She has some great parents making decisions on her behalf. Hang in there, friend! xo That Inspired Chick

  • Reply Paige E November 13, 2017 at 8:33 am

    I love what you said that Ashby has to trust you and Andrew and you and Andrew have to trust God. That’s huge. Your testimony of trusting is a blessing in this space. Such a tough thing to do. “May the God of hope fill you with all joy and peace as you trust in Him, so that you may bubble over with hope by the power of the holy spirit.” Romans 15:13

  • Reply Angelique Dale November 13, 2017 at 8:38 am

    Wow she’s a tough little girl and you are a tough momma too! The marathon’s halfway over so its all downhill from here. With God’s guidance you will get there!

    http://www.FOURPOINTSMOM.com

  • Reply Melanie November 13, 2017 at 8:44 am

    ❤️

  • Reply Keisha M Dawson November 13, 2017 at 8:46 am

    Continued prayers for your sweet girl as she continues on this journey!

  • Reply Whitney Pegram November 13, 2017 at 9:09 am

    Sweet Ashby! ❤️

  • Reply Lydia Sour November 13, 2017 at 9:13 am

    Hey Shay! I have attached a link to the website for the organization She Lift because I think it is very empowering. Sarah Herron (from The Bachelor 😉 ) is a part of this organization and it’s to inspire young girls with physics disabilities. Let me know what you think 💕

  • Reply Molly Bierens November 13, 2017 at 9:15 am

    Thanks so much for sharing with us! Continuing to pray for her and her healing!!

  • Reply Alexis deZayas November 13, 2017 at 9:15 am

    Always sending prayers for your sweet girl!! God knew you would give Ashby the care, strength and love she would need through Him when He chose you to be her parents. God’s light shines through all of you each day!

  • Reply cassie {hi sugarplum} November 13, 2017 at 9:24 am

    I just love this little warrior, and will continue to pray for her and your entire sweet family! xo

  • Reply Lindsay D November 13, 2017 at 9:40 am

    Praying for sweet Ashby!! It’s amazing how much she can touch my life by just reading about her on your blog!! She is one special little girl!!

  • Reply Danielle November 13, 2017 at 9:59 am

    What a beautiful and brave little girl. Praying for her

  • Reply Rebecca Walker November 13, 2017 at 10:28 am

    So glad to hear that procedure went well for your sweet Ashby!!! She is so brave and beautiful, and I will continue to pray for her in my prayers. God Bless all of you!!!

  • Reply Barbara Parnell November 13, 2017 at 10:38 am

    She is so sweet. I hope they will find a cure in the near future. My second son has autism and is non verbal. I pray everyday that at some point they will figure it all out and he will be able to tell me what has been on his mind for the last 18 years. Never lose faith…miracles happen all the time, and I have faith in the medical community. Our children will be healthy and strong!!

  • Reply stacy November 13, 2017 at 10:39 am

    She is an adorable little girl. Many prayers for her and the rest of your family in the future!

  • Reply Jay Lowe November 13, 2017 at 10:42 am

    Matthew 12:13. God is still in the business of miracles. Like this one!

  • Reply Lauren Break November 13, 2017 at 10:44 am

    Thank you for this update. I pray for your sweet girl to recover quickly and for her spirit to remain brave and strong. She is such a beautiful little inspiration to so many. God is good and he has the best plan for Ashby’s future. Praying for you and your husband to feel that same peace as she enters future surgeries, and for the right words when the tough questions come. I can’t even imagine. 🙁

  • Reply Meagan Smith November 13, 2017 at 11:48 am

    What a gift you and Andrew and Ashby are to each other! Glad everything went well. Praying for continued guidance now as you move forward together! xo

  • Reply Sara November 13, 2017 at 12:01 pm

    It’s sad that such a sweet little girl has to be so brave but Ashby rocks it! Continued prayers for her health and for her doctors’ wisdom to guide you down the best path for her.

  • Reply Tanya November 13, 2017 at 12:30 pm

    I don’t have words for you, only prayers for her strength and comfort through this all. It is clear from all the photos that she truly does trust you and Andrew for all of her care. I really respect you for keeping some of her struggles private. Praying for your family.

  • Reply Jackie November 13, 2017 at 12:35 pm

    Hi Shay, I got teary eyed thinking about Ashby and all she’s been through. She’s touching so many with her bravery and I hope she’s recovering nicely from Friday’s procedure! XO

  • Reply Angela Ellingson November 13, 2017 at 12:36 pm

    It’s amazing how much love I have for your sweet Ashby! Like my heart is just bursting! I just adore your whole little family so much! I will continue to remember Ashby in my prayers. Hugs Mama!!

  • Reply April Parrish November 13, 2017 at 3:14 pm

    She is very strong & brave! Continued prayers for her!

  • Reply Jenny November 13, 2017 at 3:41 pm

    Thank you so much for sharing Ashby’s story. What a beautiful little life you get to guide and shape. And how lucky Ashby is to have such devoted parents. God is so good! I will remember your whole family in my prayers.

  • Reply Ali November 13, 2017 at 3:46 pm

    Thank you for sharing! What a courageous little girl!

  • Reply Marion Orgaer November 13, 2017 at 3:59 pm

    Thank you for this Ashby Update, she is brave, she so much a inspiration for me!

  • Reply Elise Welch November 13, 2017 at 4:05 pm

    So glad that the procedure went well! Praying for you and your family!

  • Reply Vicki Leuck November 13, 2017 at 4:19 pm

    I suspect the love your family provides and her learned faith through your example will make a huge difference in her life’s struggles. ❤️

  • Reply Susan November 13, 2017 at 5:33 pm

    Sending lots of love to sweet Ashby! She is such an inspiration. She is going to do great things! ❤️

  • Reply Lauren November 13, 2017 at 5:42 pm

    I am so happy to pray for Ashby. It’s an honor. And it’s okay to confess she’s our favorite, right? 😉

  • Reply Detroit Duchess November 13, 2017 at 5:44 pm

    Reading this breaks my heart. Ashby is so sweet and I can’t imaging having to be the one to tell her that her hand will never be “normal.” I’ve loved watching her journey unfold on your blog and I will pray for her and for you!

  • Reply Jeanie November 13, 2017 at 6:10 pm

    Ashby is in my prayers, and I’m so happy to learn how she handles all of her procedures like a big girl. I’m not certain I’d be so brave. I hope and pray for the very best outcome for her. She couldn’t have better parents leading her.

  • Reply Nancy Flemming November 13, 2017 at 7:01 pm

    Hi Shay! I’m a relatively new blog-reader (<1yr) and I'm actually headed to McKinney this weekend for a visit. I searched your blog and read your post from Summer 2016 about your town. Is there anything new that is too-good-to-miss for a first-time-in-TX visitor?

    • Reply Mix and Match Mama November 14, 2017 at 4:55 am

      Ah! Have fun!! You will love our downtown square so much!!

  • Reply Nancy November 13, 2017 at 7:16 pm

    Sweet Ashby inspires me so much! So bold, so courageous and so kind. Continued prayers for her!!

  • Reply Liz Thorson November 13, 2017 at 7:21 pm

    I love reading what the friends and family members you’ve shared with us–Erika, Sheaffer, Narci and your dad– wrote, especially Sheaffer. Ashby is one very special little girl. I am so glad she was chosen to join your family. Her sweet smile, her courage and her strong spirit appear to lift all who know and adore her.💕💕

  • Reply Debbie Dunbar November 13, 2017 at 7:39 pm

    The Lord placed Ashby with the perfect family. I hate that she will always have to deal with her illness but at least she has loving, supportive family to help her through!

  • Reply Jenn November 13, 2017 at 8:56 pm

    Love and blessings for your sweet girl and your whole family. 💜

  • Reply Traci Rivard November 13, 2017 at 9:13 pm

    I will say prayers for Ashby and your family. She is so sweet and brave and always looks so happy. Thank you for sharing. God bless you.

  • Reply Jill Myers November 13, 2017 at 10:48 pm

    So glad you felt lifted in prayer, that Ashby had a sense of peace, and that the procedure went well. Thank you so much for describing your amazing daughter and for sharing this part of your family’s life.

  • Reply Lindsay @ Lindsay's Sweet World November 14, 2017 at 7:19 am

    Praying for her sweet little soul every single day, Shay.

  • Reply Jen Williams November 14, 2017 at 7:32 am

    Bless sweet Ashby! She is so precious and you can see how sweet her soul is. Praying for her as she continues to be strong and brave as she faces each of these procedures. God bless you!

  • Reply Marta November 14, 2017 at 12:48 pm

    She has the heart of a Lion. She is braver than most adults. She has had to deal with so many loses in her young life, yet still she faces this battle head on. As her parents you and Andrew are doing an amazing job and should be commended. The love you feel for your daughter is palpable. God bless you and your family.

  • Reply Shelly November 14, 2017 at 4:18 pm

    Precious baby girl! So sorry she is having to endure this.

  • Reply Debbie November 14, 2017 at 5:22 pm

    Poor baby just wants to be like everyone else but she is so lucky to have you, and your husband, who care so much about her and can give her the love and healthcare she needs. Bless you! 🙏🏻😘

  • Reply Kacy November 14, 2017 at 9:13 pm

    Praying for her!!!

  • Leave a Reply