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I'm Shay! I’m a cookbook author, lifestyle blogger, travel agency owner, wife and mama who loves making every day special for my family.

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Mix & Match Mama

Ashby ·

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

 

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Comments

  1. Charmaine Ng | Architecture & Lifestyle Blog says

    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

  3. Erika Slaughter says

    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

  5. The Nelson Nook says

    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.

  6. Tish Ferry says

    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!

  8. Lynne says

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

  9. Carly says

    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 ❤️!

  12. Dana says

    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!

  13. Elisabeth says

    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!

  14. Casey says

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

  17. Elspeth Mizner says

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

  18. Lizzie Horne says

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

  19. Paula says

    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.

  20. Katie says

    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!

  21. Britt Hensley says

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

  22. Lizzie @ This Happy Life says

    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!!

  23. Erin Port says

    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

  26. Andrea H says

    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!

  28. Wendy Walker says

    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.

  29. Michelle Nordstrom says

    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.

  30. Narci says

    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!

  31. Laura says

    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.

  33. Sheaffer Sims says

    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!

  35. Marti says

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

  36. Rebecca Brittain says

    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

  39. Cynthia THurlow says

    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 🙂

  40. Amanda @ That Inspired Chick says

    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

  41. Paige E says

    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

  46. Lydia Sour says

    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 ?

  48. Alexis deZayas says

    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!

  49. cassie {hi sugarplum} says

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

  50. Lindsay D says

    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!!

  52. Rebecca Walker says

    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!!!

  53. Barbara Parnell says

    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!!

  56. Lauren Break says

    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. 🙁

  57. Meagan Smith says

    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

  58. Sara says

    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.

  59. Tanya says

    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.

  60. Jackie says

    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

  61. Angela Ellingson says

    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!!

  63. Jenny says

    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.

  67. Vicki Leuck says

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

  68. Susan says

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

  69. Lauren says

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

  70. Detroit Duchess says

    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!

  71. Jeanie says

    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.

  72. Nancy Flemming says

    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?

  74. Liz Thorson says

    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.??

  75. Debbie Dunbar says

    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!

  77. Traci Rivard says

    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.

  78. Jill Myers says

    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.

  80. Jen Williams says

    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!

  81. Marta says

    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.

  83. Debbie says

    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! ???

  85. Dawn says

    I so admire the good-heartedness of your family — yourself, Andrew, Kensington, Smith, Ashby, and Madeley. May the good that you all share be only reciprocated with good to you.

    Also, I know it’s up to her, but I kinda pray that Ashby becomes a doctor herself one day. She would be incredible!

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