Hi everyone. I have been asked by several people if I am going to start a blog to keep friends and family apprised of Avery's upcoming surgery and trip to Madison WI. Well, here it is. I have never done one of these before so I can't guarantee how much will be here.
So, Avery has a really rare condition called Parry Romberg syndrome. It is a condition that causes the tissue and bones in her face to "atrophy" and waste away. We are headed to Madison WI in about 10 days to have surgery to repair the damage already done and hopefully stop all further progression.
Greg, Avery and I are driving to Madison. We leaving on Fri Nov 4th and driving about 1/2 way to Omaha and then on to Madison the following day. Surgery is scheduled for Mon 11/7. It is a 6-8 hr surgery and she will be in the PICU for at least the first night. We anticipate an ~5 day stay in the hospital. Then she will have a follow up appt at 7 days post-op. we are unsure how long we will be in WI. Paige is staying home with family & the dogs while we are up there. She does get to come visit Avery the weekend of Nov 11th with Buggy (my mom).
That's the quickie scoop for now since I'm just trying this out and getting it started.
DD
My heart and prayers are with you and your amazing family!
ReplyDeleteAvery apparently told Nanny yesterday that she was going to Madison to get her face fixed. WHAT A TROOPER. She can also ride a bike really good.
ReplyDeletePoppy
Thanks for starting this. It will be nice to keep updated. Many prayers and love for your family!
ReplyDeleteI agree, this is a great way for us to know what's going on. Thanks DD. Alice and I are thinking about you all and we'll pray for you.
ReplyDeleteSo glad you started this so we can keep up to date and pinpoint our prayers. Blessings to you all and safe travels.
ReplyDeleteThinking of you all, and will be keeping Avery in my prayers. Travel safely. Thanks for the update. Miss you! xoxo
ReplyDeleteAll,
ReplyDeleteYou are in our prayers! Looking forward to seeing you in Madison.
Best,
Jeanne and Rob
Great idea with the Blog, thanks for including me. Please leave my number with your mom when you're out of town... we are happy to help out with Paige, dogs, whatever you need while you are gone.
ReplyDeleteThanks so much for doing this. I know we all really appreciate knowing what's going on -- you probably appreciate not having to repeat things a million times. I hope this becomes cathartic for you.
ReplyDeleteKnow that you, Avery, Greg and Paige are on our minds and we're rooting for you all.
love to you all
lauren
Avery is just too cute! What a doll! We'll be thinking of sweet Avery and praying for all of you! I never worried during surgery...always pictured God's hands around Dr. Siebert's hands. He is such a good and capable surgeon!
ReplyDeleteI just showed Avery's picture to Hank. He said, "She'll do just fine!" :) It's been three years since Hank was diagnosed. I can't imagine what his life would be like without Dr. Siebert. He really is a lifesaver!!
Please keep up posted!
xoxo
Terri
Hi Dee Dee!! Sooooo glad you are doing this!!! You and your family are in my thoughts and prayers. Please please keep us posted.
ReplyDeleteBig hugs to you all!
Carissa and Austin
Good Morning All,
ReplyDeleteHope you got a good nights rest and that Avery is doing fine. We are so relieved that everything went well and she is OK. We love you all and miss you. Little "A", we can't wait to see you - here is a BIG hug and kiss from Nani and Poppi.
Have a good day, Love to you all
Good morning Little "A", Paige, Greg and DD. Hope you guys had a real nice night last evening with Paige and Bugy there. Have fun today and Nanni and I really appreciate all the pictures. Sophie and Mr G are doing fine, although I think Sophie misses you all. We'll see Paige and Bugy tomorrow night and wish you a safe trip home whenever they release the "A"
ReplyDeleteI love you all,
Poppi and Nanni
Good morning Little "A".
ReplyDeleteStitches out. Good thing. See ya Friday!
Poppi and Nanni