Friday, June 21, 2013

Not Just Another Pretty Face

For nearly a year, Tayta has been sporting the look of someone who just had her wisdom teeth removed on the left side of  her mouth, and she has done it with grace and confidence; confidence that came not only with knowing that the extra tissue in her face would eventually be removed, but confidence that God has called her His child and has given her a purpose for living, a purpose which did not depend on the symmetry of her face.

Many of you know of Tayta's diagnosis with Parry Romberg Syndrome, a rare autoimmune disease which causes the tissue, and sometimes the bones, on one side of the face to atrophy. I have written a few posts about Tayta's journey with this disease and about her free-flap tissue transplant surgery which took place last August. You can read those here, beginning at the bottom of the page. (I include these again as these posts have put me in touch with others who have children with PRS and I'd like to share information about Tayta's treatment which might be helpful to others.)

Tayta expected that she would have to wait until next summer, our regularly scheduled time to visit the States, to have the revision surgery, in which the surgeon would complete the cosmetic aspects of her treatment, but God provided the means for Tayta and I to travel to Madison, Wisconsin this week so that she could have the surgery sooner than later. An extra bonus of our trip was a visit with Oldest Daughter, living in Evanston. She treated us to a wonderful performance of the Chicago Symphony Orchestra, but the best part was spending time together and being there to help her move out of her apartment for the summer. God has been very generous with us!

Here we are, packed and ready to fly out of Amman's new international airport. We're also trying our hand at taking pictures with my tablet--I like my camera better.

Tayta's surgery took place yesterday morning: it was a three hour surgery in which her surgeon "de-bulked"  her cheek, took  a couple stitches above her left eye to correct the pulled skin, and filled in her left lip, using tissue from her right lip. The picture below shows just how great Tayta is looking several hours post-op.

One day post-op, the eye and lip swelling have increased and there is more discoloration of Tayta's skin, i.e. bruising, but that is to be expected with such a procedure. Her surgeon predicts a six-week recovery period. While this surgical intervention isn't technically a cure for PRS, it has arrested the affects of PRS in every person who has undergone a free-flap live tissue transplant.

Our hearts are overwhelmed with gratitude to God for providing this surgical option for Tayta and for the many friends, old and new who have helped us, cared for us, and prayed for us along the way. Thank you!

I will leave you with some wise advice from Tayta, given to me this afternoon: "Don't ever have plastic surgery unless you have to."


Jenny said...

What wonderful news on Tayta's surgery! That gal's smile is always at the ready! even post-op. Praying.

MagistraCarminum said...

Rejoicing and praising God. Give that girl a gentle hug and a "Well done" from me!

Laura A said...

Hoorah! I'm so glad to hear that the surgery went well and that the doctors expect it to be effective. I'll take Tatya's advice!

Woman of the House said...

What a brave girl Tayta is! (And so is her mama!) I'm so glad the surgery is behind her. I pray she has a quick recovery!

Ctin said...

Oh she is looking great! The surgery is definitely a success. Wishing her a speedy recovery.

Sheree said...

Thank you for documenting your daughter's journey with Parry Romberg Syndrome. My 9 year old daughter also has PRS, so I was very interested to read and see what you have done, as well as to find out about the Romberg Connection. (No amount of internet searching has led me there until I found your blog! And I've searched a lot!)

If it would ever be agreeable for me to talk to you, you may email me at Thanks again for the information.