"I don't want to go to the hospital. I don't want ANYONE to look at my legs."
Mmm, miss Bossy Bessy was making herself quite clear, and Marvin and I took a shrugging look at each other as we both contemplated how much she has grown this year in awareness and expression. New challenges...
Our rainy day trip was smooth and uneventful, and we arrived to be quickly escorted to Dr. Aronson's office.
And there, we were reacquainted with BJ, a resident who cared for Quynh during her amputation. His fun way with her immediately put Q at ease, and we felt like we were seeing an old friend. We enjoyed his amazement at how far Quynh has come.
What a delight to see them having a conversation with one another! Definitely made our day.
Next, off to radiology and xray, where views of her hips were taken. We were able to view the films as they came up on the computer screen, and having studied what a hip should look like, I knew immediately that we were looking at her dislocation.
Several views were taken...and in answer to many prayers, Miss Quynh was fully cooperative and delightful. WTG girl!
Back in the ortho office, we met Dr. Aronson, whom we immediately liked. He proceeded cautiously with us, and after listening to a couple of his reserved comments, we assured him that we were fully aware of the huge risks it would be to correct her right hip.
Though her right leg is not the one that had her foot amputation, it is by far the most affected with lymphatic and vascular malformations. That entire leg is discolored with a deep port wine stain. The typical pattern of KTS is that the tissue underlying the discoloration is significantly affected.
Best description is that the underlying tissue is like a wet sponge that grows and recedes according to how the lymphatic fluid is draining on a particular day. The intricate mapping of the lymphatic and vascular system has gone completely awry in Quynh, and will always be this disease's biggest challenge.
Risks of an invasive surgery include major bleeding, lack of healing due to drainage issues, abnormal skin breakdown, and infection.
So, though her dislocation could be surgically corrected in a typical situation, we are choosing to not take the risks. The assessment of benefit versus gain clearly is too risky for this momma and daddio. Though saddened to face what this might eventually mean for her mobility , we feel like this is the best decision for Quynh.
Dr. Aronson was kind and straightforward, and very thorough with Quynh...and I think relieved that we were all on the same page. We appreciated his reasonable and very knowledgeable thoughts; that though he could fix her bones, it might mess up allot of other things, and it wasn't worth it.
An answer is what we needed, and we appreciated his honesty.
He will see her in another 6 months to see if anything has changed. Meanwhile, she is to walk as much as she likes, and continue to do all the new things she is trying. Amazingly, her body (and those of others with hip dislocation) will sometimes form its own base for that thigh bone. It appears that this is happening in her case, or she would not be as mobile as she is. We speculate that cartilage has formed a temporary socket for her bone to move within and around.
And...we'll pray that that will work for as long as possible.
Amazing. She is a miracle...and for now...we wait and see what's next...
Enjoy these fun pictures of our girls as Kimber danced with her company this weekend in competition, placing very well, and invested several hours in making her special "good luck" gifts.
And, miss Quynh happily back home where she reigns as queen of tea parties, and finding the comfiest places in the house to kick back. She is standing alone for several minutes now and beginnings of first independent steps are coming!!
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