Our Red Thread: Sporting a KAFO!

As I post this update, today marks six weeks since Lucy's external fixator was removed and her pink cast was put on.

It's also two weeks since their casts were removed!

The first few days after ex. fix removal, Lucy had pain and discomfort primarily from her hip area. It was swollen, very tender, and bruised from the tenotomy. (the surgical cutting of a tendon)

swelling bruising from hip tenotomy

But in true Lucy fashion, the pain didn't keep her down. Her new found freedom in "only" wearing a hip to toe cast was embraced. After ex. fix surgery removal, Dr. vanB. told us to allow her to "bear weight as tolerated." "As tolerated" to a spunky five year old just out of an ex. fix. interprets as "run, dance in circles, and ride all the rides at the boardwalk with your B.F.F.-- you're F-R-E-E!

suiting up with floaties and cast cover
before jumping in!

Last summer, Lucy's first summer home, we found out that she's a little fish. Loves, loves being in the water! Knowing that Lucy would be in this cast for four weeks and our extended family vacation was scheduled during this time frame (which includes lots of time at the community pool), I did some extensive on-line research of cast covers. I wanted to see if there was any possibility that she could swim while in a cast? The time and energy spent in researching was worth it. I found this website, that sold a "drypro" waterproof cast cover. The product touted that indeed one could swim while in a cast! The customer feedback on that site (and others) seemed to back it up. So we decided to give it a try. It was fairly easy to put on and worked wonderfully. A gift in that it allowed our girl fun times at the pool!

her smile says it all

Swimming was the highlight of her week!

Very early the morning after we returned from vacation, we headed to Philadelphia to have Lucy's cast removed and her new K.A.F.O. (knee-ankle-foot orthosis) adjusted and put on.

relaxing with snacks while we wait to be called to
cast room

nervous but ready to have her cast removed

feeling a little vulnerable with
her leg being full exposed for
the first time in four months

first view of her little leg revealing all of her
"battle scars"

I was very interested to see what her leg would look like, especially the pin and post areas from where the external fixator was placed. We were so pleased to see that all of the wound sites looked great and almost fully healed. Yet another answer to prayer.

Lucy's right leg is tiny and much smaller than her stronger and dominant left leg.

After the cast was off, we put Lucy in a wagon and headed down to the orthotics department where she received her custom knee-ankle-foot-orthotic. While a bit leery of anyone touching her vulnerable right foot or leg, she was willing to let the orthotist do what was needed in making the adjustments to her brace.

Until all was said and done with our visit, we made 3 trips back and forth between Dr. vanB. and orthotics department. An orthotic appliance really is an exact science! Not only are they keeping her leg in full extension (which was the correction made from the ex. fix.) but her foot needs to maintain correction at all times from the work completed via casts and pins last fall/winter. We are told that Lucy will most likely be in this full length brace (kafo) 23 hours a day (taken out of it for her twice a day physical therapy exercises and a bath only) for about three months.

Each new procedure requires an adjustment period. (the ex. fix., the cast and now the kafo). Lucy not only has to physically get use to each different appliance on her foot and leg but her gait is constantly being changed, her sleeping positions need to be altered. Pain and discomfort in new places and her psyche needs to wrap around the fact that she's yet again in another phase of transition!

Speaking of ever changing transitions, we moved our room mate of four months out of our bedroom. Lucy Kim is back in her bedroom and in a "big"(single) bed. The toddler bed is packed away and the space of single bed is better for one in a full length leg brace, especially when you need to roll over.

Some other fun highlights of Lucy's summer so far include a trip to our local park, riding the barrel train

and spending time getting to know her newest "big sisters" who are also from China (our family has had the privilege of hosting Naomi and Janet for a few weeks earlier this summer and they will continue to be part of our big 'ole family in the coming year!