Our Recent Trip To Philly

A week ago, we returned from a round of appointments in Philadelphia. Being at the end of the summer, we decided to make the journey a family affair by taking the entire family.

Apart from a visit to the Philadelphia Zoo, which happens to be the oldest (and on that particular day, the hottest) zoo in America, our visit was primarily filled with medical assessments centering on three areas:

Spine
Timothy loves his neurosurgeon (as do we), and the entire way to Philadelphia, Timothy was a broken record: "Go see Dr. Danni. Go see Dr. Danni."

As Dr. Samdani entered the room with his team of residents, Timothy shouted, "Look! Dr. Danni has friends!" All those years of medical school, only to be labeled a "friend"!

Upon looking at Timothy's x-rays, Dr. Samdani concluded Timothy's spinal fusion had healed perfeclty to the point of not needing any more back braces or protective devices. FREEDOM! In essence, Timothy was given the "all clear" . . . at least for the short term.

Timothy does still have a scoliosis and lordosis in his upper spine,. Should these curves increase significantly, surgery will be required, as such an increase could significantly compromise his heart and lung function. That being said, his upper spine has shown no signs of curvature increases over the past 6 months, and there is even the potential the curves may actually reduce on their own.

Either way, Timothy will require another surgery at some point (minimum 2 years) to simply remove some of the hardware in his spine. If he can get to age eight (when the human lungs fully develop) without any major spine changes, he will be able to further postpone any additional surgeries.

What we took away was simply this: Timothy is free to run, jump, tackle, and climb free of devices . . . and simply be a boy!

Hands
Timothy's hand surgeon happened to be in the clinic, and he graciously came by to give Timothy the once over. He thought Timothy's hands looked remarkable, with no need for additional surgery. He did, however, fit him for a thumb splint to get his left thumb sticking out further when he makes a fist. Although he has the physical ability to put his thumb in its correct position, he prefers to tuck his thumb inside his fist. His splint (called a "Joe Cool") will encourage him to give folks a hearty "thumbs up"!

Lower Extremities
Of his three appointments, this one represented the largest unknown. Timothy's lower extremities have never been fully examined, as conventional wisdom has led to us postponing such exams until his spine was more stable. Unfortunately, since Timothy's spine surgeries, we have noticed his feet turning in more and more, so we were a bit concerned as to what the doctors might find.

Were his hips out of alignment? Were his leg bones twisted? Were his knees rotated inward? Were his ankles contracted? All of these questions were on the table and in our minds.

After conducting his x-ray examinations, the doctor prefaced our conversation with this statement: "When it comes to walking, Timothy will probably lose a point or two for style, but that's OK!" We agreed, as we are very confident any style deductions will be more than made up for in personality!

He continued: "After examining Timothy's lower extremities, his hips, knees, legs, and ankles look to be very healthy given his syndrome. Everything is aligned properly, and there is no evidence of fixed contractures. So at this point, there is no need for any surgical correction."

Whew.

The doctor went on to tell us, by and large, what has happened is this: In order to compensate for his spinal curve over the years (which threw his center of gravity off significantly), Timothy has learned to propel himself very effectively with his "little toe muscles" rather than his big toe. Talk about resilient.

Try it sometime. You'll find your feet turning inward . . . and if you do it long enough, it will curve your feet as well! A la Timothy.

In essence, Timothy's muscles have grown and stretched in abnormal ways, thus we will need to correct everything with splinting. Beleive me, we'll take a splint over surgery any day!

Timothy was fit with a new pair of splints (which will fit completely inside his shoes), and we will return to Philly in a month's time to pick up his splints and to have them properly adjusted.

Once they are in place, we have been encouraged to get Timothy active in as many physical activities as we can. Of course, Timothy needs little encouragement from us in this area. It seems to be his specialty.

So, to recap:

- No surgeries
- Two splints
- Six hours of DC traffic
- One great visit to Philadelphia!

We'll take it.