Friday, February 20, 2009

This is Joshua.

(You want to eat him up, don't you? Don't worry, he has that effect on all of us!)

Joshua was born with multiple limb differences. Doctors have been unable to pinpoint a specific diagnosis for Joshua's condition because the characteristics of his disorder do not fit neatly into any one diagnosis. Several theories include femoral hypoplasia (without unusual facies), proximal focal femoral deficiency, caudal regression, and sacral agenesis/dysgenesis.

His laundry list includes the absence of both femurs as well as the fibula in his left leg, absent hip sockets (his legs are held in place and supported by soft tissue only) a misplaced left scapula, his left arm is 3/4 of an inch shorter than his right, sacral agenesis (partial absence of sacrum (he is completely missing his coccyx also known as the tailbone), and sacral dysgenesis (the part of the sacrum that does exist is malformed). Fortunately, many of the problems that are associated with sacral agenesis/dysgenesis (and/or caudal regression syndrome) such as neurogenic bladder are not currently present (although a urologist monitors him closely). Unfortunately, we have very little history regarding his birth mother, her medical history or her pregnancy and so determining the cause of his condition is almost impossible. Our best guess is that his mother may have had untreated diabetes during her pregnancy which can often cause these types of deformities (there is very little prenatal care in the more remote parts of Uzbekistan, so this theory is probable).

We brought Joshua home from Uzbekistan when he was 10 months old. At the time he could not sit unsupported and would roll to get where he wanted to go. He now sits completely unsupported (he does not even use his hand(s) to balance), can crawl at lightening speeds, can climb up and down stairs and can walk with assistance.

Five months ago he was fitted for a prosthesis for his left leg (which consists of a tibia, ankle and foot). The prosthesis slides on over his existing leg, held in place by a strap that wraps around his waist. This prosthesis evens out his left and right legs making it possible for him to stand, cruise and walk. With the aide of a miniature walker (or mommy), Joshua is also able to walk.

Quite frankly, the only special need Joshua really has is that he is shorter than your average two year-old. I have found that this isn't necessarily a bad thing. For example, while he may be able to throw things into the toilet (a favorite pasttimes of his), he is not tall enough to reach the handle to flush, thus saving me many a phone call to the plumber!

Truthfully, there is nothing that Joshua cannot do. He is possibly the most stubborn and determined child I have ever met and because of that, I am excited to have a front row seat to all of the amazing things he will do in life!

(If you are wondering why I don't have as many pictures of Joshua. . .it's because he never sits still!)


Jenny Ramsey said...

this little man inspires me. God bless your family Val, you are all so amazing.

Jen said...

aww Valerie he is an absolute doll!! I love his little face!!