Wednesday, March 21, 2007

My sweet little Owen

Ok, so I know this blog is "mostly" about my sweet little Owen...but I just wanted to reitterate how I feel about him...he's so sweet (and little;-).

We had our trip to Indianapolis March 17th to see the specialists from around the country who came to the first ever LPA Midwest Conference. LPA stands for litttle people of America. Many people don't realize that Little People are also known as dwarfs. A little person usually has a genetic condition involving the growth of their bones, and thus can have varied health challenges. They don't typically attain an adult height over 4'10"-but most are 3-4 feet as adults.

My precious Owen was indeed given this diagnosis. The many geneticists who saw him found different variances that all point towards a likely diagnosis of a skeletal dysplasia aka dwarfism. They were not sure of his type as it is typically said there are over 200 different types. One specialist (who found the gene for Achondroplasia, the most prevelant type) reported he believes there are over one thousand different types.

It was an amazing day where LP's and average size people-parents, grandparents and various support people of LP's all came together to learn more about their conditions and ways they can better manage their conditions. The doctors who volunteered their time and medical services were outstanding. One MD who was not even scheduled to see us, took great interest in Owen, and he saw us sitting on the floor in a waiting area and he came over and laid on the floor on his belly and talked to us and cooed with Owen, trying to figure out if he could help us. It was amazing to experience this type of genuine and obvious desire to help. He was one of the doctors who told us that he believes Owen does have at least some type of mild skeletal dysplasia. By the way, Owen stole the show as everyone adored him all day long!

We were not officially diagnosed because diagnosis can be very complicated. Owen has already had various types ruled out. The typical route of diagnosis is thru exam, skeletal studies (done via full body X-rays), and sometimes blood tests. The blood tests are only helpful though, if you know what you are looking for. The head MD who was over Owen's care is the same physician who viewed Owen's x-rays at birth (he didn't actually examine Owen then). At that time he did not feel the x-rays led to a diagnosis. But with this examination, he told us that he too believes Owen will be diagnosed with a mild form and that it can be a big deal later in life or never amount to much other than less than average stature. He will see Owen May 16th in Indianapolis again, which is the same day Owen will be evaluated for his hearing/fluid in his ears, and he will see a urologist as well.

All in all, I am relieved. I just love him so much...I didn't really care what the answer was but I just wanted to know so I can know that as his parent, I am doing as much as can be done and that we can prepare for his future and watch for various complications that can arise. Whew, that was a long (and run-on) sentence. It is amazing to me to think that God loves Owen more than I do. But He does. It is also humbling to me to think that God decided that the very best parents for Owen are Tim and I. No parent envisions their children before they are born as anything other than perfect-per the World's standards anyway. I know Owen IS perfect in God's eyes and I believe he will be a small but mighty man of God someday. I'm sure his story will be inspirational to others and he will be a great testimony of God's perfect and wonderful plan for each of us. I look with great anticipation to his future-I can't wait to see how God uses this precious child to continually bring Glory to Him.

Please be praying that we do get a diagnosis and that it would be correct (as it is common to get many misdiagnoses). And also that Owen would continue to progress and gain strength. He has a lot of catching up to do, mostly because he was 2 months premature but also because he has other challenges due to his physical characteristics that make motor skills a little more difficult to learn. He is doing WONDERFULLY in the verbal category-we swear he says "hi!"

It is normal to have questions and concerns and I would be happy to answer these things. Additionaly, a great site with lots of info about Little People is It does a great job answering various questions and misconceptions about LP's, etc.

Thanks for continuing to check back on updates about our precious Owen...our sweet miracle baby.