Life's Journey: Medical Technology-- Amazing!!!!

When I started my blog I felt, out of my comfort zone. But now that I have shared some of our life, I want to keep sharing. A very good friend of mine said: "Just think, you can share all these memories with Josh, when he is older and married." I pray that we will be able to share this together.
As I have explained in my previous post, Josh was born with a very rare deformity. In 1998, the year he was born, we were told that there were only 14 known cases in the world with Encephalocraniocutaneous Lipomatosis- which I will often refer to as ECCL. (It took me a year to learn how to pronounce it- still have to look up the spelling every time).
Josh has endured much in his short life, he has had many hospital trips, surgeries, been poked and prodded. But if you know Josh at all, he has taken it all in stride. That is just the way he is. Just confirms what we believe: God knows ALL and plans ALL-- what I'm trying to say is, Josh can deal with all these stresses. John and I often think if it were one of our other children, I don't think they would cope the same way.
At the age of 4, Josh had already had several "corrective" plastic surgeries. He was getting to the age that he noticed that he looked different then the other children.
We had a GREAT plastic surgeon, he was always very good to and with Josh. At one of our many appointments he asked Josh how he was..... Josh paused..... then he quietly and shyly asked the doctor if he could get "new hair". Because of all the surgeries and the removal of the fatty tissue, Joshs' hair was not growing in the middle of his head. He had a small patch of hair at the front and nothing in the middle.
The surgeon explained that we could try "tissue expanders"..... of course, we had never heard of such a thing.
He explained that they would cut open 3 separate spots in Joshs' head and insert 3 balloon-like expanders between his skin and the skull. They would be very small to start with, but we would go to the hospital on a weekly basis and get injections. So after talking it over and hearing if there were any risks. We decided to go ahead and get Josh "new hair".
The plan was to start as soon as possible, meaning we had surgery within the next month. We were hoping the whole process would be done by Joshs' 5th birthday. We diligently went to the hospital every week to get the injections, and the expanders grew and they grew.
Josh being the outgoing, carefree spirit that he is, didn't mind walking around with these balloons in his head. He often choose not to wear the hat when we went shopping, church, or to school.

I look back now, and think he is honestly, such a trooper, I am so proud of him and the way that he has dealt with his trials.When you are in that moment, you just do it, and don't really think about how well or not well it is going. But now I cant believe how strong he was, for being so little, he never complained about the hospital trips or the countless needles. Again, God was with us and kept us strong.
Over several months the expanders got to the size that the surgeon was quite satisfied that the next surgery would be a success. Josh was having surgery AGAIN, and only 1 week before his 5th birthday.
We were so excited!!! Josh was gonna have his "new hair" before his birthday, that is all he talked about for months.
The tissue expanders were removed, and it was a success. I remember walking into the recovery room and seeing Josh laying on the bed, all I could think was, his head is round again. I couldn't get over how round it was. It sounds kinda silly, but after looking at this "out of proportion" head for months it was nice to see the roundness of his little head. The surgeon did a marvelous job. The hair line was moved up so the bald spot was no more.

I forgot to mention, that while they had Josh "under" they decided to remove the dermoid on his eyelid as well. You can see the incision on his eye on this picture.

This is just one of the many stories that I have regarding Joshs' life. I am sure, now that I have joined the blogging "world", I will remember more and more.

God has kept us strong through the years, and we depend on HIM to continue to do so.