A Very Special Case.

This life that I'm living is my story. It was written before I was born. A beautiful story full of tears and smiles, exhaustion and energy. I'm not in control of most of my story, just how I choose to "be." I want to be a character full of grace. I want people to think of my story and smile, but mostly I want to make my maker proud. Some days feel like they'll never end.  I feel like I'm in over my head with paper work, phone calls, and children, but when I close my eyes at night, I'm certain this is the perfect story for me. This past Tuesday I was having a "blah" day. I was discouraged in the fact that it seems like lately when we get one of Case's problems under control 2 more rise up. It's like taking one step forward and two steps back. When I got the mail that day there was a small box with a simple bracelet from a dear friend. You see, my birthday is tomorrow and she got me a gift but what she didn't know is that it would co...

This kid is an adventure, every day brings joy, grace and blessing ( oh and sometimes tears). This tiny man (14 pounds 10 ounces and 26 inches long) has taught me more about life, love and strength than any pastor, teacher or book ever has. He has pushed me to almost breaking and kissed me when I cried. He brought this family to a new normal and has shown us how special, "special needs" really are. He has taught us to live in today and deal with tomorrow when tomorrow comes. He is our blessing, our lesson and our tiny teacher.;) And now for an update on the little-big man: Case can walk and does sometimes (probably about as much as he scoots.;) He really doesn't talk. He can say a few words but rarely does. We have a consult with a Speech Therapist, August 30th. He does communicate well with pointing, shaking his head "no" and an adorable new nod for "yes". He seems to be tolerating his J feeds of Nutren JR. He does still retch some mornings for no ...

This week was exhausting. It started out with Case's fourth surgery and ended with his doctor adding two more specialists to his already long list. Surgery went pretty well and recovery was not too bad. He had a good bit of pain and discomfort (for that I gave him Tylenol with Codeine most of the week), fevers,  some vomiting, constipation and is getting 4 teeth now. He was able to get a stitch and weight (to keep the left testicle from floating back up to his abdomen) removed at his local Pediatrician's instead of going to Pittsburgh. I asked if that was okay and the urologist okayed it (it saved us a long trip and a bit of money:). Friday, while at his Pediatrician's, I asked again about the rash that he had since April or May and he said he thinks it's chronic and set him up with the Children's Hospital dermatologist. He also set him up with the dental clinic out there. It seems Case's tiny mouth doesn't have enough room for all his teeth… Case was switch...

These past two weeks have posed a few minor challenges. It seemed like as soon as one thing worked out some other problem came up. Shortly after I accepted the thought of a GJ the crazy insurance battle began. Friday it seemed the insurance battle was fizzling down and surgery is on for tomorrow then soon enough Case's pump broke. Completely and out of nowhere. We were camping and with bad service so Case went a little while without food. Once I did get home and called Chartwell (the feeding supply company), I wasn't sure if they would send one cause Case's insurance is still working on covering them. Well, they came to the rescue (again) and sent him a new pump no problem (I love them). That happened yesterday. I was talking to a friend a few hours after that was resolved and said, "Sometimes it seems like I can't catch a break. Like it's one minor bump after another." Sure enough, not an hour after I said that the gigantic tree infront of our house crack...

It's true. I am out of control. I had no control over how Case was made. I ate the right foods (ice creams good for unborn babies, right?). I took my vitamins. Drank lots of water. I didn't do drugs, smoke or drink. I rested a lot and still Case was made different. He was born with "defects". A child that would have possibly been medically aborted if he was in a different belly. All that to say he was made the way God made him for a reason and I was out of control. Even now I can't control how things go. I can't make him eat and have been having a hell of a time making him grow. Sometimes I get a real wake up call as to how our of control I really am. A week or so ago I realized Case's medical card stooped and he was thrown into an HMO by "random selection" (WTF, right?). Long story short by the time I realized what was going on it was "too late to change his HMO for July" and the HMO I picked wouldn't go into effect until August. N...