Then and Now

I couldn't write this post yesterday. In fact, I am having trouble writing it now. But writing it is better than having it bounce around in my head. Ok, that won't totally stop.

Then:       Four years ago, yesterday Owen was 5 weeks old. It was the first of a string of terrible days, but ultimately the worst day of my life. He was not eating well and doing a heck of a lot of spitting up. We were on our second acid reflux medicine, about to switch to the third. I was letting the doctor make these changes even thought I knew it wasn't acid reflux because, well he was the doctor. (I've obviously learned my lesson too follow my guy and question anything that doesn't seem right). The morning of October 4, 2008, Wes fed Owen some formula. We were supplementing the milk he was getting from me. I couldn't do it. I couldn't feed him the formula for a lot of reasons that I know now were pretty ridiculous. I'm thankful that I have an understanding husband who fed him the formula without saying anything to me, and dealt with a bit of crazy coming from his postpartum wife. Owen spit up, and when I can downstairs Wes told me that he had fallen asleep and was in he pack n play. Something made me go check on him. He wasn't asleep. He lay there with his eyes wide open. I turned on the light and saw that my baby was a very frightening shade of grey and non-responsive. Off to the hospital, then critical care life transported to a hospital downtown where he took up temporary residence in the PICU. If you know us, you know that this was merely the beginning of a very long road. We have not reached the end of the road, but feel blessed that the life threatening stuff is over. We feel especially blessed to have this brave little boy in our lives. He makes us laugh every day and has taught us things that we certainly didn't ask to learn, but we are better people for it.

 
Now:       Owen celebrated his 4th birthday at the end of August. He is healthy and thriving. He is loving his new school and doing so well. When I meet new people and something comes up about Owen's birth defects, the most common reaction is shocked. (This has happened a lot recently when I talk about our Walk for Wishes team. I'll be blogging about that very soon.) Yup, he looks just like any other 4 year old boy, unless of course you notice his leg length discrepancy. Speaking of his leg, he has recently been telling Wes that his leg gets tired (the short one). We have an appointment with his orthopedist on October 29. I hate this, I don't want to do it. Yes, I know I have to do it. Yes, I know that even though the leg surgeries are going to be awful and difficult, we will get through this too. Wes thinks it may be time for a lift in his shoe since he has grown. I am terrified that she will want to do the surgery now or soon. I really can't think about it or I could actually drive myself crazy.
Now for the good news. We had Owen's annual urology appointment on September 13. I dread it every year. Any mother whose child has had a serious or life-threatening illness knows the feeling of waiting for the other shoe to drop. Maybe the reflux is back. Maybe his kidneys won't look the way they should on the ultrasound. To add to the normal worry, Dr. Gazak is now retired and this was our first time seeing the new urologist. Frankly, I was very upset. I wanted Dr. Gazak. I have put so much trust into him. He literally became like a member or our family. Well, that wasn't an option so I did what was best for Owen. I sucked it up and took him to see the new doctor. He's good. He's nice. I felt like he talked down to me a bit, but he doesn't know how knowledgeable I became about Owen's bladder defect. And maybe I was looking for a flaw because I felt like I was cheating on Dr. Gazak. Most importantly, the visit couldn't have gone better. His labs looked great, all of the levels in his blood were on the low end of normal. I already knew that going in because I know what all the numbers are supposed to be. This means he STILL has normal kidney function. No way should that be the case, but it is and I am thankful beyond words. Even better, his ultrasound looked great. The other shoe did not drop. A huge weight has been lifted off of our shoulders, and he doesn't have to go back until next year. Thank God!

A very quick Ortho update

I just had a nice talk with a friend. Actually nice talks with 3 friends today. I've said it at least 20 times today about Owen's Orthopedic appointment... "I don't want to talk about it." And I still don't. I also know that a lot of people are thinking about and praying for our family and who really care about Owen. Those people deserve to know the gist of what happened. I apologize that all I can give you right now is the gist. This has bowled me over, left me sad, confused and hurting. Oh and very angry, with no one to aim that anger at.

Owen sees his Orthopedic surgeon once a year for follow ups for his congenital short femur. They take x-ray, measure his body as well as his bones on the x-rays. Last year his femur was about 2 1/2 cm short and his tibia was maybe 1 cm short. The tibia has never ever been a concern. His doctor had every reason to believe that it would be left alone. Wrong.

Three main things happened today, all of which are very upsetting to me as his mother. 1.) His tibia is now 2 cm short and will also have to be lengthened. Twice. 2.) His doctor is considering doing the surgeries at different times than she originally though. Instead of 8ish and 14ish, she is now considering 5ish and 9ish. I can't even talk about all of the reasons that a leg lengthening for my 5 year old makes me cringe and want to be sick. Last year, it was something that was being done by some surgeons in the orthopedic community, but his doctor wasn't convinced. Today she told me she has done it quite a bit and Owen may be a candidate for early lengthening. 3.) Owen was born without an ACL in his left leg. As Owen's body has grown and developed, his orthopedist has been able to gain more and more information from his body. Today was the first time she knew that both bones would be lengthened, and that the weakness in his knee could be an issue with that. She will have to worry about subluxation of his knee.

I'm sorry, that is all I can manage for now. Intellectually I can process these things and have very rational thoughts. Emotionally I am a wreck. One of the things I hear a lot is "it could be worse". Do people think I don't know that? Guess what, this is MY worst, OUR worst. Please try to understand that.