December 2005 Entry: The last time I wrote I mentioned that I always felt like Iwas waiting for the other shoe to drop. Well, it did for us a few months ago, but thank goodness all is well now.

After Abby's regularly scheduled expansion in late August, the wound site appeared to not be healing. After watching it closely for a period of time and being in touch with Dr. Betz, we decided to make the drive and have him look at it. It appeared that the incision over the clip part of the rod was not healing. Because there was not much soft tissue in that area, and it was the scar site (scars are never as strong as original skin), the clip portion of the rod was irritating what little bit of tissue was there and causing it not to heal. We decided to wait it out a little longer to see if it would heal on its own rather than have to put her through another surgery (just one month after the expansion). We were told that we did not want the wound site to open or it could introduce infection. Armed with that knowledge we went home and unfortunately 2 days later it began to open and drain. After a frantic "after-hours" phone call to Dr. Betz on a Saturday, we were scheduled for surgery that Monday unsure of what would be found. Once again, we had someone looking over us because during her surgery there were no outward signs of major infection (pus) around the hardware. While Dr. Betz had Abigail in surgery, he decided to free up tissue that had been scarred down, move extra tissue from surrounding areas over the clip portion of the rod, bend the rod to change the contour of the rod as to put less pressure at the area in question, and finally, he decided to replace the rod with a longer one.

Overall, things went quite well and after a 5 day stay in the hospital we could go home! She had to stay so long because we needed to wait and see what the cultures would grow that were taken during surgery. This would let us know if infection has reached internally and if so what types of antibiotics it would be sensitive to. We found out that she did have some evidence of infection internally and so she was treated with an anitbiotic that the infection was sensitive to. Follow up tests several weeks later finally revealed that all was clear and Abby could discontinue her antibiotics. Now, I am happy to say we are feeling pretty confident with how Abby is doing and all is back to normal. It was quite a scare and emotionally devestating at the time - but we were lucky - it could have been worse.

One silver lining to this cloud was that I had been dreading the time when Abby would have to have her rod replaced - the anticipation of knowing exactly when that would happen would have been torture for me, so the fact it was done during this unscheduled surgery was truly a blessing. I added a page about rod replacements so check that out if you want details on that part of the process.

May 2005 Entry: It is so hard to believe that Abby has had 3 follow-up procedures since her initial surgery in May of 2003.  In many ways it seems like a lot longer than just 2 years ago - there are many times I feel like we have been dealing with this for a life time.  However, I have so many positive and wonderful things to say about the outcome thus far that I hardly have any room to complain!  I can honestly say that you would NEVER know that Abby has titanium rods in her body.  Her lateral spine curve is in the low 30's making it difficult for anyone to notice unless they had the knowledge to look for it.  The actual device that has been implanted has no effect on Abby as far as any of us are aware (Abby is pretty verbal and open with her feelings and she would let us know if it were bothersome!)  She runs, jumps, skips, rides a scooter, "rough houses" with her daddy, and does anything and everything a normal 3 and a half year old would do, which includes falls, bumps, and bruises. 

In the beginning I was nervous all the time that she would somehow harm herself with too much activity and we do live with the awareness that rib cut-through is a possibility, especially for the more active children...but falling is a normal part of childhood and we have not wanted to prevent this "normalcy" (we are smart about it though and don't allow toumblesaults and headstands, or anything that causes excessive flexion of the spine) - as time hs gone by and she has sufferred no ill effects from her falls, bumps, and bruises, our worries get pushed further and further in the back of our minds.  That is not to say we don't think about it.

As her mother it is the first thing I think of whenever she does contort herself in a way that you know is not the best thing for her procedure - but so far we have been fortunate and all of her playing has not had any ill effects on the integrity of the procedures performed. I think worry will always be part of the equation. I would like to say that time takes all of that away, but I still find that I am "waiting for the shoe to drop" as they say. I often think that things have gone to well for us and that our good fortune has to end - no one knows the future though and so I try to focus on how well things are going for Abby now.

I will say that one of the hardest things to deal with still is the idea of the frequency of her surgeries. I find that the closer the time approaches for her next surgery, the more resentful I find myself over her having to undergo all of the procedures. I find that I begin to get more stressed and worry more and have a true sense of dread. It doesn't seem to matter that things have gone so well in the past - it doesn't prove much comfort in those days preceding her surgery. If I allow myself to think too much about the years ahead of us and the dozens of surgeries left to make it through, it is too much to handle mentally - I just can't go there. I find that focusing on just the one surgery ahead of us makes the "pill" much easier to swallow.