Tuesday, January 21, 2014

Here we go again

Oh, boy. I'm not even sure how to start. I keep stopping and starting, backing up and starting again. I have a friend who has a son who was born preterm, and she always shares her heart, good or bad, happy or sad, and so I guess I'll follow her lead and be transparent, too.

And through my tears, I'll just tell you I'm tired of seeing my girl suffer. I'm tired of seeing her pain, both physical and emotional, and I'm tired of surgeries. She is TEN, y'all. And today Barre', McKenna and I met with Dr. Gray and talked about her next THREE surgeries. Dammit.

So. . . her scoliosis has increased to around 55 degrees. *sigh* It just keeps getting higher and higher. And the higher it gets, the harder it will be for Dr. Gray to do her surgery. He had talked at one point about putting in growing rods, but he feels like the best course of action now is to do the spinal fusion with rods. This will, of course, stop any growth in that area, but she will continue to grow above and below the level of fusion. Since she unfortunately grows so slowly, it shouldn't amount to a lot of lost adult height. It will mean though that she won't have to wear a brace anymore (she has worn a brace for approx. 6 years), her shoulders will be symmetrical, and most important of all, she won't have pain in her back, neck and shoulders. She will be in the hospital about a week for this surgery, tentatively planned for June.    


 


She also needs to have the hardware removed from her hips. They have done their job and need to come out before bone starts to form around them. In the past when he talked about doing this, he said she would be in the hospital about 4 days. He said we could probably do this at the same time as the spine. However, I just don't want to do it this way. I know because she is such a tough little thing, she probably COULD handle it. But SHOULD she? I just think it's too much. This is 2 big surgeries at the same time. So unless he can assure me that it's really no big deal, I just think we'll have to come up with another plan. And Barre' agrees with me. I know it will mean anesthesia for an extra time, but I think we just have to think about her little 43 pound body and how much we are asking of it and of her.

Her ankles are looking really good. So good in fact that the screws are probably going to have to come out sooner than we thought. But again, we just have to prioritize things, and right now, they are just at the bottom of the list.

So for now, the plan is to return to Cooks in Ft. Worth in March during Spring Break to have several MRIs in preparation for this summer's surgery. This will be the third year in a row she has had surgery. This is getting old.

I was asking her if she was scared about the surgery, and she gave me her usual non-commital shrug. (Getting her to talk about her feelings is hard.) As she is SUCH a big reader, I asked her if she were a chapter book, would she be scared like maybe one chapter? And she looked at me a little bit and said, "Maybe one page."

Well, Mom is probably scared a whole chapter. . . .


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