Good news on Krassi

After two days without internet, I can finally update all of you on the good news we got on Monday...

Krassi is finally gaining some weight!!! Since his peak weight three weeks after coming home of 32 pounds, 7 ounces, he has been slowly losing weight, despite great efforts on our part to counter the decline. I had been really excited for his visit to Gillette on January 8th, expecting to see results of the week and a half that we'd been following the directives from the nutritionist we had seen, and were disappointed to see him at his lowest yet since the peak - 31 pounds, 1 ounce. But, on Monday, twelve days later, on the very same scale, Krassi weighed in at a whopping 33 pounds, 12 ounces! I still can't quite believe it, especially since we'd had a run of really bad eating days from him from last Thursday on, but at the moment I don't really know what to do except go with it! I definitely see Krassi as being capable physically of someday being able to do at least some self-feeding, so knowing that the steady drop has, at least for the moment, stopped, means that my thoughts of having to move to a g-tube and potentially losing what he's capable of taking in by mouth are greatly diminished.

Tomorrow I will take Krassi for a video swallow study where we will learn more about the mechanics of his food-handling skills. This will be a helpful starting point for introducing a speech therapist into his T/Th therapy routine. (At this point we're less expecting "speech" therapy, and more looking for feeding therapy, but as we've learned through Reuben, the two are very interconnected.)

Monday's doctor visit, at which we got the good news about his weight, was to meet again with the orthopedic surgeon regarding the results of the pelvic MRI that was done in early December. I've been apprehensive about the results of this appointment, knowing that we would either find out that he is or is not able to have the surgery to replace his dislocated hips, and if he is then we are faced with the decision: do we, or do we not? And when? Doing the surgery would require putting him on muscle relaxants which would greatly diminish his abilities in all other areas (but would prevent his imbalance of muscle tone from pulling the hips right back out of joint!) But doing the surgery will also greatly increase his self-mobility, especially as he gains weight. Right now when he bears weight, there is no bone-to-bone connection from his upper to his lower body - his upper body (pelvis and higher) is essentially resting on a muscle and tendon sling suspended from his femurs. [NOTE: I sure hope nobody who really knows their human anatomy is reading this because I'm sure I've got this all wrong, but if you consider it more as a word picture than actual precise information, it will suffice!] On the other hand, the surgery itself would be a painful and potentially traumatic situation (how in the world would I prepare him for something like this?!) at a point in his life when he's still dealing with the stress of simply living in a caring home environment! And additionally, if done soon, would coincide with a decrease in my ability to be as directly involved in his care as Baby arrives...There is no easy good decision.

So we were very grateful to hear that the decision was made for us. In the words of the very adept (so we've heard) surgeon we were consulting with, he would be "scared to do the surgery" to relocate Krassi's hips. This statement was made based on his own observations of the MRI as well as conversations he had with his collegues, and from what he was able to show us in the MRI, we were in full agreement. As painful as dislocated hips sound, the option of putting them back in would almost certainly cause more pain than the current situation does.

So Krassi will likely never be a full-time walker.

But we're good with that. We brought him home knowing that the "best" options were no longer available for this boy, but knowing that whatever options he does have here are absolutely, without a doubt, better than six and a half years from now being transferred to an adult mental institution where he would have been bed-ridden for the rest of his life. Alone. Even if he were to be bedridden here (which we're NOT expecting!) he would be bed-ridden at home with his family. And we are so grateful that we get to be that family.

Lots to do tonight, so that's all you get. I really need to update on the house progress, and have other thoughts to share as well, but tonight it's not going to happen!!