Trinity Update for Thursday


As I sit here typing I can glance up and see Trinity sleeping peacefully in her fancy hospital bed. We were able to hold her quite a bit this evening, so she is pretty relaxed. I think it helped me relax a little bit too. I don't think I always appreciate how taxing this whole situation is. But God is good and He gives me strength to run the race. I know that I would not be doing so well if I didn't have His peace and strength. Holding her helped too, and talking to Autumn was great this evening. We talked and cried a little. I think that about once a day or so both of us have to let it out. We try to stay in the present because worry doesn't actually help, but it takes effort to stay there sometimes. And holding my precious baby girl helped too.

I didn't mind that she was sleepy, instead I was able to enjoy the fact that she was holding my finger and playing with it a little bit for about 45 minutes. It was a little piece of heaven for about an hour.
It was a little bit of a tough day to swallow on the diagnosis front. We met with Dr. Bettis, who is one of the premier neurologists on the west coast, only to discover that Trinity has him baffled. He and the pediatrician tossed ideas back and forth for a little bit, only to shoot them all down. There are still some more tests to run, but we're running out of things to look for.

The results from OHSU for the metabolic disease tests are complete, but we haven't been able to hear what those results are. The lab called while the on-call pediatrician was in the middle of a procedure, but when he called the lab back they told him that the guy that he needed to talk to had left for a conference or something. They wouldn't discuss the results without this particular guy being the one to do it. So we wait until the morning on the lab results.

They were going to do another lumbar puncture, but elected to wait until the aforementioned lab results came in.

So we remain in a holding pattern. Trinity is getting better little by little, but not quickly enough. Thank you so much for your prayers and thoughts, we feel them more than you can possibly imagine.
Love,
Aaron, Autumn and Trinity



Trin and Dad playing

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