This Week

I am a ball of nerves this week as we are heading to CHOP on Friday for one of those "oh so important" appointments with Lucy's metabolic doctors. I know I have said that I am trying not to put all our proverbial eggs into one appointment, but guess what, that is so much easier said than done! At this appointment we are hoping to get lab results back from the labs that were drawn just before Christmas. As you may have noticed from our posts, our appointments with all of the Lucy's specialists have slowed down some since the end of January. It has been nice having the time to think and digest all that we have experienced or are experiencing without having to go to so many doctors appointments. Many of you would be surprised to know that we have been fine with the waiting up until this week, but this week Drew and I are losing our patience and are very anxious. We are not sure what we want these labs to tell us. On one hand, getting results back that confirms SCHADD would give us a diagnosis and would thus allow us to make more informed decisions about Lucy's medical care. On the other hand, getting results that don't confirm SCHADD would mean that she does not have this disease but then were back at "what is it"! A dear friend of ours said that she is going to pray that we get "answers", I really liked how she stated that. I'm not sure what that means as far as these test results go, but getting some answers would be really helpful right about NOW! I have been keeping so many of my feelings about Lucy positive because I am "a glass half full" kind of person, but there are things about Lucy that are still so concerning. Her tone is something that has improved, but is not great. It is hard to describe but she feels kind of like Jello, firm but wobbly. I keep telling myself that she is progressing in her gross and fine motor development, but she doesn't have the same strength that my other kids had at this age. I know, I know, I can't help but fall victim to comparisons. I know all kids develop at their own rate, but I am comparing muscle tone not intellectual development. She has gone from not eating any solids to eating several meals a day, but this has come with so much trepidation. Is what she is eating causing her discomfort, why is she having so many bowel issues? Ahhh, this is an area that is so frustrating! Recently, she has been a terrible sleeper. Is this because of her continuous night feeds, is it the formula, or is it just teething pain? And one of the biggest concerns we have is will Lucy be able to grow on her own without the need for supplemental feeding? It is not so easy to deceiver what are her individual issues. Like I have said before, we are trying to take all of this one day at a time!