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It's Not That Simple

November 20, 2008

Thank you for all your thoughts and prayers today! We wish that we could tell you that the metabolic doctors have found the reason for all of Lucy's issues, but unfortunately it is not that simple. Some of Lucy's labs are showing signs of a possible metabolic link, although they are hesitant to diagnose it as such. We have learned that whatever Lucy has it is NOT easy to diagnose, if it were we would have found it by now! So now what? Lucy had more lab work done today. As parents we are tormented by the fact that our little one has been poked and punctured so many times! Add to the torment is the knowledge that Lucy is a very difficult baby to draw blood from as well as get any urine samples. Because of her hospitalization last week, she had poor vein access today and it took their IV specialist four attempts before taking her blood from her scalp. They needed me to give them permission to make the fourth attempt today as they are only allowed to try three times before giving up. This decision was perhaps the most difficult for me to make thus far, as she was obviously in pain and we needed these labs today. It was very difficult to watch, comfort, and hold Lucy through this! Our hope in doing all of this is that we are able to find some answers to her medical mystery. It is getting increasingly difficult to say yes to more tests and procedures. We are Lucy's voice in all of this and we can hear her loud and clear, we just need to express her needs to everyone else involved in her care. We are blessed to have the support of so many friends, family, neighbors, our pediatrician, and people whom we don't even know but are praying for our little girl. With all of this support we will get through this, we have to!
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Anonymous said...

It sounds as though you are getting to close to knowing what is going on. We can only hope that all these test will be worth while and soon coming to an end. Elise wants to say "Hi" to all her cousins. As always, thinking of you, Carey and Michael