Yesterday we went for our yearly follow-up with the genetics doctor from Denver. The doctor was so impressed with all the progress Bailey has made. He couldn't believe how well she was walking, climbing, running and talking. The bad news is that he had NO news for us. He said that she was way too advanced for the syndromes he may have tested her for. I guess that is good news, but it is so frustrating not having answers! It really doesn't affect us now, we would still be doing all the same kinds of therapy. But it would be nice to know what Bailey's future looks like - will she be self-sufficient, will her life expectancy be normal etc... We also haven't been able to answer if this same developmental delay could repeat itself in more children. When we got pregnant with Beau, Clay was very worried about that happening. I did not worry as much as Clay, I had an inner peace that all would be well, and as you can see, Beau is quite well :) As we get closer to feeling ready for another child, my worries have peaked. I know that the Lord will not give us more than we could handle, so no matter what happens, I will be okay. I guess I just have to have faith and know that all will be well for Bailey and our family. The one thing that the genetics doctor and I agreed on was that Bailey's delays probably have to do with her neurological system. There is a great Neurologist from Primary Children's that comes up to Jackson once a year. We have seen him a few times and have not been able to find answers there. I just made Bailey an appointment to see the Neurologist in April and her awesome Pediatrician in March. I hope that we can find answers this time. If not, we will continue on with life for another year, and go through all of this again.
2 comments:
Your little girl is so darling. I love to smell my kids' hair too. I think it smells like heaven. I hope you get some answers soon.
Jerilyn & Clay,
What a beautiful little girl. What a blessing to have her. The thing about diagnosis is that it isn't any guarantee either... some of those children who were diagnosed "won't ever be self sufficient" have gone on to surprise everyone with their self-sufficiency!
My mantra is "It's ok, because it has to be ok!"
Hugs, Joanie
PS We met you years ago in Palmdale when you came to visit with Clay.
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