Whew! We survived our two whirlwind days in Atlanta. This will have to be quick because I am about to fall over, but I am afraid there will be no other time to do this. The next few days aren't any slower.
Yesterday, Clara, Ms. Peggy (her PT that does her hippotherapy), and I went to Atlanta to visit the orthopedic doctor. He came highly recommended by multiple sources....doctors, PT's, friends, and patients. We were not disappointed. He was very thorough, and the short of it is that Clara still has her tibial torsion and he hopes it will get better by the time she is 9 years old, as that is typically when it straightens itself out. If not, she will have to have surgery, but we are not going to worry about that and will cross that bridge if, and when, we come to it. He was concerned about the length of her femur and humerus and said it would be worth consulting with a geneticist. Well, what do you know? That was who we saw today. :-)
Clara has had many, many quirky things going on since she was born, and I have always said that all these things were like puzzle pieces and had to add up to something. Over and over I have been told, "no", but for the first time, I had a doctor look at me and tell me that Clara is like a puzzle, and we just need to fit together the pieces. FINALLY!! Someone who has the expertise and is willing to take the time to figure out what all we are dealing with. I do not have all of my notes in front of me, so I will not be able to put in all the "big" words, but the short of it is:
...that every test that has been done on a urine sample of hers has come back with "ketosis". No one should be in a state of ketosis all the time, so there is a possibility she has a disorder that relates to this. We are doing further tests and will hopefully know that, for sure, soon. I think it is fairly treatable, but not curable.
Her leg length could indicate that she has a form of dwarfism. Whatever the word for that is, she would be the "hypo" version, so not a really little person, but still smaller than most typical people. She is already short for her age, and considering that Jeff and I are both above average in height is more confirmation. She will need a skeletal survey to determine that, and even if she does have it, it will probably not shorten her life. It will just be something we have to monitor, so again, I don't have the energy to worry about it right now. I will cross that bridge if, and when, we get to it.
There are many things I have noticed from the beginning (I don't want to discuss here for reasons of privacy), that could possibly indicate a chromosomal problem. Again, we are not to that bridge.
So what part does the mito play in all of this? I am not sure. We (Dr. Kendall, Jeff, and I) are taking a step back and taking a fresh look at our Clara. Her issues do not fit neatly into the "mito" package, and this is the first doctor to take the time to help us figure it out. I cannot express in words how EXTREMELY grateful we are for this doctor. She is an angel from heaven and I will thank the Lord for her every day of my life. She has such love and compassion, as does her husband who runs her practice with her.
I know this is short, especially for me, but when I say I am tired, I am really about to fall over. Before I go, however, I would like to thank:
Ms. Peggy for taking time out of your life to go to our appointment yesterday. We are so thankful for the way you have loved and cared for Clara. Thanks for helping me to process and understand all the doctor had to say. We love you!
Meredith and Ms. Linda who came to my house and packed boxes like crazy while we were gone today.
The sweet friends who are coming tomorrow to pack boxes.
Thomas and Diana for keeping the girls today and tomorrow. We love you both and are so glad you and the girls enjoy each other so much.
Everyone who prays for Clara, and for not tiring of praying for her. We still have a long road ahead of us and greatly appreciate your prayers.
Our Atlanta friends who had us over for dinner tonight after the appointment. We thoroughly enjoyed our time with you, and wish it could have been longer.
The reality that we are leaving is starting to sink in and I am already getting homesick. I am thankful, however, that I have such a big distraction right now. Otherwise, I think I would obsess over some of the things I learned the last two days, as if obsessing helps.
Tomorrow we pack some more and then we will be gone Friday and Saturday and busy most of Sunday. We do have another appointment with Dr. Kendall on Wednesday that we did not expect, but are thrilled to have, so busy times are here. I will try to post updates as frequently as I can.
Love you all!!