Julia has been very busy this summer, with three to five doctor appointments weekly. Julia has PT weekly, OT 2 times per month, DI, and Family Training. She also started Feeding Therapy every other week. The recurring quote I have heard all summer when anything new arises is "I don't know, it's just Julia". Her doctors, specialists and therapists have all been stumped by Julia lately. She is a one of a kind, special little girl. Julia is fearfully and wonderfully made, God has a mighty plan for her life.
On July 7th, Julia went to CHOP to see the allergist. He told me that he had never heard of dystonia and he said Julia was very "rashy". He said she has hives, eczema and atopic dermatitis. He did not give any real diagnosis of why she is having these allergic reactions, only tips on what to avoid on the future. So again, "it's just Julia".
Hives on Julia's face
Atopic dermatitis on Julia's leg
Eczema on Julia's legs
On Wednesday July 9th we went to CHOP to see the metabolic doctor and genetic counselor. The metabolic doctor told me that she wants Julia to see a cardio specialist in the Exton, PA branch of CHOP. Julia has to see a cardiologist because they think she may have something called "Dysautonomia" (a.k.a. Autonomic Dysfunction), which is a dysfunction in the part of the nervous system that controls heart rate, blood pressure, body temperature, and digestion. This makes sense, as Julia's body often has a difficult time regulating her internal temperature. If I give her a bath, her temperature can suddenly drop to 96.0. If she is outside on a warm day her temperature can just as suddenly go up to 101.0. Frequently her lips are purple and her hands and feet are beet red. The cardiologist will perform a detailed EKG and echocardiogram of her heart. The Exton office, which is about 1.5 hours away from us, has the only cardiologists in the entire region that specialize in juvenile dysautonomia. Because of this. they are booked up for 6 months in advance. Luckily however they did have a cancellation and can squeeze Julia in sooner. Can you guess what day her appointment is.....of course it's on her birthday, September 15th. That is just the way Julia's life is, with almost daily visits to doctors, therapists and specialists.
Julia's purple hands
Julia's Red Feet
Julia's Purple Lips
Please continue to keep Julia in your prayers! She is such a tough and strong little girl.
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