Good morning! So, since I absolutely loathe cryptic posts and I began sharing Charlies journey specifically to raise awareness for Hydranencephaly I have decided to share with you the concerns from her most recent appointment. Char went in for her 4 year (4 years old, how did that happen?!) appointment. We knew her weight is a concern, she doubled her weight since last year, after having her g-tube placed. The g-tube has been a godsend in so many ways and I sincerely believe she wouldnt have made it another winter without it. However, going over some other changes with Charlie with her pediatrician, it was like a light went off in her head. It would be incredibly rare (we all know how incredibly rare things do, indeed happen) however, she is concerned that Charlie could potentially have Cushing. This is when a growth or tumor develops on the kidney causing an influx in cortisol levels. If it were Cushing she would need to have the growth surgically removed and is a relatively easy fix, though Im not a huge fan of any surgical procedure when it comes to Miss Charlie. I will be calling her endocrinology team this morning to set up an evaluation. I want to clearly state, that at this point, Im not overly concerned and Im very skeptical that it is Cushing. However, we would appreciate any good thoughts you could send out way, especially next week when we bring her in for further testing and hopefully we can get this weight issue resolved. We hope you all have a wonderful day!! xoxo
Posted on: Wed, 20 Aug 2014 12:57:52 +0000
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