Yes, that is what the medical types are now calling HRH. From that you can gather, correctly, that we still have no idea what is wrong with him. He had two skin biopsies this week and they were fine. We have had a Geneticist assess him, Infectious Diseases are due any day and he will be assessed for rare metabolic diseases by Endocrinology. I don't know if this means that cancer/cancer like diseases are off the cards now, I was too stupidly tired to ask at the time, but I will ask next week.
Meantime HRH is now in serious pain. He had a Cardiac Echo done on Tuesday and the technician pulled him down the bed by his legs. His mouth opened to scream in pain, but no sound came out. Yep, the silent screams are the worst! His blood pressure is now very high without pain medication and the poor little fella can't move his legs at all now.
On the plus side, he had a feeding tube inserted (on my request as he has lost so much weight) and in just two days it has done him the world of good. Look:
(warning, proud Mommy moment follows, but do look, it is lovely)
he's a beautiful child. I hope they figure out what's going on.
That must be heartbreaking, not to know what's wrong or how to fix it. But he's adorable, and I'm glad to see he can get at least a few moments of fun in.
He is sooooo adorable. Remember to be strong, assertive, and calm. I am referred to as "the puzzle" by my doctors, so I know what you are going through. Remember that you are the advocate for yourself and your child, so don't be afraid to be a bit pushy if things are a little slow. I hope you figure out what's going on. Good luck!
Jen,
I haven't been around lately so I've just started updating myself on how everyone is doing. HRH is so very lucky to have a fantastic mother like you. I wish everything good for you and your family.
About Me: Mum of 3 great children, one of whom has autism.
Wife, taxi service, blogger, internet addict, head cook and chief bottle washer in my *spare* time.
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he's a beautiful child. I hope they figure out what's going on.
That must be heartbreaking, not to know what's wrong or how to fix it. But he's adorable, and I'm glad to see he can get at least a few moments of fun in.
He is sooooo adorable. Remember to be strong, assertive, and calm. I am referred to as "the puzzle" by my doctors, so I know what you are going through. Remember that you are the advocate for yourself and your child, so don't be afraid to be a bit pushy if things are a little slow. I hope you figure out what's going on. Good luck!
Jen,
I haven't been around lately so I've just started updating myself on how everyone is doing. HRH is so very lucky to have a fantastic mother like you. I wish everything good for you and your family.gillian barre?