The big talks are coming tomorrow the topic: iron overload.
The importance of getting rid of iron that the body doesn't process. When patience receive red cells they are also receiving iron and their body doesn't naturally take care of the iron. Our livers process iron as our red blood cells die out (after 120 days). Transfusion kiddos (and adults too) receive more iron than they can process. A child, like ours, receives monthly transfusions where the body doesn't have a chance to get rid of the iron. It's interesting that Diamond Blackfan Anemia has the word anemia in it and anemia is associated with low iron and how ironic that these kiddos actually have too much iron and need help ridding their bodies.
Oh lots of information.... and there will be more on chelation tomorrow. The news about chelation is that kids don't want to do it subcutaneously, or orally, or intravenously - and the sad part is that once kids become tired of chelating then they quit or give their parents a tough time. So here's the thing - if they miss treatment for any amount of time - 5, 10 years, they don't feel bad. If they miss a blood transfusion they feel low. Missing chelation has no immediate negative feelings ..... 10 years later though, the body has toxic levels of iron pooling around internal organs and well, it's sad, unnecessarily sad. (it doesn't take 10 years for toxic levels of iron to crowd the organs) And it happens b/c young adults or even teens or even stubborn children are tires of shots, IVs, and daily meds that are controlling their lives and they just rebel. this is something we did t even think about when our feisty impulsive 4 year old turns ..... 8, or 12, or whatever the age is that he plans on rebelling - I'm not looking forward to that!
Today honey participated in a talent show and did somersaults and cart wheels until she was dizzy! Now we're all dizzy!
We visited with famous doctors to discuss out son's protocol and get into the DBAR, (registry) nothing like the registries we're used to in our small town lives.
Tomorrow, looking forward to quiet time in the afternoon so someone can get a nap - he hasn't had one since we've been here - he's really much better with a mid day rest! He's been loving playing all day in the sand box and on the slide!
We've found some great families from all over North America to connect with! So excited for that!
Gotta go- my eyes are falling out of my head I'm exhausted!
Again please excuse major silly typos! Auto spellcheck can be quite obnoxious.