The kids are back in kindergarten, after a Monday off. MC deserve a break because she was a bit weak last Sunday, and papa's 'diagnose' is that it felt like her spleen is a bit swollen. This condition is relative to her having (HS) hereditary spherocytosis.
The condition is closely related with her hemoglobin and bilirubin levels. Thus, the blood tests.
We were watchful everytime she pee, because when it is dark red, then it is abnormal. We might have to bring her to the doctor. In order to avoid that, she must drink loads of liquid; and knowing this she toted her water bottle all over the house. I had to draw a mark everytime she takes a sip, to know how much she is drinking. That is how I religiously watch her. Oh, she had to visit the toilet frequently, but, the main thing is she is drinking.
She was also told not to run wildly around the house, because with her spleen presumed thick, we dont want her to hit it when she fall or bump on something. In our readings about her condition, there might be a chance that the spleen would burst, and we dont want that to happen. Because when it does, it would only end up in surgery.
Known to have affected only people of Northern European descendants, HS is not a well known condition. I was discussing this to one of my friends who during that time was at that time studying for her nursing board exam and she simply said 'WHAT'! She had to google it right there and then. One of my nieces here in Germany have this condition, too. When she had a severe attack while studying in France, she had to explain to them and show them her medical history. Or else they wont know where to start -- which is by making a blood test. Now that same niece moved to a small village in Germany, the small clinic where she's getting medical attention dont have an idea what HS is. She had to again, tell the doctor what to do by showing and explaining her medical records.
Now my husband is also a bit apprehensive for our planned vacation to the Philippines next year. I told him we simply need to bring all MC's medical records and try to explain as much as possible when needed. We have, after all, good hospitals in Manila, too. (He can attest to that as he underwent a successful LASEK surgery in Manila in 2006)
He is also consoling himself to the fact that we can always fly back to Germany for extreme cases. Oh, I am as always, optimistic that everything would turn out fine :-)
Now what is this business about look me in the eyes? This is for people who is curious enough to ask but doesnt bother to really know. When I explain to people who asked why MC skipped kindergarten; or like yesterday in gymnastics, why she wont join the group -- I told them about HS. They would simply not look me in the eyes and would find something else to do or someone else to talk to, to escape my soliloquy. I assume that they are afraid of their ignorance.
As for me, I would gladly shout to the whole world that I am ignoramus, too, when it comes to HS. For I might just find someone who could inform me in simple, understandable terms; why my little girl had to undergo the needle pricks every three months. I have stamped in my mind the practical needs of someone with HS. But other than that, I have yet to fully comprehended HS. All I know is that HS is not a disease, it is a hereditary condition.
I am really bothered that I cannot even explain HS much broader, in my own words. I even have to use links. That I have to call my husband to confirm something, yet he had to call me back as he had to google. Tama ba naman yon? Frustrating, really.