Wednesday, 29 May 2013

Calcium/Uric Acid

Harry's left hip has got slightly worse so he's been referred for another course of hydrotherapy. The doctors also looked at a lump that has appeared on his elbow. This could be a calcification or a build up of Uric acid, so Harry's had yet another! blood test to confirm/rule out. He has calcification's on his ears which is also seen on children with classical Progeria. Not sure if these lumps appear elsewhere. A question for me to ask I guess?

Tuesday, 28 May 2013

Arthritis, Aches and Pains in those pesky joints!

As the warmer weather approaches then Harry's friends come calling for him to go and 'hang out'. This usually means a walk to the local park or to hang around the school field, chilling and chatting. For Harry, this usually ends in him being in pain from head to foot as a result of trying to keep up with his peers. Harry has a wheelchair and Harry occasionally uses it. But like any other 14 year old teenage boy, interested in girls etc he neglects his wheelchair in favour of being in constant pain so as not to stand out and be different from his friends.

His Progeria means he's stared at anyway and he feels doubly stared at if he's in his wheelchair. This is the side of his genetic disorder I despise.

Harry is 14, Harry wants to walk, run, fight with his peers like most 14 year old boys do. Arthritis, joint pain etc prevent him from doing this without it resulting in him limping home, popping a couple of pain killers and collapsing on his bed (This is the Harry his friends don't see, well apart from his closest friends who are happy to stay indoors and chill when Harry is in pain).

I am fully aware that there are other children who suffer far more than Harry and that Harry in fact leads a relatively active life and for that I am grateful but it still hurts that he can not do many thanks his friends can and can not always keep up and that pains me as his Mum as Harry didn't choose to be born with his Progeria but you can be dam sure that he makes up for it with his happy smiley personality and quick witted humor, so for that I am thankful.

Harry has an appointment with his Rheumatologist today incidentally!!!