Wednesday, 30 May 2012

Hyperphosphatemia

Today Ayda had her 4 monthly appointment with her specialist... We started with the good news!  The fraying in her bones has healed, meaning all the dark spots that showed up in her xrays last time are gone!  We couldn't be happier :)  We were also told her alkaline phosphatase levels (ALP) were lower, which Dr L was pleased about...
But...
There is always a but...

There was calcium in her urine... Its the first time this test has come back positive and it means that her kidneys are not keeping up with the increasing amounts of calcium being pumped into her body because there is not enough phosphate to absorb it... To try and counteract this he has up'ed her phosphate dose and wants monthly urine tests to keep a close eye on her...

He was also concerned about how badly her legs are starting to bow... It seems that the more she puts pressure on them the more they are going to bow if we cannot get her doseages right... He is giving it 6 more months of medication experimentation before we look to other options, possibly surgery...

It appears that the bowed legs are restricting Ayda's height development but not her weight so there is now an imbalance between her height/weight ratio... He suggested being extremely careful with her diet as he wants her weight rate to slow down... This was one of the hardest pills to swallow as we do watch what we eat and have always presented her with a healthy balanced diet and to think that we have to be even more careful makes me anxious that as she gets older we will make her paranoid about her weight which is so dangerous with girls in particular... My friend is giving us the number of her daughters pediatric dietician so that gives me confidence that we can tackle this in the right way without causing Ayda to feel restricted or become obsessed with her diet...

Ayda feel asleep in the car on the way home and after a couple of phone calls to family filling them in on the appointment, I had a rare moment of silence and alone time to reflect on the afternoon... It made me cry (although I always cry after an appointment due to the overwhelming reality it gives me that this is infact our life)... I felt for the first time since Ayda's diagnosis, deflated... I realised that no matter what I do, no matter how hard I try, it will never be good enough.... I will never be able to 'fix' this, or make it go away and it was a depressing thought...

I look at my beautiful, smart, funny daughter and I forget that she is different... I forget that she is not quite the same as other 2 year olds... But when I am in that waiting room, I am reminded that for the rest of her life, she will be fighting a battle that she will never win...


But... and there is always a but!  We are blessed... because she is beautiful and smart and funny and cheeky and so much more... And she may always be a little bit different but she will be amazing while she is and that fills my heart with hope and so much love I could burst... So while I will let myself be sad and defeated tonight, I will wake up tomorrow brave, ready to keep doing all I can to make things the best that I can...



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