Friday, 10 May 2013

The ink is sore

The geneticist has shared the result on the phone, yet looking at it on a piece of paper was so final. I will never forget that feeling. Some laboratory in Birmingham, managed by the ever so efficient NHS sent us the results. Seeing it on paper was so final.
I felt that all over again today. I know that one way or another we will start GH treatment in the near future, so I wanted to get a height estimate to share with the endo.
I have always estimated that women with this mutation are around 128-135 cm, this was purely based on me talking to other parents, and people with HCH. I know of someone who has an estimated height of 142. So I have asked the wonderful Dr Pauli if Fi is old enough now to get an estimate, I knew that once they hit about 2 he can do en estimate based on current height and growth velocity, which he then can revise every year. He says that he gets it right by about an inch and I believe him, he is not a man to boast and chooses what he says very carefully.
So we got the height estimate: 137 cm, 4 feet 6 inches. It makes my heart sink. I know that the variability of height given this 125-150 is not really true for this mutation and 137 is actually more than my estimate, but still 137. It sucks.

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