Word of the day FRUSTRATING

Today we had an appointment at haematology. They specialise in looking at the blood and it's role. We were there at 9:30am and at 10am they weighed L. She was missing her morning sleep so she was getting tired. At 11am we were finally seen. Dr Angela Allesandro is the head of the dept so we were in good hands. She had already seen L's file and spoken to another Doctor about it as she has them all baffled.
Unique
An enigma
In the shadows

Words I hear all the time to describe what Miss L is going through.
After reading her results she still can't understand why she was B12 deficient and what caused. We both chatted and Googled at the same time to see if there are any more tests that can be run that haven't been done yet.

Feels so weird to have a Dr ask you for your ideas and opinions.

They still think it could be an internal error which is possible genetic.
Maybe she need more B12 than us just to process it.
Maybe she isn't using it properly?

Also we discussed my unusual blood test results which came back with high levels of MMA which may indicate I have problems. I have been referred to a haematologist too so I hope they can lead us somewhere.

In the meantime she rang up Dr Barry Lewis the head scientist in the lab at PMH who knows us by name....he suggested some expensive and long genetic tests. These have to be sent to the US. In the meantime a Metabolic Specialist is the next step- unfortunately PMH only just hired one and they haven't started working yet.

So in the Dr's words; she may just be Miss L. No name, no daingosis.
This is her.
We may spend the rest of her life testing her blood, watching her develop and letting that guide them.

Needless to say I didn't want to hear that.
I  don't want to watch my baby decline and get sick just so they know she needs more B12.....

I want to take action and prevent it.