It's a been a tough few weeks since my last blog. Callum's genetic photos have now been looked at, they want to look at a specific chromosome now in more detail and have found a rare syndrome which they think he may have and be the cause of all his problems. He had a cheek swab done today, the results will take between 6-8 weeks to come back. We saw Callum's paediatrician on Tuesday and we went through each of Callum's problems together. His length was measured and he hasn't grown in length at all so we have been referred to a growth hormone specialist now too. Callum needs to have some blood tests done to check his growth hormones are ok, he had to go into hospital for a morning and go on a drip and have a blood test taken every 30 minutes. If Callum does have this syndrome they can't do anything about his legs not growing. Callum isnt talking and they think this is because of a genetic problem aswell so we have started using sign language with him now.
We are still awaiting a date for his grommets, skin and muscle biopsy, it's taking a while to organise as three people have to be available at the same time to each do there own thing.
As much as I want to find out what's causing all Callum's problems I almost feel as though I don't want to find out, as once we know that's it then, forever, he will always have it and we will have to face up to it and accept it. Certainly struggling with it all, I feel consumed with tests, appointments and waiting at the moment. Perhaps though we are a bit closer now to finding out what the future holds for our darling little boy xxxx
