Hi guys, I am really sorry I haven't been able to post since last week. I apologise for not getting on to reassure you we are doing ok.

We've got the MRI results back. It's been a bit scary. We consulted Gussy's Neurosurgeon yesterday. He thinks that what looked like possibly being a slow growing tumour is in fact just a misshapen hypothalamus. His posterior pituitary doesn't look right either, but we're not yet sure what that means and whether there's any connection between it (and his misshapen hypothalamus) to the frequent and voluminous vomits and his food refusal.

The MRI confirmed there has been no change in the shape of his hypothalamus since the last MRI - it is no worse or better in shape. This rules out concerns of a fast growing tumour on the hypothalamic region of his brain, however it does not necessarily rule out a slow growing tumour. His spine all looked ok in the MRI. We are now waiting for the appropriate specialists (neurosurgeon, gastroenterologist and endocrinologist) to interpret and discuss the scans with each other.

The MRI was with dye contrast and was done under general anaesthetic which is the reason he had to be admitted to hospital. As well as the MRI Gus also had to get a new NG (feeding) tube passed as the metal tip on the tube can interfere with the MRI equipment so couldn't be inside him while the MRI was done.

We had a particularly horrible time in hospital. Gussy cried and fought with all his strength to try to stop them from touching him. He gave the anaesthetist a challenging time prior to the start of the MRI with all his fighting. Eventually he worked out the only way to get her to back off was to vomit. So he vomited at the start of the anaesthetising and then promptly inhaled it. Blahhhh it was not a good thing to do! Although he's small, Gussy is incredibly strong willed!

The MRI itself only took a couple of hours plus half an hour in recovery, (but Gussy had to remain in hospital for the whole day til they sorted out some post anaesthetic NG tube issues). Poor little lamb was really sad and scared going into the MRI because DH and I weren't allowed to stay with him during the MRI. We seemed to have to wait a very looong time to be allowed to see him once the MRI was over. Poor wee man didn't know any of the nurses in recovery so was pretty distraught by the time they called us to join him. It was awful.

From excessive crying and vomiting he managed to burst capillaries all over his face. Then after being taken back up the the kids ward he had a little while to settle down before we had to pass his new NG (feeding) tube. I wish he didn't have to have the tubes passed. It makes him gag and dry wretch and usually he can't help vomiting as the tube passes the back of his throat. He's a very brave little boy. Since February I've been passing the tubes myself, but I am required by the hospital to do it in their presence unless it's an emergency type situation where we can't easily get to the hospital. He fights the process so much that we need four nurses to hold him down while I pass the tube. It's such a hard thing to do - be the cause of my beautiful boy's fear, pain, discomfort and then expect him to trust me and want me to comfort him once it's all over. Aghhh the things I have had to learn to do in my role as a mother, are not things I'd ever have expected.

The burst capillaries over Gus's face caused a bit of a stir in the kids ward. They presented as a similar rash to the first signs of meningococcal - so that meant we had a much longer hospital stay than planned while that risk was eliminated. It just turned out to be burst capillaries, thank goodness.

This MRI experience was soo much more traumatic for Gussy than the one earlier in the year. In fact it was completely disproportionate to what he needed to have done. I think it's probably because Gussy's had so much done to him in the past that he's now so much more aware and afraid of medical procedures. He understands most things we talk about and so anticipates things and therefore gets far more scared than he did previously. Things that earlier in year might have just gone over his head now seem to really freak him out. Poor little lamb...

Now the reason I've been off line for the past week is that we've had to send our computer away for fixing and have only had a work computer which has a firewall preventing access to Belly Belly (amongst numerous other sites that are deemed non-work related). I am really sorry to have worried you all. Will now spend some time catching up on all your happenings over the past week. I now need to go and flush Gussy's tube. He's hooked up to his nightime feeding pump as we speak.

K x