Well there is nothing much to report since Monday’s entry. Massimo and I are really enjoying being at home and it is lovely to feel like a family again.
Massimo and I have been taking Jasper and Horace for their walks yesterday and today and we thoroughly loved the fresh air and the exercise. Massimo gave me plenty of smiles yesterday, the sun was shining and the dogs were having fun. All this was brought to a dramatic halt when I realised that Horace was in pain and Jasper had started shaking his head frantically. Grass seed season is afoot and they both managed to get them stuck in their ears. J valiantly took them to the emergency vet (it was 7.30 pm) and they came back feeling low and sleepy as they had both been sedated. Horace kept walking sideways and Jasper just nearly (nearly) turned up his nose at the small portion of dinner I offered them.
Otherwise life is beginning to taken on a rhythm of its own. Today we met one of the nurses that might be able to provide some respite care during the day (on top of the hours Verna does at night). Unfortunately at the end of our meeting and long discussion about Massimo’s care, she admitted that this will probably not happen before September. We will manage, and we do manage, but the help would have been nice. There are other avenues and the community nurses are working very hard to find a more immediate solution.
Tomorrow we are hoping to see Maz (Mum) and Maddy (6 month old baby). Maddy is about twice the Massimo’s size even though she is only 6 weeks older! This is where Massimo’s prematurity is most noticeable. Tomorrow evening Grandpa and Mal are coming to visit and in the night, Verna is coming and I look forward to my full night’s sleep!
On the medical front we have been told that the Bulbar EMG (this was done ages ago but only just got the results) shows there are some issues with Massimo’s nerves and muscles but only in relation to his swallowing. What this will mean exactly we don’t know yet as we haven’t had an in depth discussion about it yet.
The next steps relate to getting his physiotherapy started, meeting Dr McGowan to check on his development and most importantly start on a treatment for his HPV (we are still waiting for confirmation that it is Human Papilloma Virus) and get the gastrostomy done at the same time.
Massimo currently weighs 5.5 kg (12 lbs 2 oz) and is gobbling up 825 mls of milk a day, of which about 600 mls is still breast milk.