It's been a while........

I've been meaning to write but then something else happened and it's just all snowballed from there.
Callum got chicken pox in October last year and unfortunately since then he's been quite poorly and in and out of  hospital ever since.  To cut a very long complicated story short Callum is now being fed through a tube which goes into his nose and into his tummy. Callum is unable to maintain his blood sugar and he just doesn't eat enough to maintain it now.  He's always had feeding issues but it's just got worse and worse to the point we are at now; he will only eat beans, chips and weetabix just little mouthfuls never the whole serving.  He now has 4 tube feeds a day at 7am, 12pm, 5pm and 11pm.  He has a high calorie milk which is basically a meal in itself. He has a pump to slowly pump the milk in so that he can tolerate the feed, this takes half an hour to go through.   To say we have found this difficult is an understatement.  I know it is necessary but I now feel like a nurse/parent, the amount of medical supplies needed is such a lot, we've been given a community nurse who comes out weekly to change Callum's tube and we have monthly delivery a if everything that's required: giving sets, syringes, ph paper, tape, tubes, milk, dispensers ect... Boxes and boxes of things it really does feel
Like a hospital here and it's so hard trying to find room for everything too.
The plan is to see if having regular milk feeds it may stimulate Callum's appetite but sadly that do far is not the case he is eating less each day and he is now in the waiting list for a gastrostomy which is a tube directly into his tummy.
During the month of March we spent 3 weeks in hospital it's such an unsettling time for all of us and our family, I feel like I'm abandoning Ronnie during these periods he's 6 in July so is becoming more aware of things now.  Thankfully I have an amazing family and family in law without whom we could not manage.
Throughout all of these new problems Callum remains happy and is enjoying life. Which of course is the most important thing in all of this.
I honestly feel like it's all happening to someone else, I look around the house and see all of the boxes and can't believe it's happening.  Watching Callum asleep when he has his 11pm feed reminds me of when he was a baby and I would never have imagined we would get to this.
I think added to it is when we go out or I'm out with the boys on my own peoples reactions to Callum are genuinely lovely but then there's others who stare and ask really tactless questions.  I'm getting more used to it but again it's another side to all of this.
Callum's also got to wear bifocals in his glasses now as his low muscle tone is affecting the muscles in his eyes.  I chose him a fab new pair of glasses today.