Well William is losing weight again and is going to have a gastrostomy. Basically, he will have to have an operation to insert a 'peg' into his stomach which then has a tube attached on the outside of his tummy which I can attach either a syringe or a feeding pump to and then he can have fluids, supplements, medication etc through the tube instead of having to have it orally. It sounds a bit traumatic at first and as it is an operation, it is traumatic but it does have very positive aspects which swe're trying to focus on. It means that the pressure will be off as William really struggles to eat and it can be quite stressful for all of us, sometimes he takes hours to eat the smallest bowl of food. I think we could both do with going on the William diet, shame I can't give him some of our fat!!
Once he's had the gastrostomy he can still eat food but if he doesn't have enough then we can top him up with a supplement via the tube. It also means that when he is at Chestnut Tree House or anywhere else that they need to feed him they wont as they can tube feed him.
So we're waiting to be referred to Brighton to see the surgeon and have an initial assessment, not sure how long we'll be waiting!
Other than that William is doing well, he's really happy now which is great. He's been having a course of occupational therapy and has been making really good progress in using his hands but the course is almost over and we won't have another one until the summer so we're considering finding a private OT to fill in the gap rather than letting his learning go to waste.
We have been a bit concerned about his jerks recently as they have increased and last week he had a couple of days when he was having them every 20 minutes or so all day. The paediatrician was slightly worried about them leading to seizure activity so she has put him on another medication and he will be having another EEG soon. He hasnt had one since he was about 6 months old. (An EEG is where they hook his head up to a monitor to watch his brain patterns, they watch him whilst he is being monitored so they can make notes of what he is doing and what happens in his brain at the same time)
We're still waiting for another appointment at Chailey about his seating so he still has no suitable seating and his standing frame is also causing problems now! The headrest we have finally been given for it isnt suitable for him and gives him no support whatsoever. I complained to the physio about it today but she said that we just have to made do with it for now - thats ridiculous so I can see us having to buy a suitable one ourselves, its just trying to find out whats suitable and where we can get it from thats going to cause more problems! I actually think the NHS don't care what they provide you so long as they have provided something. When he was assessed for the head support we were only shown one so we didnt have anything to compare it to and how can you tell if its suitable by trying it for 5 minutes?!
I found out this week that the OT's from the NHS have to throw away their play dough once its been used by one child because they want to reduce the risk of infection - how stupid is that! No wonder the NHS have no money!
I'm sure there's more to update you on but its been such a hectic few weeks I can't remember anything else! If I do I will update this post!
Don't forget the race night to raise money for Williams sensory room is in Crawley, 16th April if you are free to come please do!
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