Hiya, well it's been a roller coaster the past couple of weeks since we brought Patrick home. We are slowly settling into some sort of routine, everything revolves around Patrick at the moment, his medications have to be taken at certain times, the first of which is at 4am! Patrick is also difficult to feed, taking up to 2hrs sometimes which is a nightmare. Now we have had him home for a while we have started to see little things that aren't quite right and have had some concerns about his development. Thankfully we had an appointment today at the Child Development Centre in Poole so we were finally able to get some answers and some clarification as to how things may be long term.
Patrick was assessed by various specialists including speech and language, physio, and paediatric consultants who assessed him as a team. All together we were there for 1 1/2 hrs so it was quite in-depth and they were able to see him asleep, awake and feeding. Unfortunately their findings weren't the best we could have hoped for.
Basically we have now had it confirmed that Patrick will be significantly disabled. He has problems in all areas of development at the moment. Patrick showed little or no response to the Dr's trying to interact with him, when he did respond to anything it was a negative response, he got agitated when they tried to make him touch anything and really didn't like being played with. I know you could argue that this would be normal for a baby not to like strangers around him but most of the time it was like he didn't even know they were there. At the moment we are unsure if his sight and hearing have been affected, personally I think he can see and hear but his lack of response to everything makes it difficult to be sure. He has now been referred to specialists who can carry out further tests in both these areas. He is also being referred to a dietitian who can hopefully help with his feeding, at the moment he isn't getting the amount of milk he should be as he never keeps his last feed of the day down and also struggles with most of his other feeds. The dietitian can hopefully sort us out with some special milk which will give him the right amount of calories in less feeds so hopefully he wont be throwing up every evening. Another concern we had was that Patrick is very 'jittery'. Whenever he stretches or when pressure is applied to his feet, they shake, I call it the 'thumper rabbit effect'. We had been worried that this was a sign he was fitting or having a bad reaction to his meds but it's neither. Apparently Patrick has over active muscle tone and the shaking is a result of his brain not sending the right messages out. Although it's not great news to hear his brain isn't functioning correctly, it's also a relief to know it's not seizure activity and at the moment it's nothing we need to be anxious about as it is not dangerous to him. It may affect his mobility in the future but hopefully the physio he we be having will help. One thing that Patrick did seem to respond to was the sensory room. This is a darkened room with bubble lights, fibre optics and soft music, he was totally calm in this room and actually watched the bubbles with some interest. It was very helpful today to learn what he does and doesn't like as it will make it easier to care for him at home, at least we know now to take everything slow with Patrick, softly softly and gently.
So, in a nutshell Patrick is a very poorly bunny that will need lots of extra care. On one hand today has been very difficult, especially explaining all this to our bigger boys, on the other hand I feel quite relieved to have had some answers so that we can move on with some idea of what we're dealing with. It's gonna be life changing for all of us and I'm sure things won't be easy. although I am confident that if anyone can cope with Patricks needs then we can, especially as we are so lucky to have such fantastic support from our family and friends.
We have been told that we will have access to lots of services including special education needs and respite which again makes it clear just how poorly Patrick will be, most people have to fight for these services. We'll take any help going and somehow we'll find a new 'normality' and just get on with it.
One thing I would ask is that people don't start treating us all with 'kid gloves'. A friend who desperately needed a shoulder to cry on deliberately avoided talking about their problems today because they thought we had enough to deal with. Please don't treat us any differently, both myself and Martin have always been available to our friends and family and we always will be.
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