"Hasn't it flown?"

It's 2 weeks until Natie turns 4, the result of which is a flurry of emotion. To distract myself from this I tend to look back and assess the last year in the run up to his birthday. But I haven't quite managed. 

Birthdays are odd things when you have a child with PMLD and complex needs. Nate understands very little of what is going on. He can't open gifts, or eat party food. He can't dance or play musical chairs. He does, however, have a somewhat dubious taste in music, which is satisfyingly normal. Then there's the nightmare of buying presents for him. Once you've purchased what seems like every sensory item under the sun you're pretty much screwed. So um we haven't bought anything yet....

Turning 4. I could make some throwaway comment like " where has the time gone" or "hasn't it flew by". But I won't. I have felt every single day. Each day has left a little lasting imprint on me. Partially because I wanted it that way in case we lost him, partially because some days have been extremely tough and sometimes scary, but also because every day spent in hospital bloody drags by. I think one hospital day = 3 normal days at least. I certainly feel 4 years older. 4 years of stress, heartache, and of course love weigh heavy on your soul. Frustration and tiredness add lines and creases. Then there's the "shoulds" ...

Nate should be starting his sister's school in September. 

I should be thinking of school shoes not trying to find shoes that fit over AFOs. Botox should be something I read about in a celeb magazine not arrange to have injected into Nate's calves and ankles. 

I should be discussing Dopamine with y11 in GCSE Science not starting a gradually increasing dose to try to stop Nate's involuntary movements. 

See what I mean? I'm not doing a (fairly) healthy look back very well am I? 

What is (metaphorically) battering my head is that I remember Thea's 4th birthday so vividly. Michael painted her room bright pink while she was at pre school and I was in hospital with Nate. I planned her party at his bed side. She flounced into Nate's room dressed as a beautiful princess and burst into tears later when she saw her decorated room. 

There. Off on a tangent again. What I'm trying to say ( I think) is that birthdays make the contrasts all that much clearer. Birthdays highlight the "shoulds" and "what ifs". They make you think of the physical and emotional hell you went through straight after your special, beautiful, and amazing child was born. The constant stream of negatives and sadness. I recently read through Nate's medical notes. It was a hard but worthwhile read. I remember every discussion, and every diagram drawn to explain things. He really was very well looked after in SCBU. 

So Nate's year then. Focus Rachel. 

It's been a bit interesting at times. We have had a few ambulance rides, hospital stays and an actual bona fide diagnosis! Never thought i'd be saying that! We are trying to get to the bottom of Nate's pain and screaming so have a new "low fodmap" diet to try with Nate. We started using a blended diet with him which has helped his reflux immensely. Testing wise he had a fairly normal MRI and a trial off BIPAP, but has several tests still to come.  Meds wise we started using melatonin which helps when he is extremely tired, but can't switch off and go to sleep. He is starting dopamine next week to see if that helps his twitching and jerky movements. 

This year has been incredibly frustrating at times. Particularly before we received Nate's diagnosis. Being "undiagnosed" led to much disbelief regarding symptoms. Fortunately we have had the support of his school. 

Oh and school! A fabulous first year at school :) mustn't miss that out!

*doesnt mention the excessive hoist-age appearing in her home this week*