I've already mentioned a normal delivery, transfer to Special Care and posted an early days picture so I'll put a bit more detail here.  Tom needed an NG feeding tube soon after delivery as he showed no suck/swallow reflex (now that we've read some stuff about HECW2 we can assume this may be attributable to a higher than usual pallet).  Tom needed phototherapy for jaundice.  Tom underwent a lumber puncture at around 48 hours old as an assumption was made that he may have an infection.  At around this time he also went into the CT scanner.  None of these early tests gave any indication of why he was not feeding as he would have been expected to.  His bloods were checked daily with the heel prick.  At one stage it was felt he would benefit from a transfusion but this turned out to be a false alarm.  Doctors expressed concern that he was a very quiet baby and queried that they had not heard him cry.  I had!!!  We had to remain on SCBU as Tom was reliant on NG tube feeding - I spent a lot of time on the expressing machine feeling a bit like a heffer in a milking parlour!  Whilst still on SCBU we had a trip out to another Kent hospital for an EEG.  Again nothing conclusive found.  After three weeks a midwife found a really soft and squishy bottle that she could get Tom to take into his mouth while she gently squeezed milk in for him to swallow.  A few quick lessons for me and we were allowed home - he was three weeks old.  We would be followed up in the paediatric clinic and would get a referral to the neurology team at Guys.

During this time our GP was an invaluable support to us, visiting us in SCBU, at home and being on hand with advice when we were off to see specialists.  

Tom suffered from reflux and one particularly scary moment came soon after we got him home and he brought up this strange brown grainy liquid.  We could not begin to imagine what it was as he was on a milk diet.  Our doctor was able to confirm it was old blood and that his reflux had probably caused a small bleed.  

We had to be extra vigilant when feeding him as there was a risk of aspiration that could lead to chest infection.

I'm pleased to say Tom turned out to be quite robust really and illness was not a big feature.

It's all such a long time ago now that I can't give accurate dates and times but at around 10/11 months we got our appointment at Guys.  In the interim the local paediatric team had kept an eye on Tom but had not come up with a reason for his difficulties.  The Guys appointment incuded another lumber puncture and an MRI which had to be done under sedation to keep him still.  He also had his first referral to genetics at this time.

Standard screening gave no clues and the MRI indicated an unusual balance between brain matter and fluid - the neurologist used a walnut analogy to describe this to us.  If you crack a healthy walnut the nut fills the shell if it is not healthy there is a gap.  Tom's walnut had  a gap!  This led to the conclusion that Tom had cerebral palsy.

We received a package of support at home including physio, OT, Speech & Language, portage and hydrotherapy. Life moved into a pattern on appointments for therapy and regular hospital check ups.

Soon after birth Tom was noted to be jittery and depending on who described it he was shivering (the midwife) or fitting (the paediatrician).  As there was a query over whether he had fitted there was some concern over whether  to subject him to the triple vaccine.  Once again our GP was a saviour offering to do Tom's vaccinations separately.  Similarly, the MMR was delivered separately.  Tom did not have any reaction to any of the vaccines other than the usual rise in temperature  and runny nose for a day or two.

Given that we now know seizures form a part of the HECW2 profile maybe this little touch of the jitters soon after birth was Tom getting it out of his system because I am pleased to say, to date, he has not suffered from seizures.

This is a phrase that I have often used to describe Tom when people have asked if he is generally fit and well.  Tom was fortunate not to suffer from many childhood illnesses - he had the odd cold and tummy upset but nothing that really brought him down.  When he got chickenpox that was also mild.  However, I have to say that Tom has never really complained of feeling unwell and has often been quite poorly with a high temperature before we have realised he was going down with a cold or infection.

I'll leave it to your imaginations but this lack of complaint about having headaches, sore throats, tummy aches or feeling sick has led to lots of missed bathroom visits and carefully delivered sick bowls meaning lots of mopping up, changes of clothes, bed sheets etc.  And nights spent sitting in the chair in his bedroom hoping to catch things in time!

We did have a few A&E visits with Tom when he was younger but I'll cover those in my funny stories tab because although extremely stressful at the time looking back  we can laugh about them now.