Days ahead

Since my last sad blip we have had a hectic time with the kids staying.  On Thursday Chris and Parisha arrived.  It was lovely to see them after a long absence.
Then, on the Friday Alice, Jack and Fred arrived in the afternoon.  Meanwhile in the day we went to Padstow with C & P and went out to sea on a big and very fast rib boat on a kind of sea safari.  Great fun and we did see some dolphins after a lot of searching.
Back home and added delight of dear Fred.....also George as Alice and Jack had picked him up from school for Jen and Jack.
Baby sitting in the evening while Chris, Parisha, Alice and Jack went round to Jen and Jack's for a meal.  First time for quite a while.

Saturday we all went to the Lost Gardens of Heligan. A really lovely day out with the whole family.

Sunday we had Jen's Mum Christine and her stepdad Brian call round for coffee.  They were down in Cornwall staying at St Mawes.  We were also joined by my stepdad John.  At 91 he is on good form and looked well and was very taken with Fred.
In the afternoon some of us went to Devoran for a walk and in the evening we did some more baby sitting.
Monday was our Jack's birthday, who was in such a good mood all weekend as he has at last got a permanent job.  We all went on a country walk to get to Maenporth beach...lovely walking through overgrown lanes and fields.  But there was a bit of sea fret at the beach and it was almost chilly.
In the evening we had a fabulous curry, a combined effort.

Tuesday our visitors left for home.  It was a good time with the family but tinged with such sadness.  Alice and Jack wanted it to be as 'normal' as possible but we could all see how worried they both are about Fred.  They are going to try and see a neurologist privately (Jack gets the opportunity for private health care through his job).  Hopefully this won't take too long.

I felt quite depressed after looking up Cerebellar Hypoplasia which Fred might have.  Then today I spoke to Alice who sounded so low.  They had had a copy of the paediatrician's referral to the neurologist and the description of the MRI results make for worrying reading.
Alice asked me if I thought Fred is slow cognitively.  Such a hard question to answer when she doesn't really want to know.  I think he is slow but perhaps he will catch up we just don't know yet.
He definitely has a physical disability.  The cerebellum is important for gross motor movement.  We have also got to hope that Fred will have some speech and up to now his cleft palate held that back.  The one good thing of recent days is the cleft op and how quickly he has recovered from it....already eating well and sleeping.

Fred is apart from all his problems a dear dear child.  A happy, sweet and lovable child.  We all adore him.

Extras from the past few days.

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