Okay so where are we now, as the appointments start to filter through from the Evelina, and as Robbie seems to have forgotten about his dread of getting his hair shaved, a visit from the hairdresser seemed an ideal opportunity to "start the process" and get Robbie used to short hair. don't be misled his hair is normally quite short anyway, however just a bit shorter on this occasion...
Overall it wasn't too much of a shock to the system and he seems quite happy with his "really short" cut... At this time, the idea is the hairdresser comes back to us late August before we go down for Robbie to get the DBS implant, and again it will be cut short... only a bit shorter again next time round, we still don't envisage us being able to shave it at this stage, and if necessary the staff at the Evelina has advised the surgery team will shave it if necessary on the day.
Personally I think he looks dead smart with his short hair, (then again I am a forty something with virtually no hair) so I am probably not the person to seek advice from about hairdressing :)
As per my post earlier this week, in contrast to what I was saying about being moody, Robbie seems to have really picked up his spirits this week, and we currently have a happy, smiling and really good natured Robbie... Playing with his sister and the family pet "Fudge" .... Maybe the holiday build up spirit has hit us all as the whole family seem to have a spring in their step.... So all good there.
So far we have had the following itinerary confirmed with the Evelina, just waiting on the appointment at Kings College hospital (He is to attend this hospital for a Magstm appointment ? - As and when I get more info on this I will add to the blog) to come through now...
Appointments confirmed to date -
Mon 25th July - Admission to Savannah ward
Tues 26th July - 8.30am - 5.00pm
(am - speech assessments)
(pm - PET scan under general anasthetic)
Wed 27th July - 8.30am - 5.00pm
(am - theapy assessments)
(pm - MRI scan under general anasthetic)
Thur 28th July - 8.30am - 5.00pm
(am - theapy assessments)
(pm - goal setting)
Fri 29th July - 8.30am - 5.00pm
(am - neuropsychology)
(pm - meeting the surgeon)
Quite a busy week at the Evelina, however we have a holiday to look forward to first, (Robbie knows only 7 sleeps till this) and this seems to be a very good distraction to all of us...
As they say we will "cross these bridges" as we come to them, all in good time... I think personally as we are such a strong family unit we will get through this as we know we can all lean on each other at any time, and I dare say some of these sessions will make us all laugh, smile and maybe cry a little... but we will share it all as one and we will get there....
Robbie looks great! Fantastic that you are preparing him so well. When Chloe had her DBS. they did not completely shave her head to the point of baldness, but left a 'stubble'. Not a great look for a 13 year old girl, but a good excuse to go and buy some very fancy hats! Having said that, the hair grew back so quick that the hats were soon redundant! Chloe's control from the DBS is exceptionally good at the moment. She is experiencing a completely calm body with absolutely no spasm! She is just so happy, and so am I :)
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