End of the road?

So, its the end of the road for this round of therapy for Ava. It feels a bit of an anti climax and you're left feeling a bit down, I suppose because you have known only this intense routine for so long and now it has gone. The question is what next? What happens now? We were surrounded by a great team and now they are gone. It felt safe with them, it felt right.
To make sure we are still ok with Ava's progress we have got a home programme for her to continue at home and of course the suit too. My husband and I are going to put together a programme rota to fit into Ava's busy schedule. I have ordered sensory brushes and a great book recommended by the physio before we left. I suppose I should have read up a bit more than I have but to be perfectly honest I have been in denial about Ava's problems a lot and prefer to forget the issues as much as possible. So here I am purchasing 'Understanding the teaching of motor skills to children with cerebral palsy and other movement disorders' - a great book for anyone wanting to understand and progress their child further. It gives great practical advice and because it has been co written by parents who have gone through this it is possible to do without loads of expensive equipment.
Ava is also going through an awful phase of biting herself at present. It is always her right hand and always her little finger. She has drawn blood 3 times in one week. We put socks on her hand but it does little to stop her. We are going to get that stuff that tastes awful to put on her hand to see if that stops her. I also have purchased some P's and Q's to see if that can help, it may also motivate her in the exercises we plan to do with her at home. They are basically chew toys in the shape of P's and Q's so she can hold them and once in her mouth she can get instant sensory feedback. Elmo is also a big motivation for her so You tube will feature heavily in her routine with as many Elmo songs and programmes as possible. I do think its high pitch voices too because she got a high pitched Sing a me jig for christmas and loves it. The low pitched one she got doesn't have the same impact.
When we came to Fort Lauderdale Ava had weak head control and didn't bring her hands to midline whilst sat. As we leave Fort Lauderdale Ava has sound head control(almost perfect but not quite) and brings her hands to midline whilst sitting. She responds much more often than she did before we came here. Her trunk, legs and arms are very strong so developing transition and motor skills will be much more achievable for her in the near future.
So is this the end of the road in our FAITH journey? No way. We plan to return as many times as we can for as long as it takes. Thank you everyone who got us here please can you help us do it again? Huge hugs, smiles and kisses from a much improved little Ava.

The last few days

We have had lots of positive feedback about Ava's progress in therapy. Her main therapist Paula is extremely pleased with progress she has made. Ava's head control is very near to perfect now and she brings her hands together quite often which means she is loosing the baby reflex there which is crucial for her development. I guess the biggest test is going to be when we return home and people see her, especially the professionals. Its difficult for us to assess as we are with her every day and I guess I do that wierd thing whereby I play any progress down in case I am being over the top about any small improvement made. We will see on our return to the UK.
In order to keep this progress going we hadn't realised we had the option to purchase the suit and be trained in using it. It was a big decision and we debated it for quite sometime. In the end it felt the right thing to do to purchase the suit for Ava. It is going to last her for 3 years and help her to continue to progress well. I am in the process of being trained at the moment and am doing well with it. I look forward to see her continue her progress at home.
Its the last 3 days of Ava's therapy now, she is rather tired and ready for a break. I know we haven't done much except be there but I have to say we are pretty exhausted too and are all ready to come home - well perhaps not Molly!