Happy meeting

We had our first meeting with portage services today! Two lovely ladies came to the house and assessed E, one played with her and the other asked me questions. E meets their criteria and so now they are coming fortnightly for play therapy sessions. They will be our rock in terms of being a connection to Drs, therapists and schools and helping us with anything we need. 

One of the ladies is going to help me fill in the DLA forms as she's certain we qualify and she will also be able to get funding for a McLaren Major or wheelchair later on. 

She's also suggested a pre school as the one we visited yesterday had no 1-1 which made it totally unsuitable. 

So happy to have this support and finally someone to talk to and help, can't recommend the service enough! 

Tired

So it's been nearly 2 months since we saw neurology and we've not even had the appointment summary through, let alone any of the referrals we were promised.

Also no sign of the letter the speech therapist told me we would get.

E had an orthotics appointment last Thursday which I had made as an extra because I was so unhappy with the last appointment.

This time my husband came and sat quietly listening to the fobbing off and patronisation the ortho threw at me like he always does, but then piped in about how disgusted he is that we have no help. The ortho seemed shocked that someone actually opposed him, it was great! He still kept on trying to throw more blurb at us but my husband had legitimate questions, like why can't we have piedro boots again instead of having to buy our own. Why can't we see an OT and what happens when she outgrows her pushchair and we can't carry her around.

Ortho said we had to make a choice wether to reside her to a wheelchair in which she would go backwards with progress or to keep pushing her, this was like a red rag to us as it's clearly not what we want, nor what we were implying! She would just need it for longer walks which she cannot physically do, why would we want to stick her in a chair needlessly?!

He then said we absolutely could have piedro boots again, which was the opposite of what he told me last appointment.

After what felt like half an hour of back and forth he said he would book her in for a longer assessment appointment with himself and a senior orthotist so they can properly observe her. Why this hasn't been done previously I don't understand because the room we meet him in is too small to observe E do anything in!

I've been annoyed about the lack of physio support so visited the GP for a re referral, it'll probably be a waste of time but at least we will have tried. 

E's next paediatrician appointment is next Wednesday, I'm going to ask about moving to the nearer hospital and what on earth has happened to all these referrals we were promised, feeling apprehensive about it.