Today we had our first appointment with our community paediatrician. I didn’t have high hopes that he would help us in anyway or tell us anything we didn’t already know. After 17 months of no answers you start to become fairly negative towards these appointments….but he was actually FAB! and spent 1.5 hours talking to us and actually offering help.
He went over all Freddie development, his feeding, his meds and finally what he can offer us –
- He going to sort us out with a hearing test to to make sure they haven’t missed anything there that would explain his lack of communication.
- Get in touch with our health visitor to get her to offer more help.
- He is going to write to the complex health care team for disabled children to see if they can offer us any support.
- He is going to contact the social worker team for us to see what they can offer.
- He has changed some of his medicine doses and given us a new one to try.
- He spoke to us about Freddies odd sleeping pattern and is going to review him in a few months and perhaps introduce a medicine to help regulate his sleep.
- He then went over what developmental milestone Freddie had met so far and thinks his development is functioning about 12 months behind where he should be. (Not really what i wanted to hear but it was almost a relief for him to tell me and not just give me the whole he will cacth up speech) To try and offer Freddie more therapy and give me a break he is going to have a look at what sort of nursery package they can offer us.
Throughout the whole meeting Freddie just sat in his own little world blowing raspberries, constantly fidgeting and his eyes kept crossing. He had no idea what was going on around him. It’s time ‘s like that where you see how he can never be expected to become a ‘normal’ boy. The severity of the whole situation really dawned on me.
Last night i had a dream & Freddie got his new Piedro boots(which we are getting next week 😀 ) and as soon as he put them on he got up & just walked! I felt so happy and relieved that these boots had made such a difference…then i woke up & got my little Freddie up and & did his milk & meds tubing, got him dressed while he blew raspeberries all over my face and wiggled round and round in circles. The routine i do every single morning without fail. If only dreams came true!
But overall it was a really positive meeting. I feel like help is finally on the way for us all!