A week of ups and downs

Im finding things hard at the minute. I should have realised that mondays high would lead into a downward spiral.

The week peaked much too soon.

Monday- the feeding clinic.
We discussed nates feeding and everything seemed very positive. I explained how his volumes of solid food had increased and he was eating with enthusiasm. The dr and salt decided against a video fluoroscopy based on my descriptions of Nate feeding, felt I should be braver and try lumpier food, and that we should start to encourage safe smelly finger foods like wotsits and quavers. I left feeling scared, but in a good way and these were all due to progress.
In the afternoon I met with a lady from the medical priority housing team. She made me feel like they would help, and do it quickly. ( a phone call from portage to explain our situation helped). A really positive day :)

Tuesday
Tuesday began with an oxygen fiasco. The delivery turned up as my mam was taking Thea to school, and I was sorting Nate for his hospital appt regarding surgery for his testes. The oxygen men couldnt fit our valve on the new company's cylinders, after much talking on phone decided to come back that evening. In the meantime I had to cancel the hospital appt ( rearranged for January!)
Community nurse visit- little weight gain :(
Tuesday ended with Theas parents evening. I am a very proud mammy. She's doing fantastic especially her reading and writing :)

Wednesday
After a twisty teething night, the stroppy boy had sensory group and then our own salt visit. It was a disaster. Oxygen shelf fell off buggy getting to group ended up on hands and knees in the street sorting it. Then nate ( who after Monday has decided he just wants milk not solid), wouldn't eat for the salt. I felt like a total liar. We also need to start getting Nate to take water from a bottle or cup. Another battle. Also he needs to up his fortini milk uptake ( which he struggles with) so we are having to try ther teats/ bottles.

Thursday
Physio went rubbish ( thats a technical term). Nate wouldn't do half the things he could do 2 weeks ago and kept trying to go to sleep ( avoidance). He's also starting to sound congested and the community nurses are tracing his oxygen sats for 4 hrs tomorrow to see if we can turn his oxygen down and get back to weaning ( these were the conditions as they didn't want to carry on weaning his oxygen till after the winter). So I can't see that going well.

It probably doesn't seem much to you as you read this. But each thing for me is an emotional roller coaster, up and down, up and doooowwwwwwnnnnn. I feel there is such a lot of pressure on me to not "fix" but "help" Nate developmentally. I need to do physio with him everyday. I need to improve his feeding, get him drinking water and so on.
Its a full time job. Everything he struggles with I feel is down to me, that I haven't made enough effort. We are getting a specialist to assess EXACTLY what he can see (not much) and show me how to work with him to improve his sight. I'm terrified that they will confirm, as I suspect, that he can't see, which I know they will. And I wonder when I will fit in all this addition stimulation. Feel a bit worn out. And it's only Thursday x