So I haven't blogged in a while. hectic hectic times.
Thea loves school, though the one week forced school dinners didn't go down well!
Nate is doing much better with his sitting and head holding, both the physio and neurologist are very pleased. the neuro has decided that we will know mo about Nate and the future after another MRI at 2 and perhaps a muscle biopsy to rule out disorders he knows Nate can't really have as he's improving.
The mouth op to remove the lump is on Wednesday. They didnt manage to move it forward, so we have had a terrible time with Nate in pain day and night when the lump is at it's fullest ( it partially drains). The op depends on nates health, and availability of beds on PICU and the resp ward. He has to stay overnight to make sure he is breathing ok. I just want it over with. Hoping the pain will stop and that he begins to feed better. This would have a positive effect on his health, weight and development. Not that I'm pinning any hopes on the op or anything....
I had the pleasure of meeting with the swanuk advisory committee on Friday. It was great to feel like I had a chance to help and make a difference ( not that I said much!) it was also lovely to meet Lauren Roberts ( swanuk coordinator) and Emma Murphy. ( hi Emma!)
And now a bit about me. I'm worn out. I'm run down. My immune system is shot to &£@? and I feel like crap. I have little energy and am starting to feel quite down. Working and getting
everything done for Nate and Thea is a battle. And I feel that my body is slowly losing that battle.
Nope I don't even have the energy to spell check this post. Sorry!
Feeling very similar to you right now, fingers crossed for Nate's op xx
ReplyDeleteHi back at ya Rach! Was so lovely to finally meet you too. Xx I am not surprised you are wrecked with it all and just wished we lived closer Soweto could do something more practical to help. X x
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