Going down the wrong way

After a horrid few months, B has been relatively well the past four weeks. No seizures since we increased her meds, her pressure sores on the underside of her heels healing nicely, the folliculitis on her back and chest has healed on her chest and her knee pain is less often therefore much better. Thursday she went for a videofluroscopy/swallow study. Mainly because she coughs alot when she is drinking or has dryish food..has been for quite a while. Her dysphagia specialist from school came and has said she also has co-ordination problems with her swallow..not uncommon with ataxias. I espected her to cough and them to say yes her swallow is altered but its ok to proceed as we have been. Well instead she didnt cough and silently aspirated (means it goes down her airway into her lungs rather than down into her stomach) on the first drink. They stopped it immediately and thickened it up and she didnt aspirate after.

Food wise we didnt really simulate what causes her issues because the barium liquid just made everything slicker. The outcome will be sent to me in a report but basically she appears to be silent aspirating but not majorly otherwise she would be getting chest infections (although I have been informed it is still as dangerous without the chest infections). However it may need some minor changes such as drinking thickened drinks or such like. She also appears to have issues with mixed consistencies. So something that has liquid and solid e.g cereal and milk, tablets and drink. This became evident whislt eating a piece of pineapple where the juice runs out first. So we may have to do something about that. Whether its a new thing I dont know but we have a baseline now. I am kinda dumbstruck by this to be honest. I didnt expect her to be silent aspirating, I kinda thought she was coughing it back.

Friday when i picked her up she complained her foot hurt. I looked at it and her left underside heel is developing under skin sores. the opposite foot to the last one. and her left foot was so red, hot and swollen whilst the left was freezing cold. this neuropathy thing does my head in. anyway according to school nurses, beth is having muscular contractions almmost like spasms which force her legs down into the base of her heels..so they arent pressure sores as such as rubbing, they are more like compression sores and not alot we can do about it with all the padding in the world (and beleive me she is well gel'd up) it still will have an impact....She was crying in bed over it friday night with pain

Just scared that its not going to be the disease that stops her standing anymore but these painful sores instead.

Wand - magic...? send it her way please.