Saturday 08/11/2014 - (Day 0 +30) 2.5weeks home. Tomorrow is 1 month post-transplant for Aaron. Hard to believe a month ago we were just half way through our Moscow part of this journey and Aaron was being accepted into the Pirogov ‘New Life’ club :) This last week has been fairly restful for Aaron, not sleep rest just ‘doing nothing’ type rest. Doing nothing = playing PS3, surfing the net, talking on the phone, watching TV/Movies/Series and keeping to himself so he is away from any potential colds or flu’s or anything else nasty that he cannot afford to be near right now…. and he is generally bored! Other than our weekly trip to have blood checked we also had a visit to the Cardiologist this week who has ordered an Echocardiogram (or a heart ultrasound) just to be sure there are no problems. We will monitor Aaron and any report symptoms. We are definitely on the HSCT roller coaster and things have gotten worse so we are looking forward to the rise again. I am posting the HSCT Roller coaster picture again, it was drawn by HSCT Warrior Phoebe who went to Moscow from the US in 2012 – she drew the diagram to help others describe the long HSCT road to recovery to family & friends. Each HSCT recipient had their own MS to start with, and no two people’s MS is the same, it can be similar but never the same. Therefore the HSCT experience is different for everyone and so is the recovery time and process. The only MS symptom that we can see that has completely gone is the cold hands – which is a nice thing but they still have pins and needles as well as no sensation. His left leg has lost sensation and all feeling completely and is not responding to his ‘thoughts or intentions’ ie he is telling it to lift and it’s not – so he is using the chair almost all the time as he was falling too often. We are anxiously awaiting the supply of his own chair from Enable. While we wait (we do a lot of waiting lately!) we are so very grateful to still have a loan chair from a good friend – it has allowed Aaron the freedom to get around inside without the fear of falling. As well as meant he can go outside in the yard and check out things once a day. We were not looking for miracles with HSCT and we won’t see real signs that we have halted the progression for at least 6-12 months when Aaron has his next MRI. Any improvements may not be seen, if at all, for 12-18mths - a long waiting game that requires a lot of patience. Aaron is still very weak and is feeling the need to get back into some physical exercise to rebuild the muscles that are wasting from not being used the month in hospital and now 2.5 weeks home. Dr F recommended 1-2 months after returning home that Aaron could start so we are watching the calendar patiently knowing he needs to wait another 2-4 weeks and then a light rehab program can be set. Slowly slowly catchy monkey right!
Posted on: Fri, 07 Nov 2014 22:49:03 +0000
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