Well its been another very long night, they tried again with the 2nd step reduction around 6:15 yest eve, and she was ok until about 8;30, which is getting slightly better with each attempt, so they then went back half way again and she was ok until 2am when she went into distress, so we yet again ended up back where we started.
The only thing keeping me going is that each time they try she is coping longer and longer at each phase, as she has never gone anywhere near 5hours at the halfway pressure before, but we still end up going back to phase one and it seems its never going to move forward.
On a lighter note I did manage to get out of the hosp yest afternoon, I took Lewis on a bike ride in the woods and we had a picnic, I had almost forgotten how nice it was to get some fresh air and relax with the sun shinning down on us, and we really enjoyed the few hours together away from the stress and even managed to bike 6 miles! but its amazing how quick you loose your fitness levels, ive only missed 3 weeks of Tae Kwon Do training and he beat me hands down! the monster!! (can normaly do 15 miles with no issues)
Hope everyone is well.
Alex x
11 Replies
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Hi Alex, hope Snowy picks up soon to make improvements however smalll. Glad to see you managed some quality time with Lewis, sounds lovely, you have to make the most of the nice weather while it lasts. Thinking of you and your family as always. x
Its all progress however small.... what you have to remeber is her body almost has to re-learn to function for itself again its had 3 weeks where it dosnt have to do anything (bit like if you have 3 weeks off work you forget how to do things) so each drop even for a few hours is good and that she is coping for some periods is a good sign that her brain is functioning and there is signs that eventually will be over it and wonderign what all the fuss is about!!!
Gald you had a good afternoon with Lewis and make use of the time you do have with him..Take him to McD's or to see Harry Potter once in a while. Will do you some good to!
I am trying to do my best for him, but theres only one of me and it needs to be split so many ways
Alex
each try is getting longer progression
small baby steps is key... andrea is doin fab, she is getting there slowly but surely...
2% remember next try 4% okay fingers crossed x x x
so glad u had fab afternoon yesterday away from it all with lewis, quality father and son time just what was needed defo needs repeating sometime soon
lewis knows u are there for him and supporting him and doing all that you can to be there with him and doing your best... you cant be everywhere at once and he understands that. i know you spend a lot of time with andrea, but when u are not there, you are at home with him.
losing your fitness levels already after 3 weeks!! tut tut.. hehe. u will soon get it back. well done lewis on beating you hands down!!
hugs as always x x x
Hi Alex, Sounds like you and Lewis had a great afternoon. Used to love going on my bike to blow the cobwebs away. Maybe I should dig it out of the shed again.
Hope you told Andrea about the fun afternoon. Every little helps. Back where started is a whole lot better than some of the days you've had.
Hugs,
Moira x
Thinking of you all and hope the next few days you get some good news
Don't be discouraged Alex. It looks as if little by little is the way to go, and a bit longer each time shows that she's building up some strength.
Sounds like you had a great afternoon with Lewis yesterday, and I'm sure you bpth treasure that time.
Keep positive.
xx
Lewis is keeping you on your toes then with the cycling. Glad Snowy is improving for longer periods. Even if she has to be given aid later. Its going to take some time. You stay upbeat Alex. Glad ur eating, a picnic, well we can't nag you now.
Gill
Like everyone has said, slowly but Snowy is getting there and she has already shown what she can do!
Glad you had a fun time with Lewis, can't be easy having to be there for everyone but I think you're doing a great job with the balancing act. Xx
At least snowys tolerating the reduction for longer each time which is good. Im really glad you managed to get out and have some fun with lewis, just what the drs ordered lol. You need to have time out as well and you had good weather to boot and im sure lewis was a happy boy. Going out on a bike ride is just the best stress reliever there is, the freedom is fantastic. I bet you feel much better now and fully recharged now, ready to deal with what life throws at you.
love to you all.
xx
You're amazing Alex, and I just know Lewis won't for one moment think you are not supporting him. I really feel for you in this awful position you find yourself in and I think you are coping most admirably and Lewis is well cared for and loved and supported during the time you are not able to be with him and all the times that he IS with you.
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progression 
next try 4% okay fingers crossed x x x
Update on Snowy - Thur
