Yes, you read it right.....we are officially helpless. Meaning we said 'goodbye' to our nursing as of last Tuesday for Elle. We have been given no choice in the matter and apparently have 'others' making the decisions on our behalf. The transition was to be gentle and easy us into our 'new way of life' but once again our wonderful health care system has dropped the ball and we went from help daily to absolutely no help.......we were told to pick dates that we would like our health care aide to come but unfortunately our request don't suit her availability. This remains a work in progress meaning nothing is happening.....I had chose days that matched up with Kaden's so that I could have one day a week that I could get out and get some things done. Another thing that doesn't seem to be working out is our every second Saturday night out. It is important for us to be able to go out just us and see a movie or whatever people do when they go out. As of right now we have nothing booked for Kaden's every second Saturday night for the rest of the summer. Elle's health care aide comes but we can't go out!! The lack of compassion in people is surprising to me yet over the last 7 years has taught me not to be so surprised.....Oh well I suppose everything will work out in the end its just going to take the summer to figure it out.
Kaden continues to have high levels of Phenobarb so we are once again decreasing (2x) and then a blood level will be done again next week. He was super sleepy today and really didn't wake up till 5ish. He kinda comes alive at 5!!!!
I took both of them for a walk today on my own in their new stroller. I will have to take a picture of them in it and post it so everyone can see. They look so cute in it!!!!
Paul is on holidays next week so that is going to be a big help. He is also taking a week in August which is huge cause he has never taken 2 weeks in the summer EVER!!!
Other than that we are not very exciting. Hoping to spend more time outside and enjoy the nice weather.
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This blog is about our children Elle and Kaden who mean the world to us. They have had to face severe health related issues that many children or parent would run scared from.....we love them and will be there for them through all challenges that come their/our way.....
3 comments:
I know that I am taking off for a week but maybe we can work something out one day where I could help with the kids and you could run out and do whatever needs doing. My mom can keep the girls for a while.
We're looking forward to seeing you on Saturday.
Kristen
So what the hell??? You're not getting any more help re: Elle? For the summer or permanent? Good grief Candace, that is absolutely NOT right!
So sorry to hear that you've lost your help for your children. The system is really insensitive and just makes decisions without consultation with those affected. Would love to help you. All I can do is give you emotional support through your blog. Thank you for sharing.
Trudy
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