Upset

christyw · #1 07-02-2003, 08:57 AM

Jamie,

I would say that most of us don't go on long trips or vacations. I know that we personally haven't even thought about a long trip - further than 2-4 hours in a car - and that is probably mainly because we knew Gaithy would be coming off her vent by age three (which she is now off of as of this spring) and that the trach will come out soon - so we will be free of equipment and things like that (plus we just don't have the money to do it right now :-). ) I think it's a different mindset when it's like this. I've talked to another mom who said she was going to just live life to the fullest, basically, and not worry about the medical stuff because she didn't know when that would get better or go away, etc.... So, our mindsets are different - even tho we all should probably try to live each day like it could be the last - we don't all do that.

I have no advice on travelling anywhere - but I know that others, such as Michelle and Becky (adults with trachs/vents) do because they've done a lot of it. I think most of us with little kids just haven't gotten around to taking many trips - unless it be to a specialist in another state. I hope that you all are able to go (wasn't it to Niagra Falls??) and that everything goes well.

christy

cariaad · #2 07-02-2003, 09:48 AM

Jamie, Im sorry you're upset, but I like many others can't even think about a long trip. We don't have a vent, just a trach, but Alli does NOT travel well, a trip across town is such an ordeal I can't even contemplate a vacation (if we could ever afford one). I do read all posts (you can see how many people have viewed the post) but don't have an answer. I wish you luck with the trip and please keep update Blaize's page, I visit often. Deb

Jacks Mum · #3 07-02-2003, 09:59 AM

Hi Jamie,

I am sorry i didnt reply to the post about Blaize, Instead I did and now do go to her site (weekly) and post in her guestbook.

I have been following Blaizes progress since she was in hospital starting around a month ago... She has come along way! and she sure is an Angel!

I cannot answer your questions above as my Jack is still in hospital and i will be asking the same questions soon no doubt!

I hope you get more replies....
Take Care
Jessica

#4 07-02-2003, 11:45 AM

I too have followed blaize's ups and downs with great interest - though i do not often post. I think you can post your questions anywhere! sometimes no-one answers beecause no one is on or they do not have an answer for you!
I identify with you as my daughter is 18 and so an adult - and we try to make her life as varied and interesting as possible. I am totally with you on that - we believe that our daughter should have as rich a life as possible. She is not on a vent tho, just the trach and so i have no experience of travelling with a vent. She loves to go in the car (we have a van adapted to take her wheelchair) but she does get anxious about going to new places. She loves music - especially classical so that helps! Do you play anyhting to Blaize on your journeys? - music, stories, whatever she likes. Also we find taking a few familiar things helps - her quilt, soft toy etc
I wish you every joy in your trip to Niagara - something I should love to see!!

Olga · #5 07-03-2003, 02:06 PM

I hope your trip goes really well.
Last year we took Grace on holiday (a five hour drive away). The trip was not a success. Grace developed a cold while we were away and we nearly came home early because we were running out of catheters! So my advice is take zillions of catheters with you.
have a great trip. Olga