Hun, you've just had another part of life's crash courses.
Lesson nr one when having kids; folks will ALWAYS have an opinion about what you do or don't do.
Lesson nr one when having a disability and/or diseas; folks will ALWAYS have an opinion about what you do or don't do.
Lesson nr one when being a human; folks will ALWAYS have an opinion about what you do or don't etc.
People are pretty occupied with thinking off and thinking for others. That's their problem, not yours. Your family wants to do this trip, is realistic about it and thus will do the trip and not come back thinking "we were nuts, never should've done it". It's not like you want to do harm to your little one. You're very realistic, are preparing thouroughly and got the docs approval. Go for it! Let's give folks something to talk about.
Yes so true. Thanks
We used those huge zip loc bags to keep our equipment dry. It worked well. My best advise to you is to plan, plan, plan. I am a planner in general, but with a special needs infant planning is even more important. I was afraid we would have an equipment problem, and we did. The suction machine canister broke on the plane. No problem thought, because I had another one. Make sure you pack extras of everything!
My daughter pulled her trach out for first time the first night of our trip. My husband and I paniced! We did what we were supposed to do and got it back in uneventfully. Now she pulls it out all the time!
It also made me feel better to research area hospital and doctors. We found Arnold Palmer Children's to be good and they had an ENT that works with trached kids. It was calming to know that if we had a problem there was a place to take her.
Dont let other make you feel bad for taking her. You are the parents and you know her best! We had plenty of looks when we told people we were going. I understand the need to get away. Andrea spent four months in three different hospitals. My husband and I spent alot of time away from each other and away from our son. The whole family needed the trip. It was great! Have a great time with your family!
Zip loc bags great idea! We have an entire suitcase dedicated to medical supplies plus my carry on bag with all the extras. I am a huge planner I have a notebook full of lists. Although I didnt think of checking out the hospitals oout there. I'll ask her docs this week. She goes tomorrow for the next week to Children's in Boston. Hopefully they might know some good docs in the Orlando/Disney area.
Gosh her pulling her trach out must of been terrifying! Glad you were able to get it back in ok.
All the hospital stays and being away from eachother sounds just like my family. We had never spent a night away from our older daughter until Alexa. She asked me last stay if she had to move into Meme and Poppy's forever. Thank you so much.
Good for you for going and making the most of the situation your family has been dealt. Our son has feeding pump, IV pump, monitor and oxygen with him on his wheelchair. We always left it near the exit attendent and there were no issues with it being safe!
Thanks. You wouldnt think anyone would want medical supplies, but you never know these days.
