With 2 days left until we leave for California, they are going to be spent running wild trying to get things ready. This will be our first trip with the trach, and while I thought it wouldn't add much to our load, its proven me wrong!
You know we don't let Jaxsons disabilities stop us from taking our beloved Disneyland trips, or any trips for that matter. You just have to be super prepared. We bought a luggage carrier for the top of our car, and we've quickly run out of space even with that. When we bought our Odyssey last year, we made sure to have a tow-hitch put on in case we needed to get a small trailer, and we may just be there already!
Last year I also bought one thing that has been a lifesaver! A tacklebox. Sounds strange, but I use the two plastic bins to put all the little medical supplies we need, and the rest of the bag holds feeding bags and oxygen tubing.
Two things we've added this year that are going to end up taking up a lot of space are our humidifier...
and the air compressor that runs the humidifier.
The new plan is to get another big suitcase and put them both in there so we don't have to make twelve trips to the car to take stuff up to the hotel.
So all together right now Jax has 4 suitcases of stuff! Not to mention the suction machine and feeding pump....
and pulse oximeter, 7 oxygen tanks and a portable concentrator. Oh and a special needs stroller. Whew, thats a lot of stuff. Keep your fingers crossed it all fits in the car! The more I talk about it the more worried I get it won't all fit!
When Jax was in the hospital a few weeks ago we bought the whole family Lifeflight sweatshirts. They were having their annual sale, and we love to support them. The Lifeflight team has transported Jax before, and since we live 45 mins to an hour away from the hospital, its nice to know they can get him there fast in an emergency! But the smallest size they had was a 4t. Now Jax is 4 but we all know he doesn't even come close to fitting in 4t clothes. But we had to get it. This is what it looks like after I washed it. All you can see are those chicken legs!
Oh and maybe an eye!
We've talked about pinning the crotch and making it a onesie!
27 comments:
Tackle Box = FANTASTIC IDEA! I'll have to remember that one!
Love the pics!
Haha, Girl you must LOVE Disneyland to go throught this! Props to you and the family for not even flinching, but rather problem solving to make it there. You guys are awsome!
Okay, I love the onsie idea! A onsie with a hood...you may be onto something...something wonderful!
I love your tackle box idea, I swiped that a long time ago!!! I hope you guys have fun! Hug Mickey Mouse for the Phenny Man!
WE CANNOT WAIT TO SEE YOU GUYS!!!
Safe travels and we will see you soon!!!
Cut off the sleeves and Jax will be fine! Then run over to UHaul and pick up a trailer, and you're off!!! So jealous - have fun (like you need to be told that!)
I use a tackle box like that for all my home health nursing supplies. It works great and keeps everything organized. Have a great time in D-land!
Was soooooooo good to see you guys again Saturday night. Thank you so much for coming up. Was great to see Ray in heaven with his Chimi! :) Wishing I was going with you guys or at least following..hey I have space in my car! :) june, lets hope for june...call you this week!
This is what constantly amazes me about you...that you guys are even willing to travel with all that stuff. I think I would feel defeated!!! But not you guys....you embrace it and just figure it out. We literally can't wait to see you guys on Thursday...my girls can't stop talking about it!! And by the way, I didn't post a comment on your last post because I was literally speechless about you seeing that sweet baby in the waiting room. Life really is not fair sometimes but I can't help but wonder if you are still suppose to be fighting for her.
That's alot of luggage...but like Denise said, and I agree that that's really what amazes me about you, you don't let anything defeat you! Hats off to you. I hope you guys have a wonderful trip...can't wait to see all the pictures.
Wow - that is a LOT of stuff. I hope you can fit it all in and that you have a great time on your trip!
I don't have the humidifer or the compressor, but it did take me five trips to unload my van at Disney in January. I hope everything fits. What backpack is that for the Kangaroo Joey? It is the same pump Tomas has but his backpack is a piece of ummm...junk. I love, love, love, the eyeball picture! Maybe it will fit him when he's ten.
That is A LOT of stuff!!! We just got home from a weekend away and my husband thought that we had a lot of stuff.....I'll have to show him this and then maybe he won't complain so much the next time we pack up to go away!
I seriously don't know how you do it?! That is a ton of work, but I know that it will be worth it! Mickey Mouse makes up for all the hassle!
I'm loving Jax in his sweatshirt! He looks so snuggly in it! Give him a squeeze from me! HUGS!!!
I hope you have a great time!! I might have to borrow the tackle box idea.
Looks like you have it all figured out. What an awesome way to use a tackle box! Jax looks great in red. Cute pics! Have a wonderful trip!
We have made two 12 hour round trips with Marissa and all her stuff. It is a daunting task to be sure! I hope and pray you not only have a blast on your trip but that it goes off without a hitch.
Have a great time!
Oh my gosh! you are such a huge help! We don't like any of the GI docs at PCMC either so we have an appt on thurs with Harnsberger. But we also made one with a new GI doc at PCMC dr Pohl. They are for the same day and I am trying to figure out which one we want to go with.
For neuro we see sukanju. She is nice but I don't really know what to do about her situation. Maybe we will try filloux.
Thank you so much for your help. I hope you have an awesome trip to Disneyland. I'm hoping we can go maybe this summer. I'll have to talk to you so you can give me some pointers. The only place we have ever gone with her is Boston and we did okay but she was in the hospital the entire month (thats what we were there for) and we didn't have our other kids with us.
Thank you so much for your help.
Man you and I feel the same way. I was reading your blog and read that you might be going to Boston? If/when you go I think you will love it. That is an awesome hospital and everyone was great there. We came back and told PCMC about the great experience that we had there and gave them some pointers. It was truely a good thing for us to go there. I know you are so super busy getting ready for your trip. So I will try not to bug you. I talked to my husband and we are going to see harnsberger. But anyway when you get back we should totally meet I would love to talk to you about some things. I can't believe we live this close and haven't found each other till now! Okay well have so much fun in Disneyland and take lots of pics. I'm sure you will but can't wait to see how things go!! And hear about all the fun you all had!
It is hard to pack for these guys, isn't it! You are troopers. :) I can't wait to see you guys! Have a safe drive.
Thanks Lacey. I haven't tried the Infinity. Since I'm the one who carries the bag it hasn't been worth the effort to switch. You are the first person I've heard say negative things about the Infinty. I'm am going to try the bag though. I always wondered if it would fit the Joey - now I know. I really hope you have a fantastic vacation.
I'm with everyone else, I absolutely LOVE the tackle box idea. I may not have the same supplies but it would certainly organize Nathan's CF stuff.
The sweatshirt looks adorable. =) Have a well deserved trip to Disney Land and enjoy yourself!!!
Oh that boy knows how to pack for a trip doesn't he. LOL. Love the pics. and his chicken legs.
I think you may have to get a trailer - that is a lot of stuff. It will totally be worth it - so many people wouldn't even attempt what you are doing - I think you are awesome for making sure Jaxson is included in all your family stuff! Have a safe and fun trip and give that Ella girl a hug from us (and Mickey Mouse).
Oh and I can't believe you saw the girl you were supposed to adopt - what are chances seriously? That is rough. Hoping that you find a little girl soon to add to your family - she will be lucky whoever and wherever she is! Love you guys!
Wow girl... you have a lot to pack! Have a blast!!!! You guys deserve it!
Have lots of fun on your vaca....holy cow that's alot of stuff!! (You really should consider even a small generator for your house...as a just in case!!!!)
Good luck getting everything together and hitting the road! I love Jax in his hoodie, he looks awesome!
Lacey - I hope you have a wonderful trip! Give squeezes to Zoey & Miss P for us. :)
Love the pump backpack - Did it come with yours, or did you find it somewhere?
The voting thing for the posters - I think you can only vote for 3. I am not sure if you can vote multiple times. :)
Have fun! Hugs to all!
Steph and Christopher
absolutely precious...so many prayers for you all!
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