Parenting the special needs...

At A Glance...

This is a blog dedicated to my kiddos, Isabell and William. These amazing kids were born extra unique and one of a kind. It's currently unclear what Isabell and William's genetic disposition is- but they have faced many developmental and medical challenges. They each face their different challenges, but they are so much alike. We really think Isabell and William have the same un
diagnosed genetic syndrome. With a combined 24 hospitalizations, and 20 surgical procedures between these Warrior Kiddos, their needs are extra ordinary, and they are spectacular little children. I am the luckiest mom alive, and we are #leonfamilyaz

As I have time, I like to escape to this blog and give my readers a sneak peek into the window of our lives. Happy Reading!



Sunday, May 27, 2012

Houston

Hey Leon Family Fans! I am so anxious to leave for our Houston trip. We leave in 3 more sleeps! The past few days I have been restless, and excited to take my kids on one wild and silly adventure. I have everything pretty much packed except for our clothes- I am going to do laundry one last time before I pack the clothes!

The 2 suction machines, pulse oxcimeter, and Oxygen Concentrator that we are taking on the plane are not included in this photo lineup....BUT here is a sneak peek of a few things that are stacked in my living room ready to go! 




Pictured below is William's SmartVest Gear that fits nicely in it's designed luggage. I combined the two pieces of SmartVest luggage into a large bag. This will be checked luggage.





Pictured below here is a large suitcase full of Medical Equipment & Supplies. Nebulizer and Neb kits, a variety of different suction catheters, trachs, gravity feeding bags, feeding pump bags, formula, tape, stethoscope, trach cleaning kits, etc. This will be checked luggage.




Pictured below is William's Kangaroo Joey feeding pump. At home it hangs from an IV Pole, and when on the go I put it in an insulated lunch bag (I do not prefer the provided ToGo feeding gear backpacks!). This is attached to William at all times and will be goin with us on the plane.



Pictured below is all of William's medications. There is 1 small lunchbag that will have William's refrigerated compounded liquids with cool packs and the other lunch bag will have a month worth of inhaled antibiotics (AKA Tobi) with cool packs, and they will be placed into the larger Zebra striped bag along with all the unrefrigerated meds-respiratory meds-creams and pastes. It is important that all of these medications stay with me at all times- this bag will go on the plane with us.



Pictured below is what we call our Trach ToGo Bag that will be going on the plane. This goes everywhere William goes, and it has just about everything in it to aid in the event that William has difficulty breathing, or if I need a replacement of something (ex: gauze, syringe, tape). It also has a stock of supplies I need to manage the trach everywhere I go (ex: suction catheters, extra trach ties, saline bullets, saline wipes, scissors, etc) and of course supplies for a diaper change. Kindof like a diaper bag on steroids!

2 comments:

  1. and that's why I don't ever go anywhere...LOL.. Great job organizing everything!

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  2. Crystal!!! You are a life saver. I have been having anxiety about how to get everything on the plane. Thank you, thank you for posting this and sharing it with me. This post has been so helpful!

    ReplyDelete