Call us Master Travelers!

We Made It!

All the packing, planning, organizing and preparation that it took me to get ready for our Texas Summer Adventure is already paying off. I am so proud of myself for accomplishing this goal, and crossing this off the ole bucket list of things to do with a Differently Abled child that requires so much care. In my efforts to live life to the fullest, and make some amazing memories- I am glad to check this adventure off the list.

Traveling with the crazy silly amount of bags and luggage went so smooth. Our airport and security experience was good. A super sweet friend of ours met us at my house early AM yesterday to help get us and all our gear to the Airport. And I must say I am the luckiest daughter in the world- I had help from my mom and I don't know what I would have done without her. I am so thankful she was able to take the day off and help us get to Texas. When checking our bags at the Curb, we notified the SouthWest Sky Captains that we had arrived with a disabled child and needed assistance. They were so nice and very helpful. I had to show them my letter from William's pediatrician that stated his diagnosis, and that he was medically fit to fly with all his specialized equipment. I got really nervous for a few minutes because the sky cap asked me if I had the official form printed out from Southwest.com that stated that I am the caretaker of the child and that I know how to manage and operate all the equipment... and I did not have that printout! I explained that I am William's mother/Caretaker and that I am the only person that can operate the equipment! A Southwest Airlines supervisor had to come speak with me (I'm assuming to see if I was competent enough to manage the equipment) she asked me a few questions, and sent us on our way wishing us happy travels. Another Sky cap got us luggage carts and we piled all of our 9 carry ons onto the cart and a transport aid worker helped us with all our belongings from the curb, through security and to our gate! Security was a silly adventure in itself- but went super smooth in my opinion. We had to walk trough the metal detectors and a TSA agent pushed William in his wheelchair past the metal detector. TSA did inspect every medication and every item we had. They even did a full body pat down on me.... not once, but YAY me- Twice. Boobs, Butt, Inner thighs- the whole bit. After getting felt up twice, TSA gave us two thumbs up and wished us Happy Travels! We got to our gate, and had time to grab breakfast at Fox Sports Grill. We tipped our transport aid guy, and we were all set to board the flight! We got a pre-board pass and we were the first peeps to board the plane. William sat in his carseat, and (Between 77%-98%, so I was adjusting the oxygen flow from 0.5LPM to 1LPM to 1.5 LPM to 2LPM. William seemed unaffected, though! He slept for 20-30 minutes. Isabell was a super good girl, she had to hold her me-maws hand during take off and landing! It was cute. Richie met us in the Houston Hobby airport and helped us get our checked bags. We were so HAPPY to see daddy! After we got done at the airport and unloaded all our bags at the RV- we went out for a steak dinner at SaltGrass Steakhouse and then dropped my mom back at Hobby so she could fly back to Phoenix. We had a great first night here in the trailerhood.

Enjoy the photos of our Airport Experience (I wish I had better ones, but this gives y'all a glance of what it was like!)

More updates and photos to come as our summer adventure continues!

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!

Waiting for the 30th to roll around!

We're Goin' to Texas, Y'all!

Hey Leon  Family Fans! We are so excited- in 1 week we will be flying to Houston to spend most of the summer as a family! I am so ready and feeling confident that William's first flight will go great. I am looking forward to having a silly and ridiculous time with this adventure. If only there were cameras rolling to capture all the work it took to plan to fly with my Trached William who has significant limited abilities AND Isabell. She has limited abilities as well and requires alot of 1 on 1.

William will have 8 carry on bags. 2 suction machines, feeding pump togo bag, trach togo bag, Oxygen Concentrator bag, 2 bags with medications, and blood pressure machine bag. All these items cannot be checked luggage, and have to stay with William at all times. I will be checking 2 bags full of supplies and 1 bag full of clothes for Willie boy. Isabell will have her carry on backpack and I will be checking her one clothing bag. I will be taking my Laptop bag (and no carry on bag) and I will be checking 2 bags for myself.

My mom is flying with me so I have a helping hand during the flight, and she'll be hopping right back onto another flight returning to Phoenix the same day. My step dad may possibly be joining us for the flight too!

We are most excited to spend time as a family. Being with each other every day for 6 weeks is exactly what we need. It is a challenge being in a long distance relationship with your HUSBAND! With KIDS! So we are up for the travel challenge. We will make the best of it, and have fun doing so. I will try my best to take as many pictures as I can while on the trip. Going to the airport with so much gear is going to be super interesting! :)

Bring on the Summer!

What a busy month May has been! Isabell is almost out of school for summer break, and William has been busy with doctor appointments and therapies. We have been working hard, and preparing for our summer vacation that we have planned for June. We are flying to Houston, TX to spend the month with my husband since he is working there and we don't get to see him very often! This trip via airplane will be our William's first airplane ride- and we are super excited to go live a little. I never in my life knew that preparing for a trip on an airplane would take so much planning and preparation. Traveling with medical equipment and my medically fragile child will be quite the experience- but we are up for the challenge! Here is a sneak peek of the list I had to make for TSA so I can get through Airport Security On May 30 for our Southwest flight...

William Leon is a 2 year old little boy with multiple health issues. Due to his disability, William will be traveling with several things and equipment that are medically necessary to meet his daily medical needs. The following is a detailed list of all items William and his caretaker will be carrying with them at all times during travel:

A. Medications

• Amlodopine 1mg/mL compounded liquid. Used for High Blood Pressure.
• Hydrocortisone 2mg/mL compounded liquid. Stress steroids for adrenal insufficiency.
• Spironolactone/HCTZ 10mg/mL compounded liquid. Diuretic.
• Lansoprazole 3mg/mL compounded liquid. Used to treat acid reflux.
• Glycoprolate 0.2mg/mL liquid solution. Used for secretion management.
• Hydrocortisone 5mg tabs. Stress Dose Steroids.
• Prednisolone 15mg/5mL liquid solution. Lung steroids.
• Singulair 4mg tabs. Allergy medication
• Nasonex nasal spray 50mcg. Allergy medication
• Albuterol inhaler 90mcg. Asthma medication.
• Flo-Vent inhaler 110mcg. Asthma medication
• Tobramycin Inhalation Solution USP 300mg/5mL. Inhaled antibiotics.
• Triamcinolone Acetonide Ointment USP 1%. Skin Irritation.
• NYSTOP Nystatin Topical Powder, USP. Skin Irritation.
• No-Needle Syringes for administering meds.

All medications need to stay with William and his caretaker at all times during travel.


B. Suction Machine
William has a tracheostomy tube placed in his airway. The tracheostomy tube gets blocked with secretions, potentially causing difficulty to breath. When there is a buildup of secretions in the tracheostomy tube, the use of William’s battery operated DeVilbiss suction machine is required to clear the secretions. The suction machine is operated by William’s caretaker to clear his secretions as needed.

The suction machine requires the following parts:

• Suction machine
• Suction bucket and lid
• Suction tubing
• Multiple 8FR Suction Catheters
• Pink tubes of sterile saline
• Chargers
• Carry Case

Suction Machine needs to stay with William at all times during travel.

C. SeQual Eclipse Medical Oxygen Concentrator
William has respiratory challenges, and often requires the use of medical oxygen. William’s caretaker manages William’s SeQual Eclipse Travel Oxygen Concentrator that meets all requirements to fly with SouthWest Airlines.

Along with the oxygen, A Masimo Pulse Oximeter monitor that is is medically needed to monitor William’s blood oxygen levels as needed.

The Masimo Pulse Oximeter monitor consists of:

• Masimo Pulse Oximeter Monitor
• Sensor cord
• Charger Cord
• Carry case

SeQual Eclipse Medical Oxygen Concentrator and Masimo Pulse Oximeter needs to stay with William at all times during travel.


D. Kangaroo Joey Feeding Pump
William is unable to eat or drink anything by mouth and has a feeding tube placed into his abdomen. This is how William gets all of his nutrition and fluids. William is fed with the automatic battery powered Kangaroo Joey Feeding Pump. The feeding pump has a bag with long tubing attached to it with liquid nutrition in the bag and delivers a small continuous amount of liquid nutrition to William continuously 24 hours a day. The feeding tubing stays connected to William at all times.

The feeding pump consists of:

• Feeding Pump
• Feeding bag
• Carry Case
• Charger Cord

Feeding Pump and Nutrition bag stay with William at all times during travel.


E. Pediatric Wheelchair
William needs his pediatric Wheelchair Stroller during travel since he is unable to walk or function on his own. WIlliam’s caretaker will care for William while getting in and out of wheelchair during travel.

The wheelchair can be stored underneath Aircraft, but William needs wheelchair upon exiting aircraft.

F. Smart Vest CPT Medical Treatment Equipment
William receives CPT treatments 2x daily that is medically necessary and requires a special Smart Vest along with its equipment. The smart vest medical equipment is stored in 2 pieces of luggage- for ease of travel.

I will be carrying all of the items listed on the list onto the Aircraft, and we will be checking 6 regular bags, checking 2 medical bags and we will have about 10 carry-on bags (8 of William's and Isabell and I will have 1 each) and my laptop bag. My mom is flying to Houston with us so I have a set of helping hands, but is flying right back to Phoenix when we arrive to Houston on May 30.

While we are in Houston- we plan on doing the touristy thing. Go to the Zoo, NASA, The Aquarium and visit Houston's Museums. Richie works downtown, so I am sure we will be meeting him for lunch here and there. Richie also recently moved our RV to a new RV Resort that has a lake- and our RV spot backs right up to the lake. There is lots of green grass, and the lake is spring fed... so there is fishing and we can swim in the lake. One thing that we will have to do is keep ALL eyes on Isabell at all times in case she decides to be a dare-devil near the water! Our 5th wheel literally backs right up to the water! I will be taking loads of pictures, and I will try and give all you blog readers an update while I am there!

I attended the Ryan House Community Breakfast this week, and it was a great event. To see so many people at the event so eager to learn about Ryan House, and then be so generous to donate much needed funds to our beloved Ryan House was humbling to watch. The featured Ryan House family had an amazing story, and were so very well spoken. A true example of why we need Ryan House in our community. Ryan House is one amazing organization, and we are so very lucky to have the only one of it's kind right here in Phoenix. My mom and I attended the event with some very close friends of ours, and I want to thank them for coming with us and supporting Team William and our Ryan House. Another HUGE thanks to our nursing agency that provides Home Nursing to William- MGA Home Healthcare. They attended the breakfast and occupied a table of 10 for Ryan House and Team William. There were 650 guests at the Breakfast, there were great guest speakers, and it was a great morning watching the large crowd eagerly learn about Ryan House and all it's greatness- and it was even more amazing watching the large crowd be so generous and donate much needed funds to keep our Ryan House doors open for William and special kiddos like William that live here in Arizona. Thanks to anyone and everyone who made Ryan House a reality- and thanks to those who have it in your heart to lend a helping hand to my family and families alike that need a little respite break. Thanks to all the people who donate funds, supplies, toys, blankets, art supplies, KidKart wheelchairs, medical equipment and anything Ryan House needs. Thanks to all the Ryan House Volunteers and Teen Volunteers. And thanks for our amazing Ryan House team- family liaisons, child lifers, RN's, CNA's, social workers, chaplain. Y'all ROCK!

Today I have an end of the year meeting with Isabell's teacher, and I will be enrolling her for 1st grade. This makes me so sad! There is no way time has gone by this fast, and we are soon approaching Isabells 1st grade school year. I just love how much she is blossoming, and how much developmental progress she is making. Her little personality is so cute. She has always had a hard time speaking and verbalizing, but for the first time ever- we have been having lots of verbal conversations. It is getting easier and easier to understand her verbal words, when it was always hard to understand her before. Her favorite thing is FOOD! And we have had to really watch her with that. Since Richie is not home, I have fallen into a habit of not preparing meals at home and we have been eating out alot and choosing super unhealthy options. I need to get my stuff together, and get back into the game of preparing fresh yummy meals at home and keeping the fridge stocked with healthier yummier foods.

We only have 13 more days in Phoenix- then we are off to Houston for a month!














 

Busy little Leon Family

Hey Leon family Fans! We have, as usual, been keeping ourselves busy! Last week William stayed at Ryan House, Isabell went with my mom and I flew off to Houston to visit Richie for the week. I dropped Willliam off at Ryan House on Monday 4/23 and I took the first Southwest Flight out early Tuesday am 4/24 to Houston. As many of our fans know, Richie is currently working in Houston on the LightRail project there for MASS Electric. Richie and I had a nice week together. I think we forgot how much we really liked eachother! ;) Although Richie worked during the day, we met up for lunch each day that I was there visiting and went out to dinner together each evening. I got to check out the city, the big city with terrible roads that are so narrow and bumpy! Driving Richies Ford Powerstroke everywhere was interesting to say the least!

The Ryan House Community Breakfast at the Biltmore is coming up on May 15. It is a FREE fundraising breakfast event benefiting our beloved Ryan House. If anyone would like to attend, please email me at crystal.92782@gmail.com and I can get you the info to RSVP by May 7th. It is an awesome event. On Thursday 5/3 William, Isabell and I are going to Ryan House in the AM for a little media filming event and I believe the footage will be played and shared at the Ryan House Community Breakfast.

Another fun thing coming up next week at Ryan House is a professional photo shoot that we have been invited to attend. I was invited to bring my mom, and the kiddos- a makeover crew will be there to pamper us and make us beautiful for our professional photo shoot. All free of charge! I am excited to take my mom and the kiddos and have our photos taken together. Ryan House is such a wonderful place.

And the most exciting upcoming event is our Family Trip to Houston coming up. The kids, my neice Lydia and I are flying from Phoenix to Houstom on May 30 to June 28. I have been packing and planning for the trip for a couple weeks now, and I am realizing this is alot of work! We will be traveling with alot of medical equipment and luggage. We are excited to spend an entire month with daddy though. Seeing him everyday for a month will be the greatest ever, and we will be so happy to be with daddy. Since Richie is rarely home, we miss him so much!