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!