Traveling with a Medically Special Needs Child

September 19, 2012 By 1 Comment


Caden

We have been home from our vacation for over a week now. This year’s road trip included six of us in a minivan for about 1600 miles of driving over a period of seven days. From a medical supply perspective, during the seven day trip Caden went through more than a dozen oxygen tanks,  received nearly two dozen tube feedings, and he spent a total of almost 5 hours on The Vest®.

Now before I go into more details, I want to give a disclaimer. I am not complaining about excitement created by missing oxygen tanks or all the gear required for Caden when traveling. I am trying to educate folks on the complexities associated with moving a medically special needs child around even though he does not “look special” to many people as seen above with the first fish he caught. One of our very dearest friends mentioned that we should not have that much to pack for this trip since Levi does not need a pack-n-play any longer. That last part is true, but most folks forget or don’t realize just how much gear goes along with being exclusively tube fed and having to be treated daily to prevent pneumonia and micro-aspiration due to the lack fo swallowing ability. Caden’s care is not as simple as grabbing a box of tissues and a suction machine like most folks see us do when we are out and about around town.

Medically Special Needs Child Travel Supplies

The medical equipment required for any over-night trip with Caden requires:

  • Tube Feeding Supplies* (Formula, feeding pump bags, a feeding pump with charger)
  • A spare G-Tube button
  • Extra feeding tube extensions
  • Syringes
  • A suction machine and charger
  • Oxygen Supply (1.5 liters during sleep hours)
  • Tissues
  • Bed pads
  • Spare linens
  • The Vest®
  • A jogging stroller (Caden does not have the stamina to walk for long, especially in the heat.)

The picture above may help put things into context. This picture includes most of the items listed above (minus three days worth of oxygen). This stuff took up the entire back storage area of our Kia Sedona van plus the floor space under Caden and Levi’s feet and the stroller when on the roof. The picture does not include any clothes or toys for Caden or anyone else in the family.  The basketball was added to the picture for scale.

Now that the trip is over I realize that we might have been able to carry enough oxygen to last the full week on the road. However, it would have been a tight fit. The fear of the unknown and the thought of a possible pneumonia while on the road made me very nervous about how we might get additional oxygen for Caden while 750 miles away from our home supply (over three dozen tanks in our garage) if needed. That is where the real story of the week came in.

I went ahead called the medical supply company that we use about three weeks before our trip. They are a national company and I arranged to have enough oxygen delivered to the Twin Lakes Camp and Conference Center in Hillsboro, IN to last us through the Labor Day weekend. We arrived on the Friday before Labor Day at approximately 3:30pm. I immediately checked in with the camp director to see if the oxygen had arrived. It had not. Caden uses about two standard E bottles (one shown in picture above) of oxygen per night when a concentrator/generator is not available.  I knew we did not have enough oxygen tanks to make it through until Tuesday when the medical supply offices opened back up for business. As I mentioned earlier, we could not comfortably transport enough for an entire week while traveling and so we only had a little in reserve after one night in a hotel already. I  realized that it was late in the day on a Friday of a holiday weekend and I tried to contact the office in Lafayette, IN where the oxygen was supposed to come from. I got nothing but a busy signal after about seven attempts within a 30 minute period. At this point it was a few minutes before 4 PM and I was about to start driving to Lafayette to pick up the oxygen tanks myself when I decided to make one last attempt to contact the medical supply company via their toll-free service. I was transferred to a lady at the Kokomo, IN office which was about 20 miles further away than Lafayette. The lady calmed my nerves and assured me that she would get oxygen delivered even if it had to be done the next day on Saturday…which was fine with me since we had enough to make it through one more night. She even gave me her cell number in the event we had trouble getting what we needed. Come to find out the lady had a delivery truck in Crawfordsville which was only about 15 miles away from our location at Twin Lakes and they had the tanks on their truck that we needed. She diverted them to Twin Lakes on Friday evening (arriving after 5pm) and they gave us the tanks we needed. The two guys on the truck were super nice and seemed genuine in their efforts to help in getting the supplies we needed.

JJ playing OctaballSo the weekend started off on a positive note even though we had a little scare. We ended up having an outstanding time visiting with friends from all over the country for the weekend. In addition to a variety of planned activities coordinated by our friends Joey and Carla Link the boys fished and played Octaball.

We continued our vacation with a tour of the Indianapolis Motor Speedway (IMS) and then spent two nights in the Cincinnati area so that we could visit the Creation Museum. These two stops rate a blog post each so I will save that for another day. The boys loved kissing the Yard of Bricks at IMS and we we all enjoyed our fourth visit to the creation museum where we got to meet Dr. Georgia Purdom and Buddy Davis.

 

 

 

Filed Under: Family Fun, Parenting, Special Needs Tagged With: , , , , , , , , , ,

Pneumonia Fighting Machine

July 25, 2012 By Leave a Comment

Caden using The Vest by Hill-Rom to fight pneumonia

It appears that Caden is wearing some sort of NASA space suite or maybe part of one fo those G-Suits that fighter pilots wear. No. Caden is not going to be the next person to walk on the moon. At least not at this point in his life. The machine that Caden is attached to is called The VEST® by Hill-Rom. Caden was diagnosed with Bronchiectasis a while back and The VEST was prescribed to help Caden keep his airway clear. Bronchiectasis is one of the conditions that The VEST.

This machine sends pulses of air into the inflatable vest and that creates a vibration on Caden’s torso to help break up potentially infectious mucus in his airway and lungs. Caden uses The VEST about 40 minutes per day when he is well and even more on days when he is battling a diagnosis of pneumonia like he has had this past week.

Caden is doing better in recent days but the fevers and need for oxygen seems to come and go. Caden takes it all in stride. He has got accustom to the pain that his little body has to endure on a regular basis as a result of medical complications caused by 22q11.2 (DiGeorge Syndrome).

This is just one of many pieces of medical equipment that Caden uses regularly.  When we travel and stay over night somewhere we have a special additional list for Caden. In addition to clothes, shoes, toiletries, and The Skunk, Caden’s list of medical gear includes:

– Feeding Pump
– Feeding Pump Bags (1 new bag per day plus a few spares)
– Formula (6 – 8 oz cans per day)
– Syringes for giving water and medication
– The actual medication (some require refrigeration)
– Suction Machine
– Oxygen Tanks and/or Oxygen concentrator/generator machine
– Oxygen canula and mask
– Pulse Oximeter
– Thermometer
– Spare G-Tube button
– Braces for his feet
– Bed pads
– Chargers for everything electrical

If we fly then things get even more complicated. We have a trip planned in a couple of months and we are going to have to arrange for empty oxygen tanks to be replaced with full ones while we are on the road. We can only take so many in the car and still have room for our family of six and all the luggage that goes with a crew that size plus the list above.

Do you have a special need child? what unique equipment does your child require?

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Date Your Children

July 19, 2012 By Leave a Comment

Building relationships with your children requires an investment of time on your part as a parent. We also must be intentional about scheduling time with each child and making this time special to the child. Bethany over at The Graceful Mom tells us how she and her husband meet the relational needs of their children through dates.

Bethany’s post is part of the Babywise Networked-Blog week for July 2012. Members of this network of blogs include:

Valerie Plowman, Chronicles of a Babywise Mom 
Hank Osborne, Daddy Life
Maureen Monfore, Childwise Chat
Bethany Lynch, The Graceful Mom

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Teaching Sons to Fire Guns

June 23, 2012 By Leave a Comment
9 Year Old Firing a Winchester Model 67

9 year old Riley firing a rifle for the first time

Firing a rifle for the first time is one of the most treasured memories that many men carry for the rest of their lives. Water cooler or camping conversations between men often revolve around the subject of first experiences with a gun. It is one of the early steps in teaching young boys how to literally kill it and drag it home. Men in the USA provide for their families today primarily by earning a direct deposit paycheck that goes into a joint account that their spouse uses to gather meat, bread, fruits, and vegetables from the local super market or grocery warehouse. Even still, many boys and men long for the hunt. And the hunt begins with learning some skills.

Daddy Coon HunterToday I was able to give my son that first gun shot experience as he became the fourth generation to fire this rifle. I don’t know for sure if anyone in my family fired this rifle before my Papa (i.e., grandfather). But we do know that this model of Winchester 67 Rifle began being manufactured in the early thirties so it is possible that Riley could be the fifth or sixth generation in our family to fire this same weapon. I also know that I used this rifle to kill my first wild animal (Raccoon) as a young boy when I was near Riley’s current age of nine.

Fear of Gun Sounds

While this event did plant a lasting memory in my son’s mind, and he thoroughly enjoyed it, I also had a ulterior motive. You see, Riley has a fear of loud sounds. He is not afraid of guns, but the loud noises that some guns make. I plan to take Riley to his first NASCAR race later this year as a birthday present and I want to make sure that his fear of noise does not prevent him from enjoying the race. I mentioned Riley’s fear of noises in a guest post I did on Childwise Chat about Childhood Fears. I explained how my wife and I dealt with what seemed to be an irrational fear with one of our other boys. Today allowed me to work on understanding more about Riley’s fear while also desensitizing him to loud sounds. The day was a success because on this front because Riley did not complain about the noise and he clarified that his fear is more of sudden loud noises and not so much the loud sound itself.

We went to a public firing range in the Francis Marion National Forest about an hour from our home. We joined some of my Navy co-workers and their family members. At the range there were folks firing everything from .22 rifles, to .45 caliber model 1911 mil spec handguns (my personal favorite concealable cary handgun), to shotguns, to high powered hunting rifles. As you can see Riley did pretty well on his first day at the firing range as you can see below. The green circles are his hits with a little assitance from me with the aiming on a couple of them.

Riley with his target after his first day on the firing range

Riley had fired a BB Gun before at a Cub Scout day camp, but this was a whole different deal. Riley said he liked shooting the rifle, but he would rather do it somewhere that does not have all the loud handguns and rifles next time. I am going to work on finding a friend who has a little land in the country that we can use the next time we go to target practice.

As I was completing this post I ran across a news story about a 14 year old boy who shoot an intruder during a home invasion. The 14 year old was home watching over his three younger siblings. Given the way this young man handled himself I am inclined to believe he must have had plenty of exposure to guns and training on their proper use. Some adults would have had a hard time handling that situation. I am also glad the intruder was not fatally injured. Taking the life of another human being is tough no matter how old you are and regardless of the circumstances.

What is you opinion of kids learning to use fire arms safely?

Filed Under: Boys Being Boys, Parenting, Safety Tagged With: , , , , , , , ,

Pinewood Derby Winners

February 18, 2012 By Leave a Comment

Pinewood Derby WinnnersEvery one of the Osborne boys old enough to participate brought home a trophy this year. Two of my boys are in Cub Scout 458 that meets at Crowfield Baptist Church in Goose Creek, SC. Each year, like many Cub Scout packs, they have a Pinewood Derby race. This year we entered three of our boys Riley, Caden, and Josiah (JJ). Josiah entered in the sibling category since he is not old enough to be a Cub Scout yet.

They did a time trial and then the races were set up so that the cars of similar speed would compete against each other. I knew when I saw all three of my boys in the same race that they were all very closely matched. However when they raced I noticed that the cars finished 1, 2, 3 (youngest to oldest). There were only two other cars in the race with them since they were racing five lanes at a time. Each car got a chance to run each lane so out of fifty cars entered that created a need for 250 races. so that every care got a chance to run on every lane. Caden with his 3rd place overall trophyThen the prizes were awarded based on the best times for each car regardless of the lane they got that time from..sort of. Since all of my boys ran in the same race (obviously a fast heat), I got to see that JJ’s car finished ahead of his brothers in all five races. So it is impossible that Caden’s car recorded a time faster than JJ. However when the trophies were awarded Caden was given a overall trophy and JJ only won 1st place in his category (siblings). Riley was awarded 1st place in in the Bear Den category. I think the leaders decided to only award overall trophies to scouts since they are the official members of the pack.

Either way, my boys did not care. I was just glad that to see that they were happy for each others’ accomplishments.

Riley actually scored a sponsorship from DaddyLife.net.  I taught him, as best I could, how to negotiate for sponsor money on his car. I offered him $20 to be on the Daddy Life on a derby carhood but he insisted on putting a McDonald’s logo replica on the hood even though McDonald’s was not paying him to advertise for them. I paid Riley $10 to be on the hood. His grandpa also negotiated a spot on the back fo the car for his bible study for grieving family members called “Jesus Cares”.

Below are some more pictures of the boys’ cars and trophies. This was a fun adventure but a lot of work for Daddy. 😉 Hopefully Riley will be able to build his own car without assistance next year since we may be entering four cars if Levi is ready to be added into the mix.

Riley, car, and trophies.JJ and his trophy loot

HOEI-Daddy Life Racing Team Cars

In the paint booth the week before the raceI hope you enjoyed the pictures as much as we enjoyed racing today.

 

 

 

Filed Under: Boys Being Boys, Family Fun, Parenting Tagged With: , , , ,

Pinewood Derby Cars 2012

January 30, 2012 By Leave a Comment
Boys Being BoysPinewood Derby Cars

Caden and JJ showing off their first Pinewood Derby Cars

This is Caden’s first year in Cub Scouts. He and his brothers recently attended an event at the local Lowe’s store in Goose Creek, SC called Pinewood Derby® Days. This is sponsored by Lowe’s and Dremel® tools to help boys create their derby cars while learning about the safe use of tools.

 

Filed Under: Boys Being Boys, Education, Family Fun Tagged With: , , , ,

Reason for the Season

December 5, 2011 By Leave a Comment

Sherry and I recorded a new episode of the HSSN Podcast this week. Sherry shared some great resources to help teach your kids the true meaning of Christmas. These resources are valuable regardless of whether you are a parent of a kid in public, private or home school. Check out the post and podcast over at the Home School Support Network.

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Parenting Matters in Education

November 21, 2011 By Leave a Comment

An article in the NY Times this weekend emphasized the need for parentally involvement. While the studies that the article referenced focused on academics the last few words of the article I can agree with:

“…let’s stop putting the whole burden on teachers. We also need better parents. Better parents can make every teacher more effective.” Source

What I could not find in these study results was how effective parental involvement in teaching character development might help school performance. Teaching children manners, self-control, and respect for authority can go a long way in equipping a teacher for success.

I have known for a long time that parent involvement was the best solution to improving the public school system in this country. My wife taught 3rd grade in the public school system for a few years after graduating from college. My wife learned quickly that kids were not coming to school adequately prepared. By prepared I mean the basics. Kids had not been taught to sit quietly and respect authority. The kids had little self control and some would demand attention constantly as if they were the only child in the room that mattered.

What was the root of this? Many kids have missed out on some very basic parental involvement. In many families the definition of parental involvement has digressed to a point where it is measured by frequency of attendance at plays, music recitals, soccer games, cub scout meetings or baseball games. Many parents consider themselves involved if they check their kids’ homework, volunteer in the child’s class, and attend PTA meetings. A study referenced by the NY Times article was performed by The Center For Public Education. The limited results that they reported confirm what parents consider to be healthy participation by their own actions:

“National survey data from the National Center for Education Statistics shows that attending school meetings or events is the leading form of parent participation in schools, followed by school fundraising activities.” Source

And then some kids don’t even get this much involvement from their parents. Some are bounced from grandparents to friends homes for one reason or another. However the data by the Center for Public Education showed little difference in parental involvement across racial and economic lines.

“…while 82 percent of parents of white students said an adult checked their child’s homework, the rates were higher among parents of African American and Hispanic students, which reported rates of 94% and 91%, respectively. Other studies have shown that lower-income and minority parents often have the same level of involvement in education as others — even though it may not necessarily be reflected at PTA meetings or school fundraisers.”

All that said I would argue that these studies miss the mark from the start. The type of parental involvement needed most is the kind that teaches character and strong values. However this type of parental involvement is mostly outsourced to peers via day cares beginning as early as six weeks old in many families and then other families do so with pre-school programs by age three years. The list of reasons why parents are forced down these paths or choose these methods is longer than we could possibly address on this blog. Are you one of these parents? How do you compensate?

 

 

 

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Podcast Episode 13 – GKGW Fathers Mandate 2 – Regularly Demonstrate Love to your Wife

October 13, 2011 By Leave a Comment

Podcast: Play in new window | Download

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The Fathers Mandate Part 2 of 8
Based on Chapter 4 from Growing Kids God’s Way 

1.  A father must cultivate a sense of family identity. (Review)

– Be proud of your family – as Mr Ezzo said be the cheer leader (We are the Osbornes and we…) Rise above the level of mediocrity!

I added a couple of blog posts this week. One related to Cub Scout activities this past weekend. Our oldest two boys got to shoot BB Guns, Bow and Arrows, and Sling Shots.

Make sure your activities are in line with your family goals and values. Do you have them written down? Are your goals Simple, Measurable, Attainable, Realistic, TRUTH based?
What education method makes your family unique: Public, private or home school?

2.  A father must regularly demonstrate love to his wife.

Mr. Ezzo says, “If you really love your children then give them the gift of confidence and security. Show them how much you love their mom.”

In Episode 4 I talked about the importance of Dating and Couch Time.

In Episode 7 I talked about the need for dads to take your wife out of her role as a mom and put her back in her role as a wife. To do this you need to elarn your wife’s love language. The 5 Love Languages: The Secret to Love That Lasts by Gary Chapman 

In the coming weeks I will share ideas to help dads fulfill the remaining mandates
3.  A father must understand and respect his child’s private world.
12 minutes
4.  A father must give his children the freedom to fail.
5.  A father must be the encourager of the family.
6.  A father must guard his tongue and his tone and learn to measure his response against the excitement on their faces.
7.  A father must routinely embrace his children.
8.  A father must build the trusting relationship on God’s Word, not on human wisdom.

Tech Time

Microsoft Intelligence Report

The PDF report can be found in the download section ont he right side of the page.

An in-depth perspective on software vulnerabilities and exploits, malicious code threats, and potentially unwanted software in the first half of 2011.

45% – User Interaction Required
26% – Autorun of USB or network files

What you can do.

  1. Be smart.
  2. Implement strong passwords and Patch your systems. There are patches for your OS, Browsers (IE, FireFox, Safari, Chrome) Aplciaitons (Adobe flash, reader, etc), iTunes, Qiucktime, MS Office.

FEEDBACK:

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Technology Safety is more about Behavior than the Technology!

 

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BB Guns, Sling Shots, and a Red Mustang

October 11, 2011 By 1 Comment
Caden and Daddy on the Archery Range

Photo taken by Riley Osborne

The weekend was so much fun. I enjoyed it almost as much as the boys. Riley and Caden learned how to shoot good old fashion Daisy BB guns, bow and arrows, and sling shots (wrist rockets) loaded with dog food. Our local Boy Scout district group puts on a an event called the Cub Scout Tiger Safari each year in the fall. This event allows new Cub Scouts Caden to experience some really cool activities that they would otherwise have to wait until next summer when offered at the day and resident camps. Things like BB Gun and Archery can only be offered at district and regional level events for safety reasons.

The belt loops and pins that the kids earn are the big prize. Belt loops are awards for elective sports and academic activities that have specific criteria in order to earn. Since the BB guns are only offered a couple of times per year at district or regional events it is an extra special treat for a Cub Scout to earn the BB gun and Archery belt loops. Going into this weekend Riley had earned nearly a dozen belt loops already for chess, computers, foreign language, fishing, swimming, flag football, and more. He was allowed to attend this Tiger specific event as a participating sibling.

The Tiger Safari was held at Camp Moultrie just North of Moncks Corner, SC. This is a Boy Scouts of America camping area located on the shore of Lake Moultrie right next to the Navy recreation center called Short Stay. It is about a 45 minute drive from our house in Goose Creek, SC.

Josiah and Levi in the Toy Red MustangOnce we arrive back home we spent a good portion of the afternoon playing outside. Josiah took Levi for a ride int he little red convertible muscle car. The boys love to run this miniature version of a Ford Mustang around in circles in the cul de sacin front of our house. It was  an action packed day that left a smile on every child’s face.

 

 

 

Here are more pictures from our day:

Riley with the sling shot.

Sling Shot

Caden on the BB Gun Range.

Caden shooting a Daisy BB Gun at Cub Scout CampCaden getting ready to fire a wrist rocket.

Caden getting ready to fire a wrist rocket

Riley shooting a BB gun.

Riley with the Daisy BB Gun

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