Halloween and Mediocrity

Halloween and Mediocrity EpisodeWhat do we do on Halloween instead of trick-or-treat, festivals, or costume parties? Our family enjoys each others’ company like we do many other nights throughout the year because in our family we believe that Halloween is Optional.

Ericka over at Large Families on Purpose asks if you are going to have a “Happy” Halloween? Her birthday falls on October 31 and that seems to make people think that she is an expert on the traditions of Halloween. And given her blog post and the number of positive responses, I would say that she is more than an expert than most on this subject.

Family Travel Adventures

Check out our Daddy Life Facebook Fan Page to see us kissing the yard of bricks at the Indianapolis Motor Speedway. We were traveling with our son Caden who has servere medical special needs related to 22q11.2 (DiGeorge Syndrome).

Mysterious backyard sound – What or who is that Owl talking to?


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Traveling with a Medically Special Needs Child


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.




Pneumonia Fighting Machine

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?

Tent Camping with Kids

A little camper asleep on daddy's shouldersA few weeks ago I took Riley, Caden, and JJ camping. Well I started out on Friday night with Riley and Caden. They are the two Cub Scouts in the family. By Saturday afternoon Caden had experienced enough of the outdoors for one weekend and wanted to go home. Keep in mind that the camping trip took place exactly four weeks after Caden had back surgery and this kids is on oxygen at night. So we have to give him extra credit for sleeping in a tent even one night with temperatures in the low 40s.

Sherry had come out on Saturday with Josiah (JJ) and Levi so they could see Caden and Riley race in the Rain Gutter Regatta and receive some awards. Riley ended up winning the Raingutter Regatta against all scouts of all ages in all dens in the entire pack. He went undefeated for the weekend. We thought it was the boat design (with help form your truely) until Riley traded boats with another boy and beat him with his own boat. As you can see in the picture of Caden below it is a fairly low tech race so Riley must just have figured something out that no one else could. It is not like he was coached on how to best blow through the straw. The sails barely got hot glued on his an Caden’s boats just minutes before leaving the house on that Friday afternoon. So if you are here looking for the secret design of a Cub Scout Rain Gutter Regatta boat, it does not exist. The speed on Raingutter Regatta is all in the technique in my opinion and you kid either gets it or they don’t.

Josiah was itching to stay the night on Saturday after the boat races even though he nearly fell asleep on my shoulders.  The boys were all exhausted and Caden wanted to go home. Caden had begun to run a fever and was showing signs of needing oxygen earlier in the evening than normal.  Sherry and I swapped out Caden and JJ for the night Caden went home with mom and Levi to sleep in his own bed. As a result three out of four boys got to tent camp with daddy in one weekend.

Caden Racing in the Cub Scout Pack 458 Rain Gutter RegattaWhat I learned about camping with little boys Riley (9), Caden (7), and JJ (4) is that flexibility is absolutely necessary, required, and is a non-negotiable.

I had to bring along some O2 tanks, a suction machine, and a feeding pump for Caden, but we do that everywhere we go anyway as a result of his medical special needs. That’s part of our family identity right along with tent camping with daddy. We don’t make a big fuss about it and no one else does either.

The thing is that you don’t want to ruin these experiences like tent camping for these little guys. You want them to have fun. You want to create memories and build lasting relationships. That was exactly the result we got. All of them are chomping at the bit to go camping again. Mission accomplished!

What have been some of your experiences tent camping with little kids?

Podcast Episode 14 – Smart Phone Security Concerns

The Fathers Mandate Part 3 of 8
From Growing Kids God’s Way
Scroll down to the reference for Chapter 4

3.  A father must understand and respect his child’s private world.

Public World – What people see and hear when you are out and about in a public setting. The things that can be seen by strangers on the street.
Personal World – The world where your closest friends and family commonly see and hear things you that are never shown in public.
Private World – This is on the inside. People have to be invited in to see what is in here.

Open window phenomenon – Its when your child invites you into their private world. It can come when walking or at bedtime. Be careful because you never know when the open window will come.

I have already covered the following:
1.  A father must cultivate a sense of family identity.

Riley’s birthday trip

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

In the coming weeks I will share ideas to help dads fulfill the remaining mandates
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

iPhone 4s

Pretty much looks the same on the outside, but on the inside:
Duel processor promises to give better performance
Two Antennas for better reception
Upgraded Camera to 8 megapixels with improved optics including an added lense
Voice activated search and response from Siri

“The Defense IA Security Accreditation Working Group (DSAWG), which is the DoD approval body for Security Technical Implementation Guides (STIGs), determined that iOS devices should not be deployed in the DoD at this time due to unmitigated iOS device security risks. Therefore the DSAWG directed the draft iPhone/iPad STIG be removed from the IASE web site.” Source

Cellphones will become a way to attack otherwise protected devices: report

  1. Attached to USB for charging and data transfer – moving pictures from your phone to your PC or Mac
  2. They act just like Thumb drives Remember Stuxnet?  The attack on Iranian nuclear facilities.
  3. Small keyboard make fro more mistakes typing. How many times have you had to apologize for an auto correction done by your phone?
  4. Browsers are less sophisticated and do not give indications of insecure content.

Convenience comes at a price. The easier it is for the user to do the wrong thing, the easier it is for hackers slip into you phone and then into your network at home or in the office.


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Technology Safety is more about Behavior than the Technology!

Do Child Safety Seats Expire?

Some manufacturers and car seat technicians say that car seats do expire. But the facts are few and far between on this subject.

A few years ago we went through the same task of rearranging car seats for our kids. Riley moved into a booster and Josiah had out grown the infant car seat (carrier). We had a fairly nice Britax that we got when Riley was less than a year old. It was in good condition and had never been in a vehicle when an accident occurred. The seat was nearly six years old and I was wondering whether or not the seat was still usable despite its appearance. I had heard that car seats expire. Is this a true statement?

I probably would not have even given this a thought but rather let common sense dictate whether or not to replace a car seat. But, sometime during the previous spring we had a fire rescue team at our church one Sunday afternoon doing inspections on the installation of our car seats for anyone who wanted to participate. Ours were all installed and being used correctly, but the technician did give me a little feedback that I found interesting. One of the things he told me was that Riley’s Britax seat was expired. “DO WHAT?,” was my reply. This guy proceeded to tell me that car seats expire after five years. Don’t get me wrong. I get the concept. These things are made of mostly plastic and plastics can become weak when it gets pushed and pulled on enough. The belts can become weak when they get enough acidic spit up, juices, and other foreign substances on them over the years. All that said, you would think that the manufacture would have this plastered all over the boxes that these things come in. After all, that would equate to a fresh sell ever five years and more revenue for their companies. Anyway, I heard what the guy said and went on about my business since this he did not give me a reference for his data. Even though I did get the concept, how can you you pick a number and say that in X number of years a car seat will expire? In my opinion you can’t because there are too many variables to consider.

Here are some facts about car seat expiration. There are currently no federal laws requiring that child safety seats have an expiration date. I have also found no state laws referring specifically to expiration dates. If you find that a seat has an expiration on it, you are not likely to get put into jail for using it past its expiration date, but you should certainly contact the manufacture to make sure you understand why they put that date on the seat.

Yes, some seats have expiration dates on them? Why? The explanations vary. Maybe the seat nmaufactures are trying to ride the wave of fear created by the technicians who tell us that the seats to expire. Many “convertible” car seats are sold touting that they can be used for 5-35 lbs rear facing and from 20-50 lbs forward facing. Those seats would need to be replaced before one child outgrew them if they were to expire in five or six years. For instance, the average boy will reach 20 lbs between 8-9 months of age based on the CDC Clinical Growth Charts that most of our pediatricians use. That same average boy will reach 50 lbs at about 7 years of age. That means that the average male child would be required to get a new seat before reaching the maximum allowed weight for most convertible seats simply due to an expiration.

Some Child Passenger Safety Technicians claim to have been taught that seats expire after five or six years depending on who trained them.  One organization that offers certification classes for Child Passenger Safety Technicians says, “Make sure the safety seat is less than 10 years old (preferably less than five), the expiration date stamped on the plastic has not passed, and it has never been used in a crash.” Reference

The bottom line is that opinions rather than facts seem to be driving the five, six, or ten year expiration date. The expiration age varies depending on who you talk to.