Our Family of 4

Toys Delivered

2012-01-04T15:19:00.001-06:00

Sorry, this is late but......

The toys were delivered. Below is a photo of us delivering the toys at St. Louis Childrens Hospital in early December. We were AMAZED at the amount of toys we collected. Toys came from as far away as Ohio, and even Kade's school got involved and collect a huge amount of toys.

Thank you to all who donated, til next year.

Toys Part II

2011-11-20T15:16:00.001-06:00

Last year about this time we held the first annual toy drive for St. Louis Childrens Hospital. We started the toy drive last year to "repay" Childrens for the toys that Kade received during a stay over Christmas two years ago. Last year we collected over 8 50 gallon bags full of toys. Go here to read more about our first ever toy drive.

Right now we are collecting for round two of the toy drive. We are off to a good start, and are in the process of filling the floor in Kade's room with toys. We would love to collect more toys than last year, and we might just do that.

If you feel compelled to donate please contact me via email (josh [at] ourfamilyof4.com) and we can make arrangements to dropoff/pickup the toys. Like we said last year the toys need to be new, and unwrapped. We are not asking for $50 xbox games, something as simple as a deck of playing cards or a board game will do the trick.

Leaving Holland

2011-11-14T10:42:00.001-06:00

Written as a continuation of "Welcome to Holland" by Emily Perl Kingsley. My point of view as a parent mourning the loss of a child with special needs. This won't make sense you have not read the above "Welcome to Holland"

So, you were expecting a trip to Italy and got re-routed to Holland. It seemed to take a while but you became accustom to Holland, it's terms, technology, and expectations. Some would even say that you have become an advocate for trips to Holland, an ambassador if you will. You started making plans and expectations for your future in Holland. You could even say you are excited for what the future holds for your stay.

You awake one morning to realize that your trip to Holland has come to an unexpected end. You have come to LOVE Holland, and now you are being told to leave? You had plans, things left to do and see, but you have to leave. You have made friends, contacts, and started Welcoming Committees for new comers, but it is time to leave.

You leave Holland with wonderful memories of the tulips, the first windmill you saw, the beautiful Rembrants you got to see, and who could forget the wooden shoes. You will take with you amazing memories of your stay in Holland, although unplanned and unexpected, it was an AMAZING trip. You have made equally amazing friends, that will remain friends long after you trip is over. You will continue to be an advocate for Holland, knowing that a stay there will forever change your life. You will continue to support others making an unexpected trip to Holland, assuring them that they too, will have a trip of a lifetime.

However long or short your stay, you will realize that you are so very thankful for the unexpected turn of events that lead you to Holland. You leave, hoping that you help make Holland a better place than when you arrived. Then you realize, you might be leaving Holland, but Holland will, for the rest of your life, be apart of you.

In loving memory of Kade M. Bauman 02/07/08 - 10/14/2011

Please feel free to share and link to anyone who would get something out of this.

Kade's Eulogy

2011-10-17T15:03:00.002-05:00

Dear family and friends,

When God gives you a child, you have no idea what the future holds, and you immediately start making plans and aspirations for your baby. You can make all the plans you want, but God has his plan too, and no matter how bumpy or smooth the path, it is the Perfect Plan.

It is no secret that Kade’s path was full of obstacles, but he had his share of smooth patches too. God knew Kade’s path when He made Kade, and it was Perfect. Sure Kade spent more than his fair share of time in the hospital. Sure, Kade lost countless moments to seizures. Sure, Kade never verbally spoke, walked or even sat on his own. But what made his journey perfect is what he taught us, and who he brought into our life.

The day kade started having seizures he brought some VERY special people into our life. Nurse Tina Klassing was one of the first nurses on the 12th floor to take care of Kade. God put her in Kade’s room as part of His perfect Plan. Tina was not only Kade’s nurse, she turned into our counsler, playmate for Kade, she setup a play date for Jackson, and most importantly became a great friend. Another very special person God and Kade put in our life that day was Dr. P, one of the world’s best neurologists. Dr P did not consider Kade just another kid with seizures. He took time to get to know us as a family. He stayed in Kade’s room until ALL of our questions were answered. Unfortunately he moved to Seattle to work on ground breaking DNA research but to this day still holds Kade in his heart, and on the top of his research list.

The next group of people God and Kade brought into our life were our GREAT Therapists and support people from First Steps. These ladies came into our home, and worked with Kade, hours on end, to teach his muscles what to do. Almost every night of the week, we had at least one of these wonderful women in our home. I dont know where we would be with out Shelly, Krista, Pam, Brandellen, and Jo.

Some of our most cherished memories with Kade are the amazing Make-a-Wish trip we took to Disney World. We had a wonderful time visiting the characters and Kade had a one on one meeting with Barney! The best part about it, we were there together as a family, grand parents included! Thank you Make-a-Wish!

Kade transitioned from First Steps to the Early Childhood Special Education system when he turned 3. We were introduced to more amazing people including new therapists and a wonderful teacher, Melanie. Immediately Melanie became an advocate for Kade and put a thermometer on his wheelchair so the bus driver would know if Kade was getting to hot.

Kade’s life wasn’t about what he couldn’t do, it was about showing others what THEY can do. He taught us so many things. He showed us that we had more patience than we could ever imagine, more love than we thought possible, and how to fight for those without a voice. He opened doors, made friends, showed others how to love, all with a goofy Elvis smile on his face.

Kade has a very special relationships with both sets of Grand Parents. They were extra sets of parents for Kade. Without them, things would have been so very different. He loved all of them SOOOOOOO VERY MUCH. Kade loved his big brother too. Jackson went out of his way to make sure Kade was involved in everything he could be, even as a special guest in his classroom. Jackson is the best big brother and Kade loves him for that. God put another very special Jackson in his life. One day while at Vision Therapy Kade got to meet a little boy, named Jackson. They never said a word to each other, but they were the best of friends, and as God’s plan unfolded, were classmates.

Dr P told me one day that he ran more tests on Kade in 2 weeks than he typically runs on kids over a two year period. What Dr P didn’t know is that Kade would do more in 3 years 8 months and 7 days than most adults do in a lifetime.

I did not come close to painting an accurate picture of the life Kade had or the lives he touched, but it gives you an idea. I know, too, that I did not come close to mentioning everyone that helped us and Kade along the way. Please know that we hold a very special place in our hearts for EVERYONE that has helped Kade or even took a moment to say hello.

When God came to Kade’s room Thursday night and took him home, the very first thing he did was opened his eyes nice and wide, stood up, kicked his wheelchair to the curb, and RAN around to meet all of the family and friends that were waiting for him. God’s plan was perfect!

Kade, we love you, we miss you, and you will forever be in our hearts.

Until we meet again.

Thank you
Josh and Annette

Wings not Wheels

2011-10-14T16:01:00.001-05:00

It is with a heavy heart that I write this. God called Kade home last night. Kade passed away peacefully in his sleep. We can only assume it was due to a seizure. Arrangements are as follows :Visitation Sunday Oct 16 4pm Church of Our Lady, Festus MOFuneral MassMonday Oct 17 9:30am Church of Our Lady Festus, MODonations may be made to Make-a-Wish of St. Louis or Variety Children's Charity St. Louis.

Radio show Update

2011-09-23T07:07:00.000-05:00

So we have had two radio show, and surprisingly the went really well. Below are the audio players for each of the shows we have had so far. If you want to listen live, or even call in, our show next show will be Oct 6th at 7pm CST at www.blogtalkradio.com/familynetworkradio

Listen to internet radio with Family Network Radio TV on Blog Talk Radio

Walmart - All talk no action?

2011-09-08T08:24:00.001-05:00

Almost two months ago I posted a photo a friend of mine sent me a photo from a Walmart in Nixa, MO. She was upset that they had placed Special Olympics tshirts in the off color humor shirt section. I explained in my post that it was disrespectful to Special Olympics that Walmart placed their shirts in that section. After that post I actually got a comment on this website from the Senior Manager of Walmart Media Relations, Dianna Gee stating that Walmart understood how the placement was disrespectful and Walmart was going to instruct their stores to find a better place for those shirts. She went on to explain that Walmart is a big supporter of Special Olympics and the proceeds of those shirts go directly to Walmart. I was very happy that Walmart responded, took note, and was going to take action.

However this morning I got a call from Annette, and she said she was at Walmart in Festus, MO and the Special Olympics shirts were back in the off color humor section. I asked her to send me a photo and she sent me this....

What says "We support Special Olympics" more than placing their shirts next to "Your face.....3 millions dislikes", or "For a minute there you bored me to death", or The Grim Reaper, oh I know, Bob Marley says "I support Special Olympics and I wanna jam it wid you".

I guess I should have asked WHEN Walmart was going to communicate with their store managers to move the shirts.

See my original post here

See Walmart's original response here

A new Endeavor

2011-09-06T18:00:00.000-05:00

Just over a month ago I was contacted by a Susan Stephens, a representative of FamilyNetworkTV. She found me via facebook, read this blog, and thought I fit the bill of something she was looking for. Her company hosts TV and Radio shows for families with children with special needs, but they were missing a show about dads. She thought that I would be a good host for a dads show that she was wanting to start. We talked for about an hour and we decided to move forward and try to find some other dads that would be interested about talking about "the issues".

Last week, via google+ hangouts, we all met for the first time. Within the first few minutes of speaking with the dads, I knew we had something. All these dads "got it", and were VERY excited to share their stories in an effort to help other dads that were struggling with the same issues. My co-host is Rob Gorski, from lostandtired.com. He is a dad to three boys, all on the autism spectrum. Although his boys have different diagnosis than Kade, we shared a number of the same stories and feelings.

So, starting Sept 15th at 7pm central time go here and listen, and of you feel the need to say hi, feel free to call in.

BTW if you have not tried google+ you are missing out.

Endings and Beginnings

2011-08-17T18:57:00.001-05:00

Tonight we marked an ending in Kade's journey. Tonight, Kade had his last visit from Shelly, his PT. Shelly was the very first service we added when we got started with First Steps. She was the first person to mention Kade's flat spot, that required a corrective helmet. She was also the person that introduced us to "kid wheelchairs" and the world of standers. She tried to ease us into the world of corrective and assistive equipment and told Annette, "Take Kade for a walk in the stander". Shelly,as with all of Kade's therapists, became part of our family, and we became part of hers. We got to know spouses and kids of our therapists, heard about vacations, and celebrated birthdays. Most of them were in our home more than once a week. Between Shelly, Krista and Pam, and a few others, we had the best group of ladies lead us in decisions that are shaping Kade's life.

Next week Kade has a new beginning his his journey, he starts pre-school. He will meet a new group of therapists to help him. We will REALLY miss his First Steps therapists, but we know this is part of life, things have to change for you to grow. It is poetic that Shelly, the first therapist on the scene, was the last on the scene.

A published author

2011-08-01T14:55:00.000-05:00

I guess you could say I am a publish author now. A month ago I was asked to write an article for Complex Child eMagazine about our perspective on Epilepsy. To visit the site click here Complex Child eMagazine. Below is a snip-it of my article, to read the reset click the link below.

July 9, 2008 started as any typical day in our house. I went to work and my wife Annette was going to take Jackson, then three, to see a movie. My mom came over to babysit Kade, then five months old. My desk phone at work rang, it was my home phone number. I answered the phone to hear my mom telling me something I did not expect to hear: "I think Kade just had a seizure."

At that moment Epilepsy entered our life and began changing our perspectives. We spent nearly an entire month on the 12th floor of St. Louis Children's Hospital trying to control his seizures. We were thrust into a world of tests, wires, drugs, and questions that did not have answers. Click here for the rest of the article.

Wordless Wednesday

2011-07-27T17:48:00.001-05:00

Back to school

Who wants "Normal"

2011-07-26T17:51:00.000-05:00

I have posted here before about the word "Normal" and its use to compare Special Needs kids to typically developing kids. I still contend that each child has their own "Normal" and it isn't up to anyone to compare one child's "normal" to another. I also hope that people, Drs in particular, are more careful when choosing words and not use "normal" but rather typically developing.

This evening I ran across a photo on Facebook that says it all. Have a look.....

Lets take off our pants

2011-07-22T07:20:00.000-05:00

Recently a friend and I started a movie review website, and this has allowed us to see new release movies about a week before they are released. This week we got to see "Friends with Benefits" the new movie starring Justin Timberlake and Mila Kunis. For a quick review - it is a chick flick.

However there were a few scenes that caught my attention (no not JT's ass) as a special needs parent. Timberlake's dad in the movie suffers from Alzheimers and is his actions are getting worse, ie he takes off his pants before he eats. At one point in the movie Timberlake opens up to Kunis about his dad and Alzheimers and says that he is tired of the "pity stares and looks". How often as a parent of a special needs kid have you said this. The second scene that got my attention was when Timberlake and his dad were in an airport and his dad got hungry. They found a restaurant and got ready to eat, and his dad took off his pants. The wait staff and other patrons of the restaurant starting flipping out and causing a scene. One waitress asks Timberlake "Aren't you going to do something?" he replies "Yes" and takes off his pants and sits down to have dinner with his dad. He completely defused the situation by removing his pants and accepting his dad.

If you want to see my review of this movie as well as other new movies including "Captain America" head over to filmbacon.com. Just a warning about "Friends with Benefits" there is one use of the R Word.

Walmart - A response

2011-07-21T13:28:00.000-05:00

I posted last night about a photo that was taken of poorly placed Special Olympics tshirts at Walmart. Walmart visited our site and made the below comment:

Hi Josh,
Thank you for bringing this to our attention. My name is Dianna Gee and I work with Walmart Media Relations.

The placement of the Special Olympics t-shirts was not intended to offend anyone, but we understand how this might have been perceived as insensitive. That’s why we are working with our store managers to move the t-shirts to another area.

As you mentioned in your post, Walmart is committed to supporting the Special Olympics. In fact, the t-shirt is officially licensed by the Special Olympics and a portion of each sale goes directly to the Special Olympics.

Thank you,
Dianna

Thank you, Walmart for taking action. I think it is awesome that Walmart is such a huge sponsor of Special Olympics and that proceeds from the sales of the shirts go directly to Special Olympics.

Over reaction or Innocent Mistake

2011-07-20T20:24:00.003-05:00

I got on facebook this evening and saw a post by a fellow Special Needs Parent. She was at her local Wal-Mart and snapped this photo.

If you look closely you will see this is a photo of the off color humored tshirts at Wal-Mart. Right in the middle is a Special Olympics tshirt. My friend, and myself took offence. I quickly reposted to facebook and posted a tweet to Special Olympics and Wal-Mart asking for comment.

I have not heard back from either Special Olympics or Wal-Mart but have heard from a number of people. A number of people are taking offence to the placement but a number do not see the issue. A common theme with the "non-issue" side of the fence is that Wal-Mart is a huge supporter of Special Olympics and Special Olympics must be allowing their logo to be used.

Wal-Mart is a huge supporter of Special Olympics, and Special Olympics probably did allow usage of their logo, but my argument is about context. Special Olympics is about support and acceptance of individuals with Special Needs. By placing a Special Olympics tshirt next to a tshirt that reads "Your Face - 3 Million Dislikes" the context is NOT one of support and acceptance.

However Wal-Mart can fix this, and rather easy. The easy way out would be to remove the shirt. I would go one step further. I would take the shirts, put them on and endcap or rack with a sign that says something like "By purchasing a Special Olympics tshirt you are supporting the activities of Special Olympics".

Thoughts?????

*UPDATE*
Walmart or Special Olympics if you have a comment please feel free to leave a comment or email me at josh at ourfamilyof4.com

*UPDATE2*
I just got this email from an official Walmart rep.
Hi Josh,
Thank you for bringing this to our attention. My name is Dianna Gee and I work with Walmart Media Relations.

The placement of the Special Olympics t-shirts was not intended to offend anyone, but we understand how this might have been perceived as insensitive. That’s why we are working with our store managers to move the t-shirts to another area.

As you mentioned in your post, Walmart is committed to supporting the Special Olympics. In fact, the t-shirt is officially licensed by the Special Olympics and a portion of each sale goes directly to the Special Olympics.

Thank you,
Dianna

Abilities Expo - Chicago 2011

2011-07-12T19:41:00.001-05:00

About a month ago I read a review of the Abilities Expo that was held in New Jersey. It peaked my interest because there were a number of providers there showing the latest in assistive technology as well as converted vans for wheelchairs, and the company that makes Kade's wheelchair was there. I quickly looked up the website of Abilities Expo and found that they were coming to Chicago in early July. Annette and I decided since it was close and we could visit Amy and Tony, that we would make the trip.

We started making plans and I ended up with a killer hotel deal thanks to priceline. I was able to book the Double Tree in Schaumburg for $45/night! While I was at work Friday Annette and Jackson packed up the van. I got home, grabbed my camera bag and put it in the van. I noticed the van was sitting a bit low, and I thought "I know we are not taking THAT much luggage". I looked at the right rear tire, it was ok. I looked at the left rear tire, FLAT. Long story short, the valve stem broke, had to be replaced but parts had to be ordered. So we packed all our stuff, including Kade's wheelchair in my Buick LeSabre (yes I drive an old man car). Surprisingly everything fit, and we hit the road. We rolled into town about 2 hours later than expected and headed straight for IKEA to do some shopping.

Saturday morning we went to IKEA for breakfast and then we headed over to the Expo. We got registered and immediately started seeing products we thought Kade could use. The first booth we visited was a company that made custom very "cushy" chairs for Special Needs kids. Kade seemed to like sitting up in the chair, and of course Jackson had to try a few of them out. We also got to meet with the Otto Bock reps. They let Kade try out a new stander and it seemed to fit him rather well. When we were putting back in his wheelchair the rep said "umm you do know that his headrest is on upside down right?". Yeah that made us feel like great parents. We had NO CLUE the head rest was on upside down!

We also saw a guy that had turned a standard 42'' LCD tv into a touch screen computer. It was pretty cool because the tv was mounted on hydraulics that could raise and tilt the screen to a desired level and angle. The salesman told me that they are selling a good number of them to VA hospitals for therapy purposes.

We saw a number of converted vans for sale as well. We were very impressed by the newer conversion styles of the rear entry vans. All of the rear entry vans we had seen up until now, the person in the wheelchair had to ride in the "back back" of the van. Now these companies are customizing the middles captain seats to allow the wheelchair rider to sit in the middle of the van rather than the back. Fully loaded the van could hold 7 people including the person in the wheelchair. It was really neat

By far the coolest thing I saw was a product that a man that lost his legs in a tragic accident invented. He took a wheelchair seat, and put it on the base for the Segway. Rather than using their hands to move the wheelchair, the person riding just has to lean forward or back to move the wheelchair. It was really cool to watch person after person try it out and be amazed at the convenience of it.

We also got to meet representatives from FamilyNetworkTV.com. Susan and Tara are two really funny ladies, and they interviewed us about our experience at the Expo. They also let Jackson play cameraman for a bit. Family Network TV is an WebTV and radio station that hosts shows for and about the Special Needs Community. Their goal is to connect families so they know they are not the only ones "fighting the fight". More on FamilyNetworkTV later.

To finish off the day we went to Moretti's for some Chicago style pizza and they did not disappoint. Sunday morning we woke up early, went by Amy and Tony's house for breakfast and then drove the rest of the way home. The car was even more packed (thanks to 3 trips to IKEA), but we made it.

If you find out that an Abilities Expo is coming to your area, GO, it was a great time.

Busy Busy

2011-07-11T17:54:00.000-05:00

Got home last evening from a fun filled weekend in Chicago at the Abilities Expo. I will share more info and pics on that later this week. We have a lot of thing brewing right now. Back to regularly scheduled programming later this week.

PS I am going to a pre-screening of the last Harry Potter film tonight with my dad.

The best ideas...

2011-07-06T18:49:00.000-05:00

We got home and thought we had the perfect method to keep Kade from biting his fingers while in bed on his back. Kade has arm splints that were using during PT and OT at times. We thought we would be smart and put these on his arms to keep him from putting his fingers in his mouth. In theory it would work great, he couldn't bend his arms, so no fingers in mouth.

Thursday morning rolled around and Kade was awake and smiling. Annette got him out of bed and he started screaming. We figured he just needed some Tylenol, he eyes must have been hurting. Once the Tylenol kicked in he ate pretty well, so we just made sure he had some Tylenol or ibuprofen in him during the day.

Friday morning, same story, he woke up happy, but as soon as we moved him, screaming and breath holding. Annette started to worry because the Drs kept telling us that his eyes should only hurt for a day and then he should be back to his normal self. We kept up with Tylenol and ibuprofen.

Saturday morning, same story. Happy, then pissed off. We started wondering what is different, what could be causing the screaming. I had a thought, "could it be the splints". I thought to myself that if my arms are immobilized for a period of time, then I go to move them it hurts. So, at nap time, we did not put the splints on, we used cloth diapers to cover his hands.

After nap he woke happy, and NO SCREAMING after we moved him. Yeah we felt like crappy parents! We had the best intentions, I swear.

Recovery

2011-07-05T18:04:00.001-05:00

Kade has his Strabismus surgery last Wednesday. He was scheduled to be at the hospital at 1pm, and we were there with plenty of time to spare. We were taken back to pre-op and had visits from nurses and Anesthesiology Drs. They wanted to make sure they got his anesthesia right since he has a suspected Mito Disease. Mito kids have a very hard time with general anesthesia. Soon enough the nurses came to get him, they explained that Surgery would last about 2hrs.

We patiently sat in the pre-op room waiting for a phone call telling us surgery was over. Before we knew it, his Eye Doctor came in and told us that everything went as planned and that he would be waking up soon. He did warn us that his eyes would be very bloody and he would even have bloody tears.

We got a call from recovery to come back and see him. Annette and I went back and found Kade whimpering and not wanting to open his eyes. He was holding his stats fine so they let us transfer him to his original room for the rest of recovery. We quickly found that his eyes were really hurting him, he would hold his breath each time he tried to open his eyes. The nurses really didn't like his breath holding so they gave him some pain meds to take the edge off.

The only issue with giving him an extra dose of pain meds is it made him almost impossible to feed. Unfortunately it was nearing his dinner time and he HAD to take his meds. An hour and half later, we were finally to force feed him enough food and milk to get his meds down. We were worried though because he was not waking up, he just wanted to sleep. This was rather concerning because we knew that Mito kids have issues, and we did not want to spend the night. The nurses asked that the attending Anesthesiology Dr come in and asses him. The Dr came in and examined him and talked to us for a good while. She was more than willing to keep him overnight for observation purposes, but didn't thing it was needed. We finally went home about 8pm.

Once we got home, we had to figure something out about his sleeping arrangement's though. Kade likes to sleep on his belly, but we couldn't let him since his eyes just had surgery. The solution was for him to sleep on his back, but he likes to bite his fingers. What were we going to do???

Tomorrow: How we tried to keep him from biting his fingers. Hint: Epic Fail.

Good Karma accepted here

2011-06-28T20:07:00.000-05:00

Kade is having strabismus surgery tomorrow at Childrens. It is a quick surgery, and recovery should be rather simple. They tell us he should be able to attend school on Thursday! The downside is that his eyes will be "beyond bloodshot" because they will be making incisions on/in the eye to "tweak" the muscles that control position.

Keep Kade in your prayers tomorrow. We are not scheduled to arrive until 1pm so we will be spending most of the day up there. Hopefully this will help with Kade keeping his eyes pointed down. We are really tired of people saying "oh look he is sleeping" when he isn't.

Never to early to think about Christmas

2011-06-27T17:46:00.000-05:00

Last year we did our First Annual Toy Drive for Children's hospital St. Louis. We solicited toys from friends to give to Children's Hospital for kids that were inpatient during Christmas. We exceed my expectations, our friends literally filled our living room with toys. It took the entire rear of our van to transport the toys to Children's. I was thrilled!

We will be repeating the Toy Drive this year again. However I am looking for suggestions as to what would make it easier for you, our awesome readers, to donate. Would you be willing to donate via a "chip-in" account that works via Paypal? Or would you rather purchase toys on amazon and ship them to us? We are up for suggestions. Please comment below and let us know!

Making Friends

2011-06-24T17:29:00.001-05:00

Making friends in school can be a difficult task. I never really had a hard time making new friends, I can be an outgoing person, and seem to connect with people easily.

One my many fears, is that Kade will have a difficult time making friends since he is non-verbal and is in a wheelchair. Monday when Kade got home from school Annette was told that a few of the other kids in the class were asking where Kade was while we were on vacation. They missed him being in class. This made me feel good that other kids seem to like being around Kade and notice when he is not around.

Then, yesterday I get a text message with this picture. (that kid's face really isn't a yellow smiley face, I did it to protect his privacy, I don't even know who it is.)

It was gym time, and rather than just have Kade lay on a mat in the Gym, he was put in a wagon and one of the boys in his class pushed him around, while another rode on a bike nearby. It is cool that these boys like to play with Kade and wonder about him when he is not there.

This morning I read a post at a diary of a mom that was about a similar experience.

Vacation Tradition

2011-06-21T18:10:00.000-05:00

33 years ago my mom's mom started a vacation tradition that has lasted 33 years. She purchased a timeshare at Lake of the Ozarks in the Lodge of the Four Season's complex. It served at a guarenteed vacation each summer for her family. We have only missed 2 or three years of vacationing.

Last summer we had to make a decision if we were going to continue to vacation there. From our parking spot to the front door of our unit you have to climb 49 steps. Kade was getting heavier, and with his wheelchair it was impossible to get him from the car inside the unit. We knew we wanted to continue the tradition, but we had to figure something out.

This spring I ran across someone who was wanting to sell their week in the same complex, and the same week that we already owned. Plus their unit only has 7 steps to the front door! I was able to work out a purchase and last week we were able to visit the Lake for the week, and not worry about how to get Kade in and out of the condo.

We had a lot of fun visiting with friends, fishing, and eating out. I fished almost every morning, and Jackson got to fish with us off a friends boat dock. Annette was able to go shopping at the outlet mall. Everyone got to swim and take boat rides.

This is a vacation tradition that we will be continuing for the foreseeable future.

New Visitors

2011-06-19T14:50:00.001-05:00

Since Ellen (lovethatmax.com) posted her "Why Dads of kids with special needs rock" post, I have had over 500 hits on this site.

Thank you Ellen, for highlighting our page, and help get our story out.

If this is a first time visit, please come back, and look through the Archives, and read about our family.

Link Love on a Friday

2011-06-17T17:30:00.001-05:00

A week ago I got an email from Ellen from www.lovethatmax.com, she wanted me to write about how I rocked as a dad, and she wanted to use it on her site in a post about Dads of special needs kids. I really don't like to write about myself in a self serving manor. I asked Annette to write it but, I ended up writing it. Today Ellen published her post and highlighted 7 dad bloggers who are dads to special needs kids, and I was included. The other dad's wrote in a more serious tone, of course I had to ham it up, but Ellen said it was ok.

So, if you want to go read how I and 6 other dads rock as special needs dads, go Here

BTW we are home from vacaion, we have some running to do then I promise I will be posting pictures and a recap.

One word

2011-06-15T16:49:00.000-05:00

Vacation. Sorry for the interruption in mediocre blog posts, but we are on vacation and I have had better things to do (fish, drink beer, fish, swim, fish, eat, drink beer, swim, fish, you get the idea).

I will have a vacation roundup post in a few days, and of course pictures. Meanwhile feel free to browse the Archives.

Two letters

2011-06-10T08:43:00.001-05:00

People often wonder how to start a conversation with a kid with a disability. Annette picked up a flyer the other day that says it all and surprisingly the answer is just two letter.

When did the kids grow up?

2011-06-07T20:25:00.000-05:00

Two days ago Kade started school, even riding the bus! It is the first time that he was away from Annette and I and we do not know what is going on or what he is doing. A new chapter in his life.

This evening I took Jackson over to a "play date" with other kids that will be starting the school year this fall at Our Lady Catholic School. It is hard for me to realize that both our boys will be in school this coming year. Where did the time go?

Jackson had fun playing with everyone. He was excited to see buddies from his pre-k classes that will be joining him at OLS. Time just keeps marching on.

Saying Goodbye

2011-06-06T17:15:00.000-05:00

We knew this day would come, Kade went to school. Annette, Jackson and I watched as Kade, in his wheelchair, got on the ramp for the bus and got loaded into the bus. He will be going half days, 4 days a week until late June for his summer session. This really is the first time that Kade has been away from us without us knowing what was going on, how he is eating, did he fall asleep, or seizure activity. We know he has a great teacher and aide that are watching out for his best interests. They are going out of their way to be very accommodating to his needs. We told him goodbye and to have fun at school. He returned this afternoon WORN out and his Aide said he had a good time at school with his classmates and new friends.

25yr Anniversary

2011-06-02T18:56:00.000-05:00

I have written before about our trip granted by Make-a-Wish, and the wonderful resort that we stayed at called Give Kids the World. Give Kids the World was heaven on earth started by an angel, Henri Landwirth, strictly for kids with life threatening conditions.

This year GKTW is celebrating their 25th Anniversary giving kids a place to get away from Drs, Hospitals, and their conditions. I must say while we were there we did not feel out of place because we had a child in a wheelchair, and we certainly did not think about a single Neurologist while we were there.

Below is a video spotlighting one little girl that went to GKTW while fighting a horrible disease, and how she was changed while at GKTW and how it reignited a fire in her to fight for her life.

Caution - Have tissues handy when watching this video. I made the mistake of watching this at 6:45am, great way to start the day.

Summertime

2011-06-01T18:27:00.000-05:00

Last week Jackson had his last day of pre-school and Annette had her last day with kids. Summer has officially started. Nannie and Pawpaw opened up their pool and Pawpaw and I finished up building the deck around the pool. Monday we went down to their house for a bbq and to spend some time in the pool. We were anxious to get Kade in the water in his WaterWay Baby device. We were a bit concerned about the temp of the water, in the upper 70's, because Kade does not like cold water.

Annette and Jackson got in and the water was "refreshing". We decided to at least try to get Kade in the water and see what happened. He did not clench up or protest so we put the WaterWay Baby on him and look what happened.

No longer a Pre-Schooler

2011-05-27T09:46:00.000-05:00

Thursday was Jackson's last day of pre-school. It was an ending that we knew would come, and means a beginning of a new journey. Jackson will start Kindergarten at Our Lady in the fall. Over the last two years the teachers at his Ursuline have helped him mature, learn his color, and numbers. He has started reading, recently started doing simple math, and writing sentences.

People always say that time fly's when you have kids, but I had no idea it would go so fast. It seems like yesterday he was learning how to walk and chasing buster around the living room. Now he is learning how to add, and playing games on the computer or iPad. He has taken to watching old cartoons that were popular when I was little like He-Man and Scooby Doo. He loves to help cook and bake, and absolutely adores his little brother.

We have a fun packed summer planned for him this year. We are taking a few trips and I am sure will be spending a lot of time at the pool. I know the growth that we have seen over the last two years with be dwarfed in comparison to the growth that we see in the next year or two.

Kung Fu Panda 2

2011-05-26T07:34:00.000-05:00

Jackson and I were allowed to Kung Fu Panda 2 before general release. Follow this link to FilmBacon for my review.

The Hangover Part II

2011-05-26T07:32:00.000-05:00

I was given the opprotunity to go see The Hangover Part II before the general release. Follow this link to FilmBacon for my review.

The R word

2011-05-24T10:41:00.000-05:00

Retarded

We all are guilty for using it. Most say it without thinking of the meaning of the word. I admit I have said it in the past. Since having a child with special needs, this word is like fingernails on a chalk board. The R word is widely used in the medical word to describe individuals that have cognitive delays. Unfortunately the general public use this word in a derogatory fashion.

In the last year or so there has been a growing campaign to stop the use of the R word and substitute it with something else. The website The Social Challenge has challenged it's readers to take a pledge not to use the R word. On their site they have a twitter feed running of all the "tweets" with the word retarded being used. It is sad to watch as "tweet" after tweet are shown and scroll down the screen. Here are some stats from The Social Challenge website - 1142 tweets with the R word today (midnight to 10:30am), 5898 tweets this week (Sunday - Tuesday morning).

A blogger that has a special needs child took it upon herself to respond to tweets that used the term Retard(ed) and confront them that using that term was the same as using the N word or other derogatory terms. Go here to see what happened.

Below is a PSA that will be airing tonight (5/24/2011) during Glee comparing Retard to other slurs such as the N word etc. FOX, CNN, TNT, MTV and others.

Will you take the Pledge?

Movie Reviews

2011-05-24T09:32:00.000-05:00

Soon, very soon, I will be posting reviews for Hangover Part II and Kung Fu Panda 2. I was given the chance to see both movies in pre-screening events.

There is no Heaven

2011-05-17T18:09:00.002-05:00

That was a quote taken from an interview given by world renowned physist and ALS survivor Stephen Hawking. The Guardian, a UK publication, interviewed Hawking on subjects which he is an expert including M-Theory, but some think he stepped over the line by calling Heaven a "fairy story".

In the interview he spoke of being diagnosed with ALS in his early 20's and the bleak outlook for his quality and quantity of life, "I have lived with the prospect of an early death for the last 49 years. I'm not afraid of death, but I'm in no hurry to die. I have so much I want to do first", and he continued ""I regard the brain as a computer which will stop working when its components fail. There is no heaven or afterlife for broken down computers; that is a fairy story for people afraid of the dark,". In his earlier writings he tries to explain that the creation of the Universe was done without God, and supports the Big Bang Theory (not the tv show). So, it is easy to assume that he doesn't goto Church on Sunday Mornings.

Not to disparage Hawking, but here is my take on the situation. I am sure battling ALS for nearly 50 years has made him question God. Being a scientist who's job it is to explain away God, would give him even more fodder for his bleak outlook on the afterlife. I am sure that many parents with medically complex kids, after receiving a diagnosis for their child, questioned the existence of God. If God really does exist how could he let a 5 month old have a horrible seizure disorder that will forever affect their quality of life.

I have written several times that I know things happen for reasons. The reasons do not present themselves quickly or clearly, sometimes taking YEARS to show. These reasons, to me, are a perfect example that God does exist, and loves us. Yes Kade has seizures that will affect him for the rest of his life, but look at the people we have met, places we have seen, and research we are involved in. God has given us the opportunity to meet some of the best nurses and Drs in the country. When Kade was originally diagnosed I know God made sure that Dr. P was Kade's attending since his specialty was Kade's eventual diagnosis. God has helped us find other parents on the same life journey that we are on.

Hawking said that Heaven is a fairy story for people afraid of the dark. Maybe that is the problem, he needs to look for the light.

I like to Smoke

2011-05-16T18:00:00.002-05:00

No, not that kind of Smoke, I like to smoke meat. Over the last few years I have taken up the habbit/addiction/past time of smoking meat. I have smoke pork steaks, beef briskets, pork ribs, chicken, and a failed attempt at smoked peaches. My co-workers love it because I take the left overs in for them to try and critique. One of my co-workers tells me "your meat is so good it makes me moan".

This past weekend I got an early Father's day gift, Annette let me buy a new smoker. I got the Master Forge gas smoker. It is a vertical smoker so allow the heat to evenly distribute in the chamber. To celebrate the purchase I got two racks of baby back ribs and some chicken thighs. We invited both sets of grandparents over and had a nice dinner. Every really enjoyed my ribs. I took the left overs to work and again there was a lot of "meat moaning" happening.

This morning I got word of a local BBQ competition coming up in two weeks in a neighboring town to celebrate their Centennial Anniversary. After making a few phone calls to get details of the competition, I have decided to enter and have my ribs and pork steaks judged. This will be my first BBQ competition, and probably not my last.

Flicking peas and holding breath

2011-05-10T19:26:00.001-05:00

Every kid has their way of acting out, and ours are no exception to the rule, even Kade has his ways of acting out. Most kids like to throw tantrums, throw things, have hissy fits, or hold their breath. Kade likes to hold his breath, and Jackson, well it depends on his mood.

Way back when Kade first started receiving services from First Steps he would protest his therapy sessions by pretending to fall asleep. He found out that this worked really well on one therapist so he kept it up and tried this method on the other therapists. Kade's PT is no sucker, she would make him work through is sleep and make him finish his sessions. On several occasions he would sleep through the finish of a therapy session on to "wake up" as soon as the therapist exited and the door closed. He would wake up and make it known that he got on over on them. After he figured out the sleeping fits were doing no good, he started holding his breath. He really likes this method because it gets A LOT of attention, and things come to a STOP when it happens. He would scream and exhale so much breath his lips would turn blue and he would pass out. As of late this expression of "I don't want to" has stopped and he is complying with therapies.

At times Jackson can act out as well. Most of the time he says something or does something and immediately knows that it was a bad idea. On rare occasion he has hit kids, or done other silly things. He had a rough day at school yesterday and when I got home he had to tell me what had happened. When Annette told him to explain to me what he did, he freaked out and started crying. He looked me in the eye and said "Dad you are really gonna be upset, I did something really bad". I was expecting something like "I hit another kid" or "I kicked a teacher" but what he told me caught me off guard. Whimpering he said "I flicked a pea at someone", really he was crying about telling me that he flicked a pea.

I hope when Jackson is in high school and has to tell me that he got in trouble for cheating on a test, or some other stupid thing high school kids do he will still have that feeling of shame, remorse, and guilt. Kade on the other hand, I think, will still think it is funny and cool to get out of therapy by holding his breath of fake falling asleep.

Happy Mothers Day

2011-05-08T08:00:00.000-05:00

Happy Mother's Day to all the moms who read this blog. Mothers have one of the most difficult jobs in the world ~~besides being a dad~~.

Without mom's us dad's would be feeding our kids pizza and kool-aid for dinner each night. They kids would be wearing the same closes day after day, no laundry would be done unless the cloths had stains on them. The house wouldn't get cleaned, and grocery shopping just would NOT happen. Each year salary.com comes up with what a stay at home mom should earn. This year their figures show that a stay at home mom should earn just over $115,000/yr.

Mothers of special needs kids deserve an extra special thanks today. Without asking for it, these mothers have been tasked with responsabilities that most of us would run and hide from. But they don't run and hide, they charge, head first, without a hint of fear to their faces into situations that would make any other person cower with fear. With all the regular responsibilities of a typical mom they get to deal with extra responsibilities like, arguing with insurance companies, passing meds, having in-depth medical conversations with Drs and therapists, advocating for their child to make sure the IEP goals are being addressed, effectively communicating with a child who does not communicate in a typical manner, dealing with pity looks that their child gets in public, and last but just as difficult at times, dealing with her husband.

I disagree with Salary.com and their survey results. Obviously a mom's value to her family is invaluable, it is more than "doing tasks", it is doing those tasks with love for her family.

Wordless Wednesday

2011-05-04T20:30:00.000-05:00

Traditional Milestones

2011-05-03T17:49:00.000-05:00

Seems as though Jackson has been blazing through some big milestones lately. He came home from pre-school on Thursday with a math paper. It had some simple addition problems on the paper, and he had completed the paper. I asked him if he did the paper himself or as a group. He said he did it by himself. On the way out I saw his teacher and asked her. She confirmed that they did the paper individually, not as a group. When we got home I downloaded a math app on the iPad and let him play with it. Sure enough, he is able to do simple math.

Saturday we were at Sam's and Annette found a pack of intro reading books and showed them to Jackson. He seemed interested in them so we bought them. By the time we got home he was reading the first book and made it to the second book by Sunday.

It absolutely amazes me to think that he will be starting Kindergarten next year, but all ready he is doing math and reading!

What can YOU do?

2011-04-28T18:50:00.002-05:00

I have posted before out not know what to say to people they ask "what is wrong" with Kade. I have also lamented about the "pitty looks" that we get from people when we are out 'n about with Kade in his wheelchair.

I stumbeled across a blog today written by a mom with a special needs mom. She was writing about how she is tired of people asking "what can i do". She came up with a list of responses. Here they are:

Try to look people with disabilities in the eye.
If you meet a child with a disability, speak directly to them. A parent or guardian will let you know if they aren't capable of understanding or responding.
Don’t assume that a person with a disability has a poor quality of life and don’t teach that misconception to your children.
When a person with a life-long disability dies, don’t utter the phrase, “it was probably for the best.”
Don’t waste time on pity–nobody wants it.
Don’t assume I wish my child was different. Don’t assume he’s a burden.
Teach your children that different is OK and be sure to include not just those of a different color, but those who move around differently, talk or hear differently, and even those whose bodies are different.
If your child asks about someone in a wheelchair, don’t tell them to “shush.”
And teach them that looking is OK if it’s done with a smile.
If you find a child or parent or adult who is open about disability, use them and get educated.
If you don’t know about something, ask when appropriate or Google It!
Ban the words “retard” and “retarded” from your home. Even in jest, they hurt people.
If medical stuff freaks you out, imagine being a first-time mom feeding your baby through a tube, and remember that no one likes hospitals or medical equipment–some of us just don’t have a choice.
I you are interested in volunteering, do a stint with people who walk, talk, or even breathe differently than you do. Familiarity will make acceptance easier.
Don’t worry too much about how I’m handing things and ask yourself if you’re doing enough to make this world a safe place for my child and all people with a disability. Do you live like the disabled are invisible? Are you inadvertently teaching your children intolerance because of your own baggage? In your desire to be “polite” have you crossed over into “rude?” Do you make assumptions about things that you know nothing about?

Several of her responses rang true with me as well. 1 & 2 are very important to kids that a disablility but can communicate. They want to be spoken to as much as the next person.

Number 6 is an interesting one. Early on I wished for nothing more than for Kade to get better, whatever that meant. Now, I realize that Kade is Kade, he is perfect how he is, and I need to appreciate that.

Number 8, Kade one a game of duck duck goose at school thanks to his speedy wheelchair!

Number 12 is an subject that has gotten a lot of press due to mis-speakings of individuals (Rahm Emanuel and Lady GaGa off the top of my head). Each tried to explain their gaff, but either way that is a word that should not be used (and will probably end up being a blog post in itself).

Thank you Katy from Bird on the Street for inspiration.

Ob-la-di, ob-la-da

2011-04-27T18:03:00.004-05:00

Life goes on.

The other day Marissa's Daddy over at MarissasBunny posted about things going on in their life and how life goes on. I found his blog by researching kids with infantile spasms. Marissa has infantile spasms and has been on several of the same medications that Kade is/has been on. She is getting ready to have a surgery to attempt to help with better seizure control. Hop over to their blog, read her story, and show them some support. Her dad is doing some awesome work raising money to help special needs kids and raising awareness about Infantile Spasms.

His comment about "life goes on" struck a cord with me. I remember watching the TV show Life Goes On about a family with a child with Down's Syndrome. It was also about the struggles of their family dealing with everyday life. I didn't realize it then, but that show was as good as Parenthood about speaking to families that need a time out, but life goes on.

I distinctly remember being at work while Kade was in the hospital during the 3 weeks from hell. I would spend the night at Children's then drive the 40 miles to work in the morning. Keep in mind that while spending the night I would get to sleep on an ~~awesome~~ pullout chair and have nurses come in to check vitals or when Kade would have a seizure (which was often). When I got to work, I would call Annette and check in to see how Kade was. Most of the calls involved her telling me that he had a big seizure that lasted X minutes and the Dr's had not been in yet. While at work, my life was going on. I remember having someone yell at me about their computer and in the back of my mind I was thinking "you have got to be kidding me, you are bitching about the annoying thing your pc did, and my 5 month old just had a 15 minute seizure". This happened after Kade was discharged too. Annette's mom would text us telling us how he was doing, and at times I would get a call telling me that he had a cluster of seizures and she had to give him his rescue me and called the neurologist to let him know. Again, we totally needed a time out, but life goes on. We were at a Christmas party at a good friends house. We were having a really good time, it was Kade's first Christmas. He had a cluster of seizures and Annette and I over reacted and packed him up and left.

Part of life going on, is growing. We have grown to be able to better handle what we have going on. Yes we still have days when we want to take a time out. Now we field calls from neurologist, therapists, surgeons, opthamologists, and teachers; all before lunch!

Life goes on. We grow.

Easter weekend Wrapup

2011-04-26T05:55:00.001-05:00

We really didn't do anything spectacular for Easter this year. We had planned on going to a local winery for their brunch and Easter egg hunt for kids. The weather report started to look really bad and we figured the Easter Egg hunt would not happen so rather than drive 45 minutes just for a nice brunch we decided to have brunch at a local fine dining restaurant.

(Good) Friday night we were having some storms in the area, really bad storms up in St. Louis. Annette went out to have drinks with a friend of ours. This friend was flying out Saturday morning on her son's wish trip, a Disney cruise. By the time Annette got home, a very large EF-4 Tornado had hit a good part of St. Louis including the St. Louis Airport. The airport was closed due to heavy damage and flights were getting canceled. We texted our friends to make sure they knew and they started calling the Make-a-Wish folks to see what was going to happen to their trip.

This video is from security camera's in the airport while the tornado was hitting.

Saturday morning we decided since it was STILL raining, to go see a movie. We took the boys to see Rio. I think this was the first movie, in a theater, that we had taken Kade to see. We had to sit down low since he was in his wheelchair. I think sitting down low worked out better for him since we were so close to the screen. It was a good kids movie, and will be really cool to watch on Blu-ray when it comes out. After we got home we dyed Easter eggs. Annette picked up a device that looks like a salad spinner but you use it to dye eggs. Kade was able to use it (hand over hand) to dye eggs. Jackson loved it too because the egg violently spun around picking up the dye.

Sunday morning the Jackson woke to find that the Easter bunny had left eggs and goodies for the boys. He was a bit disappointed that the bunny hid the eggs in the house since it was STILL raining. Both boys got things they can play with as well as jammies. We all got dressed up and went to brunch with Nannie and Pawpaw. After brunch we stopped by to see GG and Grandpa B. GG was holding Kade and commented on his belly looking like a "muffin top". I could not believe 1. GG would call Kade that, or 2. that GG knew what the hell muffin top means! It was really funny to hear her say that. After the visit we went home and took naps and just hung out the rest of the day.

Hope you all had a nice easter.

All you can do is Laugh

2011-04-20T18:49:00.001-05:00

Last night, after the tornadic storms had passed, Annette and I watched the season finale of Parenthood on NBC. I have written about this show a couple of times here, about how they address issues of parenting a special needs child. While watching the episode last night, I could not help but think they have spy's watching us. I was taken back in time to experiences that I had forgotten about, both good and bad experiences. While we were watching, a friend of ours (who has a special needs kid too) posted on Facebook that they were watching Parenthood as well and there were scenes that could have been taken out of their family story as well.

At the end of the episode Adam Braverman walked into his home and told his wife, Kristina, that he had been fired from his job. Adam and Krisitina were having a discussion about their son's lost retainer when Adam kinda flipped his lid. He was yelling that rather than pay for a new retainer for his son, HE WAS GOING TO FIND the lost one. Adam went out to search the trash. He came back in a few seconds later yelling and holding a positive pregnancy test. He assumed their daughter was pregnant. Watch what happened next.

When Adam and Kristina were hugging and laughing I was thrown back to when we were at Children's during the three weeks of hell when Kade first started having seizures. We were in our room on the 12th floor and there was a Neurologist in our room talking about prognosis and what tests were going to be ran and explaining things BLAH BLAH BLAH is all we were hearing. We had been there too long and were not getting anywhere with seizure control or answers. Then the room started SHAKING. I think the neurologist was ready to bolt out of our room but Annette and I started laughing because of the expression on his face. What he didn't know was the helicopter pad was directly above our room, and when it landed our room shook.

Sometimes when you are thrown down a direction that you did not plan on, the best thing to do is laugh. It doesn't do any good to get mad or yell, those actions won't really change anything. Plus you never know when writers for a tv show are watching.

What Changed?

2011-04-18T17:28:00.003-05:00

We have noticed with Kade's conditions that his symptoms change about every 3 months or so. When his symptoms change we typically see a change in what he is doing and interacting with as well. When we see changes we notice it first with what his seizures look like or how often he as them. He will change from a movement to a stare or vice versa, and sometimes the intensity changes too. Recently we have noticed a few changes.

While in Disney we noticed that he seemed to be having a few more seizures than we had been seeing. Before our trip it seemed like he would go for a while, a day or so, without having a seizure. While we were at Disney, one morning he had a few seizures before breakfast, and started having them each day again. After we got home from Disney the seizures were still there, but it seemed as though he was more alert and interacting with his surroundings more. I know it is horrible that he is having more seizures, but if he is interacting more.....take the good with the bad. About this same time we started two new things for him; he started going to school for a few hours a day a couple days a week, and he started participating in hippo-therapy. He started school and we started getting reports that he was trying to interact with the kids in the class. Around this same time we were noticing that he was being more "verbal" and making more noises. One day in class the kids were laughing and making noises and Kade joined in and starting making noises as well.

Over the weekend we decided to try and weigh Kade because we all were thinking he had gained weight. Turns out the boy has gained just over 3lbs in a month! This may or may not explain the increased seizures and increased activity. As he gains weight his meds that attempt to control his seizures (and keep him sedated) are naturally titrated down. Weight gain is good for Kade because he has always been on the low end of the charts, and it is naturally lowering the one drug we think is keeping him sedated, but it is also lowering the one drug that we think is actually helping. Double edged sword.

Like I said, this could be an explanation for what is going on, but it also could just be that the seizure activity has changed and affecting a different part of his brain.

Celebrate your DNA

2011-04-14T18:01:00.003-05:00

Tomorrow, April 15, 2011 is National DNA Day 2011. Back in 1953 the Double Helix was discovered and genetic research was born. Today research of the human genome is excelling and more is being discovered each day about our gene's. Each person has over 30,000 gene's that make up your DNA. Each person's DNA is a combination of their mother, and father. Some people have what are called genetic mutations that can cause issues, but some mutations are benign.

Annette and I are reluctant students of genetics. By no means are we experts and understand all the in's and out's of the human gene, but we do understand that things can happen. I have lost count how many genetic sequences Kade has had done, I think the number is eight - at least. It is odd to say that I have LOST COUNT of how many genetic sequences Kade has had done. Each sequence takes around 30 days to complete, and typically is not performed in a lab nearby, most of his sequences took place at Baylor. At first the 30 days crept by, wondering if this sequence would lead to an answer or diagnosis. Now, we know that finding and answer is like looking for a needle in a haystack, times 10.

Kade's Neuro-geneticist, Dr. Paciorkowski, was great at explaining the test results in a manner that Annette and I could understand. He would draw pictures and answer each one of our questions. When he left for Seattle he was accepting the chance to work on ground breaking genetic research and mapping techniques. He said that the technology he would get to use would allow him to map all 30,000 gene's in month, the same time it currently takes to map ONE gene. This would allow the lab to take kids like Kade and run their DNA, and compare the results to see if they shared a common marker.

The future for DNA research looks bright!

Wordless Wednesday

2011-04-13T20:00:00.001-05:00

No major post subject today, just photos from Today. Kade had HippoTherapy and his second day at school!

Kade's first day of school

2011-04-12T18:45:00.000-05:00

Monday was Kade's first day of school. He attended for a few short hours and by all reports really enjoyed himself. He was greeted by a number of the special education staff as well as the school nurse. It sounds like they all wanted to take part in his first day.

He was able to enjoy circle time, and art time. He has his very own aide how took right to him. His OT, school nurse, and aide helped him during art to make butterfly wings.

He must have really enjoyed it because he came home for lunch ate a huge lunch and took a 3 hour nap. He goes back on Wednesday for day 2.

Signs of Spring

2011-04-12T17:44:00.000-05:00

Sorry but this post will be a departure from the standard musings, please hang tight.

Each year, after the cold of winter releases its grasp, Spring comes around and gives rebirth. Flowers start to bloom, trees start to bud, and unfortunately grass starts to grow. One thing I look forward to each spring is the Redbud trees blooming along the highway. It seems that the Redbuds are one of the first trees to bloom each spring so their splash of purple is always a welcome site. Of course about this same time my grass starts to grow, in some spots better than others, and needs cutting. I keep telling Annette I am not going to cut it until the entire yard needs to be cut, otherwise I would just be wasting my time. Somehow I think she is going to make me cut it before the entire yard needs it.

We also start seeing more woodland creatures in our yard this time of year too. Buster will stand guard at our back door and when he sees a furry little rabbit in the backyard he will shoot like a rocket to try and catch the rabbit. In the 8 years Buster has been with us, he has yet to catch a rabbit, and I don't think he would know what to do with it if he did catch it. Somehow each year when I start cutting grass I end up finding a few burrows the rabbits have had babies in. Most of the time when I find them while cutting grass it isn't a happy ending, the mower finds them first.

But we cannot forget one other sign of spring, mating. A Robin has been making a nest above the light on our front porch. The rabbits that visit our backyard mate as well, frequently. Most animals mate, even ones we don't think about, even the box turtle. The courtyard at my place of employment has about 10 box turtles that have been placed there by good intentioned people, but every spring the turtles get busy. This time of year, when you walk by the windows you never know what you are going to see. We joke that they are exhibitionists because most of the time they are right in front of the windows. Here's to you box turtle, a sign that spring has, shall we say, sprung.

The best laid plans

2011-04-11T18:45:00.001-05:00

We had big plans for the weekend. Friday night we were supposed to goto Jackson's first Tball practice and hang out. Saturday we had been invited to the Missouri Governor's mansion for the Governor's Easter Egg Hunt, a almost 3hr one way drive from our house. Sunday we were going to help pawpaw work on the deck he is building around their pool. Our weekends are rarely laid back and calm, it seems that we are constantly going and doing something.

Earlier in the week Kade had a blister show up on his hand, it popped, and was starting to heal. Friday Annette started to get concerned that it was looking infected, and was talking about taking him to Urgent Care to get looked at. The site was not warm but was a bit red, so we marked it with a marker and watch to see if the red area grew. I also contacted my friend in the Governor's office and explained to him that we may not make it because we may have to run to Urgent Care Saturday Morning. Annette got dinner from Burger King on the way home Friday night and had some bad news from her visit to Burger King. As she was pulling off the highway a dashboard light came on and starting dinging so she looked down and WHAM jumped a curb. I think she was trying to do her best to channel Evil Knievel. I inspected the car and didn't really see anything wrong. We started to Tball practice and we were at a four way stop on Main Street and this idiot did not wait his turn and DAMN NEAR t-boned us. I mashed the brakes, laid on the horn, and may or may not have extended a finger. We finally made it to practice and Annette said the light that came on was the oil pressure light. I checked the dip stick and sure enough, no oil on the dip stick. DAMN IT! The thing is, I had this issue worked and "fixed" by the local dealer less than 6 months ago. I quickly made a call to the same dealer and told them the issue, I asked if I could bring the van in on Saturday to have it looked at and the response was "we only do oil changes on Saturdays, and we are busy Monday, so you could try for Tuesday". This just hammered home the feeling I had been getting about this dealership recently, idiots who don't care about customer service. So, on the way home I got 2 quarts of oil and filled it up until I could get into a dealer to look at the issue again.

Saturday morning came, and Kade's blister looked a bit better so we decided to drive to Jeff City for the Easter Egg Hunt. About 10 miles from home we hear DING DING DING and saw more lights on the dash. This time it was the ESP and BAS lights, and they were staying on. Annette got the book out and said that if the lights stay on we should find a dealership ASAP. I drove the family home and starting hunting out OTHER local dealerships. I found one about 15 miles away that was MORE than willing to get us in and look at the problem. I drove up there, explained my issue with the lights, and also told them about the oil issue. They jumped right to work, offered to take care of a few Recall issues that our local dealer could never seem to take care of, and got me a rental car. They said to come back and pick up the van on Monday. So we did some grocery shopping and went to another Tball practice rather than hunting for eggs.

Sunday morning we went to breakfast at Cracker Barrel, saw some baby chicks at Buechits, and more grocery shopping. After nap we had planned on going down and helping Pawpaw with his deck. We got down there and found out the two bee hives they have, had swarmed. So, now they have 4 hives at their house instead of two.

Besides that we had an uneventful weekend. How was yours?

Disney Photopass

2011-04-09T17:40:00.000-05:00

We got our Disney Photopass in the mail this week. This was one of the extra's that GKTW gave us. We got a copy of every photo the Disney photographers took while we were in the parks. Turns out they took over 250 photos during our stay. Here is a slide show, or click it and it will take you to the webalbum.

Foto Friday

2011-04-08T09:08:00.000-05:00

Since we got back from Disney we have been having some fun at my expense. I arranged for a head shaving event at my work and somehow talked 11 guys into shaving their head. In return my employer donated $400 to Make-a-Wish. Here is a photo of some of 6 of the guys who willingly got buzzed, including myself, with Kade.

Shortly thereafter Make-a-Wish was having their Walk for Wishes fundraiser. I took the head shaving one step further. I took a razor to my head and then headed to a tattoo parlor.

This week at work, one of the housekeepers saw me in the hall and stopped me. He said "you look like somebody famous". I have been told before I look like famous and Iron Man actor ~~Robert Downey Jr~~ Jon Favreau.

But no, Gene thought I struck a resembalance to someone else, he then called me Kojak. He thinks I look like Telly Savalas.

what do you think?

School, here we come

2011-04-07T09:52:00.001-05:00

It is odd to think that Kade will technically be starting school before Jackson. We had Kade's IEP before we left on the Wish trip and they will be allowing him to goto school for a few hours a week starting this month. He will be included in the social aspects of class like circle time, art and PE. He will continue to get therapy services in home until June or July. Then staring in August he will be starting school and will be riding a school bus to and from school! During discussions with the school district, we found out they will be building a classroom around Kade to make sure it is an environment he can tolerate and learn in. We are really excited about sending him to school. Kade's loves a social environment, and loves being around other kids, so we know he will love school. If his tract record holds true, he will really grow from the experience.

Jackson had his Kindergarten testing a few weeks ago and went back for a visit with the kids in the current kindergarten classes to get used to the idea of going to school. He is THRILLED that he will be going to Big School and apparently did really well socializing during his visit. It will help that he has a few friends from his current school with will be attending his Big School in the fall with him.

I know that the first day of school is typically harder on the parents than the child, but we have two kids that will have first days of school this year.

What else can be said

2011-04-06T19:12:00.000-05:00

So I have done a review of each of our days on Kade's wish trip. There were so many things that we did, experienced, or that happened that I did not cover. I could go on and on about this trip and what it meant for us as a family, and more importantly for what Kade was able to experience and enjoy. Make-a-Wish does amazing things for kids that are or have battled a life threatening illness. Perhaps this trip meant more for us, because Kade does not have the opportunity to do so many "simple" things that other kids get to experience. For example take visiting with a Character in the parks. On a typical trip a family would have to wait their turn to visit with a character, probably in the heat. Heat is a scary thing for Kade, he is on Topomax and it does not allow him to sweat so he can over heat and have complications very quickly from too much heat. The treatment that Wish kids get allowed us to skip the lines and visit with the characters as long as we wanted. Disney goes head over heals for Wish kids. Thank you Disney for doing what you do for the thousands of Wish kids that you welcome to your parks.

The facility we stayed at was possibly the best part of our trip. The resort Give Kids the World was started by Henri Landwirth, a hotel owner in the Orlando area. They only serve Wish families and literally give them the world during their stay. Everything we could have possibly thought of was available for us during our stay. They arranged for a nebulizer and a suction machine so we could ward off any respiratory issues that might come up. They showered the boys with stuffed animals and toys each night of our stay. They allowed us to use a Camcorder for the entire week for FREE (provided by Sony), and offered for us to use a digital camera if we didn't have one. They provided breakfast, lunch and dinner (provided by Perkins and Boston Market) each day free of charge, along with 24/7 ice cream (provided by Friendly's). They have a castle that each wish child gets to make a star and the star fairy takes it and places it on the ceiling of the castle for it to stay forever. They arrange for select Disney and Universal characters to come visit some mornings so families can visit in a much less stressful environment than the park. Each night they had some sort of party that we could take part in. Every Thursday night is Christmas, Santa shows up and visits with each child and gives them a gift (donated from Hasbro). Sunday night Annette and Jackson got to play candyland in Matthew's Boundless Playground, a completely handicap accessible playground.

While Make-a-Wish and Give Kids the World (GKTW) can do so much they do need help. This past weekend we participated in the St. Louis Walk for Wishes to raise money for Make-a-Wish of Missouri. All of the donations counted they raised over $130,000 and all of it stays in Missouri to grant wishes of kids. GKTW has a long list of Corporate donors but can always use assistance from individuals. One thing GKTW did not have was a wireless network that was accessible in the Villa's or other public area's, they did have Wifi available in their main admin building and a few other buildings, but did not cover the campus. My next goal is to assist GKTW with getting wifi access across their entire 70 acre campus. They said that almost every family that comes to stay there wants to stay connected and post pictures and it is a hassle for them to do so. So, any of you large corporations out there (talking to you CISCO and ARUBA NETWORKS) here is an origination that would LOVE some assistance and would gladly tell the world how awesome you are! If you know of another corporation or individual that would like to help in this goal please contact me. I can make it happen, I just need assistance getting the hardware!

Click these links to learn more about Give Kids the World or Make-a-Wish

A boy and his horse

2011-04-05T15:14:00.001-05:00

The day after we got back from Kade's wish trip we added another appointment to our otherwise ~~vacant~~ hectic schedule. With the assitance of a friend of ours Kade was accepted to a facility that uses horses to assist kids with special needs. Typically activities like this are classified as Hippotherapy, but this facility does not have a PT or OT on staff. We were excited to start because the act of riding a horse puts your body through the same motions as if you are walking. Since, Kade does not walk we thought it would be good for his body to experience the activity.

Once Kade started his session on the horse Annette and I had a introduction session with one of the ladies in charge. She explained the purpose of their group and what they try to address during their sessions. She said that if the child has an IEP (Individual Education Plan) they would address items in the IEP. She said that a large number of the kids that go there end up needing to get their IEP redone because they are able to address so many items with the horses, not to say that Kade would blaze through his IEP items but still. She told us a few stories of a few other kids that they have helped via the horses and the stories are amazing, one of which was a story about one of my cousins that goes to this facility. She explained that the connection between horses and special needs kids is not completely understood, but something magical happens between the two. We were excited for Kade to get started.

Since this was his first session Kade was lucky enough to have his PT and OT volunteer to come and make sure the workers were addressing, supporting, and not babying him, thats right NOT babying him. They wanted to make sure that his head would be supported but not given too much support as to keep him from feeling the movement of the horse. So they started, Kade has his soft collar on and his benik vest. He started out riding with his PT and was sitting on the horse, but they became concerned that his legs were spread too wide. They readjusted him and put his side saddle for several laps around the ring. They tried a few other positions and we could see a difference with him right away, his eyes were OPEN. Each time around the ring we could see that he had his eyes open and was taking in the sights and sounds. While he was riding there were 2 or 3 other kids that were riding and there were 2 little boys getting lessons on how to take care of horses. Each time Kade passed the 2 boys he would shift his gaze and LOOK right at the boys and listen to them. One of the positions they put Kade in was on his back with his head resting on the rear hips of the horse. His PT and OT were very please with how Kade was able to manage his head and not let it flop from side to side as the horse walked around the ring. He was showing more head control than he had in weeks, there was an outside force making his head move back and forth and he was able to slow it down.

When his session was over he was so relaxed you could have poured him into his carseat. The folks there told us that most kids are VERY relaxed after their sessions and their muscles are very loose for the rest of the evening. Kade seemed to really enjoy his time with the horse. When we were wrapping up his session Kade's buddy Jackson showed up and was getting ready to start his session.

Day 6 - Universal Studios

2011-04-05T08:39:00.001-05:00

Monday morning we had breakfast in the Gingerbread house and loaded up and tried to find Universal Studios. I made the mistake of listening to the GPS unit. I entered Universal Orlando into the GPS and for some reason it took us to the Orlando Convention Center. After stopping for directions, yes I stopped for directions, we were able to find Universal Studios. The first park we entered was Universal Studio and I made a stop to Guest Relations. At the urging of a "Disboarder" I explained to the Guest Services Rep that I had a Wish Kid and he would really like to meet Barney. The Rep said he would check things out and see what he could arrange. He came back to the counter about 10 minutes later and said that he begged and pleaded and was able to arrange a meeting. He gave me instructions that sounded like some James Bond instruction, "goto the Barney Theater, don't get in line, wait in the main entrance, they know you are coming and they will know who you are. When the show is over, just stay where you are seated, don't tell anyone what you are doing, once the agents see that everyone else is out of the theater they will close the doors, make sure no-one is around, and bring out You Know Who". We just got James Bond instructions!

We walked our way down to the Woody Woodpecker Kids Zone and found the Barney Theater. We were a bit early but walked up to the main entrance, it was roped off in such a manner to make you walk into a queue, but we followed our Bond instructions and stayed right at the main entrance. Before too long an employee walked up to us holding a sticky note and said "This must be Kade and his family, we were expecting you! Just stay here and we will get you in ASAP". So, we hung out in the roped off area and before too long they allowed us in with specific instructions "Go in the middle line all the way to the door, not the left or right line, stay in the middle". So we did just that, we stayed in the middle line. We made it to the main entrance doors of Barney's theater and were greeted by another employee that again "knew" us. When the doors opened we were ushered to the front row, that's right FRONT ROW. The show started like a rock concert, Barney appeared from the center out of the floor. The show was nice and short, by the end of the show Kade knew what was going on, he was wide awake and moving his arms around, he LOVES Barney. When the show was over they opened the door and ushered everyone out of the theater, except us. Once the doors were closed, a very important looking guy came out and said Barney would be out in any second. Sure enough Barney came out and spent as much time as we wanted with him. He was very attentive to Kade and made sure that he spent enough time with him, Kade even reached out his hand to touch Barney's hand! We had a GREAT visit with the purple beast.

After meeting with Barney we went over to see Shrek 4D. On the way we came across the Shrek character greeting area. I saw the employee with Shrek and showed him Kade's credentials and before we knew it we were at the front of the line. We had a nice visit with Shrek, Fiona, and Donkey. I must say that Donkey was absolutely hilarious, he interacted with the crowd and even talked. He cracked jokes, asked questions and heckled passers by. We entered Shrek 4D via the secret entrance and were granted access to the next session. The show was fun, the seats shook, we got water sprayed on us, and enjoyed the 3D effects in the show. After Shrek it was time for lunch. I ran over to Wizarding World of Harry Potter to see if I could get in and walk around while everyone else ate lunch. That part of the park was full and I was given a ticket and told to return at 2:30pm. I went over and met up with the fam, and had some lunch. Annette wanted to take the boys to the Seussville area, so I went to WWHP while they went to Seussville. It was so freaking crowed in WWHP I did not stay long. It was a 45 minute wait just to get into Honeydukes the candy store. I walked around and snapped a bunch of pictures. I met back up with Annette and they boys in Seussville. They had already ridden several rides and the only ride left was the carousel. After the carousel we decided it was getting a bit warm and we headed back to GKTW.

The rest of pics including WWHP

Up Next - Recap and Thoughts about the trip.

Day 5 - Chef Mickey, Cocoa Beach, and DTD

2011-04-04T09:06:00.001-05:00

Sunday had us waking up WAY before the sun came up. We got up early enough to give Kade his meds, do a breathing treatment, and made it to the Contemporary Resort Before 7am. We made it to the entrance of Chef Mickey just in time to watch the sunrise over the lake. We had reservations for the 8 of us at 7:15am, and made it to the reservation desk with a few minutes to spare. We had a group picture taken and before we knew it we were seated at a HUGE round table and characters started to come visit. We got to see Mickey, Minnie, Donald, Goofey, and Pluto; all before we started eating! Once the characters made their way around we saw a chance to make it to the buffet line and start eating. The buffet was AWESOME and of course we each had some Mickey Waffles. We enjoyed a nice slow breakfast and got ready to head to Cocoa Beach.

Cocoa Beach was only about a 1 hour drive from the Disney area. Along the way we got to see Port Canaveral and when we passed, we got to see the Disney Dream in dock alongside a Royal Caribbean Cruise ship. Annette and I both had the same reaction "I want to go on another cruise". After stopping for gas and slurpies at the 7-11 we found a public access for the beach. We were on the beach just before 10am and the sun had not gotten too hot yet. There were not too many people out yet, but there were several surfers, sailboats, and runners out. Jackson and Grandpa were really brave and ended up going out into the ocean at least to waist depth and played in the waves. The rest of us were happy to watch them play, walk up and down the beach, and watch Kade with his very first beach experience. Taking Kade to the beach was one of Annette's goals for this trip, and it was worth it. He seemed to enjoy rubbing his hands and feet in the sand taking notice of the new texture. Annette also held him so that he could put his feet in the water, the COLD water. After Jackson got out of the ocean we realized we made it to the beach without any dry cloths for him. We took a number of photos while on the beach and then decided to find the famous Ron Jon's Surf Shop to find some short for Jackson. While we did some shopping Kade was able to have a bit of lunch in a nice gazebo next to Ron Jon's. The wind was blowing just enough to keep him cool. Once we did our shopping it was time to load up and go to Downtown Disney for some souviner shopping.

Again, the drive was only about an hour long, just long enough for both the boys to take a short nap and get re-energized. We did some speed shopping in the stores and went back and put our names in for dinner at T-Rex. While waiting for out table to be called, Kade started to get really fussy and was feeling REALLY warm. Annette tried to calm him down and we gave him some tylenol, but he could not cool himself down and was REALLY worked up. Our table was called and Kade was not having any part of it, so Annette and I took Kade back to GKTW and Jackson stayed with the grandparents at T-Rex. They said the food was ok, but the service was horribly slow. Once we got back to the villa, Kade was smiling and talking up a storm. He seemed to manage to get his temp to come down and was happy as could be. Annette and I had dinner from Katie's Kitchen and we waited for Jackson to get home. Once he got home, Annette took him to play Candyland at Matthew's Boundless Playground while I stayed inside with Kade, just incase he was fighting something off.

The rest of the photos from Day 5:

Up next Day 6 - Universal and a special Meetup

Day 4 Epcot (and the exploding water heater)

2011-03-30T11:44:00.001-05:00

We started Saturday day out a bit slower than the last few days. We were really tired from all the walking we had done, and we wanted to keep an eye on Kade's breathing. He woke up feeling ok, and we gave him a few breathing treatments, sucked some gunk out of his nose and off we went to Epcot. I was really excited for our Epcot visit because the Flower and Garden Festival was going on, and Epcot is my favorite park. We got to the park and immediately started seeing the neat topiaries of the Disney Characters and all of the beautiful flowers that were planted for the festival. The walked around a bit and found Tink, and Jackson really wanted to meet her. So we found the cast member and we got to meet with Tink for a few minutes and got a few pictures with her. She didn't seem to be the most social pixie, she was done with us kinda fast.

After we visited with Tink we thought it would be a good time to go ride Soarin'. Pawpaw, Grandpa, Jackson and I got in the fastpass line and got to ride Soarin'. It was a neat ride, and Jackson enjoyed it until the very end when you are flying over Disneyland and a exploding firework shook the ride, that did not sit well with him. The effects on the ride, like the smell or oranges when you are flying over the orange grove, are pretty neat. After we got off Soarin' we decided it was a perfect time to have lunch, and since we were in The Land we decided to grab a bite at the cafe. Pawpaw and I finished our lunch first and I asked him if he wanted to run over and ride Mission Space (green level) since we were the only ones that wanted to ride it. He said yes, we got clearance from our wifes, so we bolted out for Mission Space. We got to the entrance of the ride and the wait for the green side was only 10 minutes. We decided to ride the green side first and if it wasn't too bad that we would try the orange side later in the day. The area that the line runs through is pretty neat because they have stuff on the wall about space and displays about the space station. Pawpaw really wants to goto space someday so he was really interested in it. We finally made it to our ride capsule and strapped in for the ride. Overall it was a neat ride, and we thought the green side was really tame, so we decided to do orange later in the day. After we exited Mission Space we met up with Jackson and Nannie while Annette was giving Kade a breathing treatment in first aide. We decided it was the perfect time to ride Test Track, this would be Jackson and Pawpaw's first time riding this ride. Jackson was not thrilled with the ride and cried during most of it. Pawpaw worked in an auto assembly plant for 30 years so he liked seeing the line distractions.

We met up with the rest of the crew and started making our way around the countries. It was starting to get really warm so we watched how Kade was handling the heat and did our best to keep him out of direct sun, but that proved difficult to do. We made it to Germany and of course I had to have Bier and a Pretzel while everyone else went in the new caramel shop. We rested for a bit in Germany and started walking again. It was neat seeing each country and all of the cute topiaries that were made as well. We finished up with the countries and Pawpaw and I saw our chance to ride Mission Space again. We went and got in line for the orange side and waited for our turn. We were about half way down the line when a cast member came up to us and asked if there was just the two of us and ushered us onto the next ride (I did not have the GKTW button). The orange side of Mission Space is much more intense than the green side. During the takeoff sequence you could really feel the G forces on your body. I could feel my cheeks being smashed back on my face and it was difficult for me to lift my arms up. After the ride Pawpaw and I both agreed that orange was MUCH better than the green side. After doing some research I found out that the orange side exudes 2.5G forces on you during the ride. While we were riding Mission Space everyone else was seeing Turtle Talk with Crush and riding the Nemo ride.

We all met up and decided that it was time to leave, but Grandma and Grandpa stayed to see more parts of the park. We got back to GKTW and I put the boys down for a quick nap and heard DRIP DRIP when I was in their room. It was coming from the closet, DRIP DRIP. I opened up the closet and found the water heater, and the dripping was coming from it. There was water in the basin below the water heater, it was leaking. I called the front desk, and they sent a facilities person out to check it out. He went and inspected the water heater and came out to the living room and said "not only is your water heater leaking, the back side of it, from top to bottom exploded and is wide open". He quickly called the front desk and told them we would need to be moved. We started packing and before we knew it there were volunteers there to assist us packing things up and move us to one of the new villas next to Matthew's Boundless Playground. We spent the rest of the evening enjoying GKTW. We went and found Kade's star, checked out the chapel, and played on the playground a bit.

Slideshow of Day 4

Up next Day 5 - Cocoa Beach, DTD, and a fever

Karma, its a bitch

2011-03-29T20:47:00.002-05:00

There will be some strong language used in this post, if it offends you stop reading now.

Over the last two days there has been a shit storm of bad press for Food Network "star" The Barefoot Contessa (Ina Garten). Apparently a little boy that was diagnosed with a form of lukiema wanted to meet with her and cook a meal with her. While recovering from treatments for lukemia he would watch the "star" on the FoodNetwork. Make-a-Wish reached out to Ina Garten asking her if she would be willing to meet with the boy, but she declined claiming she was too busy. Make-a-Wish went back to the boy and told him that she declined due to her schedule and he said he wanted to wait for her to become available. A few months passed and Make-a-Wish contacted Ina again and again she declined because she was on a book tour and was too busy. Make-a-Wish went back to the boy and asked for a secondary wish, he agreed to swim with dolphins rather than meeting with Ina.

Flash forward to this week, ABC ran the story about Ina and the boy. You can imagine the amount of bad press that started to fly around the internet about the "snubbing" of the 6yr old boy. I am sure you can guess what happened next, Ina now says her schedule is clear and she is more than willing to have the boy out to the studios to cook a meal. The mother of the boy said that now he has his heart on swimming with dolphins and has been taking swimming lessons to do so. A little too late Ina, I hope the boy tells her to screw off.

I wasn't going to write anything about this whole deal until this afternoon. I was listening to Frank O. Pinion and he was talking about how John Cena is granting the wishes of 30 WWE fans by hosting them at the next wrestling event and throwing a pizza party and autograph signing party for them. Turns out that John Cena has granted over 200 wishes to wish kids, and is one of only three other celebrities that have granted over 200 wishes. The other celebrities that have granted over 200 wishes are John Cena, Dale Earnhardt Jr, Jeff Gordon, and Hulk Hogan, but I am sure that these guys are not NEARLY as busy as the Barefoot Contessa.

EDIT-

What is most upsetting for the family is that the media is incorrectly dubbing the child as "the sick kid" "the dieing boy" or that this is "his dieing wish". As with most Wish Kids, they are not dieing, they are fighting and far from finished fighting. He is a boy, who has leukemia and is fighting it. He has a bigger and deeper understanding of life than the Barefoot Contessa could ever have.

sources : ABC, Look to the Stars

Disney Day 3 - Magic Kingdom Part 2

2011-03-29T13:01:00.001-05:00

After being all done up at the Pirate League we walked toward Frontier Land and saw that Woody was out and signing autographs. We caught the eye of a cast member and he got us in to see Woody and get his autograph. There was one park guest that had a bit of a hissy fit about us getting to jump the line to see Woody, he started to make a scene, but a Cast Member jumped in and made sure he "understood" what was going on.

After visiting with Woody we found out that the parade was getting ready to start and we found the perfect spot to watch from, we were right inside a roped off area and had front row seats for the boys. The sun was really starting to beat down so we had to keep maneuvering the boys to make sure they stayed cool and did not have any melt downs. Soon enough the parade made it around the corner and we got to see all the characters and floats. Turned out we were right at the end of the parade and watched the characters et al go into one of the secret passage ways after the parade. We got to see a number of the princesses and other characters. Several of them came over and gave the boys high fives and waved to them.

After the parade we knew it was time for a break. We headed back to Main Street to see if we could find the First Aid station, but not for First Aid, but because there is a Secret Lounge there only for Wish Families to enjoy. We found First Aid and were allowed entrance to the Wish Lounge. We were given bottled water, a tv, couches, and huge pillows to rest on, the best of all the room had air conditioning. We were the only family in there for most of our visit, but another family did join us. There was more than enough room for all 13 of us to comfortably enjoy the area. After we all cooled down and washed the Pirate makeup off, we were off once again.

Our next stop was Buzz Lightyear's Space Ranger Spin. We all wanted to ride this ride, and it is wheelchair accessible, with a hitch. To get in the cars for this ride you have to enter from a moving conveyor belt. It was comical to watch the Cast Member and Annette move as fast as they could to get Kade's wheelchair in the car and Annette get in the car before reaching the end of the conveyor belt. Jackson and I rode together and we had a BLAST shooting lasers at targets on the ride. We had a "friendly" competition to see who could end the ride with the most points. Pawpaw ended up winning and was an ever so "gracious" winner. When we exited the ride we saw Buzz Lightyear himself and were able to pose for pictures with him. After posing for pictures we knew it was time for dinner. We found ourselves at Cosmic Ray's for dinner and had a nice cool down as well. While at dinner I heard the sound I HATE to hear most, a nasty croupy cough coming from Kade. The last time he started with this cough we ended up in the ER at Children's Hospital, so immediately my anxiety level went up. I was really hoping hard that he would be able to clear his airway and deal with this cough so we didn't have to goto to an ER somewhere.

After dinner we HAD to ride the It's a Small World ride. Nannie just loves this ride and loves to torture everyone else with it as well. Turned out that they had recently "re-imagined" the ride and it was cuter than I remember. They boys seem to enjoy the ride as did the grandparents. After IASW Annette wanted the boys to ride the Dumbo ride. After a quick bathroom break Annette, the boys and I rode the Dumbo ride. Jackson had fun going up and down. Also, from this vantage point you could see the construction going on in the Fantasy Land expansion and the Mickey's Toon Town demolition. We were getting off the ride and there was the SOUND again, that damn croupy cough. It wasn't getting better and he was starting to rattle, my anxiety level was getting higher.

After the Dumbo ride, Jackson got to do the ONE thing that he absolutely wanted to do while in the Magic Kingdom, he got to walk inside Cinderella's Castle. He was so excited to be that close and to be able to walk in the base of the Castle, it was really neat to watch. We made a quick stop to see Prince Navin and Princess Tiana. I was absolutely impressed with Prince Navin. This was the first speaking Character that we got to visit with and Prince Navin went out of his way to speak to Kade, and try to have a conversation with him, you could tell that Prince Navin "got it". When we were walking up to the Prince and Princess, Jackson told Annette he did not want a kiss from her because she had lipstick on, so he shied away when she asked if she could give the boys a kiss. So, Kade ended up with a cute lipstick kiss on his forehead from the Princess.

We made a quick pit stop to change into our Dessert Shirts and made our way back over Tomorrow Land for the Fireworks Dessert Party. This was an Advanced Dinning Reservation that I signed up for, we had access to an AWESOME selection of dessert (buffet style) and drinks. We were in a great area for fireworks viewing as well. We were able to see the Electric Light parade from our vantage point, and Jackson loved it. We all really enjoyed the desserts, and Kade got to take a nap. All the while Kade's breathing was still really junky and he still had that nasty croupy sounding cough. Right before the fireworks started we decided to bolt for the exit for a few reasons. The park was packed and maneuvering Kade's wheelchair in the crowd without losing Jackson had me really concerned, plus Kade was not feeling well. We made it out to the ferry just in time to watch the fireworks from the Seven Seas Lake and the Transportation Center. The fireworks were beautiful, and we beat the crowds.

After arriving in the park around 9am we made it back to our villa around 11pm and gave Kade several breathing treatments, used the suction machine to get some "gunk" out of Kade's airway and nose, and put the boys in bed, hoping there wouldn't be any 3am trips to the ER.

Day 3 Slideshow of all pics

Up Next - Day 4 Epcot and an Exploding Water Heater.

Disney Day 3 - Magic Kingdom Part 1

2011-03-28T14:48:00.001-05:00

Day three started really early, we were on the move on the way to the park by 8:15am. Before we left, we made a call to the breakfast cart and asked them to stop by so we could grab some breakfast. Jackson thought it was SO COOL that a cart showed up at our driveway to give us cereal and fruit. While Annette and Jackson were picking out their breakfast I loaded Kade up in the Van on the lift and strapped him in. Once breakfast was in hand we were off to the Magic Kingdom. The drive was uneventful and we arrived at the Transportation Center ready to ride the Monorail into the park. We met up with the grandparents and started walking up the ramp to the Monorail. We got about halfway up and a WAVE of people started walking down the ramp, turns out the Monorail broke down and they were telling people to get on the ferry to get to the park. So I blocked the ramp so Annette could turn Kade's wheelchair around and we walked over to the ferry. We were some of the last allowed on the first boat and we enjoyed our nice ride into the main entrance of the Magic Kingdom. Once we made it through the turnstiles we had to stop for the obligatory group shot in front of the "Let the Memories Begin" sign.

We had not walked too far and saw our first characters for the day. Daisey Duck and Pluto were visiting with guests and we stopped to say hello and get autographs. One of the cast members saw us and was our personal escort between the two characters and even ushered us through roped off areas so we didn't have to walk around the lines. She even offered for us to get a sneak visit with one of the Princesses but the Princess was not ready yet. We decided to walk on and see what we could see. We hit Main Street USA and saw one of the most magical sights to see, Cinderella's Castle, of course we had to stop for a group shot. We kept walking to Adventure Land because we had reservations at Pirate League for our entire group to be transformed into Pirates. Along the way we ran into Frontier Donald, and again the Cast Member saw us, and gave us the royal treatment. The next stop was the Swiss Family Robinson Tree House. Jackson really liked the setup of the tree house, but he had never seen the movie so it didn't have a whole lot of meaning. (we have rented the movie since and he LOVES the movie). After the tree house we took a break so Kade could get out of his chair and have a bit of milk. Once back in his chair we went over to the Jungle Cruise for a quick ride before lunch. They got us on the next handicap accessible boat. The boat pulled up and the next thing we knew there was a hydrolic lift raising up to accept Kades chair. They wheeled him on before anyone else, got him situated and then we were allowed to board the boat.

We had a nice cruise, and heard the same silly jokes I think we heard back in 2002. Kade actually fell asleep during the cruise, but woke up nice and refreshed. After the cruise we decided to have lunch near by so we had it in the Tortuga Tavern. Lunch was GREAT, the taco salad and burittos are huge and very good. We needed a dessert so Grandpa and I ran down and got some Dole Whips for the group to try. We had heard a lot about them and wanted to try them. They didn't disappoint, if you like Pineapple, you would really enjoy a Dole Whip ice cream.

Next we went over to the Pirate League entrance and let them know we had a reservation for 8 people. We had to wait a few minutes but eventually everyone in our group was brought in and assigned a new "Pirate Name". After getting our pirate names we waited around to be called by a makeup artist to complete our transformation. The first person called was Pawpaw. The lady started doing his makeup and she started to put eye liner on him. If you know pawpaw you know that he has a thing about his eyes, well his eyes started watering like crazy when she came at him with the eye liner. It almost looked like he was crying. One by one we were each called to a different makeup chair to start the transformation. Jackson was next but he did not like the whole situation. The makeup artist applying Jackson's makeup was really good and took everything in stride. Kade's make artist did an awesome job on him. Kade likes to keep his eyes closed a lot of the time so we picked the pirate look that Jack Sparrow had with the 6 eyes painted on his face, two of which were on his eyelids. When all was said and done we each got a sword, and a pirate medalion. We were a shifty looking group. It was fun to walk around with our makeup on, when people would see Kade they were do a double take, some even asked to take his photo. Overall Pirate League was well worth the time!

End Part 1, up next Magic Kingdom Part 2

Day 2 - Animal Kingdom and Christmas

2011-03-25T13:30:00.003-05:00

Thursday Morning the alarm on my phone went off at 6am. Annette and I got up and while she was feeding Kade, I packed up things we would need for our first day in the parks. Jackson woke up and we dressed the boys in the cute Animal Kingdom outfits that they got from the Big Give. We were ready for breakfast in the Gingerbread house by the time they opened at 8am. Annette, Jackson and I had a great breakfast and Kade enjoyed the environment of a lot of kids and new noises. When we had finished breakfast we headed over to the theater to see what Disney Characters came for a visit. We made it in front of the theater and ran into Belle, Goofy and Pluto. Jackson was excited to see Belle because he wanted to tell her that she is one of Nannies favorite characters. We got pictures taken with all three of them and Pluto even noticed that Jackson had pluto on his shirt, Pluto jumped around and gave Jackson a HUGE hug. After seeing the three amigo's we went into the theater to see Mickey and Minnie.

About the time that we got our turn, Nannie, Pawpaw, Grandma and Grandpa arrived in the theater as well (they were staying in a house less than 1 mile from GKTW). We ALL got some one on one time with Mickey and Minnie and had several pictures taken with them. Minnie really enjoyed Annette's shirt and her bag.

After meeting with the characters and having pictures taken, we piled into our van and made our way to Animal Kingdom. Driving to the park, we got our first glimpse of the WELCOME TO DISNEY WORLD sign, and Jackson went crazy with excitement when we pointed it out. We got to the booth to pay for parking and the attendant saw our GKTW button and waved us through. I asked about handicap parking and he said "just follow the blue paint". Sure enough the far right lane and a blue line in it and that lead us straight to a nice handicap parking lot well within walking distance of the main gates. The lines for the gates were not too long and we made our way to the stroller rental for Jackson. The grandparents were a bit delayed because they had an issue with their tickets and had to have that fixed before they could get into the park so we headed back to the Safari ride. At the entrance to the safari ride Annette and I nervously went up to a Cast member and asked about the GKTW button and where we should go. Once they saw the button, they immediately directed us to the fast pass line and said just walk up the middle of the line and look for the guy standing by the handicap sign, he will take you where you need to go. So, we did, and we were next in line for the Handicap truck, we were really happy since Kade could stay in his wheelchair for this ride. We got on the truck and away we went. The driver we had was really funny and really catered to Jackson. We were a bit worried about how bumpy the ride would be since Kade has no neck muscle control to keep his head from flopping around, but it wasn't that bad. Actually, Kade LOVED the ride and was really vocal and looking around at things. We saw a lot of animals, and even got to see a baby elephant. We got to the Lion area and saw the male lion walking around and the drive made a comment about how they rarely get to see that, the we found out why he was walking around, right as we drove by he pee'd all over the place and Jackson yelled out "LOOK HE IS TAKING A PEE". The driver took it in stride and said something like "yep robots don't pee" make a joke about how people always think that the animals are robots.

After the safari ride we found that the grandparents were making their way over to the Nemo show, so we started walking that way too. Before we got too far, though we ran into Terk and the cast member let us jump line and get her autograph. We walked about 50 feet and saw Flick from Bugs Life, again the cast member saw us and BOOM next in line. We finally got over to the Nemo show and got right in. The show is really cute and had a lot of colors. Kade was tired and ended up taking a 20 minute nap during the show. After the show we went and had lunch at the BBQ place just outside of Dino land. While we were in line for food, I saw a sign for meeting Pooh and Tigger. After we finished lunch we went to meet Tigger and Pooh, there was no line, so we got to spend as much time with them as we wanted. Tigger did great playing with the boys and posing for pics. When we were done getting photos taken with Tigger one of the Cast members came up to me and asked if we would like to have Eore's autograph. We said we would like it, but Eore was in his "stable" taking a break. The cast member offered to take our autograph books go get his signature and meet us at the top of the hill. After about a 10 minute wait the Cast member showed up with two signed pages that were PERSONALIZED to the boys with their names. PIXIE DUST!!! We then quickly went over to see It's tough to be a Bug. Jackson liked this show until the stink bug showed up and gassed everyone. He started screaming and crying, a sign of a very TIRED Jackson.

We then headed over to Camp Minnie Mickey to see if we could get into the Lion King show. We got over there a bit too late for the show so we decided to just go for character autographs. Man we hit the jackpot too! We got Chip n Dale, Goofy, Mickey, Minnie, and Thumper all in a span of about 10 minutes. Again the cast members were AWESOME at discreetly getting us to the front of the line and getting us in to see the characters as quickly as possible. After we got all these autographs we knew it was about time to head back to GKTW for dinner and Christmas. But on the way out we saw Lilo and Stitch. Annette went with the boys to get pictures and autographs and the next thing she knew she had started a fight between Lilo and Stich. Lilo apparently used too much room for her autograph and Stich was making a stink about it. It was really funny.

We made it back to GKTW in time for some swimming in the pool before it was time for dinner. So Annette, the boys and I got to enjoy the nice pool for about an hour or so before the grandparents showed up for Christmas Dinner. GKTW allows guests of people staying to have one meal and one icecream snack, so we picked Christmas Dinner for them to enjoy with us. It was during Christmas dinner that we met fellow Disboarder, Mom2mitokids and her family. After dinner we went over and got to visit with the big guy, Santa. After our visit the boys got gifts from the elfs, Jackson got a nerf flag football set and Kade got a light brite. After getting their gifts we went over and helped Kade make his star. After making his star the boys got their pillows too. You can't goto the castle with our riding the carousel a few times too. Jackson made a new girlfriend with one of the college volunteers and she ended up riding the carousel with him a few times. We talked the boys into having icecream and then heading to bed.

Up next Day 3 - Magic Kingdom and the croup.

Kade's Wish Trip - Day 1

2011-03-24T18:19:00.003-05:00

March 16 5am - Annette and I are in bed and hear Kade making his "happy noises" from his room. We were both really surprised because about 16hrs earlier the poor kid had to have an abscessed tooth pulled. We went into his room and sure enough he was wide awake and ready to go, he was feeling MUCH better, but his face was still a bit swollen from the infection and extraction. We were were also surprised that Kade was awake before Jackson, because Jackson was SOOO excited that we were going to Disney, he didn't wake up until about 5:45. Both boys ate breakfast and we did some last minute packing and the waiting started. First we waited for Nannie, Pawpaw, Grandma and Grandpa to show up. They would be following the limo to the airport. They all arrived and Nannie and Pawpaw were leaving their dog at our house so our neighbor kids could watch our dog and their dog. Next thing we knew GG and Grandpa B (my grandparents) showed up to see us off and to wait for the limo. The waiting was killing us! Jackson was glued to the front window waiting for the big black limo to show up. Finally it did, and our driver Rico was excited to get us packed and on our way.

After some pictures with the limo, we were on our way and we were all packed into the limo enjoying the ride to the airport. Jackson could not sit still and was pushing every button, opening every lid and testing out each seat. Meanwhile Kade was enjoying riding on Annette's lap, she put him down on the seat so he could stretch before the airplane ride. We got to the airport and made our way though security just fine. The TSA agents were great with Kade and his wheelchair. They offered to let Kade stay in his chair and be check but Annette took him out so they could inspect the chair. We got to our gate and waited for the grandparents. Grandma, Grandpa and Nannie showed up, but no Pawpaw. Turned out Nannie had put a big bottle of lotion in her carry on and the TSA agent would not let it pass. Her options were to check the bag it was in or throw it away. She opted to check it, but made Pawpaw check it for her. He took off to the ticket counter without shoes on to check the bag. The bad news was he would have to wait in the TSA line again. When he got back in line Nannie asked a TSA agent to get him out of line to get through the line. This freaked Pawpaw out because all he knew was a VERY LARGE TSA agent was singling him out to get checked. We all had a good laugh about that, Pawpaw did not think it was funny.

We were allowed to pre-board our plane since Kade was in his wheelchair. We got on the plane, gate checked his chair, got situated and off we went! Kade got to use his Cares harness to allow him to sit in a seat all by himself (to read more about the Cares harness see this post). Kade did fine during the flight, even took a bit of a nap. Jackson did well too and got to look out the window the entire time. We got to the Orlando airport and we had a greater from Give Kids the World (GKTW) waiting for us with a sign with Kade's name on it. She took us to baggage claim and made sure we met our rental car person. We got our luggage, and were introduced to our van for the week. I say introduced because it was a lift van, since we don't have one at home we had a bit of learning to do. We also found out that our rental car company had paid for all of our tolls for the week! That was so nice, because we did not have to worry about loose change etc.

We arrived at GKTW and went into the main lobby. We were given a quick orientation by Ingrid and shown to our villa for the week (or so we thought - funny story). Our villa was #225 and was in a perfect location between the pool and Matthew's Boundless Playground. After unloading our luggage it was time to explore the grounds. We walked around and made it the Gingerbread house for dinner. This was our first encounter with the AMAZING volunteers that work there. The volunteers that night were Disney employees that volunteer a few times a month at the village. After dinner we went inside the castle and saw all the stars from prior wish kids that are forever on the ceiling of the castle, it was an amazing site to see! On our way out of the castle Jackson found out he could get a free tattoo from the girls working in the boutique, so he and Kade both got airbrushed tattoos. After the tattoos dried the boys rode the carousel several times and Kade LOVED IT. We got to meet Mayor Clayton (the mayor of the village who is a bunny) and his lovely wife Ms Mary. The kissed and loved on the boys.

After we pried the boys off of the carousel we headed to bed since we knew we had a early and busy next day.

Coming up - Day 2 Animal Kingdom

CARES harness - a review

2011-03-24T07:51:00.017-05:00

As I mentioned before one of Kade's issues is being very hypotonic, lacking muscle control, this makes it impossible for him to sit up by himself without help. This was one of our concerns when we found out he was getting a Wish Trip, and would have to fly. At the suggestion of a Facebook Friend, we found the CARES harness for kids. It is a harness that assists with support while flying for ALL kids, not just special needs kids. We really hoped it would work for Kade.

So when we boarded the plane Annette and I made sure Kade has his soft collar on and his Benik Vest, and we setup the CARES to help him sit up. We were happy with how easy it setup and hooked up. We were even more happy with how well it supported him and allowed him to sit up in the seat BY HIMSELF. Kade was able to fly without issue and seemed to be very comfortable doing so.

After we got in the air we had several comments from the flight attendants on the harness. One attendant said that she is seeing a lot of the harnesses in use and how it is so much easier to assist flying families to set up the harness than assisting with setting up car seats in the seats, plus that some families do not understand that some car seats are not FAA approved for flight and cannot be used on the plane.

One of the things that impressed us the most about the harness was how easy it was to setup and "transport". We literally had the harness ready for Kade in just a few minutes, it took longer for us to get his vest and collar on than it did to setup the harness and buckle him in. I know that if we would have taken Kade's regular car seat, we would have spent a lot more time securing it into the seat, not to mention his car seat is NOT FAA approved for flight. One other really nice thing about the harness is that when it is not in use it fits into a bag about the size of a 1 gallon zip top freezer bag! Also important was the removal of the harness after the flight. I think it took us less time to remove the harness and get off the plane than it did to setup the harness, so we were on our way off the plane as quickly as we could.

Thank you CARES for allowing Kade to travel safely in the air!

If you are interested on reading more or purchasing a harness please visit the CARES website.

Radio Intervew

2011-03-23T10:19:00.001-05:00

I have a team for the Walk for Wishes to raise money for the Missouri Make-a-Wish office and I am trying to get word out and raise money for this great organization. Early last week I took a chance and emailed a local radio host asking him if he would be willing to mention this site, and to ask his listeners to donate if so inclined. I was surprised at what happened next.

Last Tuesday I was up picking up a rented lens for my camera and my phone rang with a blocked number. I answered the phone and immediately recognized the voice on the other end, it was Frank O. Pinion. He told me that he got my email and wanted to speak with me about Kade, Make-a-Wish and what was going on with our trip. After about a 45min conversation about Kade's medical issues, and our family he said he would have the radio show producer call me back and he wanted to interview me on the air about our trip.

At about 3:10pm last Tuesday I did a radio interview on the Large Morning Show in the Afternoon with Frank O. Pinion. It was a great interview and I think Frank really wanted to help. He was very impressed with what Make-a-Wish was doing for us and what they do for other families. Below are two links to the audio. The first has a few "hiccups" in it due to buffering etc, and you can hear voices of my co-workers who were recording it for me. Have a listen.

Clip 1

Clip2

Home sweet Home

2011-03-23T07:06:00.002-05:00

We made it home from Kade's Wish trip. We all had an amazing time. Disney and Give Kids the World are amazing places. Over the next day or so I will recap our trip by each day. Right now I am working on the 1000 pictures and 6hrs of video that we took. Thanks for checking in.

Frank O Pinion

2011-03-15T15:49:00.001-05:00

I was on Frank O Pinion this afternoon to talk about Make a wish. Thanks Frank for having me on.

Supporting Make-a-Wish

2011-03-03T07:49:00.001-06:00

On Saturday, April 2nd, I will be participating in the Make-A-Wish Foundation’s 2011 Walk For Wishes at Queeny Park, and I would like you to join my team! It’s a family friendly event with lots of food, music and entertainment. Plus, it’s a great opportunity to get some fresh air and a bit of exercise.

The Make-A-Wish Foundation does wonderful work as it brightens up the lives of local children who are battling life-threatening medical conditions. With lots of companies cutting back on their giving to all charities, the Walk For Wishes is a great way for us to help make more wishes come true.
Please visit our team page and be part of my walk team. If you can’t make it on April 2nd, I hope you can make a donation to support this very important mission.

Celebrate the Child

2011-03-02T08:34:00.003-06:00

Last night we were watching Parenthood on NBC and they had a scene where a child with Aspergers overheard his parents say that he had a disability and they tried to explain to him what that meant. A scene later they were in a therapists office explaining what had happened and they found themselves rationalizing their words to the therapist. At one point the therapist finds out that the mom cried while explaining to her son that he had Aspergers. The therapist made a comment to the affect that you crying while explaining to him that he has Aspergers means that it is something to be mourned. If this was hard to follow watch this video.

We have found ourselves in this situation before. We have explained to people about Kade's diagnosis' and at one point or another cried during the explanation. Unlike the parents in this video we were not mourning a diagnosis but rather the loss of our perceptions of the way things were supposed to be, and perhaps even greater the fear of the unknown. This happened far more frequently when the diagnosis' were fresh and the worry was fresh, now it seems that the ones that cry are the people we are explaining Kade's issues to. It is important to remind yourself not to mourn the condition, it is apart of the strengths and weaknesses of your child. Rather than mourn the weakness, celebrate the child.

If you have not watched Parenthood before tune it on NBC at 9pm CST Tuesday nights.

Exactly where I should be

2011-03-01T09:43:00.001-06:00

Yesterday I posted about Colin Farrell and the interview he gave about his son's ABILITIES, and how his son is exactly where he should be. Yesterday afternoon I was involved in a conversation with someone at work and was gobsmacked by what the person said to me.

I was over paying a hospital bill and one of the ladies that works in that department reads our blog and follows me on facebook (she does this from home NOT AT WORK). She heard me talking, yes I am a loud talker, and came out to say hey. She told me that she was excited for us to be going to Disney on a wish trip, and how cool it was that we were apart of the Big Give and getting things for the boys from complete strangers. We had a bit of a conversation about the trip and all the cool things we have planned. Then she said something and the words utterly shocked me, she said "I want to be like you when I grow up". At first I laughed and thought how I have said that before jokingly, and she said it again. I must have had a puzzled look on my face because she explained herself a bit more, unfortunately I can't go into detail because I was overwhelmed by what she was saying. I was shocked. This lady is a very strong individual, a kind soul, and genuine GREAT person, for her to be saying that she wanted to be like ME....wow. She said one of the things she respects about Annette and I, is that we give back, and she referenced the toy drive we did for Children's Hospital at Christmas. My first thought was "but I am not doing enough, I want to do so much more for these organizations that have done so much for us". More giving back is coming, I promise!

This conversation stuck with me all evening last night, and still this morning. I finally came down to this thought, "Am I where I need to be?". Right now, I think I am, but the danger is standing still. Are you where you need to be?

...Exactly the Way He Should Be

2011-02-28T10:47:00.002-06:00

My morning news feed had a surprise for me Monday morning. There were a few headlines about the crazy storms that ran though our area Sunday night, but more interesting to me was a headline quoting Colin Farrell "My Son is exactly the way he should be". The headline got my interest, so I clicked the link and was taken to an article on People.com.

Colin Farrell's son has a rare neuro-genetic disorder called Angelman Syndrome. Angelman Syndrome can manifest with seizures, developmental delays, and issues related to walking. Farrell is quoted questioning the term normal (one of my favorites)

"I look around and I see people who move perfectly, who walk with grace, who speak with great diction and clarity and a great use of the English language and we're all miserable f---ers – including me, at times. And then I see this fella who doesn't move the way what's perceived to be 'normal' is, and he's as happy as can be."

Kudos to Farrell for attacking the stigma of normal. The term normal used to compare special needs kids to typically developing kids is one of my big pet peeves. The question "whats wrong with him" or "what can he do" send shivers up my spine. Special Needs kids are normal, there isn't anything wrong with them, and they can do more than most could ever imagine. Most have proved Doctors wrong, proved that love conquers all, they can say more with a smile or wink than most can say with 500 words, the list can go on.

People.com Article
Angelman Syndrome Foundation

Floaties

2011-02-27T19:41:00.000-06:00

Nannie and Pawpaw got a pool last summer. Shortly thereafter we knew that Kade really enjoyed swimming. We would hold him and he would make noises and kick his legs and move his arms in ways that he wouldn't when out of the water. He really enjoyed himself. It did raise one issue. One of us would always have to hold him or support him because none of the floaties that we had would support him in ways he needed to be supported.

This winter we were told about a floatie device that was developed for special needs kids. We watched a few videos of it and Annette immediately knew we had to have one for Kade. When in use the floatie goes around the neck of the child and supports their head. Ours arrived a few weeks ago and we are planning on taking it to Disney with us in a few weeks, but Annette wanted to try it out before we leave. Saturday morning we packed up and went to our local YMCA and jumped in the pool. While Jackson was swimming and playing around Annette and I got Kade situated in the WaterwayBabies device. He didn't seem to mind the device, and as you can see below, seemed to really like it. It kept his head well supported and above water even with kids jumping in and splashing about. So any parents of special kids that are looking for a way to get their kid in a pool try out the WaterWayBabies device.

Rock 'n Roll

2011-02-25T10:10:00.001-06:00

I picked Jackson up from Pre-K yesterday and it was pouring down rain. We ran to the car, got in and we drove off. I have a horrible habit of listening to Talk Radio on one of two AM stations in our area. I was driving in the POURING down rain and I hear from the back seat:

"Turn on some Rock 'n Roll"

Did he just say Rock 'n Roll? Where has he heard this, besides, the weather was getting ready to come on my talk radio station. Again I hear:

"Dad, turn on some Rock 'n Roll"

So, I turned on an Adult Contemporary station out of St. Louis and Lady Antibellum was on. That song was on about 15 seconds and I hear:

"Dad this is not Rock 'n Roll, this is boring"

So, I turned on St. Louis' hippie rock station and sure enough some Led Zeppelin song was on. Not long I hear:

"Dad this is cool music"

Before too long he will be yelling "Free Bird" from the back seat, while I listen to AM radio.

Listening when nothing is said

2011-02-24T08:31:00.001-06:00

I joined a special needs parenting site on facebook the other night, and the latest post on their page was the following:

‎"You say my child can't communicate. I say you don't know how to listen!" ~Renee Charlan

It was like someone had taken thoughts out of my head and posted them. Kade doesn't talk, but he does communicate. Kade's Vision Therapist pointed out some time ago that when you ask Kade a question as to an item he wants, he will make the first move with his eyes. Kade can move his eyes much easier than he can move his arms and hands, or even turn his head. When he wakes up in the morning and we bring him into the living room, we ask him "where is mommy/daddy", most of the time the response you get will be a quick eye glance to the direction of where mommy/daddy are. Kade can also tell us when he is "done" with something. He typically does not move his arms with meaning or intent, but when he is DONE with something he will lift his arms, put his hands together and PUSH the item away. This goes for food, a cup, or his arch enemy the nebulizer face mask.

Studies have shown that over 50% communication comes from Body Language. It is important to remember that just because someone isn't "saying" something verbally they might just be "saying" something physically.

A new member of the club

2011-02-23T12:52:00.002-06:00

We got a phone call the other night from a friend who's child was just diagnosed with having seizures, more particular, Infantile Spasms. Infantile Spasms (IS) is a very severe form of Epilepsy, that according to all documentation only has a few treatment plans that might work. IS typically rears it's ugly head during the first year of life, between 3mths and 8mths of age. Sometimes the seizures can be mistaken for a Startle Reflex that infants can show, and to compound the issue most pediatricians have not seen the disease in clinic.

IS hits home to us, because during Kade's three week hospitalization back in 2008 when he first started having seizures, IS was tossed around as a possible diagnosis. So, we know first hand what these parents are feeling and the decisions they have to make. We also know that they are going to become neurology students, and in time, will probably have a better understanding of Epilepsy than most people let alone some pediatricians.

Tonight we will go visit them and "welcome" them to the club. Although this isn't a club that anyone wants to join, and the initiation is cruel and life changing.

If you want to know more about Infantile Spasms here are a few links

Wikipedia.org
Wash U Infantile Spasms Study - Kade's Neuro is one of the Dr's doing this study
Marissa's Bunny.com - a blog written by a Dad who's daughter has IS

Say Hey

2011-02-16T07:32:00.001-06:00

Over the past few weeks I have seen my stats for this page drastically increase. I am thrilled that people want to read what I write. I especially like that a number of your return or have subscribed to my feed.

I missed "Delurking Day" so......

Leave a comment, say hey, I do appreciate your visits.

Josh

Support while flying

2011-02-15T17:05:00.001-06:00

Once we found out we were going on a Wish trip to Disney we immediately started worrying about how Kade would do flying. The biggest concern was that of him sitting up in the seat, according to FAA regulations he is "too old" to sit in a car seat on the plane or ride in Annette's lap.

This is where our "friends we have never met" came into play. Thanks to the suggestion of fellow mito kid's mom, we found a harness called a Cares Harness. This harness turns a normal airplane seat belt into a 5 point harness to better support a child in flight. After what Owen's mom told us about using the harness with Owen, and looking at the harness website we knew we had to have one.

Today the UPS man delivered Kade's Cares Harness so graciously provided by the Kids Fly Safe company free of charge for our Wish Trip.

THANK YOU Kids Fly Safe for spreading some "pixie dust"!!!!

I am Clark Griswald

2011-02-14T13:06:00.001-06:00

Yesterday we held our first Disney Planning Meeting. I smoked a nice brisket and we had a nice dinner with my parents and my in-laws. After dinner, we went to the basement and I hooked up my laptop to the tv and went over our trip itenerary covering flights, what parks we are doing on what days, dining reservations, rides, etc, doing my best to channel Clark Griswald and his ability to schedule a vacation. One of the things I showed was video from the Dessert Fireworks party that we will be attending at Magic Kingdom.

Jackson was thrilled that he will get to see Tinkerbell fly over us.

I am excited at the chance of letting the boys take part in Jedi Training at Hollywood Studios.

Traffic Lights

2011-02-10T20:19:00.001-06:00

We watched a new tv show the other night called Traffic Lights. It is about three guys who have been friends for years and each one is at a different stage of life. The end of show one of the characters gave a eulogy and in it used an analogy of traffic lights.

“On the interstate, you know exactly what you’re going to get; it’s just a straight line and a lot of fast food. But on a road with traffic lights, it’s a whole other story. Sometimes the light’s green: you enjoy the open road, wondering what’s out there for you. Sometimes the light’s yellow: You slow down and get your bearings, and you think that this is some place you might want to stop. And sometimes the light is red: you take a moment and realize where you are is pretty good. In fact, it’s exactly where you need to be.”

Everybody wants the green light, easy to get where you think you need to be and not much waiting. When you are running through life hurrying from one thing to another, or counting days to something, you are wanting that green light so you can keep going without stopping. Why stop?

The yellow light might be a warning or a signal to slow down and take a look around, too often we fly by and do not notice what is going on around us. Yellow lights can be a pain, but are necessary in life.

What really hit me was the red light. Most of the time we perceive the red light as a pain in the butt when we are trying to get from place A to spot B. But what a red light can make you do is STOP and look around, and you may just realize that you like where you are. When get a diagnosis that your child that is life threatening or classifies as a special need you think STOP RED LIGHT. Things just stop, all plans are out the window, now you have more delays. After a while you realize that the RED LIGHT, while not a good thing, isn't as bad as it may seem. You will still get to your end destination, it may take longer, but you will enjoy the trip more.

2011 Super Bowl Commercial Ads

2011-02-08T19:38:00.002-06:00

This past Sunday we watched the Super Bowl with some family and friends. Perhaps more anticipated than the game were the commercials. Each year companies battle it out to win the title of best commercial. Each year there are winners and commercials that, well, suck.

My favorite commercial this year was the VW commercial was my favorite. I loved the mini-darth vader trying to use the force and being shocked when his dads car starts.

Groupon managed to make a lot of people mad with their commercials. I must admit when I saw the Tibet commercial aired I literally laughed out loud. I thought it was hilarious, but I do have a sick sense of humor. I read today that Groupon has had such a outpouring of bad press over this commercial that they are promising to no longer air it. Thankfully it will forever be enshrined on youtube.

Groupon's other commercial is apparently a bit less offensive because I saw it air tonight during *COUGH*GLEE*COUGH*. While funny, I like the Tibet commercial better.

Friends you have never met

2011-02-07T20:14:00.001-06:00

Before the advent of social networking to meet a new friend you had to literally MEET the person, unless you were in a prison and were lucky enough to get a pin pal. Flash forward to when Mark Zuckerberg was in college and started work on "The Facebook". I imagine that he had no clue how Facebook would change the way that people communicate let alone meet. Facebook has opened methods of communication for people that were never imagined possible.

I don't know how parents of special needs kids ever kept their sanity before social networking or discussion boards. Not having the reassurance, input, or brain storming of other special needs parents would be debilitating.

When I joined Facebook a few years ago, it was out of curiosity. I was hoping to find old classmates from high school and college and reconnect with them. I have found most of my high school classmates, we only had 97 in our graduating class, and a few college classmates. But what has happened over the last few months has shifted the focus for me. I have started meeting parents of other special needs kids. Some have CP, some have Mito issues, some are undiagnosed, but they have have the same thing in common, they want the best for their kids.

About a year ago I became "friends" with a mom from central Florida name Janelle. Janelle has a little boy that was featured in an article in the Wall Street Journal titled "Whats Wrong with Eli". Eli has an undiagnosed neurological issue, and he displays some of the same issues as Kade. I reached out to her via email after reading the article. Eli has made some awesome progress, but still, is still undiagnosed. I met another mom, Anita, who has a little boy name Owen. Owen has mitochondrial issues similar to Kade. Right now Owen has spent 51 days in the PICU of an Ohio Chidren's hospital battling for his life (caringbridge site here). He had some recovery issues after having his tonsils taken out and has been in the PICU since. We have become friends and exchange messages often updating each other on our kids. With each connection we have made, the core values are the same, we all have the best interest of our kids as first priority, and second, we want reassurance that we are doing the right things for our kids, but we have never met face to face.

So with that being said, Thank You to all of the special needs parents out there for keeping us from going crazy, and Thank You Mark Zuckerberg for allowing us to meet friends without actually meeting them.

Disney in Style

2011-02-07T13:39:00.002-06:00

Kade has been granted his wish of going to Disney World. Now Annette has turned her attention to apparel to wear while we are down there. Take a look at some of the things we have/will be making to wear.

This will be an iron on transfer to a t-shirt.

This was made with a bleach pin.

Our very own Disney Commercial

2011-02-06T12:56:00.001-06:00

Saturday we had Kade's birthday party. We had a few friends and family members over to help celebrate. Mother Nature gave us surprise and dropped 5'' of snow on the ground so I was outside shoveling at 8am so our guests did not slip and fall on our driveway.

Kade got a bunch of things that he can use, and a few gift certificates to a special needs website to order adapted toys from.

After Kade was done opening his gifts we decided it was time to tell the boys that we were going to Disney. We knew Jackson's reaction would be entertaining so we videoed the process. We wrapped up a bucket with a bunch of little Disney toys and I made a countdown calendar with a bunch of Disney characters.

Parents who "Get It"

2011-01-31T09:26:00.001-06:00

Several months ago Annette and I attended a conference on Cortical Vision Impairment at The Delta Gamma Center. It was a great conference with really good information. We also got to meet other parents of kids with CVI, most of which had other medical issues. One person in-particular made a connection with Annette and they traded e-mail addresses. Megan and her husband have a little girl with CVI and some tone issues and she was interested to hear about what all we have done with Kade and what toys/tools we have acquired for him.

Fast forward 3 months. A few weeks ago Annette got an email from Megan asking for tips on handling equipment requests with First Steps. Annette and Megan emailed back and forth a few times, and decided to meet up when DGC had their special day at the Magic House in Kirkwood.

We met up with Megan and her daughter and got to meet her husband, Dez, and their son. We chatted for a bit and decided that we needed to chat more. A few more emails were exchange and then it was decided to have a meetup/support group. Annette, and Megan started emailing Jen, Jackson's mom, and invited her family to the meetup as well.

Friday night we headed up to Megan and Dez's house in South City. Jen's family could not make it because the flu bug had hit their house HARD. Annette, the boys, and I had a blast at Megan, and Dez's house. The conversation was not about anything in particular, it ranged from wheelchairs, diagnosis', therapies, movies, beer, wine, and how awesome it was to have a conversation with "Parents who get it". There were no odd looks, questions of "what CAN he/she do" or the dreaded "How do you do it?". There was one similarity that I did not realize until just now. I have said before how much Jackson loves his brother, and I am not sure if Jackson really knows how different things are with Kade, but none the less Jackson loves Kade and plays with him. Megan and Dez have a son that, like Jackson, loves his little sister and plays with her just like any other brother would play with his sister.

It was nice to spend an evening with "Parents who Get It", but perhaps even better for Jackson to play with a "Brother who Gets It".

Giving Kids the World

2011-01-13T18:19:00.001-06:00

While planning our trip to Disney I have been amazed by how Disney and Give Kids the World (GKTW) treat these kids. Disney donates an amazing amount of money to GKTW and to Make-a-Wish to make these trips happen. Reading about some of the wish trips to GKTW, again and again kids and parents LOVE GKTW. They treat the kids like royalty.

GKTW was started by Henri Landwirth, a Holocaust survivor who was a hotel owner who saw a need to help "sick" kids make their wishs come true. Landwirth enlisted the support of colleagues in the hospitality industry, including our world-famous theme parks, to assist him in bringing these special families to Central Florida within 24 hours if need be. He called the project “Give Kids The World,” because that is just what he intended to do - provide memorable, magical, cost-free experiences to children with life-threatening illnesses and their families.

As the program expanded and the number of families continued to grow, it was apparent that Give Kids The World would need to create a place that could better serve the special needs of our families. The gates of Give Kids The World Village opened in 1989.

Today the Village is a 70-acre resort complete with over 140 Villa accommodations, entertainment attractions, whimsical venues, and fun specifically designed for children with special needs.

With the help of many generous individuals, corporations and partnering wish-granting organizations, Give Kids The World has welcomed more than 100,000 families from all 50 states and over 70 countries.*

Not only do they provide a place to stay they offer so much more. They give free food provided by Boston Market, free ice cream 24hrs a day, toys for the kids, every Thursday night is Christmas night and Santa comes with gifts, Friday night is Pirate and Princess pool party, the playground is wheelchair friendly as is the carousel. They give each family 3 day passes to Disney, 2 day passes to Universal, and a day pass to Seaworld.

This facility is 99.9% staffed by VOLUNTEERS! They really do everything they can to Give Kids the World. Right now GKTW is running a fundraising event called The Power of 10, where they ask people to get 10 of their friends to donate and eventually raise $1,000,000. If you feel like donating feel free!

*information provided by Give Kids the World website.

Whats your wish?

2011-01-12T20:56:00.001-06:00

If you came across a genie bottle, rubbed it, and a genie popped out what would you wish be? How many times have you found yourself saying "I wish..."? Most of the time the the wishes are frivilous comments. I know last week I was wishing I would win the MegaMillions 355mil Jackpot!

Back in November, on my birthday no less, we got a call from the Make-a-Wish organization. Kade's name had been submitted and they wanted to ask me a few questions about his diagnosis' and ability, and most importantly, what he liked. The lady on the phone explained that the next step would be for them to send paperwork to Kade's neuro to verify that his conditions were life threatening or degenerative diseases. We didn't hear anything from them until last week when we got a package in the mail explaining what Kade could wish for, what he could not wish for, and who our "Wish Granters" were.

We setup a meeting with Kade's Wish Granters for last Friday night. They came out after dinner and asked all kinds of questions about Kade, and explained the whole process. The fact that Kade cannot speak makes things a bit more difficult. Normally they would ask the wish kid what their biggest wish would be and have them draw a picture of it. Since Kade cannot talk, we were his voice. We explained how he liked to swim, likes lights, LOVES music, and loves hustle and bustle of crowds. We all tossed around a few ideas but settled on a big wish. One that involves all of us getting on a plane and taking a trip to DISNEY WORLD. This trip isn't just about Disney World, we will be staying at a resort called Give Kids the World Village. It is a resort strictly for Wish Kids with free food, free toys, swimming, wheelchair accessible playgrounds and carousels, and free tickets to the parks. The nice thing for us is that Kade will not be the only kid in a wheelchair, or with a rare disorder, or who has spent too much time in the hospital, or who's outcome is unknown. We won't be in the minority, and there is a certain "good" feeling about that.

We don't know the dates of our trip yet, but rest assured we are planning and planning and planning.

iPad gives disabled Kid a voice

2010-12-29T08:16:00.001-06:00

This morning I was reading a post on Engadget this morning and was happy with what I was reading. A Computer Science Professor at Wake Forest University has a son that has been diagnosed with Pitt Hopkins Syndrome, a rare genetic disorder that causes delays in cognitive development, motor skills, and verbal communication and his class has developed an iPad app that gives kids like Kade a voice.

It is called VerbalVictor, and is due out in the app store any day. It allows users to take pictures of items or activities, put sound to the picture and make it an icon on the iPad. The best part is this app is only $10! Other apps similar to this are over $100 for the iPad. We will be purchasing this app for Kade!

References:
Article on HuffingtonPost
Article on Engadget

All I want for Christmas

2010-12-28T17:00:00.001-06:00

Who said Holiday breaks were meant to rest? We have been really busy over Christmas break.

Christmas time is so much fun. Last year Kade was in the hospital for Christmas so we were set to have a better Christmas this year. Both boys were healthy, and Jackson was excited for Santa to come visit. We woke up Christmas Eve to a Winter Wonderland. It had snowed about 5 inches overnight, and this added to the excitement. Annette wanted to have breakfast at Cracker Barrel, so we piled in the van and made a trip out. The snow was really pretty hanging on all the trees. Later in the day Jackson and I played outside with our neighbors son and made a snowman and even had a snowball fight.

Christmas Day Jackson woke us up at 6am to open gifts. The boys got a lot to fun things, and Jackson got everything he asked for from Santa including his "battle gun" and Jessie and Woody. Kade's big gift from Santa was an indoor mounted swing that he can use for vestibular stimulation. Nannie and Pawpaw came in and we had brunch and opened more gifts. That night we went to some friends house and hung out and open more gifts and played games.

Monday we took Kade to Children's Hospital to have his 24hr Video EEG. We were hoping that the EEG would be clear and we could come down or discontinue some of his medications. After 24 hrs, we met with Neurologists that were on the floor and they told us that Kade had several seizures and even a few while he was sleeping. So, the consensus is that we cannot come down on any meds just yet. We did get to see several of the nurses that we have had before, as well as met some new Doctors.

After we were discharged we went to a follow up appointment with Dr P. This would be our last appt with Dr P because he is moving to Seattle to work on some ground breaking research in genetics. We are disappointed that he is moving, but this is an opportunity that he cannot pass up. Plus he wants us to keep in contact with him, and he said that Kade's blood sample will be included in some of the genetic tests being done. So, hopefully we will get some genetic questions answered. Either way, we will miss him!

Acceptance

2010-12-19T20:16:00.002-06:00

Most people in life search for acceptance. For most, it can be a difficult thing to gain acceptance from complete strangers let alone family. Parents love their children unconditionally, but the same is not true for extended family. Sometimes extended family can be the most harsh, pointing out your weaknesses relentlessly.

Last night we had our family Christmas party with 80 or so of our closest family members from my mom's family. We had a potluck dinner and the REAL Santa showed up to pass out gifts. Earlier in the day we purchased an app for Kade's iPad called Melody Bells. It is an app with a series of hand bells at different tones. Kade got to use it before we left the house and he really enjoyed it. We took his wheelchair and iPad to the party with us so he could ring the bells for Santa. We set up the iPad during dinner and let Kade play with it. He went to town playing the bells and filling the room with sound. After dinner Santa passed out gifts to all the people who exchanged names.

After Santa left everyone hung out talking. Several family members came over to visit with Kade. Some talked to him and watched him play with the iPad. Some rubbed his head and held his hands. A few of the kids came over and helped him move his hands to touch the bells that are harder for him to reach. I didn't catch any stares, or pitty looks. All I saw was acceptance for who Kade is and what he was doing. That was the best gift of the night.

Free Laptop

2010-12-15T21:24:00.001-06:00

A few weeks ago a co-worker and I applied for Google's CR-48 laptop. They were holding an open application for the chance to receive 1 of 60,000 CR-48 laptops they were going to GIVE away. Not only were they free, but they come with two years of FREE 3G data access on Verizon's network. He and I both filled out applications but we both figured nothing would come of it.

Tonight we heard the UPS main outside and Annette went to the door to get the package. She brought it in and asked if I had ordered something online because the package was addressed to me. I didn't remember ordering anything so we opened up the box. As soon as I opened the box I knew what was inside. It was a Google CR-48. I was excited to open it and power it up.

Jackson was excited as well because this meant he got my old laptop. But he informed me he wanted my new laptop not the old laptop! We both sat on the floor and powered up the laptop. It asked for my google account information because this laptop is a cloud based laptop. Everything it uses is based on the internet, which may take some getting used to. I use most of Google's products so it won't be a big change for me. I will update the progress and my thoughts on the new CR-48 over the next few days.

Toys Toys Toys

2010-12-14T21:12:00.002-06:00

Several weeks ago I entered a post asking for donations of toys to give to Children's Hospital for kids that will be spending Christmas in the Hospital. We are doing this because Kade was in that position last year at Christmas and got toys from an unknown Santa. We felt like we should pay back this act of kindness.

I was not sure as to what response would be. I knew our friends and family have ALWAYS been supportive of the crazy things we do. Within a few days of posting that entry and and making a few entries on Facebook, toys started arriving. The first batch appeared on my desk at work, from someone who works in the lab who I rarely speak with, I didn't even know she read our blog. Then more toys started showing up, on our door step, at my mom's work, and in Annette's classroom. Some even purchased toys on amazon and shipped them to our door from as far away as Pennsylvania. The toys just kept coming.

We start putting the pile of toys in Kade's therapy room. Late last week when Shelley was here for PT, the toys were overrunning them. The toys were taking over the therapy room! Tonight we decided it was time to put all the toys together, sort, and put them in bigger bags to transport to Children's. Jackson and I unpacked all the Target, Wal-mart, and Toys-r-Us bags making a HUGE pile in our living room. It was at that point it hit me, I was moved by the spirit of giving that we have experienced. We asked, and you delivered! As we were unpacking Jackson was so excited looking at all of the toys, he kept saying "These toys are going to make the children at the hospital so happy". (yes he really talks like that) We made sure he understood why we were doing what we are doing, he was really excited about it.

All of you who donated, the anonymous and the ones we know, are now all honorary members of Kade's Krewe. Thank you and Merry Christmas!!

Giving Back

2010-11-27T07:56:00.001-06:00

Last year during the week of Christmas Kade was very sick. His white blood cell count was extremely high and had been fighting a chest infection for some time. His regular Pediatrician got the test results as an out patient test and called up to Children's to speak with the attending Neurologists and they wanted him to goto the ER immediately. This started a week long hospitalization including Christmas Eve and Christmas Day.

As anyone would be, we were bummed to be spending the biggest "kid holiday" in the hospital away from Jackson, rather than at home celebrating. Our spirits were brightened by family members that came to visit and brought Kade a few Christmas gifts. But still, we were lacking some Christmas spirit.

One morning there was a knock at the door, but we were not expecting any visitors. I went over and answered the door. To my surprise, it was Santa, and he was passing out gift bags for kids that were spending the holiday in the hospital. They were small gifts like coloring books, a stuffed animal, and a fleece blanket. These were gifts that were given by donors that wanted to brighten the time spent in the hospital. Unfortunately, Santa could not come in Kade's room because he was on isolation, but still it was very special.

This year we have decided to give back. We will be purchasing small toys for Children's hospital to pass out to kids that are in the hospital during Christmas. If you have you would like to help we will be collecting gifts and money to purchase gifts. We ask that they toys be a wide range of toys because like Kade there are kids of all abilities that may receive these gifts. We are not asking for a $90 robot, just things like coloring books and colors or matchbox cars, or small baby toys, etc. If you would like to help please send me an email or leave a comment on this page.

Tis the Season

A family Vacation

2010-11-21T20:40:00.001-06:00

This spent this weekend in Branson, MO with family. We went with my parents, my aunt and uncle from Michigan, and some family friends from Lake of the Ozarks. We stayed in some condos out by Silver Dollar City that are AWESOME!

We started the weekend by seeing the Dixie Stampede show on Friday night. Everyone enjoyed themselves including a VERY tired Jackson. Saturday the girls went shopping and I played tour guide and took the guys around to see Tablerock Damn and a few other sites. Saturday afternoon we went out to Silver Dollar City and walked around, ate A LOT of food, and rode some rides. Pawpaw, Uncle Mike and "the other" Mike rode a few roller coasters together including one that blasted off faster than any other roller coaster I have seen. Everyone was having a great time.

Since we were there with the boys we knew we had to make a stop to see Santa and let the boys fill Santa in on what they wanted for Christmas. We walked in and were greeted by Santa's helper elf, Clarence. He told us the line seemed long but would only take us about 20 minutes to see the Big Guy. Annette and I started scoping out the area to see how we were going to handle Santa's meeting with Kade. We really wanted Kade to stay in his wheelchair, he can be a bit hard to handle for people who are not expecting Kade's poor muscle tone. One problem, there wasn't a ramp to Santa's chair, only stairs. Annette went to find "Clarence" to see if he could help. She came back a few minutes later and said he would arrange for Santa to come to Kade since Kade couldn't go to Santa. Clarence came by several times to check on the boys, calling they by name without asking their names (Annette told him earlier), which really surprised Jackson. Clarence did a great job addressing our concerns. We still were not sure how Kade would do with Santa and vice versa.

What happened next blew me away. We got to the front of the line and Clarence arrived by our side and told us to step over to this other area with a lone chair and some Christmas trees and other decor. He said Santa would come to this location to meet with the boys. Sure enough the line stopped, Santa got up, and came down the stairs to meet with the boys. First Jackson hoped up and got on Santa's lap and talked his ear off. Then Santa leaned over and started talking to Kade. You could see that Santa soon realized Kade needed some special attention. He put his arm around Kade's chair, got down by his face and was really talking to him. He was touching Kade's hand and rubbing his legs. Santa and the boys had some pics taken. Kade reached out to try to touch Santa's hand during the pictures! Santa quickly reached down and grabbed his hands and held them for the remainder of their visit. Santa said his good byes to the boys and made his way back up to the stage. I was AMAZED! Barely holding myself together, I told Clarence Thank You and asked him to tell Santa Thank You.

Our next stop was the train ride to sing songs. Again we were worried how this would end up with Kade. Again I was totally amazed by the Silver Dollar City staff. They directed us to their handicap entrance and told us that Kade's wheelchair could go on the train. We were the first ones on the train and they were able secure Kade's chair down so he would have a safe ride.

We had a great weekend with great people.

Oh My Goodness

2010-10-12T20:10:00.001-05:00

Kade is doing sooooo well!! His vision therapist came tonight. Kade smiled for the sound of the bell, chose the bell over the spider, and colored by himself. He even waved bye when Jo asked him to! He is doing so good. I am so proud of him!!! I am so proud of both of our boys!!
Jackson is doing great as well! He is "almost five!" He is getting so grown up! He loves his school, his teachers and his friends. He is looking forward to his Phineas and Ferb birthday party in a few weeks! Cannot believe he is almost 5!!! Where has the time gone???
We continue to keep very busy! Enjoying my favorite time of the year...Fall!!! The leaves are beautiful! Even Jackson says..."Mom look at that beautiful sunrise!"

Friends

2010-09-12T21:53:00.001-05:00

Have you ever met someone, that at that instant, you knew you were supposed to meet? There is just something about them that links you to them. It might be that you went to the same school, have the same political affiliations, or like the same football team. But what if you are a kid that has a disability trying to make friends, it has to be difficult. To make it even more difficult what if you were a kid with an eye sight issue and you could not see.

One of the facilities that Kade gets services from, The Delta Gamma Center of St. Louis, holds a play group for kids with vision issues a few times a month. It serves as a chance for the kids to play and the adults to meet and find support in a group setting. This past week Grandma and Grandpa took Kade to the playgroup. They sang songs, played and had fun. Typically when Kade is in a "new" setting like this, outwardly he looks like he is sleeping, but in actuality he is soaking things in, seeing what everything is about.

But on that day, Kade made a friend. A little boy, that has a lot of the same issues as Kade, epilepsy, vision issues, and muscle issues. He also shares some of the great things about Kade, a loving family, great therapists, the same awesome neurologist, and a great taste in cloths.

What started out as an outing to a service provider ended up as a trip to meet a friend that God knew Kade needed, and we needed.

The craziest part about this is not only do they have a lot of the same medical conditions, have wheelchairs, and the same Neurologist, but his name is Jackson and he lives less than 10 minutes from us.

An Interesting Read

2010-09-09T18:08:00.002-05:00

Today I came across an article on theweek.com that was written about a mother of an autistic child. The title of the article is "Autism Journal: There is nothing wrong with my son". I found the title interesting so I took the time to read it. There are a few quotes that I could relate with within the article.

"...I just wanted my boy to look at something he liked and point." Back before Kade started having seizures Annette and I suspecting something was different. I remember that we looked at videos of Jackson at younger ages than Kade yelling, interacting, and rolling over. We both were perplexed why Kade didn't do any of that. We just WANTED him to do something, to meet A milestone

"After all, no one can really know what is going to happen, but everyone should have some idea of what already has. I don’t." After Kade started having seizures Annette and I spent time asking ourselves "did we miss something?". Did we miss clues that we should have caught that would have told us something earlier. We were not experts on seizures, and had no clue that a simple twitch or bat of an eyelid could be a seizure.

"...just because my child has a disorder does not mean that he doesn’t have anything else." This is so true! It isn't about what he can't do, it is about what he CAN do. Kade can do more with a smile than a lot of people can do with a fully functional body. It is about spirit not how well you can move your arms or legs. He CAN do whatever he WANTS to do.

"There is nothing wrong with my son." This is a matter of FACT! There is nothing "wrong" with Kade. He is who he is nothing less. I am going to use the "n" word....Kade is NORMAL for Kade.

(these quotes were taken from "Autism Journal: "There is nothing wrong with my son" by Tish Durkin from TheWeek.com

A few field trips....

2010-09-06T15:55:00.001-05:00

The weather was beautiful this weekend and we did not waste it. Saturday Annette and I took our own field trip with friends to 3 different wineries in our area. We had a great time enjoying the weather, good wine, good music, and each others company.

Sunday I smoked a pork tenderloin and we had dinner with Nannie, Pawpaw and the Kimes. After dinner the kids, Jared, Madison, and Jackson decided they needed to wrestle in our living room.

Today, the weather was just as nice. After lounging around this morning we took a family field trip after lunch, we went to the cemetery. 20 years ago today, my brother was killed when a tractor trailer ran a red light and hit the school bus we were riding. He was killed without suffering, but a few of his friends were hurt badly and spent a good amount of time in and out of hospitals. Needless to say none of our lives have been the same since.

Annette and I talked about possible questions from Jackson and the answers. We had each other laughing with the possible questions. Annette explained to him about the picture of Uncle Eli at nannies house and about how we goto the cemetery to remember Eli. Jackson was amazed that Eli is my brother, "I never knew that!" was his response. The funny thing was that Jackson only asked one real question "Can I climb on that" pointing to the headstone. My answer was an easy one, "Sure", because Uncle Eli would have liked for nothing better.

20 years have passed, and memories remain both good and bad. In those 20 years one saying rings true, Things Happen for A Reason. When events of crisis happen, it is hard to see the reason behind it, but if you are lucky, down the road, like 20 years down the road, you may find a reason or two. I absolutely know that what happened 20 years ago has helped me with a journey that started 2 years ago with Kade. Although not the same journey, but feelings of grief and the questions are the same.

Lets hope 20 years from know we have a few more "reasons".

The things a four year old says

2010-08-30T20:44:00.000-05:00

Jackson can say the craziest things. When you think he isn't listening he comes up with a one liner that makes you bust out laughing. Each day after school we have in depth conversations about lunch and what we each did that day. Normally his day consists of playing with Zander his best buddy from school.

This morning Jackson woke up with one and the first words out of his mouth to Annette were "What do skunks eat?". First thing in the morning, this is a difficult answer to come up with, plus if you make something up, he knows, somehow he knows. Annette told him she would find out while she was at school. I told him we could call Pawpaw and ask him because Pawpaw had a family of skunks that lived under his front porch when I was little. Jackson didn't want to call because "it was too early and the sun wasn't up".

So tonight at dinner I asked him if he ever figured out what skunks ate. Annette and I told him that they probably ate bugs and trash. He didn't like our answers so we got the phone and called Pawpaw and asked him. Pawpaw's answer, "stinky things" seemed to suffice, because later this evening Jackson told me that he knew that "skunks eat stinky things because they stink".

You never know what that boy will say or ask.