Shabby Miss Jenn

Tuesday, April 12, 2011

On the Road Again

One of my favorite things to do is sleep. One of my least favorite things to do is get up. That's especially true when getting up comes early; like 3:30 AM early!!! But in order to catch another early fight, it's what I had to do on Sunday.

Since December, I have been quite the traveler. Wade and I flew to VA for two weeks at Christmas. In February, Curtis and I flew to FL for a week for a much needed vacation in Key West. The very next week, my friend and I drove to Austin for the Inclusion Works Conference for four days. A couple weeks after that, Wade and I boarded another plane bound for VA for two more weeks. That trip was for the amazing magnetic therapy. Here we are two weeks later on yet another trip. This time we've landed in New Jersey where Wade is participating in an intensive week of Medek physical therapy with the very talented Azriel Novogroder. Azriel came to us very highly recommended by some new friends we met while in VA Beach. You can check out their story here.

As usual, the journey to New Jersey was quite an adventure. As mentioned, my day started way too early. When traveling with a child who has a disability, it is always wise to get to the airport early, and is also very important to make sure the gate agent is aware of the disability so that you can board first with assistance. In the past, I've been really good about this. For some reason, I chose to "wing it" this time. This wasn't my brightest idea considering it was a full flight on a HUGE plane. Not to mention that when I booked the flight, the system did not sit my three year old in the same row as me! When flying, I always bring Wade's Childrite seat with us so that he can sit up properly in the seat. It's also a lot easier to carry through the airport instead of a car seat, and I can also use it as a booster at restaurants. (It's a bigger version of the popular Bumbo for babies. Of course it has a bigger price tag too since it's designed for children with disabilities!) The seat belt on the plane fits around it just fine. I'm sure it's not FAA approved, but I have NEVER had an issue. In fact, many of the flight attendants have even commented on how great it is. Well of course since I had been up since 3:30 and had a massive headache, this would be the instance that the flight attendant would choose to follow guide lines and tell me that Wade couldn't use it. I told her he has a disability and won't be able to sit up in the seat then. She finally agreed to let him sit in it during the flight, but I had to hold him in my lap during take off and landing. I really don't see how that is safer, but anyway...


Now to the fun part! Navigating through Newark airport with a huge suitcase, Wade in his adaptive stroller, his Childrite seat, and a carry on bag. For those who don't know, you get your baggage from the ground floor, then you have to go to the third floor to catch an airtran over to the rental car area. Thank goodness for nice people at the airtran station! Once at the rental car area, I had to figure out how to install the carseat properly and become creative in an effort to fit the heavy stroller and huge suitcase in a Dodge Caliber. Once loaded, we were off to find our way to the hotel. Thank goodness for GPS on the iPhone!!! The roads in this area are quite unique and interesting to navigate, but I think I'm getting the hang of it. And the biggest surprise? This southern gal really likes it up here! The little towns are quaint, and the houses are cute. The cultural diversity intrigues me. The diversity is one thing I miss living in Texas.


Wade and I are in the hotel relaxing for a bit before we go back to the clinic for his second session today. I'll be taking some video and pictures to post on my next update. But for now, I'll just let you know that this is some amazing stuff!!! Although we've only had three sessions so far, Wade absolutely loves it. When we pull into the parking lot, he starts giggling! At least I know my 3:30 AM wake up was worth it:-)

Wednesday, April 6, 2011

Eyes Wide Open

Do you ever have moments where you meet someone and you just know God put them in your path for a reason? I think it actually happens quite often, but sometimes we don't see it because we're not looking. Thank goodness my eyes were wide open in January when Wade and I were flying home from VA after Christmas.

While waiting in line at airport security in Norfolk, VA, I couldn't help but stare at a guy in a wheelchair who was struggling to put his belt back on after his turn. As Wade's future flying situations flashed through my mind, I made a mental note to never have Wade wear a belt when flying. It's just one more thing to deal with. It just so happened that this guy and his dad were on our same flight, and they sat right in front of us. Once on the plane, we had a brief exchange of how he got down the aisle, but that was it. Once we landed, we rode the elevator down together to baggage claim. Again, no exchange of words. As fate would have it, their ride was parked next to our van in the parking garage. As we were loading Wade in, the dad (Phil) came up and asked if Wade had cerebral palsy. He proceeded to tell us that his son (Adam) had just undergone some "magnetic treatment" in VA Beach, and he thought it might be something we'd be interested in.

Long story short, Phil directed us to a facility where his brother (Dr. John Williamson) is a doctor. Come to find out, Adam had suffered a spinal cord injury and was a quadriplegic...four years ago!!! As of today, Adam can wheel his own manual wheelchair, drive his own truck, feed himself, take care of himself, etc. Absolutely amazing!!! While I think there is a fine line in trying to "fix" Wade versus improving his functionality, I thought we should give it a shot. After a little research and conversations with the doctor, we set up an appointment and booked our flights.

Wade and I stayed at AMRI of Virginia for two weeks. In order to get the best results, Wade had to stay under the strong magnetic field for 200 hours. It was a lot easier to log hours than I anticipated. The majority of the hours added up overnight, then we got a few hours in during the day while napping or just watching TV. Thank goodness Wade loves TV and can lay in the same area without wanting to move too much! I was also able to stay up on the bed with him if he wanted me to. During the day, I would sometimes nap with him or read while he was sleeping. At night, I typically slept on the very comfy day bed! Once Wade's asleep, he stays in one place, so I wasn't worried about him rolling off.


Magnetic Molecular Energizer treatments are still experimental, therefore not FDA approved. Which of course means insurance does not cover! However, I wholeheartedly believe it is worth every penny! In layman's terms, the theory behind the treatments (with neurological issues) is that the magnets stimulate immature stem cells to actually fix damaged nerve endings (which science says can't happen) or at least cause the brain to form new routes. There is no way to actually prove what is happening, but quite honestly, I don't really care. All I know is that Wade is able to do things he wasn't able to do a month ago!

When we arrived, we were told that we would probably notice some slight changes around 100-140 hours under the magnet. I have to say, once we hit 100, I started to have a little doubt. I wasn't really noticing anything, and I was hoping we weren't wasting our time and money. However, between 140 and 150 hours, things started changing. The first major accomplishment was when Wade picked up a soda cup between his fists, lifted it off his tray, and got the straw directly in his mouth! It caught me by complete surprise. I just set the cup down on his tray to walk off and do something. I knew that it would stay where I placed it because he's never been able to reach anything off that tray. Imagine my surprise when I turned around and saw this!


After that, I started paying a little more attention to his movements. His trunk control was a lot better. He was able to sit on the couch and lean forward and maintain his balance. When he started to fall to the side, he would brace himself with his arm. Before this, he never even attempted to break his fall. He also started bearing weight when I attempted to have him stand. Prior to the treatment, his knees would always buckle beneath him. He also started having more mouth control, moving food around better when attempting to chew, and also a lot more vocalization. His neck control improved, as did his total body alignment. At first, I really thought I was imagining the results. But, there was also another patient at the facility, and she and her mom reveled in the changes. My parents live in the area, so they were able to come over and visit throughout the two weeks. They too started seeing the changes.


The biggest confirmation that the treatment worked was when we went to therapy when we got back in town. PT, OT, and speech all commented on the changes. I didn't tell them what I noticed. I let them work with him and had them tell me the changes they saw. Thank goodness their reaction was positive. I was afraid of being the crazy mom who had her son sleep under magnets!

The great thing about the treatment is that it is permanent. Since it "fixes" or "reroutes", it is not temporary. In fact, we should see continued improvement over the coming months. Wade had botox treatments about a week and a half before we went to VA. Had I thought more about it, I would've canceled the appointment. I'm hoping that when the botox wears off, we'll see even more movement because the muscles that have been "frozen" will have the ability to work differently now. Also, I think there is muscle activity that has been "triggered" but Wade has to learn how to use. Those leg muscles that he's now bearing weight on haven't worked in a long time! He's going to have to build up the strength in them before we see full results.

Below is a picture of Wade standing completely upright in the KidWalk. In the past, in order for his to have that upright trunk control, he would need to have his Benik vest on. This picture is of him holding himself up on his own! No vest needed!!! His little "girlfriend" Mallie loves helping him! The bottom picture is of her feeding him a marshmallow!


If we see continued results, we'll probably go back for another round in about six months. If anyone has any questions, feel free to contact me. I'd love to help out in any way I can. I can't speak for any of the other facilities, but I absolutely loved the one in VA Beach. In fact, I didn't want to come home! It was such a nice "vacation" not having to worry about school and therapy and doctor appointments. Not to mention house cleaning and cooking and errands!