A Little Parental Jealousy is Okay Right?

Like many in the area, I spent most of my Saturday working outside on yard chores and getting the yard ready for the warmer weather. It was an unseasonably warm day and I was able to accomplish almost everything I had planned. During the middle of the day something happened that gave me an unfamiliar "twinge" of parental jealousy and I haven't been able to stop thinking about it.

Abby went to a neighbors house for a little while to ride bikes and play outside with the other little people her age. Elise hung out with me in the front yard and "played" in the Barbie Jeep while I was working in the yard. After a little while Abby was brought back by the neighbor family while they were headed to a birthday party. About five minutes later the mom was walking back up the street toward her house and I yelled out, "now that is my kind of party!". I was thinking she probably forgot something and was headed back in just a moment. But, that wasn't the case. This was a party where you bring your little people and drop them off and come back in a couple of hours when the party is over. At that point I realized, "that is never going to be us".

It is a harsh reality that I generally try often not to think about. I don't blame others for this, nor do I think it is wrong. I understand. Really. But, that doesn't make it any easier. For some reason, people aren't sending party announcements by the dozens that include bringing Elise and dropping her off for parties. Honestly, I am sad for her (and for us as well) that will likely never come to be. It is difficult to think that she isn't able to run around with friends and play in the same way that many others are able. I would love for her to be able to run around at a park, go bowling with friends, go swimming, or just about any other routine childhood activity. But the reality is that she is unable to do all of that in the same way most others are able.

I saw those parents as they enjoyed a couple hours of free time. They didn't do anything terribly romantic or relaxing during their own personal retreat. As a matter of fact, they were working in their yard and cleaning their garage much like I was. But, that wasn't the point. They enjoyed a couple of hours of uninterrupted time to get some things done around their house and their kids were able to play with others and have a great time. Luckily for me, Elise got really tired and went inside for a nap shortly after the party started. That's about the same thing right? At least, that is what I am going to tell myself. 

Pot Party at the Ballard's?

About a month ago I posed a question on Facebook to people regarding their thoughts on medical marijuana. To the best of my recollection, only four people responded. Three didn't see anything wrong with the idea and one left their viewpoint as "I would consider it if there weren't any other options." So I pose to you, what if there aren't any other options? What if there are other options, but this option seems the most attractive? What if everything you learned as a young person could be.............wrong?

This summer we got a phone call from Kelly's mom telling us about a CNN special she had heard about from a neighbor friend. It was about a new strain of medical marijuana being grown in Colorado that was being reported to help kids with severe intractable epilepsy. Or, in layman's term, epilepsy that doesn't respond to medication. This is the form of epilepsy that Elise has. Honestly, in my mind, this was likely just someone's crazy idea of trying to "help" us and Elise. I put it on the back burner to be checked out later. A few weeks later I did some research on CNN.com and wasn't able to find anything. I even contacted the company, but I was only sent a transcript of a different show. As I thought, probably a crazy idea anyway. A couple weeks later, we got an e-mail from one of Elise's doctors saying, "you should check this out". Wait, a medical doctor is actually telling us we should look into "pot" for our child? This is a person whose opinion we highly respected. Maybe this was worth checking out. A little bit of research led us to the Realm of Caring Foundation.

From their website, "The Realm of Caring is a 501c3 non-profit organization that has been formed to provide a better quality of life for residents of Colorado affected by Cancer, MS, HIV/AIDS, Epilepsy, Parkinson’s, among many other debilitating conditions through the use of concentrated medicinal cannabis oil (Realm oil) provided by Indispensary/Stanley family." Families by the dozen are beginning to flock to Colorado in search of a new form of treatment to help their child. Sounds crazy right? 

When I took Elise to her last neurology appointment I asked her doctor about this. Without batting an eyelash he said, "I absolutely believe this is something you should try for Elise." Wow, that's pretty definitive isn't it? Now, in the State of Kansas, or Missouri where we saw her doctor, it is not legal for a doctor to prescribe medical marijuana. So, it's not that easy for those of us that don't live in Colorado. In all honesty, it's not that easy for those that live in Colorado either. He was quick to reinforce that it is very early in any research to tell how effective this truly is. But, there have been some pretty positive responses in some very difficult cases.

Elise has literally taken more than a dozen medicines to "help" her seizures. She went on the ketogenic diet for seizure control. We have flown to two different specialists in other areas of the country only to learn there really isn't much that we can do about her seizures. Parts of her brain appear "dead" on her MRI. They are just gone. Since being diagnosed with seizures in 2010 we have watched her mental capacity slowly and painfully slip away. We have been told to continue doing what we are doing with her as you can never really know when something will occur that could lead to improvement for her. We have never stopped trying to find something to help her, but truly, our options are pretty limited. Elise is not a candidate for brain surgery because her seizure activity is in every quadrant of her brain. She is not really a candidate for the vagal nerve stimulator either for much the same reason. That leaves us with medicine, and to date, that has been ineffective as well.

Kelly and I, some would say, are pretty straight laced people. There were plenty of opportunities to try pot in college, but it never interested me. I believed it was "wrong". Of course, the people I knew using marijuana weren't treating anything other than an insatiable craving for Taco Bell and a desire to enter the world as a productive adult citizen. It's safe to say we aren't really talking about the same thing here. To think about giving this to my child is actually kind of a shock to my system.

Dr. Sanjay Gupta recently said, "I know the discussion around this topic will no doubt get heated. I have felt that heat. But I feel a greater responsibility than ever to make sure those heated discussions are also well-informed by science." As a society we are quick to judge that medical marijuana is really just a way for us the taxpayer to pay for someone else to get high. But I wonder, would you still feel the same if it was you in that situation? Could you look into the eyes of your family member and tell them that their cancer pain really isn't that bad? Could you look into the eyes of your child and tell her you are doing everything you can even if you knew there were other possibilities out there?

Right now the overarching concern for me is that medical marijuana is not legal in the state I live in. I don't consider myself an activist and I am certainly not a rebel. If marijuana of any strand could help Elise I would certainly be able to find some here in my college town right? Without a doubt! But, I would then run the risk of losing my job, therefore my benefits that provide for the care of my child in need, or worse, having her taking away from me by the government for giving my child marijuana. Most days I don't know what to do to help her. I cannot imagine the struggle of someone that would be left to care for her not knowing anything about her and her history. That is not a chance I am interested in taking. 

So for now it's all about education. I want to know everything there is to know about what is being developed. Like all previously approved medications, there is no guarantee something like this would even work for Elise. I'm not about to pack up my family and move to Colorado in hopes that we could be considered to travel down this historic road. Besides, we just hung up the pictures in our house! So for now, it's still safe to eat the brownies in our house, and we haven't begun using a bong to hold our fake flower arrangements. We haven't decided that this is the best thing for Elise and her future either. But, there is more information available every day and I am intrigued by what is coming out.

If this is something that interests you, check out the new CNN special on Tuesday, March 11th at 9:00 p.m. central. It is titled "Weed 2: Cannabis Madness". You can also check out the first CNN special here. As I stated earlier, I am no activist. I don't believe this is right for everyone and I'm still not positive that it is right for us. But, I am working my way through public perception into fact to find a long term solution for my daughter. In the end, whatever that solution is, I want to be able to clearly look into her eyes and I tell her I have done everything in my power to help her be successful in life. Isn't that the same thing that any parent would want?

Another new leaf?

It seems like I have spent the last several years turning over one new leaf after another. That opportunity has come once again. Fortunately, it doesn't mean another move! Especially since we just hung up the pictures in our house. I don't think Kelly would look too favorably on another move right now anyway.

The groundwork was laid for this opportunity more than a year ago. I didn't know what to do with myself professionally. Honestly, sometimes I still don't. One of my thoughts was beginning to work on a PhD program in Hotel and Restaurant Management with an emphasis on event planning. This is what I do for a living now. After finishing my conversation with the department head I asked, "do you ever have opportunities for people to be hired on as an instructor for a course?" After telling me I should have come in a couple of weeks earlier and they would have hired me on the spot, she told me she would keep my information in case something ever came up.

We have spoken a few times over the past year plus as I would see her around campus or at K-State events. Lo and behold, the opportunity presented itself and I happened to be in the front of her mind. Last week I was formally contacted about becoming an instructor for a class that has been going on since January. After some consideration, prayer, and many conversations with Kelly and the department head, I accepted the offer to become an instructor in one course at KSU. I won't be giving up my current job, but rather piling a little more on my daily plate. Crazy huh?

I met with the class for the first time on Monday afternoon. It was a pretty good experience. I do believe I have the heart of a teacher. I miss the opportunity to interact with a younger generation and getting to experience life through their eyes. This class is full of seniors taking their last semester or next to last semester in college. Most of them know what they want to do (sort of) but they are hungry for the tools to get them there.

I won't profess to be an expert. I never did that with my students in my previous teaching life and I don't plan to do that now either. I have a TON of new work that is just beginning and I plan to give them some real life experience by exposing them to my life as a meeting planner and walking them through the process with me. No theories, very few lectures, but hands on experience being immersed in event planning.

I look forward to the challenge. I'm comfortable in my knowledge of the process. I'm comfortable in my ability to relate to the students. However, I'm not comfortable that I am prepared to jam all the information they need into the remaining 10 weeks of class. As one of my mentors once told, "you only have to be one step ahead of the kids". I hope that advice serves me well in this endeavor too!

Recharging the Batteries

It has been a while since I last posted a blog. I missed it, I have tons of ideas of things to write, but I have become REALLY lazy in this area! I'll work on. Recently, Kelly and I were able to get away together and try to "recharge our batteries" a little.

I have been very busy in my work life. Many new projects are in the works and I have been fortunate to be a part of quite a few of them. On top of my regular work load, it has made for a pretty busy time. Strangely, I usually don't mind teetering on the edge of being overwhelmed. I think it helps to keep me focused. A new conference I was assigned met at the beginning of the month in Vancouver, British Columbia. The stars aligned perfectly (almost), and my crazy mother-in-law said, "we'll watch the kids if Kelly wants to go with you." How could we pass that up? So, we packed up for an eight day trip to Canada!

While I wasn't able to go on an eight day "vacation", Kelly certainly was. I'm not too jealous of that. Although maybe a little. We flew out a day before I needed to begin working so that we could do some sight seeing together. The picture to the left was taken in Stanley Park as part of a tour we took before an evening obligation one of our first days. While it was a little chilly, it was much warmer than Kansas, and didn't have any snow. If you have never been, I recommend adding Vancouver, B.C. to your bucket list of places to visit. It is beautiful!

Often times, working a conference consists of being in the "office" before 6:00 a.m. and often not back in your hotel room until about midnight. Fortunately, this conference wasn't like that and it allowed me to have a more "normal" work schedule. I was still out of the room by 6:00 a.m. most days, but I was also finished by 6:00 p.m. as well. This schedule allowed us to have some time walking around the city and at least having dinner together most nights.

Kelly was even adventurous enough to take a three day train trip down to Portland, Oregon to visit an uncle and cousin in the area. She texted several times about the great scenery on the trip, but sadly I don't have any pictures to share of that portion. She enjoyed the side trip and she was able to get away while I worked the most hectic portion of my conference schedule. It allowed me to work long days without feeling obligated to save enough energy to do something later into the evening.

We also were able to stay an extra day and a half after the conference ended to enjoy more time together. We enjoyed the freedom of visiting some places that would just be too difficult for Elise to manuever, and the freedom to come back to the room late and even stay in bed much later than we are able to do at home! That part was a vacation in itself for us both.

I was glad that Kelly was able to join me on the trip. I was really glad that she was able to unplug from life and relax more than she has been able to in many years. It was great to experience a new city together as well. Something tells me my mother-in-law will never make this offer again. But, it was good while it lasted! We sincerely appreciated my brother and sister-in-law stepping in at the last moment to help out, my mother-in-law and father-in-law spending a week at our house, and my sister and nephew for handling the snow removal duties at our house. I hope you enjoy some of the pictures from our trip below.

Ice skating on top of Grouse Mountain

Is this the Royal Canadian Mounted Police?

Kelly by the marina. The mountains in the background were great!

We enjoyed some time outside with the fire department at 2:30 a.m. Everything turned out to be fine.

Several hundred feet off the ground at the Cliff Walk.

Kelly on Capilano Suspension Bridge

She's a natural!

Going on a bear hunt!

The bear and I had the same taste

Ready for a night out. Doesn't she look refreshed?

The Value of Donating Blood

Back in 2009, my then 3 year old daughter Elise, was diagnosed with Leukemia. Cancer treatment in children is very aggressive. After each round of chemotherapy (there were six rounds total) she was hospitalized no less than three weeks while her blood counts were monitored daily in hopes of fighting off infection that could threaten her life. During that three week period (it was often longer than three weeks), Elise received numerous blood and platelet transfusions. There were many things that we kept track of, but the number of transfusions was not one of them. It is safe to say that she easily had dozens of pints of blood and platelets during treatment for cancer. Eventually, she was able to get her cancer into remission where it has stayed ever since. This would not have been possible without the lifesaving blood that came from donors from all over.

Prior to Elise getting sick I was never inclined to donate blood. I did not have a good reason not to donate, I just never really considered doing it. What was the point? I don’t recall ever really knowing anybody that needed blood and my family was relatively healthy. Seeing the amount of cancer patients in the hallways where Elise spent her time made it really obvious to me that there was a huge need. This was only one facility and it only served kids. There were at least a dozen cancer centers in the area that served a wide variety of people. I am positive their needs were the same.

One of the most touching tributes some friends did for our daughter was to contact the American Red Cross and organize a blood drive in her honor. Hundreds of people came and donated blood that day. Whether Elise received any of the blood donated that day didn’t really matter to any of them. She had raised awareness that there was a need and people were glad to help in some way. Although this is our story, you likely know someone that has needed blood. There is no way to plan for that need. Accidents happen, people get diagnosed with life threatening diseases, and unexpected events are prevalent in all of our lives.

Donating blood is one of the great ways you can give to people and it doesn’t cost you anything more than a little bit of your time. They encourage you to eat well, drink lots of fluids, and they even provide snacks. It doesn’t get any better than that! What if donating blood makes you feel a little funny? Just imagine how those people feel that need your donation. I hope you will consider donating blood and donating regularly. You could have an impact on hundreds of people in your lifetime. You will likely impact a family just like mine and I can tell you that they will be thankful!

Searching for Answers in New Places

One of the many joys we get to experience, doing life with Elise, is in the world of tube feeding. Honestly, until she stopped eating several years ago, I didn't even know such a thing existed! What started out as a short term problem during chemotherapy several years ago, has morphed into a life that we never could have imagined. During treatment, Elise just stopped eating. At the time, there was no cause for concern as she was in the middle of active cancer treatment. Cancer patients are not generally known for their healthy appetites.

After finishing treatment, and failing to thrive by consuming enough calories by mouth, we made the decision to have a "G tube" surgically inserted into Elise's belly. This sure was more attractive than the tube dangling from her nose as we experienced for months prior! For the next couple of years, we struggled on with Elise getting 99% of her nutrition through her tube using various prepackaged nutrition formulas. In the beginning we didn't know it, but many of our struggles came from Elise's body rejecting something in the formula. Throwing up (multiple times per day) was a daily part of our life for more than 3 years. It is amazing what you can sit through, talk through, and even eat through when you get used to it! Even 4 year old Abby was skilled at eating with one handing and holding the puke bucket for Elise while she was getting sick. That's a different kind of cute isn't it?

Kelly was actively involved in researching some alternatives to feeding Elise. I wasn't against it, but what we were doing was pretty simple, we knew just how fast we had to be to catch puke across the room, and we were rarely ever caught anywhere without a puke bucket within arms length. Most days, things are hard enough. I didn't want anything that was going to be requiring more work for any of us.

In June we made the decision to transition Elise to a "new" diet that would get her away from formula and back into eating real food. This is known as the "blenderized diet". After only a couple of days we decided not to transition any longer, but to just make the switch immediately. We saw some amazingly positive things right away. We made it a 24 hour period without any vomit! (are you getting sick yet?) They funky dirty kid smell that Elise was always emanating was now gone. Most importantly, she began to sleep! Several years of getting 3-5 hours of sleep per night and waking up multiple times in the night was over just like that! Hallelujah!!!

What we didn't anticipate was a whole new problem that would soon surface. In the scheme of things, this has become more of an annoyance than anything. As long as she is sleeping, not puking, and remaining healthy, I will take annoyance any day! When we would hook up Elise's pump to her and feed her meals we began to notice that her pump was beeping A LOT more frequently than it ever had before. Anytime there is something "wrong" with the pump, it has an alarm that beeps. If there is no flow in to the pump it beeps. No flow out - beeps. No food - beeps (even though the bag is full!). Sometimes in the middle of feeding her it would alarm and say "load set" making it seem as though we never even loaded the food bag at all!

We contacted the company that we get the pump from relatively shortly after the issues began. After trying several trouble shooting tips I was told, "the pump isn't made for a blenderized diet". What!?!?!?! It's not made for food??? It seems the pump, and others like it, are manufactured to only handle formula that has to meet the stringent guidelines of the maker of the pump. Never mind whether it is the best "food" for the person receiving nutrition, as long as it is the consistency needed to please the pump manufacturer.

After a couple of months, Kelly noticed that it seemed like there was a lot more leftover food than there should be once a feed was completed. One evening during dinner, we were at the table for about 30 minutes with the pump working away in silent bliss. Suddenly, the silence was broken by the shrill beeping of the dreaded pump. When I went to reset it, I noticed that I had forgotten to un-clamp the tubing, which meant that Elise had not received any of the food that was supposed to be going through the pump. When I investigated, I noted that it said she had received more than half of the dose that she was supposed to get. There was NO way that could have happened.

That evening I contacted the 24 hour help for the pump manufacturer and I was told to contact my provider to have the pump replaced immediately. A few weeks later I was contacted by an "investigator" from the manufacturer who was gathering information about the malfunction to report to the Food and Drug Administration (FDA). I assured them I wasn't trying to make a federal case out of the issue, but rather trying to see that my daughter is getting the nutrition that she needs. Before hanging up I was reminded, "the pump is not manufactured to handle the blenderized diet". Seems like I had heard that before. It also appears there is no pump manufactured to handle the blenderized diet.

Generally, some of my best ideas come when I am really frustrated and backed into a corner. The excessive beeping was not only annoying, but the malfunctioning pump was also getting in the way of us ensuring that we were providing the proper nutrition to our daughter. One day while reading an announcement at work, it hit me. I am surrounded by some of the best and brightest in college students today, and some amazing faculty that are doing some awesome research that is currently impacting many things in the world and working to make the world a better place for tomorrow. Why can't we be a part of that? I didn't know who to call, but I was hopeful I could find somebody that might be able to make a connection somewhere and help me/us to get our foot in the door.

One day that connection was made to an instructor in the Biological and Agricultural Engineering department. He called me initially to get a little more information about what was going on. I explained what was happening, how we had made it to the point where we were at, and what I hoped to accomplish by having someone research the issue. He seemed interested from the beginning, but assured me he would need some time to think about it from various angles, see what kind of research is currently being done on this issue (if any), and check the interest of his students on a project such as this. I was thrilled within a couple of weeks they had committed to research the problems we were having with Elise's pump and try to help us find a long term solution! As we have learned in the past several months, this is not a unique problem for us. ALL families using the blenderized diet experience the same pump troubles. It is a widespread issue in the feeding tube community.

Class is in session with Professor Kelly

We were honored to host the four students and instructor recently as they came to see the blender in action, the pump in action, meet Elise, and hopefully see the pump act up. Much like taking your car to the mechanic, they got to see everything but the pump acting up. Kelly did a great job doing show and tell and teaching them what our life is like when it comes to feeding Elise. We showed them the mechanics of how the pump work, and they even got to witness me changing Elise's Mic-Key button (that's the name for the tube coming out of her stomach). None of them appeared too green around the gills or too highly disgusted. Not bad for a bunch of engineers!

Will anything come of this research? Who knows. We are just glad to have someone listening to our issues, finding ways to trouble shoot the problems, and hopefully helping us and thousands of others lead a more simple tube feeding life. I am hopeful that, given sufficient time, we can figure out how to have a long term solution. I would be proud that some students from my Alma Mater figured out a way to solve a problem that has been plaguing tube feeders for a while. Most of all, I would be highly pleased that I had the idea and the courage to seek out help in a unique setting. Like many things, we are all about finding answers to our unconventional issues in unconventional places.

Serving the Greater Good

My coworkers and I after our service project.

I was fortunate this past week to be a part of a large group service project. This has not always been a priority for me, but has taken a much greater significance of the past several years. Being the recipient of some of the worlds most kind hearted people "paying it forward" has certainly helped to mold my priorities into what they are today.

I attended a conference in Las Vegas this summer. During this conference, which had about 3,000 in attendance, there was a break in the scheduling and only one session was scheduled. The focus of the session was a large group service project that built hands for those in need in third world countries. All total about 1/3 of meeting attendees, or 1,000 people, attended that session. It was a huge success and the largest project of it's kind for the company that was leading the session. It was great to work with a table full of people that I have never met, and will likely never see again, on a project that will have an impact around the world. There was something about begin surrounded by that many people working to serve something other than themselves that was truly exhilarating.

When I returned from that conference I wondered how I could convince my clients (or sponsors as we call them) to do something similar. The first opportunity I had to suggest this concept was with my coworkers as I assisted in the planning of our division retreat. The planning committee was receptive to the idea, but not everyone was sold on it. I thought back to my time at the summer conference when over 1,000 people attended the service project and was quickly reminded that 2/3 of the people chose not to go to this session. As the leader of the service project reminded us, that 2/3 are not necessarily apathetic, they are "normal". The fact that 1/3 of attendees showed up was awesome and they were thrilled to have that number. For our staff, it wasn't going to be an option, so we needed to provide options that would suit the needs of everyone. We had about 60 people in attendance at our retreat and about 95% of them spent their afternoon working on one of the service projects offered.

In the planning phase, we spent many weeks talking about options and searching for the perfect fit that would allow all of us to participate in the same project. After coming up empty, we eventually narrowed the list down to five options that all employees could choose from. The options were working at the Flinthills Breadbasket, the Community Gardens, Sunset Zoo, UFM, and a card making project to be distributed to multiple groups after they were completed. As expected, there were some that weren't in love with the idea of doing a service project. We all have full plates of work that needs done and deadlines to be met. But, we all met the call of serving the greater good.

The pitchfork crew

 After the projects were finished the whole met together again for an ice cream social to end the day. Many people were exhausted, some like myself were pretty sweaty and stinky, but everyone had a smile on their face at the end of the day. For many, this was one of many times they were spend their time helping others. For others, this may be the only time. In the end, either one is okay with me. I enjoyed getting to see some of my coworkers in a different light and enjoyed the opportunity to do something outside of the norm for my usual business day. I would say it was a successful day no matter what. Hundreds, if not thousands, of people will benefit from the generosity that my coworkers gave on that day. Two short hours of their time will benefit so many. As someone who has been the recipient of the kindness of others, I can assure them that it will not go unnoticed.

A Day in the Life

Occasionally I get an interested friend, coworker, or even family member that wants to know what it is "really" like on an average day in our house. We have honed the fine skill of making the most out of our life and don't spend much time dwelling on how difficult some things truly are. I decided on Saturday that I would try to truly keep track of how our day went and document that for all of those interested. Here is a day in the life of the Tony Ballard family.

I settled in for a good night of sleep on Friday night at midnight. Elise woke me up at 4:02 a.m. making some loud "grunting" sounds. This is how she wakes up every day. There is a small window of time when a decision needs to be made to just let her make noise a little while, or check up on her, get her changed and hope you can get her back to sleep before anything additional needs to be done. Not getting out of bed is really not an option as it generally leads to her having a seizure, falling and hitting her head, and running the risk of injury. I chose to get out of bed.

To my surprise, she had apparently been up a while and had put herself back to bed. (Note: she doesn't put herself back to bed when we are with her. She "plays" like she can't muster the strength to do it.) Her diaper was laying on the floor, weighing in at about 15 pounds, her sheets and pajamas were thoroughly soaked, and she was freezing cold. I made a quick make shift bed on the floor, stripped her down, cleaned her up, and put on new PJ's, stripped down and remade the bed, put her back in bed and drug myself back to bed to go back to sleep! After about 30 minutes of reading and checking Facebook I shut everything off and closed my eyes. About 30 seconds later Elise was back to grunting and awake. So, at 5:10 I crawled back out of bed and headed to Elise's room. I hopped in bed with her and tried to get her to settle back down to go to sleep. I continued this endeavor with relatively little success until about 6:00 a.m. At that point, I got out of bed to get her morning meds and water that she must have before she is able to eat breakfast. I discovered that she never got her Friday bedtime meds. This doesn't happen very often (like 3-4 times per year), but when it does we sure pay for it! As is usually the case, she fell asleep right after I gave her meds and I was finally able to go back to bed. At 6:30 I went back to sleep (this is Saturday and I can sleep in today right?) and was awoken by Abby at 7:30 a.m. She wanted to know if she could watch a movie and wanted to show me the new hair braiding technique she had just learned. Needless to say, I wasn't too interested and I sent her to wake up Kelly to help her out today. Abby was unsuccessful (and gave relatively little effort) at waking Kelly up. So, I got back out of bed, started a movie, poured Abby some cereal and milk, got Elise's food together and started her feeding pump and headed back to bed. Just as my rear hit the bed, the alarm on Elise's feeding pump went off and needed attention. I got back out of bed, restarted her pump and headed back to bed for some more sleep! Unfortunately, sleep never came back. Maybe it was the roughly 4 hours of getting in and out of bed, maybe it was Kelly asking "did you have to get up with Elise?", or maybe it was just that by body was "rested" after 4 hours of sleep. I guess I'll go with the latter. I certainly have to give a disclaimer that there have been MANY nights where Kelly has been out of bed with Elise and I slept through it all as well. It has certainly gone both ways, and actually on Sunday we did basically reverse roles. I guess that is how we make this work!

I finally gave up on trying to go back to sleep and got out of bed at 9:00 a.m. We were headed to KC for the weekend for a family birthday party and we set a goal on Friday night to get out of the house by 11:00 a.m. on Saturday morning. After getting up at 9:00 a.m. I was ready to make some breakfast and chug about a gallon of coffee! I had started the coffee maker during one of my earlier times out of bed and I went straight for the coffee maker after bed. While talking with Abby about what to make for breakfast Kelly decided we should make smoothies! Theoretically a great idea! Do you have any idea how much time it takes to cut stuff up for that if you are not prepared? I set out to cut up a pineapple, several mango's, and get together some other ingredients. Kelly gave Elise a bath and got her ready for the day. By the time the smoothies were prepared and the kitchen was cleaned back up, it was now 10:20 a.m.! I chugged my partial semi-warm smoothie, threw out my cold coffee (I never did have my coffee!), and hustled to start packing. Kelly got together the girls' clothes, I got the suitcase and all the stuff for the dog, and we packed all of our own clothes and personal items. Kelly ran to get a fast shower while I helped Abby get dressed for the day, comb hair, brush teeth, and find some toys for the car ride. I hopped in the shower for a speed wash at 10:50. So much for getting out of the house at 11:00 I guess. The rest of the preparations where uneventful and we actually got the kids, the car, the dog, and ourselves loaded and out of the house by 11:15! I sat in the car initially impressed at how quickly we had made everything happen in the end. Then I realized I had basically been going at it for 7 hours already and we STILL couldn't get out of the house on time!

Our ride to KC was one of the smoothest rides in a long time. No seizures on the car ride, which is very unusual, meant that we didn't have to stop for a puke bucket, a diaper change, or to clean up the car en route to our destination! We arrived at my in-laws house at just about 1:30 p.m. in time to drop off the dog and even have a little down time before needing to head out to Leavenworth for the birthday party. I managed to sneak in a quick 10 minute nap which was the highlight of my day! We had another uneventful car ride to Leavenworth and actually made it to the party about 10 minutes early. This is a record for us nowadays! We were glad to get there a few minutes early as that gave us all a couple of minutes to "Elise proof" the house a little more. Unless you live with Elise every day, there would be no real reason to have to do this to your house. Imagine what you have to do to "baby proof" your house to make it safe for a toddler. This is the same premise for Elise, but she is 7 years old. She is much taller than a toddler, stronger than a toddler and able to move and break more items, and she is prone to either having a seizure and falling or just stumbling and landing on items that are left out. It is standard practice for us to quickly go through several rooms trying to clear them like we are part of the SWAT team.

Elise and Abby were excited to see their cousin Keegan and went straight to his room to play. While Abby and Keegan began getting out toys and playing, Elise crawled up in his bed and laid down after being in the room about 10 seconds. So much for playing I guess! She was content to sit on the bed and mostly just watch the other kids play. We were just happy that she was able to stay safe and no unsuspecting little kids were cracked on the noggin by Elise's helmet! We all moved outside shortly after 3 p.m. for the party and it was a beautiful fall day here in Kansas.

I find that gatherings with other kids are frequently some of the most difficult things for me. It is a good time, but it is really hard to watch how active the other "neuro-typical" kids are, and see how delayed Elise is in all aspects of life. There is nothing that we can do about it, the other parents don't make me/us feel singled out, it is just difficult. There's really no other way to say it. Elise seemed to enjoy her time at the party and she even managed to stay awake the entire afternoon! The party was full of cookies, cake, balloons, water guns, capes and masks (it was a superhero themed party), and presents. A good time was had by all.

After the party we stayed behind to have dinner with Kelly's sister, the birthday boy, and Kelly's brother. While dinner was cooking Kelly asked a question about one of Elise's meds and we realized that it was the only med that we had left at home! Elise "had" to have that medicine. She only takes it at bedtime, did not get it on Friday due to our error, and needed to take it to be able to get sufficient sleep. A quick call to the pharmacy to solve that problem turned into a multi-hour endeavor that didn't solve anything. I learned from the pharmacy that Elise did not have any more refills left on that script. That meant we would have to call the doctor on call to get them to call in a refill order. I called the hospital and was connected to the "triage nurse" who takes down your information so that someone can call you back. After about 20 minutes, a nurse from the hospital calls to ask the exact same questions that I had already answered for the triage nurse. She told me that she would contact the doctor on call and have them call me. She ended the call by reminding me that if this is an emergency I should bring Elise into the ER immediately. Really???? Weren't we just talking? Does a prescription for sleep meds really sound like an emergency here? I assured her we would be fine and I would wait to hear from the doctor. Another 20 minutes later and the doctor called to ask the same questions that I had already answered for the previous 2 nurses. She determined that I was apparently not a raging lunatic and that we weren't trying to put 2 mL's of this drug out onto the street and she agreed to call it in to Walgreen's for us. One of the great things about Walgreen's is that you can generally get 24 hour access and can get the script filled anywhere. Well...........that's not always the case.

After dinner we loaded up our family and the birthday boy for an overnighter. We headed to the pharmacy, which was about 30 minutes out of our way. While driving Kelly had the great idea to see if there was a 24 hour place even closer to her parents house and there was another option that would save us about 15 minutes! We chose that option and went to get the script. Once there we learned that they were out. The tech called the other 24 hour store in the metro area to see if they could fill it for us and have it ready. After an extended wait she came back to tell us that they did not have the medicine either. All that maneuvering and in the end we still came up empty handed. We could have called the doc back and likely gotten it filled at Children's Mercy, but that would have been a couple of more hours at least and then we would have been pushing 11 p.m.! And besides that, the K-State football game was on and I was missing most of the first half! As it turned out, I should have gone to Children's anyways. The game was terrible, and a second night of sleeping without the med was not any better!

We finally got back to the in-laws house, got the kids dressed and ready for bed, and Elise's medicine given at 9:00 p.m. After a long day I fell into a chair and stared blankly at the game for the next hour and a half. I asked myself many times throughout the day, "is this day better or worse than usual?" In the end, I believe neither. It was a "normal" day for us. Somethings were a little better. Elise didn't have as many seizures, wasn't as sleepy, and the car rides were uneventful. Some things were a little worse. Elise hasn't been getting up, to stay, so early in the past several months. We have enjoyed getting to sleep more often until 5:30-6:00 each day.

So the next time we have that frazzled look when you see us at a function, party, meal, etc. just remember, I was out of bed for 7 hours and still couldn't get us out the door on time on this day. You never know how much someone has done before the sun even rises some days. I try not to think about it. That only makes me more tired.

Sometimes just looking at this crazy haired kid make me more tired!

Finding Support in Random Places

One of the many challenges of having a child with special needs is finding families like your own. I was struck by the randomness of this the other day when reading the Facebook feed of the Feeding Tube Awareness group. A parent posted something to the effect of: My child is 3yrs old. He recently had a feeding tube put in and is now being sent to get a iv port implanted into his heart for regular blood infusions every three weeks for the next 10yrs of his life. Are there any other parents that have experienced this? If so, any advice on what to expect.

This is just one example of the random requests that come across this page. This parent obviously has her hands full, and if she is anything like me, she is likely terrified! I know nothing about what she was looking for, so I had nothing to add. To my surprise though, 30 people responded! I was shocked! There were no, "I'm sorry you are experiencing this" posts. The responses came from real people experiencing the exact same thing ranging from dealing with it for just a few months to many years! This mom didn't likely learn that her neighbor was an expert in this area, or someone else in her family had gone through the same thing, but that other people around the country have had the same experience. Just knowing that you are not alone can be empowering in itself.

In our house, we are well aware that there are many others with far more difficult lives than we have. We never set out in search of sympathy. We do, however, frequently set out in search of someone that is experiencing some of the same things that we are. Unfortunately, there is no "awareness group" for people that have had leukemia, contracted a brain infection, acquired an uncontrollable form of epilepsy, needs to wear a helmet all waking hours, has all the skills to eat on her own but can't sustain her life by eating enough orally, etc., etc., etc. So, we tackle that elephant one bite at a time in search of whatever information we can find and whatever connection we can make. One group will have a single person or a small number of people with similarities, and another group will have the same. A lot of time that "support" comes in knowing that others are facing the same struggles. Frequently, others have many of the same difficulties and haven't found any solutions either. But, we have learned that others are out there!

With the HIPPA laws, it is next to impossible to connect to others with similar issues via any medical professionals. The very laws that are set up to protect our privacy also prohibit us from making some valuable connections. There are likely several people in every city that have gone through some of the same experiences, but the only way we would learn that is through some type of awareness group or non-profit organization. I was a "late bloomer" to Facebook as I just didn't see the value in it. At this point in our life, I really enjoy seeing what is going on in the lives of some people that I have known many years, but otherwise wouldn't stay in touch with. But, most of all, I really enjoy the connection to people that I have never met that are traveling down the same rocky road that I am on. I have always been told, "Networking is one of the most valuable things for you." Professionally, maybe this is true. Personally, I have found this to be one of the best tools to help me and others find answers. Who knows, maybe another connection will even come out of this post! That would be yet another random occurrence to add to the list.

Making Memories

Sign posted next to the playground by our campsite.

More than a year ago, after reading a book about camping, Abby told me that she wanted to go camping too. At the time I told her, "I'll see what we can do about that." In the back of my mind, I was really thinking, "there is no way I want any part of dragging Elise out to a campground and having to think about everything that would be involved in ensuring that she could safely "enjoy" this experience." What Abby asked for was in the back of my mind, but I really didn't consider it much at the time. Over the next several months I thought about it many times until coming to the realization that camping, for her, didn't have to include Elise as well. There was nothing wrong with her going camping without Elise. So, I made it my goal to take her camping!

I finally found a time that would work for us. We loaded our van and invited my brother Don to join us at one of the state parks at Tuttle Creek outside of Manhattan. On Friday night, we set up our tent, roasted hot dogs over an open fire, and hit the lake for some fishing time before calling it a night.

Walking to our first fishing spot

Fishing is a big part of many of my childhood memories and something that I really want to pass on to my kids. Like many parents, I often let life get in the way, and we just don't make the time for it that I would like to. It was one of my many goals to rectify that situation during our camping trip.

 Luckily for me, Abby loves to go fishing! She talks nonstop, doesn't sit still for long, and is always messing with her fishing pole. Generally, I don't mind any of it. I'm just glad to be sharing the time with her. In the week before we went camping, I heard many times on the radio, a song by Trace Adkins called "Just Fishin'". You can hear it here. As the song says many times, "she thinks we're just fishin'". I hope that someday she will have great memories of fishing much like I have with my brother and dad.

A rare picture sitting still

Our fishing spot for the first evening wasn't as productive as I had hoped for, but it seemed to please her just fine. It certainly provided Don and I a few opportunities to snap some photos at least. It wasn't too long after we started fishing and Don got his first bite. He was nice enough to convince Abby that he needed some help and got her to reel in his pole. The fruits of her labor was pulling in her first walleye of her young life. I'm not sure if she was smiling bigger or me, but it was pretty cool.

Her first walleye

Four fish later, we called it a night. Before going fishing, Uncle Don bet Abby that he would catch more fish and the loser had to buy ice cream. Not surprisingly, she won that bet (even if two of those fish were on his pole) and we had to stop for ice cream before returning to the campground. Abby spent a long time laying awake in the tent trying to figure out what each little noise was. She can be easily spooked and I wasn't sure how she would handle camping. But, she eventually settled in and got some good sleep. Much to my dismay though, she was bright eyed at 6 am when she wanted breakfast and to go back to fishing! Those were certainly 2 things high on my list for the day!

Caught all by herself!

I was surprised to learn, when I checked in to the campground, that they had a "free day" at the state park on Saturday and had lots of things planned for kids. I had a few things planned myself, and I really didn't want other events getting in our way. It turned out to be a good thing as we were able to supplement some of my plans by adding in some of their planned events. One Saturday, we enjoyed several hours of fishing in the morning followed by a stop at the shooting and archery range. The line turned out to be a bit too long for archery, but Abby really enjoyed learning to shoot a BB gun. There might be a future birthday idea in there!

She's not a bad shot

We followed up our shooting activity with a little time for her to play in the bounce house and caterpillar tunnel that they set up. She enjoyed the time to run and get out some of that pent up energy. Although, she was quickly becoming one tired little girl.

Ready to go swimming

After a short nap, Kelly and Elise joined Abby, Don, and I for some time on the beach. It has been an unseasonably cool summer around here. On Saturday, there was no sign of that unseasonably cool weather. It was HOT! A couple of hours at the beach was just what the doctor ordered. We enjoyed having Elise and Kelly join us. Don and I REALLY enjoyed the prolonged opportunity to stand in the cool water and feel a bit more refreshed. We finished our night off with some great chicken cooked over an open fire and of course we also had smores!

Worn out

Abby was so worn out she asked to go put on her pajamas by 9pm and she was asleep shortly after that time. It was a warm night, but a great night's sleep for everyone and helped us to go home on Sunday a bit more refreshed.

As I have thought back over the weekend, it was everything that I hoped it would be for her and me both. It was great quality and quantity time for both of us. She had my undivided attention and I had hers as well. She got to have some bonding time with her Uncle Don as well which was certainly an added bonus.

In the first picture above is the Kansas Children's Bill of Rights. I took a picture of a sign that was posted right next to the playground inside the campground. I was intrigued by many of the things that were listed and I was glad to see that we were accomplishing so many things on that list. It was great to disconnect from society even for just a little bit and immerse ourselves in our environment.

My ultimate goal of this trip was to spend some great time with Abby. The side benefits would be getting to take her fishing, sleeping under the stars, enjoying a nice time at the beach, and eating food cooked over an open fire. In the end, I wanted to make memories for both her and I. In the words of Trace Adkins, "I guarantee this memory's a biggin, and she thinks we're just fishin'." I look forward to doing this again someday. Abby is already planning our next trip.

For the record, I caught fish too! Abby enjoyed taking this picture.

A Glimpse Into Our Future

The last several years have been full of adjustments. Certainly, the last couple of months have been plenty full of their share of adjustment periods as well. We are in the midst of one of our newest adjustments now with both girls heading off to school in the mornings and Kelly heading off to work at the preschool. We didn't know what to expect, but it certainly hasn't been easy. For the first time in my working life, I am the last one out of the house. That has been quite a bit different in itself.

Abby came home from her first day of preschool with a scrapbook project that needed to be completed. She had a week to get it done and it certainly was nothing unreasonable. It was something that should be fun for her and fun for us. Her job was to select some photos of herself, her friends, her family, etc. to put onto the page to show some of her interests and hobbies. She could also use stickers, draw pictures, or whatever she wanted to communicate who she is. Unfortunately for her, her parents are sort of a disorganized mess and even getting off the ground was a chore. I thought it made the most logical sense for us to work on this right after dinner. We were all at the table already, we had a nice large clear space to put things out and this should be fun right????? Wrong!

To begin with, we have pictures everywhere! Now that we are part of the smart phone and tablet generation, we have things in multiple places and often times have no idea how to find any of it! I had some pictures on my phone and many pictures on Facebook that were not saved to my phone. Kelly had many pictures on her phone, some on Facebook, and even more on the iPad. Of course, we had to run all picture options past Abby. By the time she decided what photo she wanted, we had to go back and find it and usually couldn't remember where we had seen the picture in the first place. Once we found the picture then we had to decide whether to put them all together and have them printed somewhere (there weren't that many pictures) or try to print them on our new printer that only prints when it feels like it.

In the meantime Abby is talking a mile a minute, she is bored, wants to draw something, has bug bites, needs a kleenex, sure is thirsty, look there's a chicken.......Good grief! All the while, Elise is sitting at the table, having seizures, retching, and trying to get out of her chair to walk around. She is "confined" to her chair because her food pump is going but isn't working right. For some reason the pump has decided it doesn't like the new diet she is on and decides to alarm every 15 seconds. For two hours straight! Now, two days in a row! This is no exaggeration. Her 45ish minute feeding took more than 2 hours! Another good grief!!!! By the time we were done, about 8:30, Abby's project was mostly done (we still have another day to work on it), we were 30 minutes past bedtime, Elise's food was STILL not done. I was looking for a "Calgone take me away" moment. Honestly, I would have settled for anything take me away!

As I was sitting with Elise getting her ready for bed I began to wonder, is this what our future holds? Do we really have years of sitting at the table helping Abby with her homework while we have to stop every 15 seconds to deal with some medical issue for Elise? Like everything, I suppose we will get accustomed to it, but I sure don't like it! I don't like that we can't give Abby our undivided attention, I don't like that we can't give Elise our undivided attention, and I really don't like that we can't even give ourselves our undivided attention! But, this too will become "normal" over time.

As I was looking for a book to read with Elise before bed I came across a book that my parents had given our girls a couple of years ago. It is a recorded book that my mom insisted on them having. Her and my dad were not big readers, and I don't know that I ever recall them reading to our kids. But, they now have a recorded book of both of my parents reading this story to them. They will never grow up to know them, but they will at least get the joy of having them read this story to them. As I listened to the book it certainly helped to calm my nerves and I believe that Elise enjoyed it quite a bit as well. I know that my parents would have liked to know that they could help in some small way, and tonight they did just that for me. I just hope the book lasts. We have a lot of years of homework ahead of us!