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!
Tuesday, March 4, 2014
Tuesday, February 25, 2014
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.
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!
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.
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| Ice skating on top of Grouse Mountain |
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| Is this the Royal Canadian Mounted Police? |
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| Kelly by the marina. The mountains in the background were great! |
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| We enjoyed some time outside with the fire department at 2:30 a.m. Everything turned out to be fine. |
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| Several hundred feet off the ground at the Cliff Walk. |
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| Kelly on Capilano Suspension Bridge |
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| She's a natural! |
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| Going on a bear hunt! |
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| The bear and I had the same taste |
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| Ready for a night out. Doesn't she look refreshed? |
Tuesday, November 19, 2013
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!
Monday, October 28, 2013
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.
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.
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.
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| Class is in session with Professor Kelly |
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.
Monday, October 7, 2013
Serving the Greater Good
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| My coworkers and I after our service project. |
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.
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| The pitchfork crew |
Sunday, September 22, 2013
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.
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! |
Wednesday, September 18, 2013
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.
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.
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