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.
Sunday, April 13, 2014
Monday, March 10, 2014
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?
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?
Tuesday, March 4, 2014
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!
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, 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 |
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