When I woke up this morning I never imagined how wonderful this day would be. I'm loving our Chicago mornings because I can relax and enjoy breakfast, tea and a little reading before we start our appointments.
This morning we had a great appointment with one of our Neuro-muscular re-education therapists and then we had lunch at a new place called Cluckers, I thought my salad was wonderful but Eli didn't care for the chicken strips. I'm hoping he will give it another try though because it was delicious. This afternoon we drove to Naperville to see our Child Psychiatrist. I was a little worried about how it would go because Dr. Norman asked me to bring some different foods for Eli to try. Usually he just talks to Eli, but this time he would see the real fear Eli has towards food and I was worried that would ruin the relationship he has built with Eli.
They started out talking about what Eli has been eating and Eli was very excited to share about his cookie muffins that he started eating that have oatmeal and apples in them. Dr. Norman was happy to hear about his progress. Then he pulled out the snacks and decided to have Eli try a banana. It was rough going, as Eli got very nervous and didn't want to try it, they talked about it and then Dr. Norman put a small slice between two pieces of cookie and...ELI ATE THE BANANA!!!!!!! He ate 2 cookie banana sandwiches about the size of a half dollar. I cried while watching him do it, I was so proud of him for conquering his fear.
As we were wrapping up and making the next appointment, I asked him how much we owed and he said he is going to treat Eli Pro bono. I stood in his office and cried and thanked him. I felt silly for crying, but this such a huge blessing. It's amazing how God is opening doors and leading us on this journey. I know we are on the right path of healing for Eli and we will make it to the finish line! I can't wait to see the day Eli eats fruits and vegetables without hesitation.
Thank you for your prayers, you prayer warriors are awesome!!! Please keep praying for the funding to come through, I'm not sure when we will hear anything so please keep praying, God is listening and answering!!! Praise GOD from whom all blessing flow!
Tuesday, March 25, 2014
Monday, March 24, 2014
Possible funding...Prayer Warriors needed!
My last post was about me letting our therapist and doctors know our financial situation. Well, I'm happy to report that they are working with us to get the most for our money. Some have lowered their hourly price and others are reducing sessions, but adding more homework. All of which we are thrilled with! They have all said they want to see Eli get as much as we can give him.
This afternoon I received an email from Abbie Nateshon, she is leading us to all these wonderful therapies and has been our source of information about Eli's disorder. She is contacting a national organization, initially based at the University of Chicago, that funds brain research to see if they will fund Eli's therapy! WOW, what a huge blessing this would be for us and especially for Eli. This is where all you wonderful friends and family come in, we need your prayers for this to come to fruition.
We are wrapping up our Lilla Rose fundraiser this weekend and I have to give a big thank you to all you who have been praying for it and for those who made purchases. With all the sales so far we will be earning 40%! That is amazing!!! We also had a few private donations come in during our open house last Saturday, all of them brought tears to my eyes, we are so blessed to have all of you in our lives.
Please keep PRAYING!!! God is listening....
This afternoon I received an email from Abbie Nateshon, she is leading us to all these wonderful therapies and has been our source of information about Eli's disorder. She is contacting a national organization, initially based at the University of Chicago, that funds brain research to see if they will fund Eli's therapy! WOW, what a huge blessing this would be for us and especially for Eli. This is where all you wonderful friends and family come in, we need your prayers for this to come to fruition.
We are wrapping up our Lilla Rose fundraiser this weekend and I have to give a big thank you to all you who have been praying for it and for those who made purchases. With all the sales so far we will be earning 40%! That is amazing!!! We also had a few private donations come in during our open house last Saturday, all of them brought tears to my eyes, we are so blessed to have all of you in our lives.
Please keep PRAYING!!! God is listening....
Thursday, March 20, 2014
Yesterday was rough...but God is blessing us!
I've been working on our scheduled trips to Chicago for Eli's therapy and realized that when we add our new doctor into the mix our loan and donations are going to be gone very quickly. This set a streak of fear in me and I was in tears most of the day. I decided I had to explain to the doctor that financially we could not afford to do all the appointments she was recommending for Eli. I felt horrible as a mother like I was putting money before my son. How could I say we can't get you the therapy you need because we can't afford it? My son is much more important than money, but as I typed the email to the doctor I felt like I was saying the opposite. There isn't anything worse then feeling like a failure as a mother.
Thank goodness for God's Words of truth! "For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future. Then you will call upon me and come and pray to me, and I will listen to you. You will seek me and find me when you seek me with all your heart." Jeremiah 29:11-13 I was reminded of this verse and just cried and prayed.
In the email to the doctor I explained that we live on one income and that 1 session a day for 5 days at $300 per hour was not going to be feasible for us. At least not with see the other therapist as well. That all together would have come to $2500 for 1 week. I felt the need to just lay our financials out there for her to see and prayed she would understand. I know that her therapy is worth every penny, but that didn't change the fact that we just couldn't do it. About 30 minutes after sending that email, she replied and wanted to know what our budget was and she would work something out for us. WOW! Thank you God!! We are still in the process of working out these details but I feel so much better about it.
All this talk about money lead Paul and I to thinking about how we need to handle the other therapies as well. We also received an email from a friend asking about why we were raising so much money. That is addressed in the previous post. We sat on the couch and talked and cried and we realized that we are seeing more changes in Eli than we had in 6 years of feeding therapy. We can't stop this treatment, it's working when nothing else did. But how do we find the money to pay for it? Paul formulated an amazing response to his friend and we posted it on Gofundme and here. Then we decided it needed to go to our therapists and doctors too. I created an email this morning asking them to come up with a plan that will get Eli what he needs for the money that we currently have on hand. Please understand that these doctors and therapists all work independently of each other yet they do all know each other. This request will require a lot of coordination for them so my request is huge. Before I sent the email I laid my hands on the computer screen and prayed for it to be received well and for the best outcome to arise from it. I said, "God this is all in your hands and I pray you will continue to open these doors and make a way for this to continue." and then I pressed Send.
I haven't heard back from anyone yet, but I know I will once they have had time to talk to each other. I'm letting it go and letting God lead the way. I also know that I'm not a failure as a mom, I'm doing all I can for my child and that is doing my best.
God blessed us again last night as we watched Eli read a book out loud for almost an hour! He has never wanted to read and tells many people that he can't read. He amazed me at some of the words he was reading, this wasn't an easy reader book, this was a chapter book. Watching and listening to him read will be a memory I will treasure forever. I think this was a small glimpse from God of a very bright future for Eli.
Please keep praying for us and Eli. Pray that God will keep opening doors and that the doctors and therapist will be able to work something out with the money we have. Thank You and God bless you and your family!
Thank goodness for God's Words of truth! "For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future. Then you will call upon me and come and pray to me, and I will listen to you. You will seek me and find me when you seek me with all your heart." Jeremiah 29:11-13 I was reminded of this verse and just cried and prayed.
In the email to the doctor I explained that we live on one income and that 1 session a day for 5 days at $300 per hour was not going to be feasible for us. At least not with see the other therapist as well. That all together would have come to $2500 for 1 week. I felt the need to just lay our financials out there for her to see and prayed she would understand. I know that her therapy is worth every penny, but that didn't change the fact that we just couldn't do it. About 30 minutes after sending that email, she replied and wanted to know what our budget was and she would work something out for us. WOW! Thank you God!! We are still in the process of working out these details but I feel so much better about it.
All this talk about money lead Paul and I to thinking about how we need to handle the other therapies as well. We also received an email from a friend asking about why we were raising so much money. That is addressed in the previous post. We sat on the couch and talked and cried and we realized that we are seeing more changes in Eli than we had in 6 years of feeding therapy. We can't stop this treatment, it's working when nothing else did. But how do we find the money to pay for it? Paul formulated an amazing response to his friend and we posted it on Gofundme and here. Then we decided it needed to go to our therapists and doctors too. I created an email this morning asking them to come up with a plan that will get Eli what he needs for the money that we currently have on hand. Please understand that these doctors and therapists all work independently of each other yet they do all know each other. This request will require a lot of coordination for them so my request is huge. Before I sent the email I laid my hands on the computer screen and prayed for it to be received well and for the best outcome to arise from it. I said, "God this is all in your hands and I pray you will continue to open these doors and make a way for this to continue." and then I pressed Send.
I haven't heard back from anyone yet, but I know I will once they have had time to talk to each other. I'm letting it go and letting God lead the way. I also know that I'm not a failure as a mom, I'm doing all I can for my child and that is doing my best.
God blessed us again last night as we watched Eli read a book out loud for almost an hour! He has never wanted to read and tells many people that he can't read. He amazed me at some of the words he was reading, this wasn't an easy reader book, this was a chapter book. Watching and listening to him read will be a memory I will treasure forever. I think this was a small glimpse from God of a very bright future for Eli.
Please keep praying for us and Eli. Pray that God will keep opening doors and that the doctors and therapist will be able to work something out with the money we have. Thank You and God bless you and your family!
Why are we raising money for Eli's Therapy?
A very good friend wrote to me this evening and voiced a concern that I've had since we started the fundraiser for Eli. Writing out my response was very important for me in coming to to terms with my biggest fear - being under the microscope. My hope with this post is to help bring awareness of the financial details behind Eli's therapy.
This is a VERY long post. So here's the TL;DR (too long; didn't read):
Ok... the long version.
I make very good money. I do. My employer has blessed us almost beyond reason. So for us to reach out for financial help was very difficult. I'll admit - as a man I felt a lot of guilt reaching out because I felt I made too much money to be asking for money.
However, I committed to my family a year and half ago that we would reign in our finances. I promised them that we would no longer spend more than we make. So when the cost of this therapy came in... I knew we were in trouble.
I remember the point when Tonya and I realized that we couldn't afford Eli's therapy on our own. We realized we needed help. It was a very difficult decision to open up about it to our friends and family. I even remember warning Tonya that the moment we step out - there would be no coming back - and we'd be under the microscope. However, it has offered us an opportunity to get the word out there about what Eli's going through and what's being done to help people with the same condition.
One of the biggest roadblocks we're facing is the fact that we're dealing with a neurological problem that has been labeled as "picky eating" by the mainstream medical community. Regular practitioners (like our original pediatrician) just put us in standard "feeding therapy" and told us that was all that could be done. Because of the pervasiveness of that mindset, our insurance has done very little to help cover the costs that we're incurring.
Bottom line, we've sought the help of specialized therapists in a very narrow field of study. As professionals, they have a very high hourly rate. To be fair, they're not much higher than a standard medical doctor - ranging from $135 to $340 per hour. However, when insurance says the rate should be about 20% of what we paid and then will only cover about 20% of that amount... we're getting about 5-10% back on what we pay to the therapists.
It is difficult opening up to the financial side of this. However, I believe it is a necessity. I'll be honest. I make good money. Stupid money, really, for what I do (I draw boxes and lines on a whiteboard). But even with that, we're still facing a solution to a problem that's costing more than I make.
So here's the situation we're in:
We see a couple of child psychologists. Their rates vary from $150-$340/hr. We don't see them often, but when we do - the bill is hefty. We've been blessed, though, because they have extended us a lot of grace regarding the bill. They recognize the situation that Eli is in - and they are more concerned with seeing him improve than in getting paid. Still - this is their livelihood and I want to make sure that they are adequately compensated for their work.
The main therapy that we're getting right now is a long term investment. It is a type of movement therapy - and I won't get into the details here. But it involves many trips to Chicago and many sessions when we're there. At $135/hr across 8-10 sessions, the average cost for those sessions have been running an average of $1200/wk (with 1-2 weeks between sessions).
On top of that therapy, we're now also seeing a neurologist that specializes in conditions similar to Eli's. Her rate is $300/hr. Just a few sessions with her shot our costs through the roof. She came back with a recommendation that would have cost an additional $1500/wk. We're working on negotiating that right now.
Then there's the costs of traveling. At first, we were staying in hotels and eating out. That alone ran us close $600/wk (not including gas). We've been blessed to have family in the Chicago area who is letting Tonya and Eli stay in their home during therapy sessions. Tonya is also taking more food with her to cut down on the food bill. It still costs close to $300 for miscellaneous items, gas, even tires (we've had to replace all 4 since this adventure started), etc.
All in all, I projected that the cost of the therapy for this year alone would run about $20,000. And that was before the neurologist was factored in.
So far, we've raised $2700 on GoFundMe. That is a huge blessing and - money aside - the prayers and awareness of what Eli is going through has been more important than anything else. But as you can see - that amount covers about 2 weeks of therapy.
And of course - as all this was playing out - our furnace went out. As a result, we had to make the decision get a loan. It was tough because I was wanting to get through this without adding to our existing debt. But the need for a furnace and the hope of this therapy was too much to pass up (plus, we got a great deal on the loan). It was actually an extension of an existing loan. After the furnace, we were left with about $12,000. That pool of money is now down to around $7,000 and we still have the GoFundMe money available.
After updating my projections, we're going to be tapped out around June. I do have one more bonus coming from work and I think that will float us a bit further - maybe through August.
We dropped our cable and have been considering the phone (though I'm hoping we can consolidate utilities to keep the phone). I can't cut much more without turning off something critical. We have our piano on the market and I'll probably be selling my guitars and other studio equipment before this is all over (if it's ever really "over").
I've put my hobbies pretty well on hold to save money as well. Our vacations are also on hold until we get through this for both financial and timing reasons. I'm praying like crazy that our vehicles (both paid off - woot!) will hold up because there's zero margin for a car payment right now.
We're doing what we can to cover this on our own. But the reality is - there will come a point where we have to decide - do we go further in debt? Or do we say we can do no more?
This had Tonya in tears today (ok - me too).
Eli saw her in tears. He sat down and asked her, "Mom, what's the matter?" She didn't want to worry him about it. But he was insistent. "Mom, talk to me."
That kid amazes me.
She was honest. She told him that we're struggling to pay for his therapy. But she assured him that it would be ok. But it was obvious that she was upset.
Eli said, "Mom, I'll try a muffin with apples in it tomorrow."
That's huge. That's bigger than huge. That's huge-tastic.
Is this therapy worth it? Yes.
In January - we had a 9 yr old that couldn't articulate his worries and fears. He couldn't even read. He couldn't think about food or school without getting nauseous.
Today, he committed to trying a food that has scared him - LITERALLY half to death. Tonight, he sat down and read a book aloud for over an hour!! I'm seeing change in Eli. This therapy is working.
I look back at what we've gone through. I look at what we're about to step into. God is providing. God is opening doors. I know that at the end of myself - when all the money is gone and I wonder what to do next - he will provide for us. It's been a lesson for myself in humility, patience and trust. It's hard, but I'm growing and learning things about myself and God's love through what Eli is going through.
We have other opportunities coming from this as well that could use prayer. An independent writer has taken an interest in our story. We're hoping that through his work of writing our story as well as help from our primary therapist, we can get Eli's story out there. This is a bigger problem than anyone ever imagined. People are coming out of the woodwork - young AND old - with the same condition saying, "Thank you for giving us a voice!" I believe that what's coming out of this is bigger than us - and that's exciting.
As I wrote this message to my friend, I was pretty much in tears. My biggest fear as a father and husband is that we hit a point that I can't provide for my family. I've lost a lot of sleep worrying about how I'm going to get my little boy the help he needs. But God has reminded me that I'm not in this alone. He's provided for us - through friends, family, and in ways that I never could have imagined. And he will continue to do so.
Thanks,
Paul Kimbrel
This is a VERY long post. So here's the TL;DR (too long; didn't read):
- I make good money - but we made bad decisions in the past and have a lot of debt
- Tonya and I committed to getting our family out of debt
- The cost of Eli's therapy and ancillary costs is ranging from $1600-1800 a week (at an average of 2 weeks per month).
- We have additional therapy that could add another $1500/wk
- We're doing everything we can to cover this on our own (including getting a loan)
- The therapy is working... we're seeing positive changes in Eli
- Insurance is a joke because the medical community doesn't understand his condition
- Even though money is tight - God is providing
Ok... the long version.
I make very good money. I do. My employer has blessed us almost beyond reason. So for us to reach out for financial help was very difficult. I'll admit - as a man I felt a lot of guilt reaching out because I felt I made too much money to be asking for money.
However, I committed to my family a year and half ago that we would reign in our finances. I promised them that we would no longer spend more than we make. So when the cost of this therapy came in... I knew we were in trouble.
I remember the point when Tonya and I realized that we couldn't afford Eli's therapy on our own. We realized we needed help. It was a very difficult decision to open up about it to our friends and family. I even remember warning Tonya that the moment we step out - there would be no coming back - and we'd be under the microscope. However, it has offered us an opportunity to get the word out there about what Eli's going through and what's being done to help people with the same condition.
One of the biggest roadblocks we're facing is the fact that we're dealing with a neurological problem that has been labeled as "picky eating" by the mainstream medical community. Regular practitioners (like our original pediatrician) just put us in standard "feeding therapy" and told us that was all that could be done. Because of the pervasiveness of that mindset, our insurance has done very little to help cover the costs that we're incurring.
Bottom line, we've sought the help of specialized therapists in a very narrow field of study. As professionals, they have a very high hourly rate. To be fair, they're not much higher than a standard medical doctor - ranging from $135 to $340 per hour. However, when insurance says the rate should be about 20% of what we paid and then will only cover about 20% of that amount... we're getting about 5-10% back on what we pay to the therapists.
It is difficult opening up to the financial side of this. However, I believe it is a necessity. I'll be honest. I make good money. Stupid money, really, for what I do (I draw boxes and lines on a whiteboard). But even with that, we're still facing a solution to a problem that's costing more than I make.
So here's the situation we're in:
We see a couple of child psychologists. Their rates vary from $150-$340/hr. We don't see them often, but when we do - the bill is hefty. We've been blessed, though, because they have extended us a lot of grace regarding the bill. They recognize the situation that Eli is in - and they are more concerned with seeing him improve than in getting paid. Still - this is their livelihood and I want to make sure that they are adequately compensated for their work.
The main therapy that we're getting right now is a long term investment. It is a type of movement therapy - and I won't get into the details here. But it involves many trips to Chicago and many sessions when we're there. At $135/hr across 8-10 sessions, the average cost for those sessions have been running an average of $1200/wk (with 1-2 weeks between sessions).
On top of that therapy, we're now also seeing a neurologist that specializes in conditions similar to Eli's. Her rate is $300/hr. Just a few sessions with her shot our costs through the roof. She came back with a recommendation that would have cost an additional $1500/wk. We're working on negotiating that right now.
Then there's the costs of traveling. At first, we were staying in hotels and eating out. That alone ran us close $600/wk (not including gas). We've been blessed to have family in the Chicago area who is letting Tonya and Eli stay in their home during therapy sessions. Tonya is also taking more food with her to cut down on the food bill. It still costs close to $300 for miscellaneous items, gas, even tires (we've had to replace all 4 since this adventure started), etc.
All in all, I projected that the cost of the therapy for this year alone would run about $20,000. And that was before the neurologist was factored in.
So far, we've raised $2700 on GoFundMe. That is a huge blessing and - money aside - the prayers and awareness of what Eli is going through has been more important than anything else. But as you can see - that amount covers about 2 weeks of therapy.
And of course - as all this was playing out - our furnace went out. As a result, we had to make the decision get a loan. It was tough because I was wanting to get through this without adding to our existing debt. But the need for a furnace and the hope of this therapy was too much to pass up (plus, we got a great deal on the loan). It was actually an extension of an existing loan. After the furnace, we were left with about $12,000. That pool of money is now down to around $7,000 and we still have the GoFundMe money available.
After updating my projections, we're going to be tapped out around June. I do have one more bonus coming from work and I think that will float us a bit further - maybe through August.
We dropped our cable and have been considering the phone (though I'm hoping we can consolidate utilities to keep the phone). I can't cut much more without turning off something critical. We have our piano on the market and I'll probably be selling my guitars and other studio equipment before this is all over (if it's ever really "over").
I've put my hobbies pretty well on hold to save money as well. Our vacations are also on hold until we get through this for both financial and timing reasons. I'm praying like crazy that our vehicles (both paid off - woot!) will hold up because there's zero margin for a car payment right now.
We're doing what we can to cover this on our own. But the reality is - there will come a point where we have to decide - do we go further in debt? Or do we say we can do no more?
This had Tonya in tears today (ok - me too).
Eli saw her in tears. He sat down and asked her, "Mom, what's the matter?" She didn't want to worry him about it. But he was insistent. "Mom, talk to me."
That kid amazes me.
She was honest. She told him that we're struggling to pay for his therapy. But she assured him that it would be ok. But it was obvious that she was upset.
Eli said, "Mom, I'll try a muffin with apples in it tomorrow."
That's huge. That's bigger than huge. That's huge-tastic.
Is this therapy worth it? Yes.
In January - we had a 9 yr old that couldn't articulate his worries and fears. He couldn't even read. He couldn't think about food or school without getting nauseous.
Today, he committed to trying a food that has scared him - LITERALLY half to death. Tonight, he sat down and read a book aloud for over an hour!! I'm seeing change in Eli. This therapy is working.
I look back at what we've gone through. I look at what we're about to step into. God is providing. God is opening doors. I know that at the end of myself - when all the money is gone and I wonder what to do next - he will provide for us. It's been a lesson for myself in humility, patience and trust. It's hard, but I'm growing and learning things about myself and God's love through what Eli is going through.
We have other opportunities coming from this as well that could use prayer. An independent writer has taken an interest in our story. We're hoping that through his work of writing our story as well as help from our primary therapist, we can get Eli's story out there. This is a bigger problem than anyone ever imagined. People are coming out of the woodwork - young AND old - with the same condition saying, "Thank you for giving us a voice!" I believe that what's coming out of this is bigger than us - and that's exciting.
As I wrote this message to my friend, I was pretty much in tears. My biggest fear as a father and husband is that we hit a point that I can't provide for my family. I've lost a lot of sleep worrying about how I'm going to get my little boy the help he needs. But God has reminded me that I'm not in this alone. He's provided for us - through friends, family, and in ways that I never could have imagined. And he will continue to do so.
Thanks,
Paul Kimbrel
Thursday, March 6, 2014
Eli's Extreme Food Neophobia
Eli has an eating disorder known as Extreme Food Neophobia. Basically, he is afraid of food. He believes without any doubt that new foods will kill him.
Eli has struggled with eating from the time he was born and once he started on mashed foods he began choking. This choking lead to his fear and the belief that food would kill him. Over the years he has become afraid of more and more food. Currently, his diet consists of pizza, french fries, chicken strips and chocolate chip cookies. Eli attended traditional feeding therapy at Easter Seals for 6 years and unfortunately nothing helped.
Today we are at a point where his health is beginning to be affected. He has Asthma, he gets sick very easily, and his teeth are coming in without any enamel which makes getting cavities very easy. His brain development has also suffered as he has dyslexia and his peripheral vision is off balance requiring special glasses.
We are recently started a few new therapies that are very hopeful. Eli is seeing a psychotherapist, a psychiatrist, an Anat Baniel method therapist for Neuro-Muscular Re-education, an eye specialist that works specifically on the mind-eye connection and a neurologist. The best part about all these different doctors ans therapists are that they all communicate with each other! Every time we go in to see one of they they will mention that they just talked one another. They are all very passionate about what they do and helping Eli. These different therapies have been around for a while, but putting them together to work with a child like Eli is something new. This blog will serve as a journal and hopefully a source of information for other parents with children like Eli.
Eli has struggled with eating from the time he was born and once he started on mashed foods he began choking. This choking lead to his fear and the belief that food would kill him. Over the years he has become afraid of more and more food. Currently, his diet consists of pizza, french fries, chicken strips and chocolate chip cookies. Eli attended traditional feeding therapy at Easter Seals for 6 years and unfortunately nothing helped.
Today we are at a point where his health is beginning to be affected. He has Asthma, he gets sick very easily, and his teeth are coming in without any enamel which makes getting cavities very easy. His brain development has also suffered as he has dyslexia and his peripheral vision is off balance requiring special glasses.
We are recently started a few new therapies that are very hopeful. Eli is seeing a psychotherapist, a psychiatrist, an Anat Baniel method therapist for Neuro-Muscular Re-education, an eye specialist that works specifically on the mind-eye connection and a neurologist. The best part about all these different doctors ans therapists are that they all communicate with each other! Every time we go in to see one of they they will mention that they just talked one another. They are all very passionate about what they do and helping Eli. These different therapies have been around for a while, but putting them together to work with a child like Eli is something new. This blog will serve as a journal and hopefully a source of information for other parents with children like Eli.
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