Masgutova Therapy! I'm learning a lot about this reflex therapy. We have met with the therapist 3 times now and this last time we had more time together and were able to sit down and talk about the focus and direction we need to go. Since Eli's food phobia is neurologically based he has many other fears as well. His central nervous system lives at a constant high, which is the biggest part of the problem. Our focus right now is to get his central nervous system settled down and back to normal. This will take time. His brain is used to functioning at this level and we have to re-train it through therapy/massage/exercise. Think of it like this... We've all slept wrong and hurt our neck right? Well we can go get a massage and the muscles loosen up and begin to feel better, but then they forget about that massage and go back to being tight again. It takes a while to work through it and feel better. Well, Eli's brain has been like a tight muscle for his whole life so it's going to take a while to convince it that it can relax. We will be meeting with our therapist in Joliet every two weeks and in between appointments Paul and I will be doing the therapy daily with Eli.
I've been watching webinars with the creator of this therapy Svetlana Masgutova. They are providing these webinars for FREE every two weeks for parents to help them understand the therapy better. It's such a blessing! I'm learning a lot about the brain, however this last one was a lot to take in. Here is a link if you'd like to learn more about this therapy. Masgutova Therapy I have so much to learn.
The other new thing we are trying is Essential Oils. This was recommended by our therapist. This is also something I have been looking into for a while, we have a few oils that we have used for years, but for something more than headaches and achy muscles I needed to learn more. We invested a little into Young Living oils and I have a great book that I'm learning from. The best part about it is that the boys are now asking for certain oils either in the diffuser or directly on their skin. They are recognizing what they like and what makes them feel good. I love it too, it has certainly lifted the mood at times.
Eli is still struggling with trying foods. He knows that the foods will not hurt him, but its still very difficult for him to not be afraid of trying something. He did just try some popcorn shrimp the other day. In his words..."My mouth likes it, but I still can't eat it." He's had a lot of tears the last few weeks when it comes to new food. He gets frustrated because he doesn't seem to understand why he can't eat the food either. He will get angry and cry and say "I don't know why I can't eat this!" It breaks my heart.
Thank you for supporting us, please keep us in your prayers.
Friday, September 5, 2014
Friday, August 15, 2014
Raw Emotions - Update
Back from Chicago...feeling overwhelmed as usual. We had a very good visit this week, Eli did great with the neurologist and new therapist. We have a lot to do each day. The new therapy requires that I work with him 3 times a day, each session will take 30-60 minutes. At this point I'm trying to figure out how to fit this into our day. We are starting school next week so I have to squeeze it into our school day....this is where my feeling of being overwhelmed is coming from. There is so much to do each day with just Eli that I don't have enough time with my other two, plus trying to cook healthy meals and making Eli's meals at the same time. Ugh...
This post is being written over a few days. I watched a webinar today on the new therapy we are trying called Masgutova, the webinar was with the creator and when I asked her about Eli's condition and if this could really help him she said it would but she would need to talk to me privately because it would take a number of different things to work and we needed more time. She said his disorder is neurological as well as psychological so it would take a while to work and the work will be intense. Again Ugh... Here we stand with answers to help our son and I'm not sure we have the energy nor the resources to do it. Did I mention the creator of this therapy is in Poland? We have a therapist that we meet with in Highland Park, but these trips are taking it out on me and the family, especially my boys that are staying home.
"Successful mothers are not the ones who have never struggled. They are the ones who never give up despite their struggles." ~ Sharon Jaynes. I'm not giving up! I know that God will give me the resources and the energy I need to do this, but my feelings of being overwhelmed sometimes consume me. I hear friends say I'm superwoman, I'm very flattered, but I'm not...I wish I were maybe it would be easier.
A few weeks ago our pastor spoke about how God uses our circumstances to minister to others, I've heard this before but I never thought of it in terms of how Eli will use this to help others. Here is a child with such a deep rooted fear and yet at times I watch him pray in tears begging for God to take his fears away. I've watched his faith grow through this process and I'm so proud of him. He knows when he needs it go to God and he comes to Paul and I asking for us to pray with him when he needs to pray and ask for help. How many nine year olds do that? God has big plans for this boy and I can't wait to watch them unfold. I know God will use all of us to minister to others traveling this same road. Sometimes I just wish it were a shorter road!
Please forgive this raw, all emotions spilled out post. It's just a difficult time for me right now. Here are our prayer requests.
1. That this new therapy would work and that I would find the time to get it in our day.
2. That my anxiety would stay under control.
3. For Eli to be more open to trying new foods. We hit a little road block and trying new things has been difficult.
4. That God would continue to provide for us financially.
5. That God would use this to minister to others and that our hearts and minds will be open to His prompting.
Thanks so much for all your prayers!
This post is being written over a few days. I watched a webinar today on the new therapy we are trying called Masgutova, the webinar was with the creator and when I asked her about Eli's condition and if this could really help him she said it would but she would need to talk to me privately because it would take a number of different things to work and we needed more time. She said his disorder is neurological as well as psychological so it would take a while to work and the work will be intense. Again Ugh... Here we stand with answers to help our son and I'm not sure we have the energy nor the resources to do it. Did I mention the creator of this therapy is in Poland? We have a therapist that we meet with in Highland Park, but these trips are taking it out on me and the family, especially my boys that are staying home.
"Successful mothers are not the ones who have never struggled. They are the ones who never give up despite their struggles." ~ Sharon Jaynes. I'm not giving up! I know that God will give me the resources and the energy I need to do this, but my feelings of being overwhelmed sometimes consume me. I hear friends say I'm superwoman, I'm very flattered, but I'm not...I wish I were maybe it would be easier.
A few weeks ago our pastor spoke about how God uses our circumstances to minister to others, I've heard this before but I never thought of it in terms of how Eli will use this to help others. Here is a child with such a deep rooted fear and yet at times I watch him pray in tears begging for God to take his fears away. I've watched his faith grow through this process and I'm so proud of him. He knows when he needs it go to God and he comes to Paul and I asking for us to pray with him when he needs to pray and ask for help. How many nine year olds do that? God has big plans for this boy and I can't wait to watch them unfold. I know God will use all of us to minister to others traveling this same road. Sometimes I just wish it were a shorter road!
Please forgive this raw, all emotions spilled out post. It's just a difficult time for me right now. Here are our prayer requests.
1. That this new therapy would work and that I would find the time to get it in our day.
2. That my anxiety would stay under control.
3. For Eli to be more open to trying new foods. We hit a little road block and trying new things has been difficult.
4. That God would continue to provide for us financially.
5. That God would use this to minister to others and that our hearts and minds will be open to His prompting.
Thanks so much for all your prayers!
Sunday, July 20, 2014
Some Decisions....Still Praying
Thank you for the prayers! Paul and I talked about things again today and we were able to make some decisions and I'm feeling good about them so I know it's the right thing to do.
We've decided to reduce one therapy while we try out a new one that was recommended. We have already meet this new therapist - her name is Amy Lukos and she does Masgutova. Masgutova Method is a program that focuses on the Neurosensorimotor system. The techniques work on primitive reflexes and primary movements and skills to improve development and learning. Primitive reflexes are automatic movements directed from the brain stem rather than the brain itself. When we met with Amy she evaluated Eli and she was able to tell me things about him that I had not told her yet. It was amazing to see how much she knew about him just by feeling and moving his body. One of the nice things about this therapy is that I can do most of it at home with Eli. We'll only have to meet with Amy once a month for an evaluation and a learning session. This will drastically reduce our therapy cost! Can we all say WOOHOO!!
We have another prayer request. I need to be able to learn all these new things and keep life in balance. The boys and I are starting school soon and our days will be very full. We have many exercises to do as I'm still doing the Feldenkrais exercises, the neuro-therapy puzzles, and we are adding the Masgutova exercises to Eli's day. The therapy work alone will take a good portion of our morning. Morning is the best time for Eli to learn so we have to get math and language arts done in the morning too. I'm praying that I can make it all work, but I'm nervous about how full our days are becoming and how little play time Eli may get. Eli loves to play and it's hard for him to sit and work, so please pray I can keep this fun and entertaining for him.
We still need to make some decisions regarding Eli's medication. We will hopefully be talking with his doctor this week to discuss our options, then we will make a decision. Please pray God will lead us in the right direction.
Thank you for your support and prayers, we really couldn't do this without you!
Thursday, July 17, 2014
Rough Days, Unknowns, Decisions
I know it's been a while since I've posted an update. I feel like we've been in a whirlwind and I'm barely keeping my head above water. We have been working on his exercises, and keeping up with the brain puzzle work the neurologist gave us. I wish I could say he has been trying new foods, but that has been a struggle.
Since we changed medication last month we have seen an increase in anxiety and lack of concentration. This doesn't help Eli when it comes time to try new foods. Also, he has stopped eating pizza rolls and yogurt...At this point I'm banging my head against the wall wondering if any of this is helping. Then I realize we have made some good steps forward. Baby steps, I must remember baby steps. It's so hard to watch him struggle when all I want to do is make him better.
So, what do we do? This treatment plan is brand new for this eating disorder. The treatments themselves have been around for years, but using them to treat this disorder is new. We are breaking ground on this and at times that puts us in a difficult position. We are very hopeful that it will work, but when we have struggles we don't have any direction on what to do next. This is where lots of prayer is needed! We again need to make decisions on medication. Do we change medication again, do we go off the medication and see how the other therapies work without it, or do we give the current medication more time? Please pray that Paul and I will make the right decisions.
Since we changed medication last month we have seen an increase in anxiety and lack of concentration. This doesn't help Eli when it comes time to try new foods. Also, he has stopped eating pizza rolls and yogurt...At this point I'm banging my head against the wall wondering if any of this is helping. Then I realize we have made some good steps forward. Baby steps, I must remember baby steps. It's so hard to watch him struggle when all I want to do is make him better.
So, what do we do? This treatment plan is brand new for this eating disorder. The treatments themselves have been around for years, but using them to treat this disorder is new. We are breaking ground on this and at times that puts us in a difficult position. We are very hopeful that it will work, but when we have struggles we don't have any direction on what to do next. This is where lots of prayer is needed! We again need to make decisions on medication. Do we change medication again, do we go off the medication and see how the other therapies work without it, or do we give the current medication more time? Please pray that Paul and I will make the right decisions.
Monday, June 2, 2014
Coming Along...
Things are moving along for Eli. In the last two weeks Eli has tried pizza rolls, Twizzlers, and an all fruit strawberry Popsicle! Of course we did have some tries that were not successful, we tried an cheese quesadilla that took 17 minutes to get one bite down and no more was tried. He did agree to try it again with some pizza sauce to dip it in which we haven't gotten to, but will try this week.
The pizza rolls were a huge hit. I showed him the bag and explained that they were just like pizza and asked him if he would be willing to try it. He agreed and without too much hesitation he took a bite and fell in love with them. Since then he has eaten them 4 times. It's so great to get another food into his diet. I know it's not a big change from regular pizza, but for Eli it's a huge difference.
Twizzlers! We picked Eli up from Sunday school and he had a Twizzler in his mouth! Talk about being shocked. I asked him about it and he said he was told that it tasted like strawberry so he decided to try it. He held it in his mouth and licked it a lot, but he didn't take a bite. He eventually threw it away. Still it's something new in his mouth and that is a step in the right direction.
All Fruit Strawberry Popsicle, can you believe it? Something with real fruit in it entered his body!!! I'm still in shock. He has eaten Popsicles before, but they were the fake juice Kool-aid type. These were real fruit with bits of strawberry in it. He hesitated a few times with the strawberry but he ate it. He almost finished it, but he gagged on a small piece of strawberry and decided to be done. He did say he would eat it again and I'm praying that he will. This is beyond huge for Eli, he has never had anything even close to a type of fruit or vegetable in his mouth.
We have been home for almost 3 weeks and it has been very nice, but busy. We put on a fund raising garage sale this past weekend and I spent the last two weeks tagging and organizing everything that was donated to us. We were certainly blessed! We were given some wonderful items and we earned enough to pay for one full week of therapy! We still have many items to sell so we will open up the sale again this weekend, after that the remaining items will go to the Home Sweet Home Mission.
This therapy is working. I mentioned a while ago that there is a chance we could get fully funded by a brain research team at the University of Chicago. Well, everything is in place except for one piece, we need a person affiliated with the University to submit the proposal for the research and the grant money. So far we don't have this person however our eating disorder specialist is making calls and knocking on doors as much as she can to get this done for us. Please pray she will find this person soon so we can get the funding we need to help Eli.
We head back to Chicagoland the week of June 9th. Please keep us in your prayers. Thank you!
The pizza rolls were a huge hit. I showed him the bag and explained that they were just like pizza and asked him if he would be willing to try it. He agreed and without too much hesitation he took a bite and fell in love with them. Since then he has eaten them 4 times. It's so great to get another food into his diet. I know it's not a big change from regular pizza, but for Eli it's a huge difference.
Twizzlers! We picked Eli up from Sunday school and he had a Twizzler in his mouth! Talk about being shocked. I asked him about it and he said he was told that it tasted like strawberry so he decided to try it. He held it in his mouth and licked it a lot, but he didn't take a bite. He eventually threw it away. Still it's something new in his mouth and that is a step in the right direction.
All Fruit Strawberry Popsicle, can you believe it? Something with real fruit in it entered his body!!! I'm still in shock. He has eaten Popsicles before, but they were the fake juice Kool-aid type. These were real fruit with bits of strawberry in it. He hesitated a few times with the strawberry but he ate it. He almost finished it, but he gagged on a small piece of strawberry and decided to be done. He did say he would eat it again and I'm praying that he will. This is beyond huge for Eli, he has never had anything even close to a type of fruit or vegetable in his mouth.
We have been home for almost 3 weeks and it has been very nice, but busy. We put on a fund raising garage sale this past weekend and I spent the last two weeks tagging and organizing everything that was donated to us. We were certainly blessed! We were given some wonderful items and we earned enough to pay for one full week of therapy! We still have many items to sell so we will open up the sale again this weekend, after that the remaining items will go to the Home Sweet Home Mission.
This therapy is working. I mentioned a while ago that there is a chance we could get fully funded by a brain research team at the University of Chicago. Well, everything is in place except for one piece, we need a person affiliated with the University to submit the proposal for the research and the grant money. So far we don't have this person however our eating disorder specialist is making calls and knocking on doors as much as she can to get this done for us. Please pray she will find this person soon so we can get the funding we need to help Eli.
We head back to Chicagoland the week of June 9th. Please keep us in your prayers. Thank you!
Wednesday, May 14, 2014
We are in Chicagoland this week. Eli is doing well, the last couple of weeks weren't the best for trying food. For some reason he had no interest and was starting to let his fear take hold again. BUT, yesterday he tried Gogurt (yogurt in a tube) AND Cheese Fries! He didn't care for the gogurt, but he did seem to like the cheese fries. This was colby jack cheese melted on the fries, so it wasn't a sauce. I'm so proud of him. I know how hard it is for him to try new things and he did a great job. The neurologist is doing a study and has Eli wearing different colored glasses on top of his head. It's amazing how this helped. He first used the red glasses when trying the gogurt, and it didn't go so well, but then we switched to an Aqua color and he tried it again and he said it was better. I don't understand how this all works, but I'm thrilled that it does work!!
Please be is prayer with us as we have to make some decisions regarding his medication. The one main side effect is weight gain which has been as issue for Eli. He has put on 19 pounds now since starting the meds and it doesn't seem to be stopping. Eli is getting very self conscious about the way he looks and I hate seeing him worrying about it. We will be talking with the doctor on Thursday, so please pray that we can all agree and decide what would be best for him.
We are still taking donations for the garage sale. I'm hoping we can make a good amount because the money we have for therapy is running out fast. But I know God will continue to open doors and make this happen. Thanks so much for all your prayers and support.
CLAYTON: So Clayton doesn't have a food phobia, but since this goes to a lot of family I thought I'd add an update on him too. Clayton had a concussion last year and after talking with our neurologist about his learning struggles since then she highly encouraged us to bring him in to see her. There are a number of things going on with his eyes and brain that are not working together as they should. He now has glasses and will be seeing Dr. Donalee Markus to work on getting things back to normal. Here is our prayer request. Donalee is a wonderful doctor and has been working with us on payments and discounting her services. We could barely afford Eli's therapy and now we have to add Clayton. She is being very generous, but it's still costing us a lot of money. Please pray the God will continue to open doors for this to work out financially. Thanks so much for all your prayers.
Tuesday, April 15, 2014
Prayers for Eli please.
We need some prayers today. Eli and I are in Chicago for many appointments this week that we really shouldn't miss. Eli woke up with Croup this morning, for most kids it's not too bad, but Eli is a rare one that sometimes requires a hospital visit to get it under control. Croup can last a few days to a week, and typically Eli is close to a week and tends to be worse on the second or third day. So far I've done everything I can to help him and it seems to be working, but we are staying in today and canceling his appointments. Please pray that this is the worst of it and he will be well enough to go to his appointments the rest of this week. If he is still bad tomorrow we will have to cancel the rest of the weeks appointments and head home. We will not be coming back again until mid-May, so we really need to stay this week. Please pray that Eli will get better quickly and we will be able to stay for the rest of our appointments. Thank you!
Tuesday, March 25, 2014
Bananas and Pro bono
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!
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!
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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