Baby Steps...teeny tiny baby steps

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.

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!

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!

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.

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!

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.

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!