MNRI DC 5 Day - Day 1

Our first day.

A small warning for those about to read...this blog is to help me reflect on our days at MNRI conference, it will be filled with explanations of some things, pictures of Silas at work, reflections and thoughts on his assessment with Dr. Masgutova and shared stories of exciting "inch stones" in Silas' development! This blog will serve as a place for me to look back and compare his progress, to remind me how far he has come. To let me reflect on such an emotional and amazing experience. Keep in mind I am processing all of this information still as there is SO much amazing information to learn, so as I reflect on our days here at conference I am too still trying to learn everything. So don't hold me to it! Haha! Some of this info I write may not be completely accurate but it is my reflection of how I have perceived the information. I write these blogs not only for me but for others looking for that "miracle" therapy for their kids as well. Be it cerebral palsy, autism, gene mutations or disorders, PTSD, undiagnosed, whatever it is, this method could be your miracle therapy. So please, if you take anything from following our journey, share our story with others, because you could be helping someone in a huge way! That is how we got here!

The first day at conference is always very exciting! So many emotions are going through our bodies. It is such an amazing and emotional experience being surrounded by families going through the same struggles as us, being around those who understand and walk in the same shoes for much of our daily life. It's so motivating to see others who are giving their all to get their children to conference, knowing that some of those families are also working day and night to get the fundraising to get their kids here just like we do. Because it is not a choice, we need to get ours kids this therapy. Once you experience what this amazing program has to offer you dedicate everything in you to get them back to conference so that they can receive this life changing therapy and quality of life. A year ago we attended our very first mini clinic. Svetlana assessed Silas and said "I want to see this boy at conference!" I looked her in the eyes and told her "We will be there!" "We will do everything we can to get him there!" To finally see progress in your children after two years of traditional therapy with little results is so refreshing. To know that there is a method out there that could greatly improve your child's quality of life when they were given a diagnosis so scary an discouraging. Like I said, this therapy is not a choice for us, it is a necessity.  

Silas' day started off with neuro-structural reflex integration. This is one of the modalities of the MNRI program that is very important and a high priority for Silas. I won't go too deeply into details of each program because it is very complex, but I will tell you how amazing Silas responds to this work and needs it for motor development and behavioral, emotional and intellectual development. Within this modality there is a lot of lengthening and stretching of the limbs. For kiddos with spastic quad cerebral palsy, they are very tight, and stuck in their bodies because the brain isn't sending the signals to let their limbs relax. Silas' left side shows more protection than his right side. The right side of his body responds faster to the work. Today in his session they were able to get Silas completely stretched out! His arms were above his head! This is huge for Silas. Trying to move Silas' limbs, or for example even trying to dress Silas is tough. His body is so stiff you have to put muscle into getting his body to relax enough to complete daily tasks. So the fact that they were able to get his arms above his head and stretch his body was huge for him. They even had him on his stomach (which he usually hates) with his arms down by his side and were able to apply technique. When he was on his stomach he would pick up his head and move it from left to right when he wanted to readjust, that was very cool to see! He had two therapists working on him at once and although it was very sensitive for him at times he did wonderful. I felt they were able to get a lot done with him during this session! 

Silas had Tactile as his second session of the day. Each session is 50 minutes long and there are six sessions each day. I know what you're thinking...that is a TON of therapy for such a small kid! Well yes it is, and I still feel like it is to an extent. But during our opening ceremony last night Svetlana explained this in such a great way. Yes these kids are being worked on for almost six hours a day. But these children are in fear and protection for 24 hours a day! With their diagnosis comes a lot of stims and habits and struggle. So receiving this six hours of therapy is amazing for their bodies, and this is six hours where their bodies are receiving positive and great work that their brain needs in order to live their daily lives without so much struggle. So yes it is a lot of work for them, but at the same time their bodies accept the therapy because it is what they need. So back to Tactile Integration. This is one of the most relaxing modalities and VERY important for Silas. It awakens the body, and lets him know where his body starts and ends. That he has five fingers on each hand, five toes on each foot, two legs, two arms and so on and so on! A lot of times kiddos with cerebral palsy aren't aware of certain parts of their bodies. For example, you see a lot of kids with cerebral palsy with their hands all clenched up and thumbs tucked in tight...they might think that at the ends of their arms there are only fists. The program helps to "wake up" the body and organize it. Tactile is a very gentle and relaxing program. Silas did great today during his. I even got to experience some on me to understand what techniques work best and how they feel in comparison. It felt so good. It definitely makes me want to work with this method on Silas more than I have been at home knowing just how good it will feel for his tight body. I think I will start to incorporate the tactile program when we apply his essential oil spasticity rub. I think the two will complement each other well. The thing about MNRI is you can apply technique in any position and in any circumstance. I could even do his tactile program while he's taking his bath. I am looking forward to our session again tomorrow with his tactile therapist, I felt a great connection with her and she was so great at explaining everything to Matt and I. Although we have been to conference before there is just so much to learn, new techniques are always being developed and its just good to have a refresher. It definitely gives me the motivation I needed to work harder with his home program.

Silas' third session was with our home therapist Jean who works on him every other week back in Maine. So good to see a familiar face and for Silas to have familiar hands laid on him and working with him. This modality is called Archetype. Archetype helps with telling the body it has a back and a front, two sides, a top and a bottom. The program generally starts at the core of his body and works its way out like a star. This is a pretty complex program which I am still learning, but it's obvious that Silas needs this program to help him with so much. It integrates all reflexes to be able to help with things like gross motor skills, moving limbs individually, eventually walking and organizing the body to be able to achieve these skills. Silas did really well in this session. When he was in the fetal position he was able to push himself out of it which is something he missed out on during his traumatic birth. When kids endure trauma like Silas did they miss out on the initial foundations that their bodies would have experienced during their birth, so it's very important to go back and re-learn these skills. When you skip something as important as that your brain gets disorganized and cannot process things it should have, thats why it's important for instance for kids to go through all stages before learning to walk, not skipping something as important as rolling or crawling. Silas also got into full extension like he had in neurosturctual. This is so good for his body. At the last conference Silas grew half an inch just from these excersizes. It will in turn help him with breathing and range of motion because he won't be so cramped up.

We had a nice lunch break after three hours of therapy and Silas was starting to get tired. He also gets very over stimulated in crowded loud areas, so after we ate we went up to our room and him and Dada took a nice little nap before our next therapy. I definitely notice a huge change in Silas' tolerance for intensive therapy. He is a lot more accepting of the work and doesn't need his ipad as much as he did at the last conference. It is still something I wish we could eliminate permanently but it is a constant work in progress. He is non-verbal...so that definitely makes it harder to understand what he needs when he's screaming...it's so much easier to just hand him his ipad...although we know it's a bad habit. We had Reflex Re-patterning as our next modality. This program is very important as it helps to re-teach areas where his reflexes are confused or mixed up. It helps with supporting yourself with engaging the reflexes to protect yourself. For example if you were sitting cross legged and you started to loose balance, you would put your arm down and your hand on the ground to catch yourself. Silas does the opposite. He tucks his arms in and has no idea how to catch himself from falling. To be able to eventually sit one day he will need these reflexes to be integrated. So its all about going back to the very beginning and re-learning and re-teaching the brain what to do. It is important for so much, for rolling, crawling, sitting, walking, grabbing, head control, neck strength. Silas did great in this session as well, he has worked with this therapist many times before and they definitely have a connection. Plus she just gives off such a calming ora, which is great for Silas. We got Silas up on all fours and did a technique that helps to open his hands. When we did it in January at the FL conference both his hands were in fists. Since we left, his left hand has been so open ever since. So I am hoping to get the same results for his right hand and hopefully start to integrate the reflexes he needs to grab. That way he could self entertain and play with toys (he does now but still doesn't know how to grab onto a toy). 

For his fourth modality we have Oral/Facial and Visual/Auditory Integration. He did so amazing in this session! He was very vocal and very present. This program helps with so much as well, with suck and swallow, speech, face symmetry, TMJ, organizing his audio-visual perception, balance in both sides of the body, and so much more. Silas let his therapist do a lot of inner oral work where she worked inside his mouth. Silas usually fights anything in his mouth, he is defensive to it because he does not eat by mouth, and lost his suck/swallow at six months old. So this program is so important for him and that fact that he let her work like that inside his mouth is so amazing. At one point when she was working with him on the outside of his mouth, working on the deep suck reflex she was singing to him "if you're happy and you know it shout: agggh!" (that is one of his favorite sounds to make)...and right on key he said "agggh" right after we sang that line. We all laughed and clapped for him, that is so amazing and there was no delay in vocalizing back to her what she asked him to say. This program is also a very complex one (well they are all right now for me!) and I still have so much to learn. But we will take whats most important for him and work our way up! 

Next up was Silas' assessment with Svetlana!!! I cannot even explain how amazing his assessment went! She was thrilled with his progress from January until now! Silas showed progress in SO MANY AREAS! I can't explain every little thing because I am still trying to process it all myself! But in a nut shell he showed a lot less delay when she tested certain reflexes. In some areas there was no delay or very little delay. Others still needed work, but overall what an improvement! Silas showed high potential for cognitive ability in the areas of speech and learning. He showed less potential for gross motor, but thats not to say that things will never happen for him, they are just happening slower than his cognitive abilities. Matt and I have always said we will take talking over walking ANYDAY! To be able to communicate with Silas would be a dream come true, if he could talk we could better communicate about his gross motor abilities to get him further along in his program. Silas had a much more prominent and strong hand grasp. When she tested his hand grasp reflex it had come a long way since January where he pretty much had none. His head control coming up from a lying down position was still pretty weak but his head righting was so much better, meaning for example if you were to fall to the right your head would stay upright instead of flopping down to the right onto your shoulder. Svetlana told us she was going to experiment a little with his reflexes in his feet to see what he responds to best (his feet are usually pointed out straight and its a struggle to get them at a 90 degree angle)...she was trying things and all of the sudden found something that worked. She showed us and said this is new! Thank you Silas for helping to create a new technique within the MNRI program! He helped Svetlana create a new technique! WAIT, WHAT! So amazing!!! SO amazing she might even name it after him!! She will be demonstrating this new technique along with his hand grasp tomorrow morning to all the therapists before they start treating so they can apply this technique to their patients! Wow, so blown away! She has magical hands and is such a genius!!! Overall, amazing assessment, we will get our home program before leaving and it will be a lot more in depth work for us to do with him since he has progressed so much! One of the most amazing things she said to Matt and I during Silas' assessment was "thank you for being such dedicated parents." You don't know how amazing that feels for both of us to hear! All our hard work paying off!   

Our last session was Proprioceptive and Cognitive Integration. This program focuses on a lot of gross motor reflex integration...rolling, jumping, balance, and more. I love this modality of the MNRI program. It is so fun to get down with the kids off of the massage table and watch them learn the techniques to roll across the floor and crawl and balance on balls and more. This session for Silas went pretty well...of course it was his sixth session of the day so you can imagine how exhausted he was. But he still did great! We worked with another therapist we had last time who we love, she is so great with him! We love our team of therapists! I cannot wait to see what tomorrow brings!!!! We will soon start to see some amazing changes more than we have already! How encouraging this was for our first day at conference!!! Silas is sleeping soundly and resting up to "wow" all the therapists in the morning with his new technique he helped Svetlana create! We cannot wait to show off our new skills!!! I hope you all enjoyed reading, stay tuned for amazing things to come! We are so truly blessed to be here, and we couldn't have made it here with all of those out there who have contributed to Silas to help us pay for this life changing therapy!!! Thank you all, please continue to share our story with others! See ya tomorrow! Goodnight!