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OUR MNRI JOURNEY

Silas' MNRI Blog! Follow our healing journey attending Masgutova Family Conferences and how they have changed our lives!

MNRI Orlando (Eight Day) - Day 2

2/5/2015

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Second Day of Therapy

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Our day started out great with a tactile session. He had two therapists working with him, his regular tactile therapists and a therapist in training. We could tell he was a little bit sore today, and we are guessing that it was from his Neurostructural session from the day before because his therapist for that modality does very deep work. He was especially tender in core tendon guard area near his pectorals. They showed us a Babinski point in the foot that could be used for pain troubles. We worked on that to help from some of the pain he was feeling, and we also oiled him up good with his "pain" management oils! Silas was very talkative and present during this session, he was interactive and making great eye contact. He had his hands in midline a lot again during this session. They also worked a lot on his fingers to help wake up the reflexes in his hands to show him he has five different fingers instead of one fisted hand. His left hand opens up really well, but his right hand is delayed.
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Next we had our Evaluation with Svetlana! It was so amazing to watch, I always say she is like some sort of magician to me, it is as if she has a map to their bodies, she knows all the ins and outs of how to work with them, what they need most help with, and what they are dong well with. It is so fun to watch and so interesting to see and hear how much has changed even just since October when we saw her last. I will write a separate blog just on our evaluation, because that in itself is just so much to process! But we will be getting our new home program tomorrow which will be amazing to see! 
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For our Neurostructural session Silas was treated for about 35-40 minutes instead of the full hour due to having his evaluation with Svetlana in place of that session. Elvin our therapist was so kind and worked through our break to give him as much work as he could get into him before it was time to go onto our next session. We did a lot of work on his stomach. Almost the entire session infact...WOW! Just hit me...he usually strongly dislikes his stomach, but he really did spend at least 30 minutes on it, content! He was on his elbows and bearing weight through them. And his head control was also amazing. He gave the best little smiles too, the picture at the top of this blog post was from that session. He was just so content. He did so well tolerating the work even though it was very deep work and he was already sensitive from the day before. I am so proud of him for how well he did in this session. 
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We had re-patterning with our lovely therapist Theresa after our session with Elvin. The polish therapists are so incredibly amazing to work with but they most definitely do not fancy Silas' iPad addiction! Haha! We have been very surprised though with him since he has been here, he hasn't needed it nearly as much as other conferences and he has been very interactive with us! It is something we are constantly working with him on...breaking the addiction (haha) but like anything else, it is a work in progress! We normally fall back into using the iPad during times when Silas gets sick and then it's hard to break him from it. Our session of re-patterning we only used music from the iPad and no visual and hid it so he wouldn't see it but would still sense the comfort of his precious iPad! They didn't even want us using his toys either, but instead face to face interaction, which he surprisingly loved and participated in! I was able to do some hands on technique work in this session and learned how to properly do the leg-cross flexion technique for Silas which is a high priority for him and a tool that will help when he starts crawling. We also worked on his hands supporting technique another high priority for Silas and spinal gallant and perez as well. All of these techniques are key components to the beginning stings of crawling, and so much more!
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Silas was lucky to get some awesome kisses from Mama for entertainment in this session! 
We took a break after re-patterning and had a much needed lunch! We sat with our buddy Ben who we met last year at this conference. He is so cute with Silas. Here they are smiling away! Silas is Mister Serious though! Hha, tired tired boy! 
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We had archetype after lunch. Silas loves his archetype therapist. He is always so good during his session with her and loves the work she does! We worked on the homologus reflexes which are the basic reflexes that infants are born with and are very important for everyday skills such as crawling, scooting, head righting and so much more. Archetype is so important, it is the foundation for all reflexes to build off of. When reflexes within the archetype program are integrated, it creates a foundation for all of the other programs and their reflexes to build from. When you have a solid foundation, the reflex patterns with be more developed and not all over the place. This program has a lot of top priorities within it for Silas' home program. Due to his neurological disorder he never developed the foundations that every typical/healthy infant develops. He did some great work grounding his feet while on his back and pushing off. If you know Silas, you know he LOVES to kick his legs...but he cannot find the ground with his feet flat on the ground. He will hit his heels while kicking but he will never ground himself. We worked a lot of this because this will help him with scooting, and full body awareness also, realizing he has feet at the end of his legs, he has five toes that can be used to grasp, he can use his feet purposefully and find a way to get around, but we just really need to work hard with him to achieve such skills. Archetype is just a very fun program, one of my favorites.
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We went to Oral/Facial Visual/Auditory Program next with Lucy! Silas has such a neat bond with her! They chat up a storm, it is SO fun to watch! I cannot believe, I was able to step aside for once and not have to be entertaining him 24/7 while Lucy was working with him. He is just so much more receptive to the therapy this camp, even more so than DC, and an absolute difference from FL last year! Silas was so chatty during this session, saying "I go" and "Hi" to us. He let Lucy do some awesome work in his mouth and she was also able to work a lot on his swallow reflex. We had asked Dr. Masgutova in our Evaluation why he may be having such a hard time GI wise and throwing up when we pick him up, and she mentioned that his swallow reflex needs a lot of work, she was going to show Lucy some things to do with him specifically for his swallow. 
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With ended the day with our home therapist Steph and he was happy to see a familiar face after such a long day! We did a lot of work with spinning and rolling. Spinning is not what you may think it is for Silas. For Silas spinning is on the ground, and looks like rolling but instead your arms are up straight out above your head. It is a harder one for him due to the tone in his arms, but we were able to spin the length of the mat and he did a wonderful job! We did STNR as well which is a move that is on all fours which will help his hands to open up more and more. All in all an amazing day! I am just so proud of how well he is handling the work this time around. He has so much strength it blows my mind daily! My strong strong hard working guy! 
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Another awesome day in the books! Heres to 6 more days!!! Cannot wait to see what else happens for our smart and strong guy! Heres him and another buddy we are housing with after they rocked out therapy. They were playing action figures (a first for Silas) and he wouldn't let go on the tiny little light saber, haha! 
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MNRI orlando (8 day) - day 1

2/4/2015

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We made it safely to florida! goodbye maine!

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We made it! Here is the main man on the plane ride to Orlando! 
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Silas did SO amazing on the plane ride over! This was the first time we used a seat other than the carseat for him to sit in on the plane. He sat really well in his GoTo seat and his head control surprised me!
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Silas gave us a nice SURPRISE on the plane! Number two, woo hoo! The airline was actually VERY accommodating with letting us change him on the ground instead of the bathroom since he wouldn't fit!

First day of therapy

We had an amazing first day of therapy! Started off with a bang...and by bang I mean majorrrrrr blowout which made us LATE for our first session of the day. Silas loves to keep us on our toes! He was happy as a clam after though and melted right into the table when his therapist laid her hands on him. We love our entire team of therapists this conference! They are all so amazing, as are all MNRI therapists, just so positive and understanding. Our tactile therapist was able to get a lot of great work in despite our set back. Silas didn't need his iPad during the session and just kicked and cooed and smiled, enjoying the touch. It was a great way to start the conference out. 

We had neurostructural second and we had our same therapist as we had in DC. He is an amazing therapist, he does very deep and accurate work with Silas. In this session he was able to tell we have been working with Silas at home. He was able to get a faster response with his core tendon guard and he noticed his overall tone in his body was less. He did a lot of lengthening of his muscles. He works to help get Silas' body back to an anatomically correct position. For instance Silas internally rotates his arms and shoulders, so he uses technique to stretch and lengthen and integrate his reflexes into appropriate positions. His tone is the culprit here...when his spasticity kicks in and he gets excited he always rotates his different body parts to such extreme degrees and if you or I were to do that all the time not only does it hurt and ache but it is just not helpful to him in any way and makes everything that much harder, reaching for toys, bringing his arms to midline, etc. This modality of the MNRI program is one of the hardest for him physically to endure but he did SO amazing working through the deep stretches. He even did great on his stomach which is very rare!! 

We then moved onto repatterning, this is where the therapist works to reorganize the body and to show the body the correct neuro response for the reflex being integrated. This is a very very crucial modality of the MNRI program. Silas loved his therapist, we did a lot of singing and he responded by cooing back at us while we would sing to him. She focused a lot on the hands supporting technique which will help Silas big time with balance and being able to bare weight on all fours, beginning steps for crawling. She did a lot of work also on his spinal gallant and perez (reflexes that run along the spine). 

We then went over to Archetype which was a fun session for us! Silas was tired but still so happy! He responded very well to his therapists work and barely needed entertainment to keep him calm and content! We noticed in this session that he had broken out of his normal ATNR pattern which is one arm bent up at his head and the other arm sticking straight out. This time he was laying with both his arms straight out next to him! It was SO COOL to see his arms out and so relaxed!! We were able to chat with another therapist during this session about things that we struggle with at home, some being how hard it is for him to be in groups and getting so overstimulated. It was a nice change for a therapist to ask us more in depth about our day to day with Silas and things we would like to improve on that are harder for us. 

Silas did a co-treat next of the Oral/Facial Program and Breathing Program. This session was amazing. He was talking almost the entire session, he has an amazing bond with his therapist because this is his third camp with her and he definitely remembers her and has created a bond with her! He handled this session incredibly well!!! I was even able to step away while the therapists treated him, this is a first!!!! Yahoo! Peace of mind for this Mama! He got a lot of work done that helped him to reorganize his breathing. To take deep breaths and breath through his nose and not always his mouth (since he had that little upper respiratory sinus cold he has been very stuffy and they helped him to release some of the sinus pressure). We talked a lot during the session about his sensitivity towards high pitched and loud sudden noises. I had thought of it as something that would need a lot of work, almost like it was a negative thing. I am pleased that his therapist was able to help me to notice that although it does need more integration, that he is no longer in a moro defense, but more so an ATNR defense which means he is turning to where the noise is coming from, where before he was in the moro reflex which meant he was almost in a fright or flight mode. This means he knows where the noise is coming from, but that he is sensitive to the auditory response and going into ATNR. It is one step closer than we were before which is great! Breathing and Oral/Facial program really meshed well together for him today, and he responded so wonderful to both modalities during the session. They even had him mimicking different sounds like "Ahhh" "Eeeee" "Ohhh" and when they would stop he would sign for "More" because he loved it so much! His hands and arms were in midline pretty much the entire session! It was amazing to see! I also asked his therapist during this session why he might be so sensitive to sunlight and not able to tolerate it like his other special needs buddies can. We brainstormed a little bit but then decided we would ask Svetlana about it tomorrow during his evaluation with her. 

To end the day we got to see a familiar face! Our home therapist Steph was doing his Proprioceptive & Cognitive program with him! It was refreshing for him to see her to end his day. She did a lot of great work with him on head righting (keeping his head up while going side to side, and back to front) and also did some great stretching with him. I got to see him in positions I hadn't seen him in before which is always cool! It was just a great way to end the day. It is also so beneficial for Steph to be a therapist treating him on our team because when they meet at the end of the day to go over everything with each other, she can hear what the other therapists say, what are top priorities for him, etc and then carry through back home with him. 

All in all, an amazing first day. Each camp seems to be getting easier for him. The work is now so familiar for him and not foreign, so he is much more tolerant and patient with the therapists while they are working with him. His overall attitude was amazing. He was just happy and you could tell he was in a familiar setting with so much love, support and amazing healing happening around him! We cannot wait to see what tomorrow brings! His tone from the start of the day to the end changed dramatically, which is why I LOVE the work, the results are instant! Time to rest up now, see you all tomorrow! 

We meet at last!

P.S.!! I forgot to mention! We are rooming with another family attending the camp whom we started talking to online when Silas was about six months old (crazy small world connection fro ma childhood friend I grew up with). Juli helped me SO MUCH in the beginning when I knew absolutely nothing about Special Needs Parenting and needed guidance! It is so amazing to finally meet and get the boys together! They have both come leaps and bounds from where they were developmentally and its amazing to see! Now we will be able to watch them change together over this 8 day conference, so heres to new beginnings!! Yahoo!
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    Hey there! I'm Melly Brown. Super Silas' Mama! I have created this blog to keep all of Silas' supporters updated on Silas' MNRI Journey! 

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