We started the day out with an amazing experience. We were asked to bring Silas down for the morning meeting to demonstrate a couple of things for the entire team of core specialists. Dr. Masgutova demonstrated hands grasp reflex with Silas, some breathing stuff and also his new technique! Svetlana named it the "Silas Foot Tendon Guard!" Were going down in history!! Haha...but seriously how amazing is that! That Silas was able to help Svetlana create a new technique! That is what I absolutely love about MNRI...the program is always developing new techniques and new pieces to help each and every child. Thats why this therapy is also so successful, because every one of these kids needs everything from the MNRI program. Just because one child has cerebral palsy and one child had autism doesn't mean they don't need some of the same techniques, they need all of the same techniques, they might need them more or less than some, but everyone gets every single part of the MNRI program here regardless of their diagnosis. Silas did absolutely amazing today. He had so much for tolerance for the sessions and showed less delay in a lot of the techniques they were doing. He seemed to have an overall better acceptance for the therapy today even more so than yesterday. You could tell his body was adjusting and realizing that it needed this work. He did great in tactile, stayed very relaxed and didn't need his ipad. Talked a little and had a great session. His therapists got to try his "Silas Foot Tendon Guard" on him and he responded right away. It is so cool for the therapists to be able to try these new things as well and to start applying them to other kiddos! Silas did awesome again in Archetype with Jean, his home therapist. I spent a lot of the session learning the material so that I make sure I am confident to do it at home with him. Thats the other thing about these conferences that is so great. it is an educational conference, and they teach the parents how to do all the work so that they can create a home program with the kids and carry on at home. That also plays into the money factor as to why it is so expensive. Well because its amazing for one, and two they teach you how to do it! It's just incredible. We received Silas' home program yesterday that was written after he was evaluated. They give you number one and two priorities for home. Things that you need to be doing most frequent and how many days a week to do each one. So right now I am focusing on feeling confident in being able to do Silas' number one's on him at home. I have a great team at home so they can help me as well with number ones and also help with his number twos. Silas was able to take a little cat nap with Dada during lunch to rest up for his remaining four sessions to finish the day. We went down to Re-patterning where he had a great session with Tanya. She pointed out to us that SIlas was not in ATNR as much today. I watched him throughout the day and she was right. He really wasn't in ATNR as much! This is goooooood! We were able to get some great hands supporting done in his session with Tanya. This is to help with balance, if he is sitting up and needs to catch himself if he starts to fall instead of retracting his arms which is what he does currently, it will help with crawling, supporting himself on all fours, and so much more. This is a huge priority for Silas, one of his number one priorities. Silas did so awesome in oral/facial visual/auditory integration...again! He let his therapist get inside his mouth for a good amount of time and she was able to do a lot in there! This will help with suck swallow, gag reflex, and so much more, speech and using his tongue properly. Silas also did great in his neuro-structural and prop/cog programs. He just seems so soooo much more excepting of his programs and the work they are preforming with him. By the end of the day yesterday he was totally beat, so so tired and having mini meltdowns...today so happy still by the end of the day! Let me tell you too, that this work is hard for him, not hard because its hurting him or too much for him, but hard because they are fighting against his brain to integrate his reflexes, and trying to organize all the chaos! It's so important to for him to have this intensive therapy due to his trauma at birth, ever since his birth his body has been in fight or flight and protection. That is why we have to go back to the foundations and work forward with him. I am so proud of Silas for doing all this wonderful work, what a strong boy! Overall, just a great day for SiGuy! We took a nice stroll outside to grab something to eat, and took a nice bath! We do little detox baths for Silas with Epsom Salt to help his body move along with the natural detox he is already getting from the therapy itself. Back in January at our 8day conference he had a really tough detox from the therapy. The work is so intensive it is important to really push fluids kind of like when you get deep tissue massages, very important to make sure they are getting enough water. The other reason that Silas had such a tough detox in January is because for one it was his first intensive conference and two because he was detoxing all of those NASTY seizure meds he had been given for his first two years of life. So it makes sense that this conference would be a little easier for him. And it definitely shows because during his assessment he showed so much less delay. Also...for instance to put it into an easier perspective, each home program is written on one piece of paper, there are two sides to the paper with all the different movements written down, with priority they are, and how many times a week to do them...well last conference he didn't even go onto the backside of the paper (which is more of the advanced movements for when they progress)...this conference we have most of the back checked off to do at home! What a long way he has come! I can't tell you how great it feels to be here, to get praise from Svetlana Masgutova for doing such a great job at home with him (and praise to all that work with him on his MNRi program, Jean Rice, Sarah, Fran his nurse, Steph and Melissa (Hippotherapy) and soon to be Holly! And also to those amazing therapists who have worked with him in between conferences, LOVE you all to death! You guys are family to us!) The overall feel at these conferences is so so so heartwarming. To chat with all the parents here, to give advice to those coming for the first time, to take advice from all the "regulars" and just being around such a healing environment! So here's to tomorrow, another day, Day Three! Cannot wait!!!
2 Comments
Christina
11/8/2017 04:36:44 pm
OMG t hear your struggles makes me feel a little better. I desperate I have a son who is just like silas but has not accomplish nothing like he has. Partly my fault, I feel like I just want to give up not that I don't love my son because he is my world but it seems as if life just s to keep me down. I feel like there's no light at the end of the tunnel and that this s just what God has my life out to be. I'm struggling so bad day that it's hard for me to have faith. Just to hear that people out there have bad days too is comforting. Thanks for sharing
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Thanks so much for sharing, I have taken MNRI courses but never gone to a conference, I work with a much different population than your boy as an OT but am appreciating the wonderful perspective you have as a devoted and motivated parent. Keep up the great work and thank you so much again. -Jasmine OT
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February 2015
AuthoringHey there! I'm Melly Brown. Super Silas' Mama! I have created this blog to keep all of Silas' supporters updated on Silas' MNRI Journey! Categories |