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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 - Days 3&4

1/20/2014

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If you can't fly then run, if you can't run then walk, if you can't walk then crawl, but whatever you do you have to keep moving forward. -Martin Luther King, Jr.
Hey There Everyone!
Sorry we were MIA for a few days, we are so emotionally and physically exhausted here! And on top of that my computer charger broke! No Bueno! So I will catch you guys up with all the progress Silas has made. I have to say he is a completely different kiddo! On Saturday we had our six sessions, and a start to one of our meltdown days. They said in our parent meeting that you should expect to see kids melting down on day three or four. He had meltdowns both days, but still did so amazing. On Sunday Silas did such incredible things. He was chosen by Svetlana for a demonstration in the morning in front of all the core specialists to show them new technique. She found the technique while they were in California last week. It is a technique that helps to open the fisted hands, and keep them from going back into their fists. Silas did amazing being demonstrated to them! And the technique worked! His hands have been so open! She also showed them a couple other techniques on him after. A move that is really going to help Silas with his spasticity. Instead of forcing his legs to bend if you pull down on the leg first and then push it up to bend it allows the leg to bend so much easier! Svetlana calls this "smart work" and she is absolutely right. We cannot force Silas into these positions. His body will allow it if done properly. Just like we should not try to pry his fingers out of the fists. Instead there is always a different pathway or neuro reflex to use to get the body to respond properly. After we had our demonstration we went to our first breathing class. We were able to smooth Silas' chest out to allow for easier breathing, help with reflux, and much more. Picture Silas' chest and rib cage to be like crumpled up paper or tinfoil. What was done in this session was incredible work. At the end it was if the paper or tinfoil was completely smooth now. His chest felt so flat. The whole look of it changed. This is going to be very important to learn this technique for help with his breathing and reflux issues. After breathing we went to Stephanie for tactile. We were trying to get Silas to engage during his session and we were playing around with trying to get him to say Mama. He said it, THREE TIMES!!! It was the most amazing experience, not only to hear him purposefully say it for the first time, but to share the moment with Steph our home therapist who helped to guide us into this direction of therapy! At the end of our session Silas went into meltdown mode again and we decided to take it easy in Archetype and work with him on his side on the couch. Silas brought his hands up to his mouth, which he never does, and CHOMPED down onto his finger! Ouch!!! This is so amazing though. For him to make that connection is incredible. He has now integrated the fact that he has fingers, not just a fist, and that his mouth is very powerful! Now that he has done that he will probably never do it again. He brought his hands up after and very nicely put them in his mouth and took them back out without chomping them. In repatterning we were at a parent meeting, but his therapist got him to calm down and have a very successful session. She had him crawling across the therapy table with her cues and help, and was able to get him into fetal position and stay in it without spasming out of it. This is huge. In oral facial Silas had a lot of his sucking and swallow reflexes worked on, and work on his eyes as well. The asymmetry of his face has started to shift so I am looking forward to taking our after pictures and comparing. Silas already looks so different then when we first arrived. He looks longer, and his face looks more defined. His feet are much looser and his toes less cramped. His overall personality and body language is so much more mellow and way less spastic. Silas had a very good neurostructural session to end our day and first four days for that matter. He really wants to crawl! And he had started this process!! He just needs some simple reminders and he will be off and running soon, baby proofing here we come! Although all these great things have been happening, let me tell you, this conference is in no way easy. It is emotionally, physically, and mentally challenging. This is 64 hours of therapy in eight short days. Not only are these kiddos enduring this intensive therapy, but they are also detoxing from it. Silas has been dry heaving, throwing up, achy, and very exhausted. He is such a trooper though. All of the toxins in his body are flushing out of his system, and he is changing by the minute. Thankfully Matt arrived Sunday night which was perfect for some much needed Dada time. Although when Matt arrived he still wasn't himself. He is a much more mellow version of himself. I cannot wait to see what these next four days bring, it is going to be amazing though, I know that for sure. We had a free day today to relax and reboot our systems and it was so necessary! Silas had a hard day still detoxing from the work. Very hot and cold and back and fourth with his emotions. But we had amazing moments in between the hard times. He went swimming with Mama and Dada and had an absolute blast, he is such a little fishy. He played with Dada and tried crawling a little, hiking his butt in the air, so cool! Now he is sleeping soundly and getting ready for another long day! Thank you to all who are following along with us on our journey, this is simply life changing and the most amazing and rewarding experience I have ever had. There is so much love and healing here with all these families and therapists. I am so grateful to be here. Here's to four more days of amazing life changing intensive therapy for our little guy! Goodnight all! -Mama Brown
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MNRi family conference - day two

1/17/2014

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Day two of MNRI camp got off to an inspiring start when Sarah read to me Silas' horoscope of the day. Normally I am very skeptical of horoscopes and such theories but this was something you could not deny the significance of. His horoscope read this:
Something wonderful is happening in your life now, Gemini. But you are impatient, and because you are impatient you are jumping to conclusions. But progress is happening off the radar. You may not be able to see it yet, so you have to have faith that something good is meant to be. If you look at a rose bush in late spring, you may not see the bud, but it is there waiting to burst open. If you followed it through slow-motion photography you would see it. Think of your goal in this way, and know that it is about to bloom.
This is so true! We have to be patient, there are amazing and wonderful things happening in Silas' body and brain right now and we have to wait and see when they will choose to bloom! This is all part of the MNRI journey. Sometimes you will see continued results weeks later from the therapy that was performed, we have to be patient and give the body time to interpret the new information. Some results are almost instant though, which is also wonderful to see! For instance, Silas has already shown changes in less then 24 hours! He is already more vocal, more aware, he is flexible and has a larger range of motion. When you pick him up he is less spastic and feels more dense. He is not as hyper extended as he was the first day. His hands are less fisted, and his moro reflex is becoming more integrated. He is taking this therapy like a champ! And his brain and body are soaking up all the amazing information! I cannot wait to see what tomorrow brings! Silas wants to crawl so badly. He has started to make the movements, they are just very premature and very choppy. His right side is much weaker than his left, being that it is very spastic and tight, so it is less integrated. To help strengthen the right side they will actually be focusing on using his left side which is the stronger side and continuing to strengthen it so it can then begin to teach the right side. This confused me at first. My logic was that we would need to focus more on the right side since it was so weak and behind, but it makes perfect sense that you would use the strengths you already have in your favor and improve from there. Silas did very well in his archetype session allowing three sets of hands on him at a time to really lengthen his body and stretch it out. His hands were also together at midline during this session which is very rare for him! Usually his ATNR will kick right in and he will be all over the place, but you can tell something must have integrated because having his hands at midline is tough for him with his spasticity. If this doesn't make sense to some of you reading, no worries, just know he is doing amazing, I am still learning all the terms and lingo as well, it is very overwhelming and confusing, but what I know for sure is that Silas' body is receiving such amazing work and he is absorbing it like a sponge!!! I heard through the grapevine from Silas' therapists that when Silas was brought up in the core specialists daily meeting that everyone was very impressed with how well he is doing. Dr. Masgutova said in meeting that she was very impressed with the amount Silas' spasticity had decreased since we had last seen her in October. She hadn't seen a response that fast in very many cases and expressed that we must have been doing very great work with him at home to get to this point with him. So encouraging to hear this as I thought I was slacking at home!!! Now I have the drive to do even more when we get back! It is very gratifying to see instant results and is so rewarding as a parent who is trying daily to be the best mother, therapist, nurse and caregiver to such an incredible boy. I cannot wait to see what tomorrow brings for Silas! I do have to say there is the cutest little boy in one of our sessions we do through out the day. He is a little older than Si and presents very similar to him. The difference between the two is that he is verbal. It is very interesting to see him struggle with the gross motor skills like trying to crawl, sit-up, or hold his head up all while saying "I want toy." I picture that Silas must want to say the same exact things but just isn't there yet. It is like looking into the future, that maybe soon with this therapy his speech will come like that little boys has! So very cool to see. The pictures I posted below are pictures that Sarah captured the first night we arrived in Orlando. I wanted to capture specific features on his body that are not well integrated yet. You can see his hands are tightly fisted, his feet turned in and his toes cramped from spasticity. His face shows misalignment and appears to be almost puffy. And his head of course small due to his microcephaly from his brain injury. I wanted record of these because I am 99% positive at LEAST one of these features is bound to change during our time here and I want to be able to compare the two to show everyone how amazing this therapy works in these little bodies. Thank you for reading, as day two comes to an end I am just so very thankful we have the opportunity to be here. Here's to a good nights sleep and "silent healing" as his brain interprets all that has been integrated during our first two days here! Goodnight, Mama Brown
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MNRI Family conference - day one

1/16/2014

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Wow! What an exhausting but incredible first day at camp. I can't even begin to explain all that happened today and what we experienced, but I will try my very best to reiterate it for you all! (Also...i'm exhausted so forgive my writing skills!) We woke up and I was right on time getting all of Silas' meds for the day ready, made up his formula, showered, woke him up, changed him, and got him dressed and ready for the day. It is so different taking care of Silas by myself, without his nurses help. I know that sounds kind of strange seeing as i'm his mother, but i've become dependent of his nurses to help me with his care, it can be tiring and trying at times, and very repetitive, but I would of course go beyond limits for this kiddo! We rolled on down to breakfast, grabbed a quick bite to eat, and then ventured up to our first session. We started out with Archetype. I don't expect you to know what this is, as I am still learning myself! What I know about Archetype so far is that it brings full body awareness allowing Silas to see that he has a central spot in his body that leads out to all extremities. It gives him a central point right below his belly button and extends out to his fingertips and toes and tip of his head. A lot of kiddos with brain injuries aren't aware of that fact that they even have arms or legs, sometimes, if the neuro pathways are being interrupted, not allowing connections to get through to their hands or feet. Silas I believe is somewhat aware, but it is very premature still. He did excellent in his first session with very little to no whining. Mornings are very tough for him, and I was imagining the first few sessions to be very rocky, but he proved me wrong! His therapist was so very kind and gentle, he was very comfortable with her working on him. Our second session of the day was repatterning. This session was focusing on resetting Silas' body and neuro relfex patterns. When the brain injury occurred in Silas his body went into a fear and fight or flight mode mixing up the brains natural reflex patterns and confusing his system. For instance a therapist could be trying to check one of his reflexes and the wrong one will activate. This session will help Silas re-set his system so his reflexes are no longer confused. He did amazing in this session as well. We loved our therapist and learned a lot of new material! Third session was focused on oral and facial. She did a lot of work in and around his mouth, trying to awaken the reflexes for suck and swallow. She also applied some cranial sacral work as well as other techniques to try and shift the asymmetry in his face. On to session four still doing great we walked into his neurostructural session when he lost it...he was finally so overtired and needed a nap. Our therapist was kind enough to send us to lunch early and come back early from lunch to get the rest of his session in. In the mean time Silas hunkered down in the fuffy hotel bed to nap! And boy did he need to nap. He had so much new information put into his body in just 4 hours!  He needed to sleep and reset his system for the second half of the day. And that he did. He went down almost immediately, and I unfortunately had to wake him up for his next session. It was time for his proprioceptive and cognitive (prop&cog) session. This session was awesome, he did a lot of rolling on the ground with motivation waiting at each end for him to roll to, his ipad and his star toy, cant go wrong with those items! He did great rolling and seemed to love it! We had a short break after that session and finally went to our last session of the day which was with his home therapist Stephanie who is working the conference! She did tactile on him until it was time to go downstairs to get his assessment from Dr. Masgutova! We walked in and Dr. Masgutova remembered Silas right away from the mini clinic we did in October. We had an amazing assessment! She found that Silas' spasticity had reduced by 20% since seeing him in October 2013. Silas also had a much wider range of flexibility in his body and his awareness to his surroundings had improved. He was so alert and his tracking for objects was spot on. Dr. Masguvota tested Silas' leg cross flexion which is a reflex that brings each leg up by hitting a spot on the opposite side of the body (forgive me MNRI gurus if i'm wording this wrong). She found that Silas had created a new neuro pathway in his brain for this reflex and it was functioning amazingly!!! What a milestone!!! She said so much more during his assessment which I could not quite understand (she is polish afterall) but we will review it tomorrow and I will be able to ask many questions! I cannot wait to see what tomorrow brings. Silas did incredible and I am so impressed with how hard he worked with only having a 40 minute nap! 6 hours of therapy and he passed with flying colors! He is tucked in tight and his brain is working away filing his new information from our day. Good night and here's to a restful sleep to all! 
With love,
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masgutova neuro-reflex-integration therapy

1/15/2014

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Wednesday January 15, 2014 - First night in Orlando, FL

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Hey There Saga Fans,
I am going to try SUPER hard to update you every night of our time here in FL! We are going to be very busy with the conference but I want to keep a very detailed blog about our time here. Not only to share will all of you who made it possible for us to be here, but to remember how far we've come on a day to day basis with this intensive therapy. Tonight I will update you all on how our flights went! 
I was SO nervous to fly with Silas. I had no idea what to expect. The fact that we had to check all of his medications and bring on his special formula, I was so nervous I would forget something or do something wrong! I made my lists and I checked them twice. Heck! I checked them over probably ten times! SO very afraid of forgetting something! I will say, I don't think I forgot anything! Knock on wood, though...who knows, right? Everyone always forgets something! Well anyway, driving to the airport I was going over the lists again and again in my head and finally I had to make myself shut my brain off and focus on that fact that we were about to cross a very big milestone! Silas' first time flying! Of course I had worries, like getting through security, but thankfully all went well in that department! I didn't even need to show proof of prescription for anything and we got right through no problem. We all hunkered down by our gate and waited. It was delayed by half an hour, but was no big deal. When it was finally time to board they let us on first so we were able to get all settled. We used his car seat on the plane for positioning and it worked out very well! I was afraid of his ears bothering him since he can't swallow on command or chew to relieve the pressure, but his ears didn't seem to give him any trouble. Silas, as we all know is an adrenaline junkie so he LOVED take off and landing. He was happy the entire flight cooing and kicking and didn't cry once! We got off our flight just fine and had a nice short layover in Philly. He took a short cat nap...and I mean short, like 20 minutes short! I gave him an ativan to see if he would sleep more but all it did was mellow him out for the next flight. I personally think he could've done without the ativan but also it didn't hurt to give it to him. He stayed up the entire flight from Philly to Orlando and again did great! No crying! Landed in Orlando and took the shuttle to our resort and checked in for the conference and here we are. In our lovely 3 bedroom suite in beautiful Orlando, Fl awaiting 6 hours of therapy tomorrow for our first day of COnference!!! I have so many emotions about this. Nervous, curious, excited, anxious, happy, blessed! I can't even begin to explain what we are about to witness in these next few days of the first half of this amazing conference but I will be sure to update all along the way! I welcome you to ask any questions, leave comments, and pray for amazing results and healing! We're finally here! I am so grateful! So for now goodnight, until tomorrow night when I update you all after our first six hours of therapy on our first day here at the MNRI Family Conference!!! 
Goodnight all, 
Mama Brown  
Here's to the great going forward! -Ann Hopps 
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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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