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.
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!
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.
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!
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!
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.
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.
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!
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!
We made it safely to florida! goodbye maine!
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!
our fitfth day, our last day here.
Today was our LAST DAY at Conference! So sad, I feel like I could do at least 3 more days or so, now I really have a perspective as to why 8 day conferences are so important for these kids, it just allows so much more time for amazing integration to take place! I am so so excited that we are signed up for an 8day conference in January! This will be amazing for Silas to get these intensive conferences this close together. The earlier (age wise) you start them the better, it just allows for such a deeper level of integration when their brains and bodies are that resilient.
Silas did so amazing today! You’d think by day five he would be so tired and warn out...and while he his tired you could tell he was still so present in his sessions. Wow, what a difference from January in FL...he was still so lethargic then, he still had all those nasty toxins from all of the seizure meds he had taken for his first year of life, he body was just still so resistant to the therapy because of the brain trauma. This conference he is so present during his therapy, he is tolerating his tummy, melting into the table and letting his brain rest. And he was so vocal all day! You can tell a huge difference in his ability to focus, to make eye contact when people are talking with him, and to really looks at their faces and study them. There was so much reciprocal vocalization between us, especially between him and his Dada.
His first session he had tactile with Amy. Matt was lucky enough to be treated at the same time as Silas and experience some tactile with from of the therapists in training. Silas did great with Amy, all he needed was the music from his ipad signing time show, he actually rarely needed the visual from his ipad all week, huge difference from January...he needed a visual flashy distraction for every single session, which of course is not the best for his brain, he is able to take in the therapy so much better without the visual stim. But of course he did need his light up sound toys a lot, be we tried to turn them off when he didn’t need them, and towards the end of the conference the music was almost enough for him to stay calm during his sessions. So that in itself is a huge difference. Dr. Masgutova even liked one of the songs playing so much that she asked for us to email where to find it to her. She says there are some singers that have a certain calming tone to them, it really does calm him right down. Nice to know that she approved his music.
Second we had archetype with Jean. I was able to spend his session with a therapist in training and have archetype done on me. It was not only awesome to have the therapy done to me, but to also feel it so that I know better what it feels like for when I do it on him, how much pressure to apply (less pressure on him because he is smaller) and how the movements feel. Silas did great on his tummy during this session, and they were able to get so much done. Jean is so excited to continue his home program with him in Maine, you get such a “high” from these conferences and a much needed motivational boost to get into the swing of things back home. I also think having a shorter distance in between conferences will be better because I will feel much more motivated with his program knowing that he will be seen again soon, and I will be able to see if what we were doing back home helped! (Which it will! I know it!) But the neat thing about these intensive therapy conferences is that even if I didn’t even touch him with the MNRI method, it would still integrate in his body for up to four months! That how intensive and deep this therapy is, so much so we cannot touch him for five days with his MNRI program to give his body and brain a rest and let it integrate and organize all the new information he received.
We had lunch after his first two sessions. Lunch was cut short so we could have our closing ceremony with all the families and therapists before everyone had to leave after the day was over and catch their flights home. Closing ceremony is so fun!!! Theres singing, and celebration, and so much love! It started out with the whole group of therapists signing to everyone. Then a short explanation of how to carry on at home with the program. Then all children were presented with their medal and certificate and dvds to follow along for the home programs! Silas was awake and alert and so happy for closing ceremony. In January he was sound asleep and so lethargic. What a difference! I am so grateful we found this therapy for him, it has changed our lives. We were able to share a little bit about Silas’ successes with the group and also some helpful information for families to fly for free to the conferences. The closing ceremony gave us a great energetic boost to finish the rest of his day! Normally he and Dada nap during lunch, so Silas didn’t get to nap this time. I thought he would be a little crankier and tired due to not getting a nap in but he must have felt the energy too because he was more awake and vocal than ever!
Silas had re-patterning with Tanya after the ceremony. He did really well with Tanya on all of his different techniques. Then Dr. Masgutova came over to treat him with her! We got to see her FOUR TIMES during conference including his assessment. SO AMAZING! In Florida we only saw her twice. She is just so incredible. To see her work just makes my jaw drop every time! She told us she was able to find two discoveries with Silas during his time there. One was the now famous “Silas Foot Tendon Guard” and also a moro point on Silas that she was able to access. Normally his moro point would be right where his gtube is so we wern’t able to get to it on his right side. Instead she found a different moro point on him avoiding the gtube! Amazing stuff! Moro points are very important to use with MNRI on these kiddos, so it’s amazing she was able to adapt to him and his tubie! Because she is such a genius with the human anatomy, she knew right where to go for him. I hope someday we will be lucky enough to have more time working with her, like a full hour long session even! It would be so incredible.
Silas had his oral/facial and visual/auditory integration after Tanyas session, and it was so fun! I was blown away with his vocalization and his acceptance for her working in his mouth. She was able to get some amazing work done. He even started to move his tongue laterally, which is SO cool! The ability to move your tongue laterally (back and fourth, to the sides of your mouth) allows for so much growth, not only for eating to clean out your cheeks and push around food, but for language, verbally being able to move your tongue to make new sounds, and also for gross motor skills like rolling over! So the fact that when she had her finger in his mouth and he was moving his tongue to the side to touch her finger was HUGE FOR HIM! See...things that we take for granted, things that seem so simple, are things that Silas cannot do and NEEDS to be able to do, we are getting closer everyday! She taught me so many cool techniques to use that will help with his inner oral integration, and i’m so excited to start it with him!!! He was so so so vocal during his session, I took some great videos! I unfortunately cannot post them for liability reasons, if someone were to try to mock a technique and didn’t know correctly how to do it that wouldn’t be good! But wow was he chatty!!! Never have I ever seen him so happy while someone is inside his mouth! Normally he would scream! That in itself is huge!!!
Our last session of the day was neurostructural with Svetlana’s Nephew Elvin. We feel so lucky to have gotten on his team for conference, he is definitely a genius and a healer like Svetlana! At only 22 years old he is doing incredible work for these kids! He was so professional and so effective with his work. Our last session with him was awesome. He showed us incredible easy techniques to get Silas’ feet to relax, his feet are so cramped up with his spasticity, so much so that his second tow is often hidden and pushed down under his other toes. It is so hard to get it to come up at the same level but Elvin did this for his toes within 30seconds!!!! He showed us how to do this for him at home, he said the more we work with it the better it will get. I mean...it was magical! His once cramped up feet were flat! Then the work he was able to do with Silas on his stomach was amazing. Silas was happy, and vocal, ON HIS STOMACH!! Amazing!
Overall, absolutely amazing day!!! Such an amazing conference overall! I am so so proud of him for all of the progress he made, and for the endurance he had throughout the conference. He stayed so strong the whole time. I cannot WAIT until we go to San DIego in January to the 8day conference! We secured our spot, so now we just have to come up with the funds! Thank you to all who donated to get us here, I ask that you please share this life changing journey will all those around you and fight for us to get to another conference. It is all about quality of life. This therapy is a lifestyle for us now, and a necessity. It is what works to help heal him from his traumatic brain injury. We would have never come this far if we hadn't found MNRI. If you know companies, individuals, anyone that would like to make tax deductible donations please message me, we have a non-profit account with Annie's Angels Memorial Fund! We appreciate all those who make it possible to give Silas this therapy! SO THANK YOU from the bottom of our hearts!! Stay tuned for progress reports of Si back at home with his home program!!!
Our Fourth Day.
Wow! I cannot believe it. Were over the hump! More than half way through. Only one day left to go! Seems like it flew by! I am sad it's almost over!!! Camp is so wonderful! We woke up this morning and had a delicious breakfast. Silas seemed a little cranky and a little off but that is to be expected on Day 4...his body it trying to process all the new information and organize the chaos! I diffused Joy and Lemon in our room before we left for tactile and I think it did help some for Silas because he was happy as can be in tactile. We had a gentleman shadowing us today. Really cool story actually...he was here on work (he is a pilot) and today happened to be his only day off. He met one of the therapists while in the pool last night and they started chatting and making small talk. They put two and two together that she was here working as an MNRI core specialists for camp and he just so happened to have a daughter who just turned one with HIE (the same type of brain injury Silas has). So he was able to shadow us today and see what MNRi is all about and what it could do for his daughter! Is that not meant to be! I feel so blessed to have been a part of that and I hope that the family will become involved with this therapy, it sounds like it'd be the perfect fit for her at such a young age where foundational work such as this is key for their brains to heal. If only we could have found MNRI when Silas was that age! Anyway, I just feel so blessed to have had the opportunity for him to be able to shadow our family throughout a day at camp, and the cool part, he was even able to notice the changes Silas had made in just three sessions! The therapists on Silas' team kept giving us praise saying what a wonderful thing it was to let him follow along, it didn't even cross my mind as to ever even say no to letting him follow us, we are here to help not only Silas, but educate ourselves to spread the healing along to others. That's what it's all about.
Silas did great in tactile today, we will definitely miss his tactile therapist, we love her! He stayed on his tummy for quite some time with only s little bit of fussing. He talked back and fourth with Matt for a lot of the session. Those two have a bond like no other. I am so glad that Matt is so present in Silas' life and involved in it all! Even though it is harder for Matt to endure these long days of therapy since his norm is to be at work providing for our family, he is still putting amazing effort in to care for Silas and entertain him through our sessions. he appreciates the small (BIG to us) victories that Silas has made because he knows his son so well!
Silas did awesome in archetype today. Jean was able to get some great work done with him. His was so much less spastic and so much easier to work with today, day and night from when we arrived. Jean was able to get in tucked so well into the fetal position when he then pushes out of it like an infant would when coming out of the womb. That is one of those foundational pieces to his MNRI program. Silas' birth trauma left him in such a state of fear, so its important for him to go back and relive the experience but in a healthy way and the correct way. Silas also spent about 20 or more minutes on his stomach during his session with no complaining! That is hugeeeeee for him to tolerate that! We were blown away. Jean wore her Silas' Saga shirt today too which was a cool little surprise!
Silas and Dada skipped lunch today to get an extra long nap in since we knew he'd probably need it, being Day 4 of intensive therapy and all. I was able to chat with my Mama friends during lunch, it's so great being able to connect with other families. Silas had re-patterning with Tanya after his nap break and started his session off with a nice little present (if you know what I mean! Stunk us out!!!) So glad he got that out of his system though because he was able to have a really amazing and successful session afterword! We did some great work on his hands supporting and STNR which are both huge for crawling, balance, protection, rolling over, etc. During his STNR technique he felt so so loose. Normally I have to hold his little hands down on the table with all my might while Tanya pulls up on him...to keep his hands down! This time I barely had to put any pressure, we felt sooo much different then when we did it the first day of conference. Svetlana came over and of course as usual wowed us with her magical hands! She did a lot of work on Silas' upper body. He is so tight in his armpit area - so tight you have to force him to get his arms to go up above his head, which makes dressing him very tough. Svetlana worked her magic and all of the sudden Silas raised his left arm at his side up over his head ALL ON HIS OWN! What!!! If that wasn't amazing enough she worked on his right side and got it to do the same! Then what did he do!? He raise both arms at once up over his head ad if he were saying "CHAMPION!" So incredible! Never has he ever done that on his own! But wait, there's more magic! Silas was assessed by Svetlana Day 1 of conference. His tested "minus minus" (meaning no reaction, no integration) on his leg cross flexion. Leg cross flexion is tested by stimulating a point in one leg and having the opposite leg flex into a right angle and pull up. So Day 1 Silas had nothing for this reflex (minus, minus). She tested it today and BOTH legs reacted!!!!!! he now has leg cross flexion in both legs!!!! This is huge for crawling, walking, and soooooo important! She told me she needs to change his home program! Because his priority already changed and we haven't even left conference yet!!! Wow! Absolutely mind blowing! That is how fast this method can work! And thats why these intensive conferences are SO important for kiddos with such severe trauma and injury. How she does these things, I have no idea!! Praise also to our amazing cores to work so well with him this conference to get him to these points! I said after to the father shadowing us..."if that doesn't convince you on the method I don't know what will!" I am so glad he was able to witness that amazing moment!
Silas had oral/facial with Lucy and did so incredible. He is just so different this conference than the one in January, tolerating and accepting the therapy so much easier! She again was able to get into his mouth for about 20 minutes! She was able to get to her second knuckle when testing his gag reflex before he reacted! Day one she could get maybe half a knuckle...that means his gag reflex it maturing!!! Huge for eating, handling saliva, and so much more. When she took her finger out of his made he shocked us all when he made his first raspberry noise with his lips!!!! We were all so shocked! I have been trying to get him to do that for two years!!!! Maybe it happened by chance or maybe not, but it was so cool to hear him make that noise independently with his own lips!!! He was just so calm during this session, and talkative, and did soooo well!
Silas had neurostructural after oral/facial and was so talkative and present during his session. This modality is so tough for him too because his brain is trying so hard to fight everything they are trying to integrate. Even they noticed how different he felt, especially his his arms! We told them it was because Svetlana worked her magic!! We had a woman in training working to co-treat him and Silas was still so patient with it all, even the slower pace...which he probably really liked, longer breaks in between techniques! Again he spent a great amount of time on his tummy and did not even scream! By the end of the session it looked like he was melted into the table he was just so relaxed!
Our last session of the day was Basil Ganglia, which is a modality that takes pieces from each program and applies the technique at a much deeper level to reach the basil ganglia part of the brain. SIlas did so so well during this session. He didn't even seem too overtired, that longer nap must have helped him! He did a lot of cool things during this session too including locomotion! This is when he is lying on his side and he picks his head up along with his arm he's laying on and his leg that straight. Hard to explain, but I got down and did it for myself....its tough even for me! I can;y believe he did that! I remember him doing it a little in Orlando, but not like this! He totally loved it too because after he kept doing it. Locomotion is important for so much too, so what a huge accomplishment! What a great ending to our fabulous day of therapy! Just one more day to go!!!! Then back home and onward to San Diego in January for 8days if we can raise the funds!!! We will make it happen even if I have to sell all my belongings!!! Because seriously, this therapy it worth it!
our third day.
And what an amazing day it was! Today started out really great...we got a nice little break and were able to sleep in until about 8am - Normally at home I sleep in until around 11AM since we have nursing and i'm not "on duty" for AM wake up (Matt and I switch off getting up with Si...teamwork is keyyyy!) So for me it was bliss to be able to sleep in at least until 8! We got up and had a nice breakfast, made sure to start Silas' tube feed up early with just water so we could pack in some extra fluids. We started our day with tactile integration with Amy. During our session I did some hands on work, thats part of the whole educational piece of these conferences, to be hands on with the therapist on your child so that you feel confident carrying through at home. We did the sciatic nerve exercise with Silas which is one of his number 2 priorities on his home program. It was a little confusing at first, and still is, but with practice it will come. I also got to have it done on me! It helps to have having them done on you so you know that amount of pressure to give, how it feels to have done, you can also feel the motion and how fluid everything is done on you. I always like to have things done on me, its a nice little treat from treating Si all the time! Mamas and Dadas need this too!! Like I said MNRI is awesome, everyone needs it! Speaking of...I plan someday to get some PTSD done on me to help with healing from Silas' birth, it was definitely traumatic not only for him but for me as well...thats a whole other story though! Anyway...tactile went amazing and we got a lot of really great work in. Silas was very content the entire session, chatting and playing with his toys.
Next we had Jean for Archetype. Svetlana came to see us during the beginning of his session! At conference you will most likely see Svetlana about two times. First for their assessment, and a second time for a small treatment. Or should I say HUGE treatment...because we is a magical person! The things she is able to accomplish in just 20minutes is absolutely mind blowing. So yes, we had an amazing session as always with her! She worked with Silas, he did not need his ipad, just his start toy, turned off so no sound or lights were distracting him. She did so many amazing things but the one most amazing and huge thing she did for him was on his head. See Silas has an asymmetrical face, last conference they did a lot of work in oral/facial to help align his ears because was one higher and pushed forward a little more. When you change the position of something in the face that is not symmetrical, the positive changes go far beyond what their appearance will look like after, but it makes a huge difference is so many other areas. Silas' head has always been misshapen and also still has soft spots in the front since birth, not major soft spots, but enough to know his head is misshapen. Svetlana worked on his head and said to us "come see" and she has pushed his bone structure of his skull forward to where it needed to be! Filling in those soft spots! His head is now much more symmetrical! It blew. my. minddddd! How did she do that!? She told us his head will continue to change from this shift and we will see many great results. I cannot wait to compare before and after pics, already since being here he looks so grown up to me! Svetlana finished up her session in about 20 minutes and we finished archetype strong with great work done my Silas, Jean, and Jeanie!
Had a nice lunch break as usual...Silas and Dada went up about half way through for their cat nap, feel so so bad waking those two up when you can tell they both want more sleep...like father like son! I like lunch time because its a nice time to connect with the other families here at the conference...and honestly I could chat forever on the topic of Silas!
I woke the boys up and we went down to have our second half of the day...second half meaning FOUR MORE HOURS OF THERAPY...which is why we are so tired after, especially Si! We had re-patterning with Tanya and he did some great stuff. His hands supporting reflex is showing less delay than yesterday which is awesome! Intensive work = quick results! You wouldn't necessarily know just from looking at him, but in three days he has already made huge progress!
Silas had a breathing session in place of oral/facial with our good friend Marie France! I love her work! I told Silas before we went in that he couldn't use any light up toys or music in her session because she needs to keep concentrated to do her work. He must have listened and taken my advice because this was our first full session with NO LIGHT UP TOYS! NO IPAD! And he talked and cooed, and chuckled and did soooo amazing! Breathing is an intense program too! So Matt and I were both soooo proud of him! Here are some pictures below of our session! Great connection between Silas and Dada as usual! Marie france was so happy with Silas' progress, his ribs were still in alignment and symmetry for the most part, and flat like the need to be instead of crunched up into a ball of tinfoil (which is what they were like in January). She was able to get a lot done on his back that she hasn't been able to reach with him on such a deep level before, just shows that the work is sticking with him, so incredible! And gosh these core specialists are SO talented! So needless to say...breathing went AWESOME!
We went to neuro-structural integration next. Silas was in great spirits from just having a very successful breathing session! His therapists in this room are very concentrated and serious...one of them is Svetlana's Nephew and the other is a woman in training. Svetlana's Nephew does incredible work! He is so focused and accurate! I feel lucky to have him treating Silas at this conference. That family is made of healers. This session is tough for him, because it focuses on a lot of things that his brain is fighting. For instance getting his hands up over his head...this is very hard for him...so you can tell its tough for him. He does so great though. But it's definitely one where he needs some distraction to get through it...okay he needs a lot of distraction! He did use his ipad in this session because it seemed very tough for him day three. His body is changing so much, and really trying hard to work through the chaos. They used the "Silas Foot Tendon Guard" and she literally pressed the spot and without having to even touch his foot it came up into a right angle without any delay! Incredible! If you know Silas well, he points his feet like there is no tomorrow! His spasticity just takes over his little body because the brain isn't signaling for it to relax. I would literally have to use muscle to force the foot into that angle...which is not right, and very un-natural! So the fact that Svetlana was able to find this point on Silas is absolutely incredible, how does she know!? And even cooler...Svetlana told two other kids team of therapists that they need the "Silas Point" - he is a legend! Haha, what a rockstar!
Silas' last session of the day was prop/cog and will actually be the last prop/cog session at this conference, because it'll swap out for a very cool modality called Basil Ganglia...which i'll explain more about in our Day 4 post. He was most definitely tired by this point in the day, especially after such intensive work, his small session with Svetlana, his breathing and everything else...he still did awesome regardless, but you could just tell he was tired. He did some rolling, crawling, and hands supporting during his prop/cog session. He is so close to both crawling and rolling, but there are some very important things that need work before those will happen. He did roll about ten different times from back to belly before coming here, but this is helping to integrate the correct sequencing needed to do those things. I cannot wait until the day he crawls, rolls, sits, etc...it will be so rewarding and incredible. It's amazing what we take for granted and then to see someone work so hard just to lift their arm above their head...these kids are fighters and true heros.
Silas had a little bit of a rough night getting to sleep, I think a mix of being over tired, third day of camp, i think this may have happened in January at our Orlando Camp also...it is just so much information to process. Jean our home therapist came up and was able to muscle check him, he definitely needs even for water in his system. I love having our home therapist here with us, just feels safe. Now is is off to dream land ready to conquer Day 4 tomorrow! Thank you all for reading...please share our blog, especially if you know someone this could help! They are doing incredible work for PTSD right now with the troops and have also worked with the Newtown folks. I would highly encourage even just reading Dr. Masgutova's story about how she brought MNRI to the USA and even cooler how she same up with the method, it is incredible.
our second day.
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!!!
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!
Hey there Saga fans!
We are finally home and resting up from our long ten day adventure! And boy does it feel good to be home. Something about your own bed just makes you feel so great! Although I have to say the accommodations were amazing!!! And when I say my own bed, I mean to say Silas' because i've had to sleep with him since we've been back due to his sickness. It does of course help that his bed is a queen size bob-o-pedic so i'm still sleeping on a cloud! I want to fill you guys in on our last day in Orlando. We had Silas' therapists come up to his room for treatment since he was running a high fever and acting very sleepy and out of it. He did so amazing considering his condition. I think that he may have aspirated during his detox and may or may not have thrown up and stretched his nissen fundoplication because he's technically not supposed to be able to throw up! Eeeek! I will fight to not have another nissen surgery done if this is the case, because through MNRI I have learned many different techniques to help with reflux. The doctors said usually after the second nissen they would do a more invasive surgery and if it is possible I will fight to not have this done. Especially since it involves detaching the stomach or something to that crazy extent (I sound like I have no idea what i'm talking about but I just remember it was intense and I wouldn't want to subject Silas to it). In the end I will always do whatever is best for Silas though. Silas did really well his last day! He perked right up for sessions and even crawled a little! I learned more techniques for the MNRI programs that I still had questions about. There is so much information taught to you and given to you at a family conference compared to the mini clinic we attended in October 2013. I was so tired and exhausted by day 8 that it was hard to participate and learn but I pulled through and did my best! I feel so much more confident with my home program now and I am so excited to start! We cannot apply MNRI methods for 7-10 days because the body is integrating and needs rest. It is so hard not to apply any of the method! You get so used to doing it and so comfortable, and have the mind set that everything you are doing will only help him more, so it is hard to shut your brain off!!! I need rest too though! I have been sleeping whenever Silas sleeps to catch up on my rest so by next week I am ready to start his home program!!! Half way through Day 8 they held a closing ceremony for all the kiddos! It was so inviting, energetic, and so fun! Each kiddo got a medal and a certificate of completion. I can't wait to eventually fill his room with these medals! This therapy is a way of life! It is absolutely amazing! We were so very blessed to have such an incredible team of therapists who gave their all during his sessions and were just as excited about his achievements as we were! The conference experience has such an amazing energy about it. Surrounded by healing and growth, change, and struggle. All of the families were incredible. Meeting their kids and the parents was amazing. We met some wonderful people! And the best part about it was that we felt so comfortable and welcomed. We felt normal! Everyone shared a similar journey, and through that, we were all able to connect! Silas reached some incredible achievements during conference. I want to share them with you because many are ones that you may not notice without seeing him on a day to day basis. When we arrived in Orlando Silas was in a state of fear. Although he may have presented to be a happy kiddo, his body was in fear. When you experience an injury your body goes into survival and tries to protect itself from whatever is harming it. When Silas' brain injury occurred at birth his body went into fight or flight. And it stayed that way. It will continue to stay in the fight or flight mode until his reflexes are integrated and his body is told to break down the barrier. Although Silas received very early intervention after birth the general PT and OT were not enough to take his body out of fear. Which is why the healing process for Silas has been so slow. You just cannot deny this work when you see it face to face. You literally see the changes happen right in front of you! This work is smart, and this work is efficient. Instead of looking at Silas on the surface they dig deeper. The Masgutova Neurosensorimotor Reflex Integration program is the real deal! After just eight days of intensive therapy, 40 hours, Silas has made huge gains! He is 20% less spastic, his body is listening to the work being done and is less defensive to the therapy. He is much more calm overall. His hands are more relaxed even when in fists. His toes are less cramped. His facial structure has become more symmetrical. He is more vocal than before and making new sounds! His eye contact is being made at a deeper level of awareness. Silas has started to crawl! He is now trying to roll from his back to his belly, something he has never even attempted to try! The list goes on and on! This work is life changing! Another very cool thing about this work is that after a conference, the work will continue for four months!! So if we were to stop therapy for four months he would still be receiving the work! Obviously we are going to start his home program up ASAP, but it is a very amazing thing! I cannot wait to see what else changes on a day to day basis. I think when he starts feeling better we will really see the changes begin to happen. I took Silas to the doctors today and we put him on an antibiotic for possible aspiration pneumonia. Better safe than sorry, and we would rather not subject him to the radiation of a chest x-ray. We are familiar enough with Silas' symptoms and believe this will be best for his recovery. We were told the first time they detox is the hardest, after this it should get easier. There are just so many toxins this their bodies from all the medications and vaccines that it needs to be released. I am so excited to announce that tonight with the remainder of our Secret Santa donation we have secured a spot for the July 2014 Orlando Conference! This time we will be doing four days, and our buddies Mason and Dakota will be joining us for therapy!!! Their Mom's were so impressed with Silas' results that they couldn't pass up this amazing opportunity! I cannot wait to share this incredible experience with them! I will continue our blog to keep everyone updated on continued results, I hope you all enjoy reading about our experience and I urge you to spread the word if you think someone you know would benefit from this. No matter the diagnosis, anyone is worthy of this therapy, all ages! If you have any questions please comment below! I would love to answer! Silas is sleeping currently and we have had to adjust him five times already! He keeps scooting up to the top of his bed! Svetlana warned us this kiddo would be on the move, she was right! Goodnight all, keep posted for more exciting news to come on this little warriors progress! -Mama Brown
*Below is a slide show of our stay in Orlando! Enjoy!
A Day late on my Day 7 blog. It's 9:00am here in Orlando and we start our very last day, day 8 at 9:30am! Only trouble is...we have a...DUn DUn Dunnnn...sick boy on our hands!! Eeeekkk! Not Good! Our poor little fighter has been spiking a fever since yesterday and we are trying our hardest to control it with meds but the beast of the fever is fighting back hard! I don't know wether he is sick because of he intensive work and maybe his body is run down, or if possibly he may have aspirated when he was throwing up during detox. So hard to tell. Either way, he will still be treated today, it may be in our room away from the other kiddos instead of down in the therapy rooms, we shall see. I have been giving breathing treatments, suctioning, venting, the whole ordeal, but you can just tell Silas feels like crap...he is so out of it, and is grinding his time like it's his job, it's like nails on a chalkboard! Poor kiddo! Since Si has been under the weather day 7 was very mellow, but still very exciting. Silas slept through almost every session, peeping at us every now and again and still tolerating the work like a champ despite his condition. Today was a big learning day for us. Preparing us to go home with the correct technique for our home program. Learning the benefit of each technique and why it is or is not a high priority on his home program. It can be very overwhelming when you get your home program, scary looking almost, a bunch of numbers and words that look so foreign until you become familiarized with them. Thankfully I already have a very organized system at home and will be able to apply our updated home program to it. My home system was actually shared at a team meeting with all the therapists and they loved it. A couple of Mom's have asked me about it and I will be helping them organize theirs for home. We are very fortunate to have 4 MNRI therapists in the Portland, ME area and will have that support when we go home, where as some families have no one in their state to help with continuing therapy. Three of the Maine therapists even worked this conference! We are so lucky, and we are so thankful for that! I was able to learn a little more about certain terms and techniques today as I mentioned. I have a much clearer understanding of ATNR. This is the asymmetric tonic neck reflex. I had always thought of ATNR as a bad thing. It was presented to us as a bad thing by our child development company. "He's going into ATNR" they would say. I didn't understand why or what it meant, I just knew it wasn't good. Yes in some cases it isn't good, but thats only because it is not properly integrated. One of the achievements from yesterday was when we noticed Silas' ATNR is becoming properly integrated! This is huge. This will help with auditory and visual, etc. During Silas' archetype lesson I participated hands on and helped do Silas' "6 point star" and other exercises. I feel very confident in this work with him once I learn it properly. Silas' therapists, Sarah and I all noticed how present Silas is during his sessions now. His body is listening and responding to the work, where as Day 1 his body was so much in fear and crisis and he needed constant stimulus as a distraction from his therapies. His body and mind are finally connecting and he is really soaking up the work being done. We saw Svetlana (she floats around from room to room) and he had an awesome assessment! She called him a "champion boy" meaning that Silas responds so fast and so well to this work. She was so very impressed with his flexibility and spasticity decrease. Also his mind body alertness! She asked towards the end what the plans were for his feeding tube. I had explained the diet he was on and how he was recently switched to a soy formula and she says "no, no, no, soy bad for brain!" I knew it was, we have to correct this mistake the company made!!! I mentioned we would like to start feeding him orally soon and explained that usually kids are on the keto diet for three years until they start weaning them from it. She told me he could possibly be eating by mouth with intensive therapy far before three years from now and we explained that on keto you are able to eat orally and she was very happy about that. She believes in our kiddo! We will try oral feeding little by little when Silas' body heals from whatever has got him down. Svetlana gave a talk in the afternoon about preparing for home after the conference. Here is some really cool information. You are not supposed to touch the child with the MNRI technique anywhere from 5-10 days after conference. Their bodies need to rest and digest the information. She says "we do not promise you convenient child" and what she means by this is that Silas will be going through a ton of changes when he gets home, he will go through behavioral changes, physical, and it will not be easy at first. They are processing. Something really neat is that if you were not to apply any technique for 4 months after leaving conference, the work will continue for four months minimum! Obviously we will continue as that is best for Silas, but it just goes to show how incredible and intensive this works is! Svetlana tells us, "get ready" because Silas is not convenient child anymore! Meaning, do not leave him unattended, he will roll off couches, beds, and he is going to be on the move. Watch him carefully! I love that! So exciting!!! A really big tip Svetlana gives us is to be positive to our kiddos. To tell them they are safe with us, they are our friends, they are strong and amazing, and bravo to them!!! Always be positive. The moment you are negative, they will pick up on that. But at the same time do not allow them to whine, whine, whine. Joke with them and teach them to be present in this world. There will be tough times, but we need to teach our children how to get through those times with laughter and love, and hard work. She told us to let them work their bodies. For example if we are picking Silas up let him do the work. Do not always be there to support his head every time he is coming up from the laying position, or he will depend on that and will not learn to engage. Svetlana gave us a lot of nice technique to use during the transition period that will not harm the integration process. It is so interesting what the different reflexes and different parts of you body can do for you. For instance pulling on the thumb activates breathing. How do you know this!? I would have never even guessed. This work is so interesting and so smart! It is amazing the changes we have seen in Silas and despite his illness I cannot wait to see what our last day brings! They will be working on him up in our room today so we do not have to lug him around from room to room. He obviously needs his rest, and MNRi work is very well received when sleeping so that is a plus! Stay tuned for our Day 8 blog and continuing blogs about how he is doing after conference! Thank you all for reading! Here's to our last day of the MNRI family conference! Cheers, Mama Brown
Exhausted Mother here! What a journey this has been so far. I am going to fill you all in on days 5&6 of Silas' MNRI therapies. Big changes are happening and Silas' body is really soaking in all of the information. We have a completely different kiddo on our hands. Our once spastic, energetic kiddo who was constantly in chaos and fear is now so mellow and happy in his own body! All of his movements have become so much more purposeful, his eye contact is being made at a deeper level, and his CVI (cortical visual impairment) is improving by the day. I would have to say the biggest challenge we have come across during our experience so far has been the detoxing. With Silas' being non-verbal our only cues are his body language, his cries, coos, whines, etc. We do not know if his stomach is bothering him, we can only guess by the treacherous smells emitting from his body and the grumbles we hear from his tummy!!! Poor kiddo. His ketocal was also switched recently. The old manufacturer was bought out by a different company and our formula is now soy-based which is not good for his brain!!! We need to call them for a different option. His tummy obviously doesn't like it either, though it smells rather nice, like cake batter! Its just so hard, you have to think of every little thing it could be, is it the work, the detox, his teeth, the new formula, is he sick? What could it be!? He is a very smart kiddo and I believe with our home program and continuing intensive therapy his speech will come. Some of the specific progression he has made lately include his lessened spasticity. His body feels so dense now. He is so relaxed. His muscles even when excited are less tight than they once were just six days ago. His reflexes are now responding to some of the work. In the hands supporting position he will now push against our hand when giving the input instead of just caving in with no resistance. This will get him prepared for the quadruped position on all fours and many others. Silas' facial symmetry is changing. His face looks longer and more pronounced. His eyes are changing. I will be showing a before and after of his face and hands and feet on the eighth day. Even in the pictures below you can see changes. The pictures of Silas in his orange hat were taken on our free day, and the others were taken on day five of therapy. He just looks so different to me! Silas has become present in his sessions despite how tired he has been. Day 6 he did sleep throughout almost all of his sessions, but when awake was very focused and relaxed. When in the position to crawl he engages every time. His upper body strength looks incredible and so much more pronounced than Day 1. Silas will hike his leg up to push forward, but still needs help with support for pushing off with his foot. When he is more grounded in space he will do better with this. Bring it on Days 7&8!! We want to see what you have to offer for our little warrior! Stay tuned!!!