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Narrating Teddy's Remarkable Life

This is the story of a boy who against all odds THRIVED!

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Please feel free to comment on posts or email us with any questions at narratingteddysremarkablelife@gmail.com

 

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Support our goal of giving Teddy a chance at future independence here: https://gofund.me/e3ac7a57

narratingteddysremarkablelife

This is the story about a boy who against all odds THRIVED! Read his story and see everything we are doing to help give him a chance at independence!

Narrating Teddy's Remarkable Life
A long overdue update! I have been wanting to do A long overdue update! I have been wanting to do an update about all the amazing things we have been seeing since his treatment, but because they are all these small things that add up to something major it is hard to truly capture it in words. But guys, all these little things are HUGE!! Teddy has been so much more interactive and engaged. He needs so much less prompting to attend and focus on work and tasks. He has been having such a great year at school and working so hard to stay at grade level!!! Our biggest hope from Neurocytonic was for communication and guys.... I don't even know how to describe how far he is coming. He is now able to respond to open ended questions about his day, without multiple choices or yes/no questions. He is starting to use feeling words to describe his actual feelings. 😳 While he still is unable to make more than an "ah" sound, he is vocalizing with purpose, even trying to sing along to songs. We are hearing more random sounds coming out in his vocalizations, he is just not able to reproduce them yet. He is using so many more non verbal communication skills like pointing and head movements. Today for the first time ever, he was actually shaking his head NO!!! We have worked and worked on this skill, but he never was able to do it in response to a question. Today it clicked!!! They are such small things in the grand scheme of things for a child, but for Teddy and us they are the Mt Everest! I truly believe Neurocytonic helped and I desperately would love to do one more round if we could afford it, but even with the one round Teddy is now able to communicate and that is worth the more than we can ever say!!
Sorry I have taken so long to give a new update! W Sorry I have taken so long to give a new update! We have been settling back in at home and getting Teddy back into the swing of school. He has been doing really well so far and we are hoping he continues to grow and improve as the year goes on. Overall, Teddy has been doing great since we have been home. We have been seeing consistent small gains with his fine motor and especially with communication. We have been working so hard getting Teddy to use his communication device and answer open ended questions about his day. He has been doing really well. Tonight though, he did something he has never done. When he went to bed he started crying. So I brought in his device and asked him why he was sad. He wrote "stars." He has a night light that casts a galaxy and stars (green laser dots over the entire room). Normally I just put the galaxy on, but on the weekend I will do the stars in a timer. So I asked him, do you mean you don't want stars? No stars? And he made a sound that he has been using as yes. Then wrote "no stars" on his device. I turned them off and said is that better and he wrote "yes"!. This is HUGE!! It is the first time he has ever been able to tell us what he was feeling and why. We are so hopeful this continues to grow and we might get to find out more about what is going on in that remarkable brain of his! ***Photo credit to my sister Christa and her always perfect photoshoots!***
First day of 2nd Grade!!! Where has my little roun First day of 2nd Grade!!! Where has my little round face boy gone? He looks so grown up this year. 😊 This is going to be a year of change and development. He has all new teachers, aides, and even a new bus driver! I am a nervous wreck of course, but in true Teddy fashion, when we went to meet his new teachers yesterday, he walked into the school like he owned the place. So, I have no doubt he will rock it like always! We are so hopeful this year will be a huge year of growth for him after this summer, so send out all those good vibes, prayers, and positive energy to help make 2nd grade the best year yet!!
This is 8! How is he 8 years old?? Who told him h This is 8! How is he 8 years old?? Who told him he could get older?? There is not much I can say about this boy, that I haven't already said 100 times, but, oh my do we love this boy! He is so smart, funny, laid back, focused, hard working, silly, and sweet. He works so hard and has accomplished so much. I wish you all could have the opportunity to meet him in person, because he has this aura of sunshine and happiness around him. He makes you fall in love with one smile and blows you away with how remarkable he is!! And today... Today was SOOOO special! I think it was by far the best birthday he has ever had. Now it certainly helped that I finally nailed the theme (thanks to our recent trip to Mexico and his newly renewed obsession with Coco), but today was different. Today his eyes were open and he was engaged and interested in everything. Today he was happy and content the whole day. Today he tried to blow out his candles for the first time ever and eat some of his cake! Today he played, actually PLAYED with toys appropriately!! It was the first time we have ever seen him and we all watched memorized. Today was the birthday I have dreamed of and it makes me so excited for the future. Today was the best day! For the full post and more pictures, check out his Facebook page: https://www.facebook.com/share/p/jdUWTo9jXDj6cNoi/?mibextid=qi2Omg
Sorry for the delayed update, but our boy is doing Sorry for the delayed update, but our boy is doing great! The full update is on his Facebook page (it is public so anyone can see it), because it was too long to type here. 😊https://www.facebook.com/share/p/KLJ3ADdoYRe5D2aK/?mibextid=xfxF2i
Do any of my local Louisville friends gave any rec Do any of my local Louisville friends gave any recommendations on where I could get a tricycle like this that is child size (14 to 16"), that doesn't cost $1000? I am wanting to get one for Teddy for his birthday next month, but the only online options that are affordable get mixed reviews on actually being able to put it together. We are wanting to switch it out for a seat with a back as well. Thanks!
We are almost home! We flew into Atlanta on Saturd We are almost home! We flew into Atlanta on Saturday and spent the day with family yesterday. We are currently driving back to our house. Yay!!! We are all dreaming of our own beds. The last few days in Mexico were busy. We are currently running on little sleep and colds, but I promise to write an update about our last few days in Mexico tomorrow. Teddy did great and we can't wait to see all the new growth once we are finally home and back into our routines. Thank you all again for your generosity and support toward getting Teddy to Mexico. We truly could not have done it without you! More updates to come....In the meantime, enjoy a photo of Teddy doing his best Gloria Steinem. 😉
Teddy says "ALL DONE!!!!". 🎉🥳. Today was the Teddy says "ALL DONE!!!!". 🎉🥳. Today was the last day of treatment and we are all excited! Teddy has done so so well and everyone there of course has fallen in love with him. The other day one of the nurses told me she wanted to tell me something, but said she wanted to use a translator to make sure she said it correctly. She handed me the phone and it said "Teddy has something very special about him!" She clarified she didn't mean medical, but just that he was special. I, of course, teared up and told her "Yes, yes he does." 🥰. Everyone who meets him immediately sees just how special he is and falls in love. He had his follow up cognitive test after his treatment today and he blew her away again. We ended up talking about just how remarkable he is for another 30 mins! Everyone has been so incredibly nice and gracious. They are all so happy and love what they do. They met us every day with a smile on their face and high fives and waves to Teddy. We will truly miss them all and are so grateful for what they do. Tomorrow we will have his follow up MRI and EEG. Then the real work begins. We have to teach, train, and nurture all those new neural pathways that have been created! Just like a newborn, he is going to have to be taught new things and these new pathways are providing a way for him to learn and grow. We are so excited to see what this treatment brings. They say we will see the most growth and changes over the next 3 months. His whole team of therapists, helpers, and teachers are all waiting at home to jump right in to make sure we give those new pathways the cognitive nourishment they need to help Teddy to do even bigger things! We are SOOOO proud of this kid and will definitely be keeping you all updated! Thank you all so much for helping to make this happen!
Go Teddy Go! This kid is amazing! While they are Go Teddy Go! This kid is amazing! While they are small changes that you may miss if you don't know Teddy, we are seeing changes! He is much more responsive and engaged with us and he is becoming so much braver! We are hoping to see even more changes over the next few months. Only 3 treatment days left!
Only 7 treatments left!!! Teddy continues to do gr Only 7 treatments left!!! Teddy continues to do great in the machine. We are still seeing some increased awareness and responsiveness with us. Additionally, I have been working with him on saying who I am in sign language and his has almost mastered it in just a few days! Due to his motor planning struggles, Teddy has struggled to learn signs. While Teddy does know the signs for all done, again, hi, bye, please, and thank you, teaching him those signs took months (and even years) for him to use them correctly independently or upon request. With Mama, he has picked it up so quickly, which is super exciting. We can't wait to see what the next few months brings and are so hopeful we will see improvements with his communication skills with his device. Only time will tell, but we are so proud of him! With the tropical storm that came a few weeks ago, we ended up having to skip a treatment because the city shut down (there was terrible flooding). So we were originally supposed to be done with treatment next Tuesday, but since we were already planning on being here a few extra days, we are thankfully able to make up the missed day on Wednesday next week. Then he will have his final MRI and testing done on Thursday and we fly back Saturday. That is if Beryl, who is currently headed straight for us, doesn't ruin our plans. We have our fingers and toes crossed that Beryl decides to shift away from us, so we don't miss another session!!! So please send out your good vibes and prayers that it doesn't hit here on Monday! Thank you all again for your continued love and support of our sweet Teddy!!
Halfway done!! Today was day 14 of the treatment. Halfway done!! Today was day 14 of the treatment. While we haven't seen anything big (we don't expect to see it at this point and expect to see steady developmental increases), we definitely feel like he is more engaged and responsive! He is independently engaging in some things, especially new things with Lily, and while not 100% consistent yet, he is listening and doing what is being asked without as much redirection needed. For I think the first time ever, he is coming into another room when being called even if he has his iPad!! Normally we have to go into the room so he can see us and even prompt with our hand to get his attention if he has his iPad, but now we can just call him from another room (takes a few times calling), but he comes by himself!!! While it might not seem like much, that is huge! They might be slow gains, but even these small things are making me even more excited about what we might see once we are home. So proud of this kid! Thank you all for your continued love and support of our remarkable Teddy!
We just finished day 8 of the treatment! Sitting We just finished day 8 of the treatment! Sitting still is still hard, but he has been doing so great! We found out that in addition to his brain, they are also targeting his spinal cord with the treatment. The hope is it might help with some neurogenic issues he has as a result of his caudal regression syndrome, as well as hopefully help with some nerve damage that has been causing him to retch horribly since he was tiny. We have no idea what the treatment will bring, but we are so hopeful. We have already seen some slight improvements with responding to us faster when we call his name and also doing what we ask more consistently. That is pretty huge! We are still early on though, so it is unlikely we will see much change now. They say we will most likely see the biggest changes once we are home in that first month or two. So exciting. We did manage to get to the park this morning before the tropical storm rolled in. As you can see, Teddy could have swung for the entire time. I think it is really helping to regulate his nervous system after all the changes this treatment is doing. It doesn't look too bad, just a lot of rain. We are well provisioned and ready for it though. Thanks for all your love and continued support!!!
Teddy has done great in the machine after that 1st Teddy has done great in the machine after that 1st day. He still struggles to lay still, but overall has been doing amazing! He is such a rockstar. We just finished day 5 of the treatment, so only 22 more days to go! In our downtime, we have been enjoying the park and even went out to lunch today and walked around a massive mall to beat the heat. We are excited for the next few weeks! I will post again in a few days. 😊
We have had a busy few days! Teddy had his MRI, e We have had a busy few days! Teddy had his MRI, eye exam, EEG, neurological evaluation, and cognitive evaluation. He did great for all of them! We was a real trooper and the nueropsychologist (who I loved) was so so impressed with his cognitive testing and how smart he is!! He even blew me away with a few of the cognitive tests. 😊. Then this afternoon he had his first treatment! I am not allowed to take photos of it, but it looks similar to an MRI machine. You can also Google NeuroCytonic and find a few videos about it. I won't lie, it was ROUGH. If you know Teddy, you know this kid can't sit still for 30 seconds, let alone an hour. But by the end he had calmed down and they said it was very common for all kids to start that way. They said after a few days they get used to it. So we have our fingers crossed he gets used to it, since we have 27 days left of it everyday. 😉. We also spent some time exploring the area we are staying. There is an amazing park 2 blocks away with probably 5 different playgrounds and a few miles of a walking tracks. If it wasn't so hot, we would spend most of the day there, because Lily is already bored and stir crazy. 🤣. Thankfully we have a little pool on the roof though to bet the heat! Lily loves it and Teddy even likes floating. Every one has been so incredibly nice and helpful. The language barrier has been a struggle and the cost of everything has been a learning curve, but we are figuring it out. The food is incredible of course! We will be pros by the time we leave. Thank you all for your continued love and support!! I will post a new update in a couple days, hopefully saying he has gotten used to laying flat and still for 1 hr. 😉
We made it to Monterrey! The kids got their first We made it to Monterrey! The kids got their first stamps in their passports. ✈️. It was a very long day, but the kids did great. Teddy loves to fly and is such a good traveler. 😊 It is beautiful here, but boy is it hot!!! Everything starts on Tuesday. I will make sure to update regularly and talk about the protocol and procedures as we go. Thank you all again for your support! We definitely could not have made it here without you! https://gofund.me/81ff63dc
This will always be one of my absolute favorite pi This will always be one of my absolute favorite pictures of Teddy. It is more than just a picture, it is Teddy. His spirit, his challenges, his story, and his triumphs all perfectly captured in a single photo. There truly is something remarkable about this boy! ❤️
Watch out 2nd grade, here comes Teddy!! 🥳 I can Watch out 2nd grade, here comes Teddy!! 🥳 I can't believe my baby boy just graduated from 1st grade!! It was a rollercoaster year, but he did so well and we are sooooo proud of him!!!! We had a great time at Teddy's last day of school Glow party and he won the Technological Wizard and Bookworm Award! As excited as we are that school is out for summer, it is also extremely bittersweet because we are saying goodbye to his amazing Special Ed teacher and aide and we are truly heartbroken about it. We will miss them terribly, but are so thankful for helping Teddy be so successful in school. Now we are getting ready for a big trip to Mexico and can't wait to see what big things this summer brings!!
After Christmas, things started to seem like they After Christmas, things started to seem like they were getting better. Teddy was doing better and better each day. The fluid coming out of his chest tube was getting less and less and his breathing was getting stronger and stronger. They had finally been able to wean him off of the high doses of morphine and on December 28th, they were able to take out the breathing tube and put him on high flow oxygen.... https://narratingteddysremarkablelife.com/index.php/2024/05/24/chapter-22-an-uncertain-new-year/
Field Day (and a mini Mexico update): Teddy's fiel Field Day (and a mini Mexico update): Teddy's field day was today and he did so well! At his school it is mainly a huge water play day, which isn't Teddy's favorite, but he tolerated it so well and we definitely even had some secret smiles. 😊. He played in the bubbles, the car wash, and lots of relay races. A few years ago, this much water would have completely shut him down and caused him to be extremely overwhelmed, but today he just went with the flow. So proud of this amazing kiddo!! (Sorry, not sure why the pictures cut off 🙄) In other news, we leave for Mexico in 2.5 weeks! 😳 I am so nervous, but also so excited about what this could mean for Teddy. The more I talk to parents who have been there, the better I feel about making this happen for Teddy. It isn't a magic wand, but so many see improvements in communication, socialization, and fine motor skills, that it makes me even more hopeful we will see these things for Teddy! Many of them have gone back for second and third rounds! We appreciate all the support you have given us on this journey and we couldn't have done it without you. And don't worry we will make sure to do regular updates while we are there. Again, thank you all so much for your support and donations. It truly has meant the world to us. We can't wait to see what the future holds for our sweet boy! https://gofund.me/10cbd9e8
Teddy's first Christmas wasn't how we imagined it Teddy's first Christmas wasn't how we imagined it would be, but it was still special. https://narratingteddysremarkablelife.com/index.php/2024/05/16/chapter-21-teddys-first-christmas/
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