A little piece of heaven

I’ve noticed that if I allow myself to get overly tired, it’s harder to stay positive. Well a good night’s sleep seems like a childhood memory, it’s been that long since I’ve had one.

While in a funky exhausted mood I started dwelling on “The Head”. This is the big ugly monster that terrorizes me during the day while my thoughts wander. It is the dark ugly cloud in my life. It’s the single most frustrating part of this journey for me.

Sometimes when I look at tiny winy 6 week old babies with their strong straight little heads it makes me want to weep. I saw one of those today and it unhinged me.

The thing is, Nathan’s head control is so darn poor. It seems that no amount of therapy can get The Head to stay where it’s supposed to. I don’t think I’ve ever seen Nathan maintain The Head in correct alignment for more than 2 seconds, ever. I don’t understand it. I’ve seen amazing improvements with his ability to bear weight. He’s even coming along a little bit with his trunk. Some balance has kicked in. But The Head seems untouchable.

I was looking over some CME videos. And I honestly feel that The Head is holding him back. I see videos where he is supporting his weight and even his trunk is up, but the head bobbles and down or back he goes. Forwards, backwards, left, right. Ramon was working on aerials today, and he was able to stay up for a while, but then The Head would bobble forward, the trunk would follow, and we’d end up with a heap on the floor.

But the worst is the wheelchair. The chair itself doesn’t have proper head support. It relies on the child to have minimal head control. So in a 5 min stroll in the chair, I have to fix him about 67 times. Even if I recline him and tilt him back (unless he’s alllll the way back and pretty much laying down). What he does is he constantly lifts The Head forward, but he can’t keep it properly aligned for even a tenth of a second, so then it falls to the side. I fix him, a second later he does it again. I fix him again. The Head bobbles again. It’s the most disheartening dance I’ve ever experienced. If I lean him all the way back, he gets furious because he likes to be upright to observe the world. Oulla, Youseff’s mom, suggested I leave him. She said eventually he will have to find a way to fix himself. I have tried it, but he doesn’t. He just hangs halfway out of his chair like a rag doll, and stays. I would leave him like that, waiting for the day where he magically realigns himself properly, but I can’t handle The Stares. Everyone. Stares. They shoot darts at me, like I’m the worst person in the world for letting my kid hang half out of his chair like that. So I fix him. And the dance begins again.

Let me end this post with a most sincere plea for help. I cannot let The Head win this battle. But I need help. What have you done with your child that has helped to improve their head control? Has anyone heard of any special exercises? Drugs? Torture devices? I’ll try anything. Please, HEEELLLPPPPPP!!!!

(Btw… I hope you guys can pick up when I use sarcasm? I’m not serious about torture devices, really, I mean it )

PS. I’ve just come back from water polo feeling much better, nothing a few good blocks can’t cure 🙂

PPS. Add banana and nutella to the mix and you have one happy momma

Your wish is my command! The results from the poll are in and the overwhelming response was, YES, keep blogging! I’ll be happy to oblige.

Every day when I take Nathan to his CME appointments I come up with new reasons why I love this therapy. Today I will share some of those reasons:

* CME works primarily on the BRAIN, not the muscles. Nathan’s body is mostly okay, but it’s the brain injury that triggered and continues to cause any issues he has with his body. We are doing ABR to work on the issues with his body, but 95% of the problem is in his brain. So why work the body when the brain, the control mechanism, is what needs fixing? All of Ramon’s CME exercises are designed to create new neural pathways and to stimulate dendritic growth and synaptic connections. It may look as if Ramon is working at a muscular level – building strength in Nathan’s legs, necks and trunk. But in reality the exercises are meant to trigger an anti-gravity response. This anti-gravity response is then established in the brain, and the more this response is elicited, the stronger the pathway in the brain. Function determines structures, is what is now being said in the brain plasticity world. So the idea is that function (Ramon’s exercises) will create physical structures in Nathan’s brain to strengthen his anti-gravity responses.

* What exactly do you mean by anti-gravity response, you may be wondering. Ramon explained to me once that he believes that every human being is born with an anti-gravity response imprinted in his/her genetic code. Whether brain injured or not, we all have this response imprinted within us. That’s why you see babies automatically “pulling up against gravity” at a very early age – they pull up their heads when on their tummies, they pull up to kneeling, they pull up to standing. It is this anti-gravity response that often gets damaged in children with brain injuries. The genetic code may be present, but perhaps it is not available in the brain because of the damage, especially when the damage ocurred in motor areas of the brain. One of Ramon’s primary objectives is to “awaken” this anti-gravity response. He believes that once this anti-gravity response is firmly triggered and established in the brain, children can develop motorically. I love this about CME! When Nathan tried the IAHP program, it felt all wrong to me. Putting a child on his belly all day and waiting for him to pull up against gravity on his own just seemed really bizarre to me. We tried it with Nathan and just never saw any kind of response. I think this may work for children with milder injuries, but not for children like Nathan with such severe injuries. I felt that Nathan didn’t have the instinct like other children did, so it felt futile to leave him on his belly. Now that Ramon is working on an anti-gravity response, I notice at times Nathan wants to lift up against gravity much more.

* Since 90% of Nathan’s problems are motoric (is that even a word?!!), this is the area that needs most stimulation. Intellectually he is very aware, medically he is strong. But anything that has to do with motor control – oral, gross, fine – he is severely affected. Since Ramon is working at a neural level on creating new motor pathways, my hope is that this will improve his motor abilities at all level. I have already noticed that he is using and controlling his hands much better. He is opening his hands more and coordinating the opening and closing of his hands to grasp objects. I have also noticed that he is eating better and moving his tongue more. Since he hasn’t had OT or ST in close to 4 months, I can only attribute this to CME.

* CME is a very dynamic therapy. It is not repetitive, or boring. Ramon introduces new exercises all of the time and keeps Nathan entertained with all of the ways to help him that he comes up with. Even though every exercise has a specific objective, each exercise often works on multiple things at once. For example, in one exercise, the objective may be to have him use his legs to pull up against gravity. But at the same time he may also work on head control, balance, and trunk control. Before CME, it felt impossible to do enough exercise to cover every body/part area where Nathan was deficient – I would’ve had to do exercises all day to work on the head, trunk, arms, hands, and legs. With Ramon, I feel that everything is covered in 2 45 min sessions. The rest of the day I don’t worry about his motor development, as I know that he’s been thoroughly exercised.

* Although CME is intended to stimulate the brain and create neural pathways, it is also good exercise! I believe that like any human being, kids with CP need to MOVE and exercise! Exercise is an important component of having a human body. So although CME is working on the CNS, it is also quite a workout. All those squats and balancing exercises is like going to a football workout with some pilates mixed in! It makes me happy to know that Nathan is also receiving excellent conditioning.

* Nathan’s muscle tone has improved and evened out. His legs are more relaxed while his trunk is a bit firmer. And we haven’t used any medications!

You can see why I love CME. It feels that with just one exercise modality, Nathan is receiving most of the stimulation that he needs for motor development. And the key is: it WORKS! I haven’t seen fabulous changes in Nathan but I have seen some amazing changes in most of the other kids going in and out before and after us into Ramon’s office. Nathan is a difficult case but kids that are slightly milder see vast, rapid improvements.

I’ll leave you with 2 videos:

This one is for everyone who thinks he’s always happy in therapy. Nope. I just don’t post the weepy ones 🙂

Am I driving you guys crazy by posting too much? I can slow down if you guys want! Owen keeps telling me to slow it down but it’s just weird to me to be far away from everyone who knows and loves Nathan so I am trying to share as much as possible about our life down here.

Please let me know if you want me to slow down or keep going!

On a quick note – Nathan woke up almost fully recovered!!! His nose looked beautiful, no snot, and all that’s left is a bit of a cough. Me thinks there’s something to this biomagnetism hoolahahaha. I have to say I was pretty impressed with the recovery. This morning I took him to the pool to celebrate his recovery after CME and he LOVED it. He kicked, squealed, even splashed with his arms! He was so happy. Tomorrow we’ll go back and I’ll try to film him. He’s sleeping deeply and peacefully after a very active morning (CME then pool) and I am hoping this will add a new layer to Nathan’s life down here – fun AND exercise at the same time! We got lucky and there was a whole class of about 10 little girls swimming at the same time and boy was he excited.

Anyways, here’s the poll:

Am I posting too much?(poll)

PS. All responses are completely anonymous 🙂