I’ve been a busy bee

Over the weekend while talking with my cousin in Buenos Aires, I made the final decision to stay in Santiago until mid-March. That’s about as late as I dare traveling while pregnant – I will be 7.5 months pregnant then. I’m excited that Nathan will have the chance to work with Ramon for a total of about 6 months!

Two nights ago I had a dream. I was deep asleep and I dreamt of Nathan in a hyperbaric oxygen chamber. Somewhere in my subconscious mind I had the thought – this is what he needs to complement his work with Ramon. I woke up with this vivid awareness in my mind and jumped on the computer in the middle of the night, trying to find an HBOT chamber here in Santiago. I found one but the doctor said, “Sorry, we do not see children.” As I was begging him to reconsider, Ramon’s secretary Claudia heard me and said, “But Marcela, there are many other chambers, here are 2 more.” So I called around and tomorrow Nathan has an appointment for an evaluation with the doctor who runs the Hyperbaric Program at Clinica Las Condes.

My train of thought is the following: Instead of seeing Ramon twice a day, Nathan will see Ramon in the afternoons (which we had already planned for financial reasons). We will do another session with him at home. Then, every morning, I can take him to the Hyperbaric Chamber until he receives at least 40 treatments. Why mix the two, you may be wondering?

First of all, because I dreamt it. Second, it is recommended for people who have stem cell treatments to do 40 dives 90 days post Stem cell transplant. It is believed that the HBOT helps the new stem cells grow and “take hold” in the body. Nathan will be hitting the 90 day mark on Nov. 15th – which is exactly when I was scheduled to start just 1 session a day with Ramon. The third reason for considering HBOT is to enhance his performance in CME. I found a fantastic summary of HBOT here. In my hopeful mommy mind, my thought process is to increase his energy with the increased level of oxygenation to “prime” the brain to receive Ramon’s message loud and clear. As an analogy, imagine throwing a coin into a swimming pool, it takes much longer to reach the bottom than throwing a coin from the 2nd story of a building through air. My hope is that HBOT will be like throwing a coin through air and that Nathan’s response to Ramon’s treatment, and general health and brain development, will be enhanced.

Oh, and to complement my evil plan even more. Nathan will be in a multi-person chamber, so someone will go in there with him (I have to find out about the baby, but if I can’t, Denise will go in with him). He will be in the chamber for at least 1 hour every day. I believe they will allow us to bring a DVD player into the chamber. My hope is to have him watch a movie while Denise or I do ABR on him while in the chamber! This way we can get 2 hours of ABR in every day – one while he’s in the chamber, the other from 7-8pm, which we’ve been doing the for the last couple of weeks. We’re just doing 1 exercise right now (chest), I’m just trying to get into a good rhythm and to see some improvements in one area of his body to give me more energy and belief towards ABR.

So if all goes according to my plan, he will have 2 CME sessions, 1 HBOT session, and 2 hours of ABR every day. AND he would still have time to go to preschool 🙂 His day would look like this: 9am HBOT/ABR, 10:30am CME at home, 11:30am lunch and nap. 3pm CME with Ramon, 4-6pm preschool, 6-7pm dinner, 7-8pm ABR.

So that, my friends, is what I’ve been up to this week. Scheming away. If all goes as planned, Nathan will be starting HBOT and his new rhythm on Monday, November 16th. I’ll keep you posted!

Up up and Away!

Ramon believes that once we get Nathan doing aerial standing consistently, we’re on our way! Yesterday he was able to repeat the aerial standing 5 times. The previous time I showed this exercise, we had to use a schmata to give him some feedback. Yesterday we removed it and he was able to stand without the schmata and without a toy to stimulate him. As you can see in the video, it’s just the initial stage of this exercise – he has to be able to stand completely straight, and hold. But as many of you wonderful supportive friends have told me, PATIENCE! This journey will take a long time but the important thing is, we’re on the path!

[youtube http://www.youtube.com/watch?v=bg248mmJDMs&hl=en&fs=1&rel=0]

This one I”m showing because it used to take him between 20-50 seconds to perform this exercise. Now he’s doing it in between 5-15 seconds.

[youtube http://www.youtube.com/watch?v=T4aFsoPr0F0&hl=en&fs=1&rel=0]

Here you can see he has much more stability and a little bit more balance:

[youtube http://www.youtube.com/watch?v=yHdrp6RDE2M&hl=en&fs=1&rel=0]

Once again, look how straight he is!

[youtube http://www.youtube.com/watch?v=5yNndaxVDhQ&hl=en&fs=1&rel=0]

Compare to this one, when he last saw Ramon in Toronto:

[youtube http://www.youtube.com/watch?v=3CYfwwkBVXE&hl=en&fs=1&rel=0]

Yesterday we had the pleasure of having Oulaa over to lunch. Her son Youseff has been working with Ramon for close to 2 years now: http://www.youtube.com/user/oulaalaoui . We had a LOVELY lunch and conversation and I felt like in our approach and way of thinking, we’re peas in a pod. She did give me some wonderful advice. She has been doing this much longer than I have, and she said it takes a lot of patience and perseverance. Some kids progress rapidly and they’re on their way quickly, other kids take a lot longer, a million repetitions, and an incredible amount of belief in their potential. She told me about her journey with Youseff, how he progressed rapidly and then hit a trough, and it’s taken him a very long time to start climbing out of it. But like me, she believes that now is the time to fight for her son, that even if he doesn’t show tremendous progress quickly, she has to keep trying and never give up.

As much as I wish Nathan was the rabbit, not the turtle, I have to admit that I feel deep, tremendous gratitude that he is on the path, that we found CME, and that I am seeing tiny tiny progress day after day. Honestly I think Nathan may not even be the turtle, he might just be the snail, but it doesn’t make a difference to me – what matters is that he’s in the race! We have a path, he’s on it, and how long it takes, doesn’t matter. Or so I try to tell myself 🙂 Please don’t think I’m a liar when I post in 3 weeks that I am having a hard time because he’s not progressing. There are good days and bad days. But I am trying to change my view and to always return to the fact that he’s in the race and he’s on the path. So please remind me next time I whine!!!

Fun at ChuckECheese’s

Last night Nathan went to a birthday party at ChuckECheese’s. One of Nathan’s little friends from preschool turned 2 so she invited Nathan to her party. He had so much fun! The moment I told him we were going to CEC he started squealing and squeaking – I didn’t realize he loved that place so much! I have a feeling I now know where daddy takes him on weekdays in LA when they go out roaming the streets!

I have to admit I was super excited to see the progress in him outside of therapy. While at the party, he was standing tall, holding his trunk and his head. I was talking to a lady who has a niece with severe CP and she was telling me that her niece is just so very affected, “Not like your son”. I was surprised to hear that, as Nathan is always referred to as VERY severe. It goes to show that he really is making progress! I am posting some pictures of him at the party standing tall, holding up his trunk and head. Go Nathan Go!