A little piece of heaven

This is Daniel using his eye gaze system:

Trial Eco Eyepoint

Isn’t he amazing at it??!!

This video kinda points out the issue with Nathan. He is a whiz at getting around the eye gaze system, he totally “gets it” and uses it the way he wants to use it.

But when we try to do what Daniel is doing – “testing him” by answering questions – Nathan rarely responds. I am 100% sure it’s not because he doesn’t know the answers – it’s mostly because he simply doesn’t want to comply. I think the Dynavox is the first opportunity at “controlling” his environment, so he doesn’t want to give up the only control he has by doing what is asked of him.

For example, I know for SURE that Nathan knows what a gun is. He LOVES to play with guns. If I ask him, Nathan, do you want to play with your guns? He immediately looks right at his guns and smiles. But if I show him a gun and ask him to find it on the screen, he will rarely pick it.

We are starting behavioral intervention to try and find ways of motivating him to answer our questions.

But I have to confess…part of me doesn’t even want to. Why not let him have his control? Why do we need to test him anyways? The only reason is for the sake of the school district and their need for “measurable outcomes”. When it comes to Nathan’s quality of life – I don’t really care if he answers “Horse” when I show him a picture of a horse! How is this going to improve his life? However, him entertaining himself by flying through the device, turning on the TV, asking me questions, doing whatever he wants to do with it – I think this will help him so much more in the long run.

Anyways, I wanted to share another example of a child using an eye gaze system, and share some of the difficulties we face when working with the device.

Isn’t Daniel a cutie??!!

I watched “The Secret” again the other day and I loved remembering that our thoughts create our reality. I’ve been in such a funk lately, it was great to remember that I can change my experience of life simply by changing my thoughts. So this whole week I have gone to bed thinking, “I am healthy, I am happy, I am free, I have everything”. I wake up and repeat this litany, I remind myself when my thoughts are spiraling out of control, when I am caught in a nebulous fog of doom. Perhaps it’s a mid-life crisis? Can those happen so early? Is motherhood entirely about self-sacrifice, or can we preserve our identity and still give the best we can to our families? I feel as if the last few years have been about taking care of everyone around me, and there is so little left of ME.

Am I the only one who dreams about disappearing to an island, just for a few days? All alone? I’ve been playing on Travelocity’s “Last Minute” feature and am so so close to just booking something and disappearing for a few days. Oh I want I want I want. Anyone want to hang out?

We are out of crisis mode with Nathan, he is definitely improving, but still experiencing a lot of pain, I am having such a hard time dealing with the whining, I feel like a terrible mom, but the constant whining puts me on edge, it makes me feel useless, helpless, my child is in pain and I can’t do anything to help him, I don’t even know why he’s whining, uuggghhhh. Today he had more acupuncture and another Rolfing massage.

I’m turning 31 in just a few days. I wonder if that’s what’s driving me a bit bonkers? Another year, another child, more aspirations as I watch the years slip by.

Today I read two posts I loved. I wish I could be in the same mind-set as these lovely ladies. They both look beyond the mundane and see miracles everywhere.

Appreciation. Tara is one of my favorite people, I love her attitude and the way she transforms everything.

Let’s Talk Miracles

Or maybe it’s all just the pregnancy hormones?

We saw the doctor today and she said to give Nathan time to heal. She said that his body just went through a lot and needs more time to fully recover. His lymph nodes on his neck are very enlarged and she thinks that’s what’s causing him so much discomfort in his neck. But other than that, she asked me to give him time and she believes he will get back to normal soon.

He had a better day today – still much discomfort, but not constant. He had moments of happiness and even squealed and smiled a few times today. He is starting to make his little sounds again (not just the whining sound) so I believe he is on the mend.

What a frightening experience this has been. I have to be honest and say that I wondered if he would make it out of this illness. Those 2 days that he was catatonic, sleeping through the days, eyes empty, I wondered if his spirit was already on its way out of his body. It gave me the fright of my life. I believe he heard everyone’s prayers, and he heard my pleas to stay with us, as the next day it was almost like he came back, even though he was still very sick, there was life in his eyes again. I hope Nathan never ever goes through this again.

And I will sure do my darnest to prevent that from happening. Today I gave him his first MB12 shot, which is a superb immune booster. We also started applying glutathione cream every night, and soon I will have the rest of the new meds. I also think that adding acupuncture, reiki, and chiropractic to Nathan’s regular therapy mix will help him a lot. I won’t add these weekly, but maybe one of each per week so every week he is receiving something different.

We got some of the results back from some of the testing we did on his immune system and although his immunoglobulins are normal, we found that he does NOT have antibodies to some of the vaccines that were given to him early in life (before I knew better), which means his immune system is not working properly. Once we get the rest of the results, the doctor will decide the plan of action. She thinks he might need gamma globulin treatments to help boost his immune system. Between an immunologist, the DAN doctor, and the other new alternative healers, I think we will be able to keep him much healthier from now on.

I can’t thank everyone enough for all the the prayers and good wishes for our little piece of heaven. I think we are out of the woods now and just waiting to get back to normal, and I think it is because of all of the love and prayers that Nathan received. I know I have said this so many times but I can’t thank you guys enough!!!!!