A little piece of heaven

* We had a 2nd opinion with an orthopedic surgeon at Children’s Hospital LA. He evaluated Nathan’s back and hips. The good news – his back is perfect! No signs of scoliosis! As for his hips – not so good. The left hip is now at 40% subluxation – up by 7 % in just a few months. Instead of recommending surgery or botox, he wants to start by having him sleep with a brace in between his legs to stretch him out passively. After 6 months he’ll evaluate again and then determine the next step. He also prescribed DAFO’s – feet and ankle braces. He wants the ones without hinges as he believes Nathan needs the extra support and this is meant to prevent deformities of the foot and ankle. I’m not so sure what to do as this goes against what ABR and ABM reccommend. Oh what to do, what to do.

* Belle’s developing her temper quite well! She’s trying so hard to roll from back to belly. She can turn about 80%, but then she gets stuck and can’t complete the turn. Subsequently she starts crying because she can’t get to her belly! She cracks me up every time!

* My diet failed miserably. I did well for a few days and managed to lose 3 pounds…at the cost of my milk supply. I guess you really need carbs to make milk. So I had to abandon the diet and the 3 pounds came right back on. Doh. Oh, and in case anyone is interested in increasing their milk supply… Belle’s doctor prescribed BEER. Yes, you heard me right. Beer. So I had a couple of beers over the weekend for Owen’s birthday and my milk supply came back with a vengeance!

* For the first time in his LIFE, Nathan is tolerating spending time on the floor! Since he’s on vacation from school, we’ve been leaving him for bits of time on the floor to try and get him to roll and play by himself. He whines a bit at first but eventually he settles down and I’ve even caught him playing. Hooray! This is a HUGE step for him! I think once he starts spending more time on the floor he’ll have more time to explore movement with his body, and good things will then start to happen.

So that’s it for now. Have a good night!

So this blog has become a really important part of my life. Not only is it therapeutic for me and a way to organize my thoughts. It has become a way for me to meet some of the most amazing people I’ve ever encountered. Some of you have become some of my closest friends. Your kids are beautiful and I think of them and pray for them often. I feel like the people who visit this blog are just amazing human beings. I wanted to say, one more time – thank you for enriching our lives!

And on this note, I wanted to share a little bit about this blog. These are some stats from the month of June. If the images are too small, you can go to our Picasa Page to see bigger images.

This is how many visitors we had:

And this is how many pageviews:

(this means that, on average, everyone that comes to the blog reads about 2 pages).

This is where you guys are from:

And it also shows that on average, people spend about 2 min’s on the site (I need to start writing shorter posts 😉

And for those in the USA, these are the 10 most popular states:

These are the most popular pages according to Google analytics:

And these are according to WordPress:

So, these are just a few tidbits about PFN.

If you are a lurker and would like to introduce yourself, today is a great day to say hi!

Thanks again to all of you guys who bring so much richness to our lives!

The other day I jumped out of my desk chair to get to a screaming Belle, got tangled up in cables, and accidentally tossed the external backup drive to the floor. Subsequently it wouldn’t start up. I took it to the computer repair store and the diagnosis: broken beyond repair. The guy said he could try a number of things, which would be quite costly, and the likelihood of fixing the device was almost null.

It made me think of Nathan.

When Nathan was little I thought for sure, by the time he was 3 years old, he would be doing more. I figured by 3 he would be walking. As he got older I figured by 3 he would be sitting. As he got even older I figured by 3 he’d have head control. Now he’s almost 4 and I don’t plan for anything anymore.

Sometimes I wonder – how is this possible? We’ve done so much. We’ve done all the right things. Traditional therapies, alternative therapies, diet – you name it, we’ve done it.

Conventionally, the answer is somewhat simple – too much damage. Holoprosencephaly alone is pretty devastating. Then there’s damage from hydrocephalus. And damage from untreated meningitis.

Spiritually, the answer is becoming clearer and clearer.

Would the journey be different if I’d been able to “fix” Nathan? Absolutely. Quite frankly, I think I would’ve missed the point altogether if things had “worked” for Nathan and he’d gotten better and better with treatment.

The journey would’ve become all about “how to fix your brain injured child.” I would’ve put all my energy into fixing him more and more, and into helping others use what I’d discovered to “fix” their kids. It would’ve been about external, not internal, change.

However, since nothing has worked substantially, the journey is quite different for me. It’s all about spiritual and emotional growth.

The journey for me is now all about unconditional love and acceptance. It’s all about relying on God instead of myself and others in the physical plane, about learning to value every single moment, about learning to see beauty in the world as it is.

I’ll give you an example. I used to get very mad at Owen if he didn’t act the way I thought he should act. I expected him to do things a certain way, and if he didn’t do them my way, I’d get extremely upset.

Thanks to my experience with Nathan, I’ve learned to accept Owen the way he is, and to value everything he DOES do, not what he doesn’t do or what he doesn’t do my way. I am grateful for him just the way he is, even though he doesn’t spend all of his spare time researching therapies, even though he prefers to let me make all of the decisions, even though he sometimes doesn’t agree with some of the therapies I want to try. I am certain I would’ve never gained acceptance of Owen exactly the way he is if it hadn’t been for my journey with Nathan, without being able to “fix” or even substantially “improve” him.

The other day my dad asked me, “If you accept Nathan, why do you keep going with all these therapies?” I keep going because it’s not about me – it’s about Nathan. I have accepted him, and continue to learn deeper and deeper acceptance every day (acceptance isn’t a static goal, it’s an ever changing, ever deepening feeling).

But my acceptance of him doesn’t mean that I should give up on giving Nathan the opportunity to gain skills that will improve the quality of his life. As I have mentioned many times, every tiny inchstone gives Nathan a better quality of life. The fact that he can consistently roll from back to side means he can chill with his hands in his mouth, a position which he loves. Now that he’s saying “yeah” and “mo” he can get his needs met more appropriately. Even though seen individually these gains are not much, when you look at them from the point of view of Nathan’s life – and the fact that he can do so little – everything that he CAN do means so much!

Twice in the last week I have dreamed that I’ve seen Nathan walking. In my dreams I jump for joy. It was a beautiful feeling. Is this a possibility for Nathan? I don’t know! Maybe he IS broken beyond repair. Maybe he is not. Either way, we both continue to learn. To me, this is the most important thing in life – continuously growing and changing.

Post Update

Having re-read this, I realized that I can summarize this whole post in a sentence: From a spiritual point of view, which to me is what matters most in life, I am glad that progress with Nathan has been so slow as it has taught me so much about love and acceptance! If progress had been fast and easy, I would’ve missed out on so much! Sorry to be so wordy, most of the times I figure out what I want to say by the process of writing 😉

(At his dad’s birthday party this weekend).