A little piece of heaven

* I saw the obgyn today – we set a tentative c-section date for April 28th! I have a couple of people checking the astrological significance of the dates around that time and should have final confirmation in a few days. I now start going to weekly appointments. Getting close now!

* I think my breakdown yesterday was due to lack of sleep. I’m getting no more than 5 hours a night. I am TIRED and worn down!

* Instead of staying in the wah wah wah stage, I decided to be proactive. I called the manufacturers of the Kidwalk and told them about my problems with Nathan. They are looking into ways of making it work for Nathan and we set up an appointment in 2 weeks for them to work with Nathan in the Kidwalk!

* I found out that there’s an Abilities Expo in LA from April 9 – April 11th. I’m going to bring the boy and all of our non-functional equipment and see if we can find stuff that actually works for him. I need to get him a new wheelchair so hopefully I can find one here that will work well and support The Head.

* We have an IEP meeting in 1 hour and 10 min’s.

* Am I “too real” in my posts sometimes? I read a review somewhere on the web:

It’s well worth the read, but it may be tough to get through because this mother doesn’t hide her insecurities or frustrations that she lives with when strangers approach her about her disabled son.

* Maybe I should stop typing and get ready for our IEP meeting 🙂

Here are some photos from Belle’s baby shower that we had last week (I forgot the sd card in my camera so couldn’t take photos, was waiting for them to be emailed)! It was shared with Jackson’s baby shower, who is due 2 weeks after Belle!

We had a wonderful wonderful time. At one point I looked around at all those precious kids and was like, wow, what a lucky little girl, not yet born and she already has 8 little friends waiting for her (9 if you include Nathan)!

So if you were wondering what all the stuff was on the chair from this photo

Now you know where it all came from!

Oh and a couple of people were asking me where I got some of the stuff for Belle…it’s called SECONDHAND baby! All of the furniture was Nathan’s – the crib, dresser, night stand, glider and bassinet. The stroller and car seat I got for a fraction of the price from craigslist. And most of the clothes you see have been gifts! From my mom, grandma, friends…I have really only bought her a couple of outfits! It’s funny how things change…with Nathan everything had to be new and perfect. With Belle…well…I know she will be okay even if she’s not the first to ride her snazzy stroller!!!

Going back to the original topic… Belle’s shower was an absolute blast. As I keep saying..now all I need is a baby to put into all these things!

PS Thanks Michal for organizing this!!!

…inevitably comes the low.

Today was just one of those days. I had been cruising on a nice high valley for a while, and had forgotten that awful nagging pain that comes with raising a child with intense special needs.

I took Nathan to see his cousins and since last time he seemed desperate to play with them, I brought his Kidwalk so he could stand and play with them and maybe walk a little.

We hadn’t used the kidwalk in many months so I was hoping that after 3 months of CME, 40 hbot dives, 40 hours of suit therapy – he would look/act different in the kidwalk. But…he didn’t. I know, I know, I can almost hear you saying – there you are with your expectations again! Haven’t you figured out that expectations inevitably lead to disappointment? What can I say – they still get me, even though I know I should know better. Plus he hasn’t been in it in a while, how can you expect him to figure it out again on his first try?

As usual his head was flopping to the sides

He would just stand there and not even try to move his feet

And he was unhappy about having to be IN it

I know it’s irrational but as I always say, this blog is about being honest and REAL, and this was a very real emotion today. It felt like I had a dark dark cloud in my chest and it made me just so sad and upset that nothing seems to ever really work for Nathan.

Even the devices made for the most disabled of kids don’t seem to work for Nathan. His head is always flopping off to the sides, or his trunk falls over, or his hyper tone in his arms and legs prevent him from doing stuff. Nothing that we have for him works right – the wheelchair, the walker, the car seat. We have tried so many chairs, walkers, wheelchairs. Nothing seems to ever work right, and we are always left to battle with body parts flopping in all directions.

When I got home I found a box waiting outside with a new chair that I’d had custom-made for Nathan. I was hoping that this was going to be “the one” thing that would actually work for him – it was custom made! But nope. We went to eat and put him in the chair at the restaurant – his head flopped to the sides. We went grocery shopping and tried it in the cart – the chair didn’t fit.

I was hoping this would be the chair that I could use to put in a double stroller so I can go out with both kids when Belle is born – but it doesn’t seem like it’s going to work.

We even bought a used backpack carrier thinking we could put Nathan in the back carrier and Belle in the front – NOPE, didn’t work either, he flopped in all directions.

I guess it makes me so sad that there are NO PRODUCTS out there that can make life easy for a child with a disability like Nathan’s. And when you compound that with the fact that no amount of therapy seems to even touch him – sometimes it just makes me sad. I read blog after blog and post after post where people talk about the progress their kids are making… and it seems like no matter what we do, Nathan just can’t seem to gain control over his body.

I’ll stop whining now. I guess it’s just one of those days. I can’t even blame pregnancy hormones…these days creep up on me every so often, when I allow expectations to enter my life. And now that I’ve had a good cry – I’m off to bed.