A little piece of heaven

I sit here listening to Nathan coughing and Belle whining. She’s had a fever for 3 days and is just miserable. I took her to see Nathan’s doctor today and got another talking to. She was furious that i haven’t vaccinated Belle and thinks I am putting her in danger. I asked her for a compromise – I would vaccinate her if we can slow them down. She agreed. As soon as Belle is well we will give her the shot against meningitis. In the meantime she thinks Belle has a nasal infection so she gave her augmentin. And apparently during one of the last illnesses, it turns out to have been pertussis so the doctor was really upset because she wouldn’t have gotten this if she had been vaccinated. But hey, there it is, she got it and was fine, no worse for it, honestly the vaccines scare me more than the illnesses. But I can agree to the meningitis shot as I now meningitis can be deadly. So sweet Belle started on Augmentin today and I am hoping she will start feeling better soon. I am afraid Nathan may be coming down with it too as he has been coughing non-stop for the last couple of hours and doesn’t look like he wants to do much of anything. I am tired of being sick – it’s been one illness or another for 3 months now!

So I finally capitulated and ordered Nathan a Zippie Iris wheelchair. I was trying to avoid this type of wheelchair but it now seems unavoidable. The Thevo Twist would still leave us grappling with “The Head” so I decided to give in, buy a wheelchair ramp, and get the heavy duty chair that will give him maximum positioning. The final step is to decide whether we will use a regular seat or a custom aspen seat, which I will be deciding this week. Then it’ll probably take a couple of months to get through insurance, and then Nathan will finally have a fully supportive chair!

I found a suit therapy clinic – 5 minutes from my house! Can you believe it! I went to talk to them today and absolutely fell in love with the therapist who runs the clinic. She is very well trained, very smart, and gave me incredible accurate information regarding Nathan. We are going to start kinesiotaping him next week, which is something I’ve been wanting to do for ages. She is also going to teach me how to use his theratogs so he can start wearing them. She doesn’t have time to do an intensive with Nathan so we are going to start by seeing her 3 times / week for 2 hours to see how it goes. I feel hope stirring in my veins. Powerful AND Sustainable? Could it be? AND they take our insurance? Can you hear it? The hope cascading through my heart? I’ve always loved suit therapy but have always wondered about the sustainability of it. But since this clinic is LITERALLY 5 minutes from my house AND it is affordable as insurance covers most of it…sustainable becomes a reality!

Today I programmed Mrs. Potato Head in Nathan’s dynavox and I am excited to play with him tomorrow. He was excited when he saw me taking it apart and I could tell he was desperate to play with it. I will try to film him so you guys can see him.

Anyways, we have one more Christams party to go to this week and then we start looking towards the New Year. Next week we’ll be heading up to the snow (Mammoth) for a few days. Owen and I hope to leave the kids with family so we can hit the slopes one day. Wouldn’t that be awesome?

I am keeping away from the blog a bit and using this time to recharge. It’s been a very intense, charged year and I feel tired these days. Not just physically but emotionally and spiritually tired. I spent a few days laying around the house and not doing much of anything and really enjoying it. I feel the need to stay still, quite, introverted in order to give my batteries a chance to recharge. I also feel like I need to internalize many of the lessons I’ve had this year and put my life into perspective. My therapist said it really well the other day. I have come to a point in my life where “being” has become more important than “doing”. A total paradigm shift for me, and one I have to learn to live with. It’s different, I confess, but lovely all the same. So I apologize that I haven’t been blogging as much, I just really need to recoup and recharge and refocus. Enough re’s for ya?

Hope you have a lovely rest of the week and look out for a couple of Dynavox videos this week!

Merry Christmas everyone. It’s been a jolly time at the Andrew household. We have sang christmas carols, eaten lots of candy, danced to zumba and played bowling with friends and family, we shared Christmas eve dinner with my side of the family and Christmas day with Owen’s side, we enjoyed a quiet morning at home where the kids opened and loved their presents. It’s been a wonderful holiday. I hope you have enjoyed it as well!

My favorite Christmas present is this one:

We’ve had a wonderful time.When I think of the last 4 Christmases what I wished for had to do with healing and development for Nathan. In fact last year at Christmas we were at the end of our 3 month stay in Chile where Nathan was working with Ramon Cuevas doing CME (Cuevas Medek Exercises). His rehabilitation was still the most important thing in the world to me.

This year my wish is for more of this:

More laughter and joy and happiness. More acceptance. More family unity and enjoyable times and memories. Oh what a difference a year (and a baby) makes!

This has been a very enlightening few days for me. It started with our XBOX contest. From all of the input I received I learned so much…primarily that there are a million ways to use the dynavox creatively to help Nathan learn to communicate. It also taught me that it was time for a paradigm shift.

For the last 4 years I have been almost entirely focused on Nathan’s physical development. I figured that since children spend the first 2 years or so developing their motor skills, that this would be my first emphasis with Nathan’s rehabilitation. We have come to a great strategy and I believe we have the best of all worlds in place with his physical program.

Now it’s time to focus on communication and cognitive development. I feel like an infant again. Now that I finally feel I have a handle on physical rehabilitation, it’s time to put that on auto-pilot and go back to school. I have so much to learn! I have to learn about early childhood development, augmentative communication, speech and language pathology, and how to marry these 3 disciplines.

I had hoped to rely on Nathan’s school to provide this. But the last IEP meeting last week proved me so completely wrong. I realized that the school will not step up to this responsibility, so it falls back to me. I plan to do something about it, but that will take time, so in the meantime, it’s up to me to learn the best way to teach Nathan and to help him learn to communicate.

The good thing is we have amazing guides. The people we are working with for Nathan’s communication are wonderful. Now I just have to learn from them and prioritize communication as part of his rehabilitation.

In the meantime we have been enjoying daily outings and get-togethers with family. It’s been so nice to get together with the family every night and watch everyone pamper the kids. Nathan and Belle are the only children in my side of the family so everyone loves them! It’s been a great holiday so far. Now if only someone would go do all my Christmas shopping!