A little piece of heaven

Well guess who’s as addicted to Scrubbs as I am? Yes, you got it…Mr. Smiles. He was in STITCHES today watching Scrubbs.

So first of all, thanks to everyone that commented or emailed – We love you guys! I read all your comments and emails to Nathan and we were both happy to know that people care. Blogging won’t be quite so lonely any more 🙂

Now let me tell you about cheezits, chocolate and scrubbs.

Today, we had the most AMAZING day ever. Nathan woke up happy as a jelly bean. He ate all of his GFCF pancakes with gusto, drank all of his vitamins/supplements with his morning rice milk, and proceeded to impress Julie his wonderful PT with his newly acquired strength.

He went on to sit back with the ABR machine on his chest while Pati did some ABR on his jaw, while watching Mickey Mouse of course.

Then, since he was too excited and fidgety, he got to bust out of his chair to watch Jack’s Big Music show while on his belly. But first he got to use his switches to make a choice between Wiggles and Jack’s and Jack was the big favorite.

After some time of kicking on his belly while watching TV, he started looking tired so we figured it was time for his morning nap. We plopped him in the Hyperbaric Chamber where he happily slept 2 hours.

Lunchtime found him eating some delicious gluten free casein free pasta with vegetables and chia seeds, followed by prune juice mixed with VSL#3 probiotics.

Then we jumped in the car where he chose to watch Mr. Incredible while we drove to Carousel Ranch. He impressed Miss Katie with his strength, head and trunk control while riding a spirited mare.

Our return home confronted me with a difficult choice – risk ruining a beautiful day by introducing his new program from the Australian Institutes of the Achievement of Human Potential, or go with the flow and wait another day to start.

My new approach to life about facing my fears encouraged me to start today, so we did. And lo and behold, not only did I find that Nathan didn’t complain about the program…he enjoyed it! Of course there was lots of hugging and kissing in between activities to encourage the enjoyment! Even the patterning went well! We put him on the patterning table with Lilo and Stitch playing in the 60 inch projection TV. And while Owen and I patterned away Mr. Nathan giggled and giggled. I have to say I never believed in the pot of gold at the end of the rainbow but today, I do.

Such a stellar performance demanded a reward so he ate a whole banana which I helped him hold and bring to his mouth. And what better way to relax after such hard work than jumping in the spa? So we sat in the spa for about 30 minutes with Nathan in his Danmar collar just chilling and babbling away.

After the spa and a nice shower, it was time to play with daddy. Owen and Nathan went out shopping and then to the park, while I chilled on the hammock basking in pride.

After their return, Nathan finished the rest of his pasta free pasta for dinner while watching scrubbs with us. And how could the day end any better but to hear him laughing and giggling at JD and Turk’s immaturity and silly pranks.

Promptly at 8:15 he pressed “night night” on his switch and we figured it was time. So Owen plugged him into the ABR machine and off he went without the slightest complaint.

And I have to wonder – what more can a mother ask for????

Oh by the way..the cheezits and chocolates weren’t for Nathan…they were for a well deserving mommy 🙂

Today I was wondering if anybody actually ever reads Nathan’s blog that I’ve hijacked 🙂

I try to post so I can share about Nathan and the stuff we’re doing, and with the hopes that our experiences will help other families.

But today I’m wondering, does anybody actually read this?

If you do, Nathan and I would really love it if you left us a note/comment.

Thank you!!!

There are so many things I want to share that I’ve learned in the last few days and I wanted to try and organize them into cohesive thoughts and posts…until I realized it’s best if I just write it all out here.

Everything started after we came home from France. For one whole week I was in a complete panic, wondering how to start the ABR, integrate the Hyperbaric, and do everything together. Consequently, that first week we didn’t get much done. Then starting last Saturday we went to NAPA and got to meet the guys from the Australian Institute.

So tommorrow, we start our new way of life.

Nathan’s day is going to look something like this:

7:00am Breakfast w/ switch
8:00am ABR – Jaw & Chest
8:30am Natalie OT
9:30am ABR – neck & abdomen
10:00am Nap in Hyperbaric Chamber
12:00pm Lunch w/ switch
12:30pm Vital 818 708 7704
2:00pm Reach
3:00pm Yoga
3:45pm Bright Star PT
5:00pm Dinner w/ switch

Any “in between” or transition time, Nathan will be on the floor on his belly. And this is one of our thanksgiving miracles. After that first day, when Tim and Chad were with us and they forced me to put Nathan on his belly, Nathan screamed his head off for hours. But it seemed that after that day, he understood that things were different and a few changes were going to happen in his life. Since then, I’ve been putting him more and more on his belly. He protested a little the first day, a little less the next, a little less the next. Until yesterday and this morning I can put him on his belly and he will more or less lay happily on the ground. Depending on the position of his arms, he will start kicking and moving around. So miraculously, he seems to understand that he will be spending more time on his belly and according to Chad and Tim, this is the single most important thing we can do for Nathan.

The next miracle happened on Thanksgiving. Nathan’s wonderful speech therapist came to our house on Wednesday so she could train us on the communication method that I showed on a previous video. She wanted us to adapt it to our house and make sure we were using the system properly. She gave us some great tips. So on Thanksgiving I started putting the switches in front of him every time he was in his chair. Then at about 11 am I programmed “Night night” , “Eat” and “Drink”. He was watching TV with the switches in front of him. All of a sudden I heard the switch go “night night”. So I ran over and asked Nathan if that’s what he really wanted. He hit the switch a few more times. So I took the hint and took him to his room and put him in his crib. He went right to sleep! So my little boy is now learning how to communicate with us and let us know his needs. DO YOU KNOW HOW HUGE THIS IS!!!??? We’ve continued using the switches over the weekend and he has now been telling us when he wants food, drink, and when he’s all done. So, if you look at his calendar, every meal is accompanied by switch time. Since he’ll be in his chair during meal times, we want to use that time to let him communicate with us and to strengthen that skill. Additionally, Tim and Chad suggested that we put the spoon in his hand and when we feed him, we should always motor him through the process. So our plan is to put the spoon in his hand and motor him through about 3 or 4 spoonfuls, then take it out and let him hit the switch to tell us he wants more food. Then we put the spoon back in his hand and repeat all over again. Same with a drink.

Our third thanksgiving miracle is that Nathan fell asleep in the Hyperbaric chamber! We tried this a couple of times last week and he protested VERY loudly. In the end we had to take him out both days without him taking a proper nap. But on Friday we tried again and he was able to fall asleep in the chamber! The reason this is wonderful is that now, we can use those 2 hours that Nathan would be sleeping, and get him to benefit from this time in the Hyperbaric chamber. And we can use the 2 hours that he would’ve been in the chamber while awake, for other things. So we earned ourselves 2 hours a day! I wasn’t sure we’d be able to convince Nathan so I am so grateful that he relaxed into it.

Fourth, we are still doing well with the GFCF diet. We only broke the diet on Thanksgiving because aunt Rimma made amazing food and we didn’t want to be picky. We figure it’s okay if we break his diet once in a long long while. So currently in the mornings he eats GFCF cereal mixed in with banana: Bob’s Red Mill. For lunch and dinner he eats a protein (chicken or meat), 2-3 vegetables, and a grain (rice, quinoa, amarinth, or buckwheat). We are buying all his stuff organic. For snacks, we give him fruit. We are trying to avoid all processed foods and the only sugar he is consuming is sugar in fruits. So no more chocolate, ice cream, or junk food. It’s been a bit of a battle getting Owen on board with this one and I have to be ultra vigilant to make sure he doesn’t sneak anything to Nathan but so far we seem to be doing well with the diet. Later, I’ll post a list of the supplements we’re giving him, but that will be a separate post.

We haven’t started him on the G-therapy yet as they want us to withhold meat and if we take away meat from Nathan’s diet I think that would be too much. I am going to meet with a nutritionist to go over all this and see if there is a way for us to get Nathan to be GFCF and vegetarian at the same time.

I am excited to start the new sensory program given to us by Tim and Chad of the Australian Institute. It will contain patterning, a lot of swinging, a lot of touch and sensory input, masking, flash cards, and oral/facial massages. Initially we will only do one series of the program a day, probably for at least 1-2 weeks. Then we will increase to 2 series. The goal is to do at least 3 or 4 a day. Once we increase, I will have to figure out some things to drop as we physically wouldn’t have time in the day to do it all. But I have so much faith in their program and think that with their direction and support we will be able to make it work.

Finally, one thing they reccommended and that I have started doing is to assume that Nathan understands a lot more than we give him credit for. They told me to start talking to him all day throughout the day as if he understood. So I have. I talk to him in the car, throughout the day as we’re doing stuff, etc. I let him know what I’m doing to him, what I’m doing with him, where we’re going, what things are, etc. I am talking to him all the time. And it’s been really nice! Maybe I’m imagining it but I feel like he understands what I’m saying and is enjoying all of the explanations that I am giving him.

So this includes a lot of my udpates. I will post more in the coming days with more specific information but for now, at least you can get an idea of what’s going on in our lives.

And if you are reading this and have sent me an email of phone call lately, and I still haven’t replied, I AM SO SORRY! I will reply early this week.

I am working on a new method to maximize my own time and do things more effectively so I am hoping that I will be more available once I get myself more organized.

Thanks so much for checking in on Nathan!