Big Disney news and more updates on us!

Where has this summer gone? Wow.
He starts school in four weeks. What is that? CRAZY I say.

So much has been going on that I don't even know where to start. I think I will have to just post the reader's digest version. I don't think I will have time to get into all of the details.

- Improvements in articulation
- Mastering 8 to 12 piece puzzles patiently
- Copying block patterns on the table versus on top of the display
- Happy, patient and very calm
- Still stimming covering the ears, minimum humming, and fingers in the mouth. I guess his teeth are bothering him and about to fall out? Not sure.
- Can now use yes and no appropriately though it has to be to topics he knows. I can ask "Do you like the Red Sox?" and he will proudly say YES (even though he knows nothing about baseball). Therefore, I know he still doesn't comprehend it all, but we are getting much closer now. I especially enjoy it when I say "It's sleepy time!" and he replies "no thank you." ha ha ha ha
- Continues to use kisses, hugs and "I sorry" to get us to forgive him or get what he wants. Hard to cover up the smiles on our faces when we are trying to be firm and act mad. But it's so incredibly cute!
- Cried the other day when a boy that was here at home playing with him left. He was very upset. He has never cared whether anyone other than mommy and daddy left the house. He was having such a good time interacting with the other boy. We could not believe it.
- He knows my name and daddy's name too!

ON TO THE BIG NEWS!
We just returned from Disney. Yes, I said it. Disney.

Those who read my blog KNOW all about my last Disney experience. 

If you want to catch up read and relive my pain, it's here: http://asdqueenbee.blogspot.com/2008/02/not-so-magical-disney-trip.html

Well, my friends, it happened. The magic of Disney finally happened for us. Maybe it was more the magic of "parents spending too much money on helping a child through therapy, biomedical and pure will" but I will go with the flow here and pretend it was the Disney magic.
The number one change this time? Grandma did not go with us. Sounds mean but boy did it make a difference. Imagine! I was able to call the shots on my own child! What a concept!

I did not make any morning character breakfast reservations this time. We got up and spent hours in the hotel room having breakfast and fixing his lunch and dinners to be with us at all times. This takes forever, especially if you add the supplement concoctions that involve measuring and dividing 18 supplements into healthy fruit smoothies for him to eat after his meals. Phew! What a pain in the you know what!

I took a single burner and toaster oven to make sure all of his food was cooked and stored in stainless steel without a microwave.

We charged his DVD player and had reservations for lunch and dinner at different parks. 

We left the hotel at our leisure. No hurry, just playing it by ear. Other than the meals, we paced everything slowly.

Well, he had a blast!

Here are the highlights:

- As we strolled by "It's a small world," he jumped out of his stroller, looked at us, said "YEEEEES!" and ran to the entrance. We ended up seeing this attraction five times. Luckily not all back to back. Wow! He was so happy, clapping and engaged.

- He rode Dumbo, the teacups, flying carpets, carousel, the train, Pooh, and even met the characters under the big tent! We used the GAC for everything, and it was such a blessing as usual. He loved the parades too!

- We had lunch at the Liberty Tree Tavern near an outlet (for his DVD player). We love it there. While at lunch he said twice "I so happy!" WOW!

- He pointed more this past weekend then he has HIS ENTIRE LIFE. No joke! while at Downtown Disney he wanted to go back to the Lego store and he tugged my hand while pointing to it and said: "LOOK!". Huh? A child with autism pointing? No way! Well, yes way!

- Dinner was at the Plaza Restaurant where we were introduced to the allergy menu. Did you all know about this? A BINDER with all of the ingredients in everything they carry and items not on their list. He tried the Tapioca Buns and had them down before I even took four bites of my meal!

- While we were leaving, we caught a fireworks display which just topped off the night for him. He covered his ears and rightfully so (it was like bombs!), but he had the biggest smile on his face and kept urging at me "Mommy! Fireworks 1,2,3, go!" whenever there was a break in between. Too bad I was not on the control board. :)

- Not ONE tantrum during the Magic Kingdom trip!

- We also went to Epcot, Animal Kingdom, and Sea World. Yup! He rode all shuttles patiently, waited to get on rides and just listened to me like he never has before!

- The aquarium and Nemo ride at Epcot was his favorite. He is still asking for Nemo now. Unfortunately, he now has a Nemo obsession again and has not stopped watching the movie. The plus side of it is that he is actually watching the entire movie which he never did before.

- We also caught the Illuminations fireworks show at Epcot which was just heaven for him.

- Sea World was also very nice. He loved when Shamu jumped and splashed everyone!

- I cannot wait to go back and see if this was real or just a fluke.

- He has grown so much this summer already. The ABA and new supplements seem to be doing a lot of good. It's the first time in a very long time that I am witnessing progress. I feel like he understands a lot of what I am saying. I was able to talk to him about animals and give him lots of information while in Orlando. He gave me amazing eye contact and was so patient the entire time.

- Only time will tell if this will continue but we are finally feeling good about his treatment.

Things coming up for us:

- We decided to continue the ABA afterschool for 10 hours a week once school returns.

It's never-ending, but at least there is a lot of significant progress now that helps us keep going and keep our focus!

The MRI story...

Beep, beep, beep....the alarm goes off.

It is 6am and time to leave for my son's brain MRI.

Exciting stuff, only, not so much. Sigh

I got everything ready and at about 6:40am changed my son while he was still sleeping and carried him to the car. In his sleep haze, he asked for his ABC music CD. Never misses a moment does he? So cute. We arrived to the empty parking lot and got into the waiting room. We signed in and waited for someone to come out with instructions. Once she did, we filled out all the necessary paper work and into another room we went. This one with all sorts of electronics and buttons my son wanted to touch. He did not know what to do, so he just paced back and forth checking out all of the equipment.

I handed the nurse the list of the 15 supplements and vitamins my son takes to make sure there is no adverse reaction to anything they will administer when combined with these. I got the usual questions as to why we give him this and that. I had my binder with me so this time I was able to give perfect answers.The two nurses and technician all looked at me like most people look at me when I talk about any type of intervention, wondering if I have lost all my marbles. I assure them my marbles are great, all there and shiny too! But really, I explain that we see one of the top holistic, licensed doctors and that at some point we have to trust someone to help our child move along. 

They attempted to take my son's vitals, but as usual other than weighing him in (39lbs!) they can't get anything done without him screaming and fighting them all. To administer the versed to calm him down, it took three people to pin him down to the bed and a bed strap to get it done. The nurse slowly administered it with a syringe in his mouth. Not so fun what you get used to doing these days. The second time to pin him down was to apply the IV. That was another session of adults pinning down my little boy. He screamed using all of the words he knows to make us stop: "all done, bye bye, stop, stop it." Completely heartbreaking. By now, the versed took over and he started to get groggy, though not nearly as much as he needed to be. They wrapped a diaper around his hand to prevent him from pulling the IV off and my husband carried him outside. They have this huge trailer with the MRI machine inside. A big, scary, intimidating machine. My husband placed him on the bed and kept a tight hug grip while they administered the next drug: Nembutal. They had four individual doses of which he ended up requiring only two. They gave him one at a time and saved some in case he woke up during the procedure. 

It was frightening, but in a weird way cute to see him fight and slowly give in to the drug because it was like he was drunk. He kept talking slowly and slurring all speech. My sweet boy. He finally fell asleep and they laid him down and strapped him in. They put a sheet over him to make sure he was not cold and asked us to wait in the front lobby. I thought the time would go by slow, but it thankfully did not. Before we knew it, 30 minutes later, we were called in to the recovery room. He laid there out of it completely in sleepy land. The nurse administered 180ccs of IV saline fluid to push the drugs out of his system. He slept through all of it. After finally getting him to drink 3 ounces of water, he was released.

My husband carried him to the car and buckled him in. Luckily, it was only a 12 minute ride. Because he was so out of it, his head was completely bobbed down most of the ride home. We got there and carried him into bed. I got prepared for a 6 hour period of laying in bed with him as he came out of it. Boy was I wrong! Ten minutes after we arrived, he bolted up on the bed and attempted to jump off and run to his room like he usually does except he had no strength in his legs and arms yet and we had to keep holding him off as he fought us off. In his mind, he was strong enough. The nurse told us this would happen, but I had no idea it would be so bad. By the end of 20 minutes he was back to his old self! Just a little more drunk looking. The next 2 hours proved challenging as he did not want to be shadowed and insisted on running all over the house. He fell twice, but luckily nothing bad, just slip and slides. I was completely exhausted. Once we knew he was not wobbly anymore, we finally let him be. Completely exhausted I tell ya.

I wanted to note two things that happened almost right after we got home. As I carried him to the playroom floor and was lowering him to the floor, he looked at me with his sleepy eyes and said "Hello, hello mommy." Huh? This was huge! He has never greeted me. The extent of him greeting me is usually a big grin and running towards me. This time, he deliberately made eye contact and greeted me. I was in shock. I said "Hi baby, how are you? How do you feel?" but of course, no answer. He was in and out of his world and the drug world that he still had in his body. Minutes later he noticed the bandage on his hand from the IV. Usually, he calls bandages "stickers" and he is terrified of them. Taking one off means more pinning down or letting them fall off on their own.This time, he noticed, looked at it and slowly draped his arm over my leg followed by grabbing my hand with the bandage free one to signal me to take it off. I did, thinking he would pull his hand back and he did not. In fact, when I finally peeled it off, he felt the area where it was like he was now relieved it was gone. Mystery number # 2. Why the sudden lucid moments? Was it the IV ? Did that liquid running through his body help in any way? Was it just coincidence? Am I over analyzing this? I think there was a 3rd one, but cannot recall right now. Mommy brain.

At around 4pm, the phone rang. They called to say the MRI results were normal. Really? Normal? That was it. A 15 second call for results. I wish I could sit there with the neurologist and scan every inch of that MRI. I fear they just see this as routine, scan it briefly and push them aside. Not that I want something to be wrong, but it seems so casual that a brief phone call ends the entire MRI issue. I have requested copies on disc to perhaps get a second opinion. I have heard of some of the white matter on the MRIs signaling metal toxicity. Will have to look into this. Can't ask the neurologist because he says he does not believe in magic, as in, don't come to me with any other theories that are not ABA, ST and OT intervention related.

So on with our detective work in the search for my baby's recovery.

Just this afternoon while in the car, he pointed to the DVD screen where the Care Bears movie was playing. He rarely points. could this be another gain?