Showing posts with label gains. Show all posts
Showing posts with label gains. Show all posts

Thursday, April 24, 2008

Update on us

Grunts? I will take them.

It seems my little monkey is truly trying to communicate with us more than ever before. When disciplining him it goes something like this:

Me: Don't touch
Him: (Insert grunt here)
Me: I said don't touch the _________
Him: (Insert more grunts here)
and so on.

It's annoying, but very cute that he is trying to "answer." He just can't find the words.

We have recently given him "I am sorry" and "OK mommy" to work with. He already picked up "I am sorry" or like he says "A- sorr."

There is continued progress in slooooooooooooooooooooow teeny steps.

He has also been saying "Are you OK?" instead of "I am not OK" It's his FIRST ever attempt to tell us something is wrong. Therefore he says "Are you OK?" and we reply "Are YOU OK?" and then there is silence, but at least we now know when something hurts or is wrong.

He actually had a fever on Tuesday morning and he told us in the middle of the night with his "Are you OK" phrase. He stayed home from school today and he was doing his "nose" stimming  Then he said "Are you OK? Ears!" so that's some progress, right? In the past, he has complained about his ears, but each time we take him there is no ear infection. I'm not sure what is going on there. Hmmmm...

In another improvement as of late, he is now drinking completely from cups without any prompting! Such a simple thing that took so long to master.

I am anxiously awaiting for summer to begin to start his 20hr ABA weeks. I have high expectations from this, being that 10K will be going out the window. :( It is the most expensive therapy yet!

We took away all soy! The only thing remaining now is soy lecithin. That's it! Soon we will find a nice recipe for air; there is not much more left!

Oh and this is the best one: He can now draw a happy face! Yup! He says:
"Circle, 2 eyes, nose, and a happy face (smile), ears and hair!"

They have been teaching him at school. I asked him to draw a circle and he drew the happy face and I could not believe it!

So, all in all, it's been going good. Still very slow and have not found our miracle but I will take anything that comes our way!

Tuesday, January 15, 2008

So quiet...and the mouse

This past week has been pretty much QUIET.
I was so excited with each week of gains we had been having, but nothing this week.

Is this the plateau I was worried about?
I hope not.

We leave to Disney World on Thursday!
Let the packing begin!

He has been on the Disney website staring at the castle over and over.

He doesn't understand when I tell him that we are going to see Mickey and the castle.

He just gets excited when the fireworks shown on the website begin.

He also loves the Mickey Sing-a-long video, filmed at the park.

Since he's starting to understand the days of the week a little bit, I keep saying "Mickey on Friday." But, he just smiles, skips away and moves on to something else.

We visited last June.
He did pretty good and had a good time.
Fingers crossed for another good trip.

The hotel is lined up, refrigerator and microwave reserved for all of his special food and supplements. We are taking the toaster oven and a cooler with all his stuff.

I have my photocopy of his diagnosis as a back up as well as last summer's Guest Assistance Card, which was a blessing! Hopefully this will make it easier to get a new card without any hassle.

It is supposed to be in the 50s at night, brrrrrrrrrr, remember we are Florida residents. 50 is really cold for us. I just hope it does not rain. :(

We have booked 2 character breakfasts too!

Getting excited but as usual, nervous about all the what ifs.

Will post back soon.

Wednesday, January 9, 2008

Oh yeah!




More news:




-  Requesting "lunch time" and " dinner time" versus just the usual "crackers" which really means "feed me."




- When scolded for touching the TV he looked up and said "No, it's OK!". He has never defended any actions he has been in trouble for. Usually there is whining or crying involved, not words!


- Rode the carousel at the zoo! Twice!

- While watching a show at the zoo, he had a snack, bounced to the beat of the music playing AND clapped his hands without being prompted. Usually I have to remind him to clap! Not this time!




- On his first, second and third day back to school (today!) after the break, the teacher reported increased verbal skills, interest in the other kids, better eye contact and no whining/crying all day long! 

- Went on a field trip to a farm in school in the big yellow school bus and sat with absolutely no problem.




- When I picked him up from school, he requested "I want yellow school bus" to which I had to say that perhaps "soon," though really I felt like stealing the bus and taking him on a ride. It is huge that he requested this!




- During nap time, requested "MY socks." # 1 He never requests anything at nap time # 2 If he would, he would have just said "socks" # 3 He doesn't say "MY" anything. This was his first MY request!




In the words of Queen:




"Is this the real life-


Is this just fantasy-


Caught in a landslide-


No escape from reality-


Open your eyes-


Look up to the skies and see-"




We are ecstatic!


Can it really be that all of this is happening?
Then again, tomorrow makes one week from the parking lot tantrum incident. 
Let's see what tomorrow brings.
Fingers crossed!

Thursday, January 3, 2008

The fog is lifting!




Got 2 Urine Toxic Metals Test results back.

They show he is now letting out Mercury (what?), Arsenic (what?) and Thallium (what?) amongst others. I read what Thallium is and I cannot believe it. Some people use it to poison others! All of this leads me to confirm, even more now, that he cannot get rid of any toxins naturally like most people can. At least in his case, this all makes sense and the proof is in the results. Actual results on paper! 


On a good note, the changes these past 3 weeks have been remarkable. I still cannot have a real conversation with him, but his speech in terms of scripting (repeating songs and movie lines) and requesting have doubled! He is still stimming and a little hyper BUT:


- He no longer just says I -PAUSE- WANT -PAUSE -PRETZELS. Now it flows and he just says it all like he has been saying it forever.

- Eye contact is amazing and he is starting to string phrases along from the ones he knows already, but all at once "Mommy, come with me please, I want lunch time" HUH? What? You want lunch time? WOW! I could not believe it. I said "What do you want? Bananas? Tots? and he said "CHICKEN!" He got it, of course.

- He has been walking around the house like he has never been here, almost like studying it and learning every angle!

- Playing with toys he never even touched before!

- Jumping from his trampoline into the ball pit like all the kids do when they come here and he rarely ever did.

- Attempting to read everything he sees.

- Labeling everything he sees.

- Singing out loud, all day long. Enough to tempt me to ask him to be quiet, but I would never! lol Sing, sing! lol

- He is just sooo happy all day long.

- He has been accepting of the "open a gift" concept.

- Lastly, he is attempting to ride his new scooter (which requires tons of coordination) and is succeeding little bits at a time!!!

Perhaps he will hit a plateau or nothing else will happen, but for the first time in a LONG time I am really, really truly hopeful. It truly is amazing to experience.


Just wanted to share

Wednesday, October 10, 2007

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?