Wednesday, October 31, 2007

Happy Halloween

What a great day. Jonathan had a costume parade at school. I decided to go last minute as I was concerned that he would notice other parents and felt sad that we were not there. So I went and boy was he happy to see me. That was priceless.

I ran into Jonathan's school teacher and she stopped to tell me that something quite extraordinary had happened yesterday. Jonathan was leading a group of 5th graders and they were doing what he was telling them to do. She said she would give me the details next week in the parent-teacher's conference, but she and the other teachers were so very proud of him and she wanted to share that with me. Later today, she emailed me and told me another story that took place today:

"Jonathan spent recess playing with JXZ. He seemed to be having a blast. As we got in line to come in, he turns to JXZ and says, "I want to be your friend everyday!" JXZ smiled and said, "Me too!" This was great! I just love the sweetness of kindergarten!!!!!!!!!!!!!!!!!!! Jonathan is becoming quite social. :>)"

That brought tears to my eyes!

We went trick or treating in the evening. Jonathan and Vanessa were so excited to go out tonight. Jonathan was dressed as Shrek. Vanessa was dressed as Ariel. And their friend A. was dressed up as Batman. A.'s mom was there facilitating the kids while I was taking pictures. Daddy dressed up as Darth Maul and walked with Vanessa. She had high heels and I was terrified that she was going to fall down on one of the steps. But she didn't. They had a blast. We walked to about 20 houses. And then the kids fought to give chocolates to the kids coming to our house. Great evening.

Tuesday, October 30, 2007

Happy and Engaged

Jonathan came over to our bed very early (2am). He did it yesterday too. I cannot remember the last time that he did that. The only reason I can think of is that it was a bit colder than usual.

Today Jonathan was in a very good mood, from the moment he woke up to the moment he went to bed. When I got home, he came to give me a hug. I had not even approached him to say hi, and he came and hugged me gently and said hi. That was a very nice welcome.

He has been very interested in activities lately. Activities that are not necessarily related to electronic toys. He wants to play all the time. Yesterday, he pretended that he was a wizard and converted me into a pig, then told Vanessa that she was a witch and Vanessa converted him into a frog. Then he pretended that he needed a vial to get back to normal. Today, when I got home, he wanted to play in the backyard with Vanessa. They went outside to play for almost an hour. He then ate dinner and asked me if he could play a little bit of playstation. Even though he can now reach to put the CDs in the device, he asks first. That is very reassuring.

I started him on melatonin tonight. Just 1 mg. Let's see how that goes. I think that is the last piece I needed to implement for the Vitamin K protocol. I read 2 days ago that Yasko feels that children with the ACAT mutation may suffer from high oxalates. She recommends vitamin K2 among other things. Not as high as the ones I am following, but she already figured it out. Although I have not done the last set of mutation test, Yasko believes that Jonathan has the ACAT mutation based on test results. She has made comments in 3 of his tests results. So I feel that the high vitamin K protocol is another piece to Jonathan's big puzzle.

Here are some pictures from tonight's evening play at the playground:

Sunday, October 28, 2007

Starting to Eat Vegetables

Since I can remember, I have been telling myself that I need to teach Jonathan to eat more variety of foods, including vegetables. As a baby, he was great at eating his veggies baby food and then fruits. But as his symptoms got worse, so did his diet. He craved rice carbs and started to reject vegetables and most fruits (with the exception of bananas and apples).

For about 2 weeks I have been researching what to do about his gut, as I know that that keeps being one of his major problems. So I reached out to several yahoo groups and everything pointed back to GF/CF SCD (specific carbohydrate diet). Yasko recommends GF/CF low protein diet. So I feel a bit lost. Nonetheless, one thing I know I need to work on is getting more veggies and fruits in his body. I'll worry about the protein next month.

All week I have been giving Jonathan different veggies. He gagged the first 2 days with the carrots and broccoli. But it is getting easier and easier. Today he ate a carrot, broccoli and cauliflower. And I gave him a small piece of tilapia fish (I know, I am trying to get the mercury out and the last thing I need to give him is fish, but I want him to learn to eat everything), and he ate it and liked it. Big progress.

This past week, Jonathan has been behaving very well. He has surprised us with new behaviors and language. For instance, all week he has been interested in drawing and playing with pretend toys and has not played with his computer or leapster. On Friday, he did not suck his thumb all afternoon and just a small bit before dinner. He has been playing with Vanessa and they have been fighting a lot because they want to do opposite activities. And today, he wanted something, so he went to my dad and told him in his ear (as a secret) to help him put a movie in the basement. He had never done that (speak a secret into someone's ear spontaneously).

We spent the weekend at aunt Nelci and uncle Billy's house. Jonathan was very playful. It was raining, so he watched a couple of movies. But as soon as the sun came out and we asked him if he wanted to go outside, he ran out and told me that he wanted to go outside and play. He and Vanessa played with the dog's agility training equipment.

Jonathan is able to tolerate the VSL#3 probiotics. The first week was rough, but he is doing rather well.

Today I noticed that he cried a lot (usually sign of detox) and his tongue was whiter than normal (usually sign of bacterial infection or detox). We'll see how it is in a couple of days.

Monday, October 22, 2007

5 Weeks after HBOT Ended: Very Engaged

This weekend was great. We took the kids on Saturday to an amusement park and they had a blast. Jonathan was very interested in all the games, the roller coasters (for kids), the caves, everything. It is the first time that I see him so curious and excited to be in an amusement park. Last year at Disney, we suffered trying to get him to pay attention to Mickey Mouse. This past Saturday, we could not keep up with him. As soon as we were done, he would ask "what's next? I want to play another game". Music to my ears. Here is a video clip and some pictures.

Jonathan has been on the K2 protocol for 1.5 weeks. He seemed off from Wednesday of last week until Saturday morning. The teacher even made a comment that he seemed a bit different. But since Saturday afternoon, something has changed. It could be HBOT, or it could be K2 or both.

I received his Plasma test results. The kid is not absorbing much of the minerals that I am supplementing. And his calcium is in the high red zone, which I don't supplement (and he doesn't drink milk). Therefore, the high Vitamin K protocol makes sense. He cannot channel the calcium appropriately. I have removed all the morning gut herbs and I am just going to give all the other supplements to see if the vit K protocol works even better.

Tonight we went to a restaurant with our friends and their kids and his interaction was phenomenal. After eating (he was very hungry), he played with the kids all evening. He followed them. They joined 2 birthday celebrations. He noticed everything that was going on and told on one of the kids. Amazing. Tonight was amazing form me to witness. Whatever that, I hope it lasts.

Then, just before going to bed, he asked if he could play playstation. We said 15 minutes. Then, went I returned to turn it off, he said "mom, how can it get rid of the sister?". I think this is the first well thought-out "how" I have ever heard him say.

Monday, October 15, 2007

4 Weeks after HBOT Ended

Jonathan is making a nice come back. He had regressed a bit after we finished the HBOT, but I am starting to see more language but even better, more understanding of what people think and feel.

I have to add that I started him on the high Vitamin K protocol late last week. I added 5mg a day of vitamin K2, increased his Cod Liver Oil to 10,000 IU of Vitamin A, increased his magnesium citrate to 300 mg, kept his Vitamin E at 400 IU, and added the new probiotics VLS#3. The teacher told daddy today that she noticed that Jonathan was a bit more timid and put on his hood a lot. That is his normal behavior when he is having yeast die-off. So that tells me that the VLS#3 is working. His stools were softer than normal and stinky. So I am going to keep an eye on that for the next week or two. If that has not gotten better in 2 weeks, I’ll order another stool analysis to check what is going on. The one item I have not added is the sodium bicarbonate which I know is critical. I ordered it from Klaire Labs, but I bought the cooking type, and I’ll start giving it to him tonight.

I took a urine sample today to check if he is dumping metals and how his minerals are doing. I should have the results next week.

Regarding behavior, this weekend was a bit odd. I know a side effect from the Vitamin K protocol. We took Jonathan to a play date with 6 other kids (3 of which were his age). He at first didn’t want to play. I fed him and he decided to play 15 minutes after he finished eating. They were playing pirates and other pretend games and he preferred to play the piano instead. He did join them when they played hide and seek. And at times, he was argumentative with them, demanded them to do certain things and when they didn’t listen, he spoke like his teacher again. I noticed that he starts to pretend he is his teacher when he tries to put order. But on Sunday, he did not play like that with Vanessa at all. As a matter of fact, they were chasing each other and touching each other saying “gotcha!”. When it was Jonathan’s turn to do that, I was scared that he was going to push Vanessa to the floor when he reached her. But instead, he barely touched her back and said “gotcha”. He was so gentle. Then they wrestled and again Jonathan was very gentle. Then Vanessa fell down and hit herself and Jonathan was so concerned. More than he has even been.

Today, I finished painting his room. He wanted to help and I let him help a bit. Then, as I started to clean up, he put his hand on the wet wall and fell down to the carpet. I saw it and said “Oh no Jonathan”. I did not raise my voice, just said those words. He was sooooo concerned. He kept telling me “I am sorry mommy, I am sorry. It was an accident. I am sorry” and his expression was so genuine. I told him not to worry, that it was an accident and took him to the bathroom to wash his hand. Needless to say that he did not touch the wall again J.

He has been showing a bit of his old OCD – playing with music CDs, putting DVDs in the DVD player on and off without a reason. I don’t know what that VSL#3 is going. Too many microorganism (225 billion). It is strong. I started taking it myself and I had a bad cramp that lasted over an hour. I guess the discomfort translates differently for kids on the spectrum because he has not complaint of pain, but has been behaving differently.

Tuesday, October 9, 2007

More Observational Than Usual

I was worried that he might be a bit regressive today after adding all the supplements, but he wasn't really. He woke up late and was very slow today. But I guess as time progressed, he kept up with it because when I got home, he was energetic and in an good mood.

He went to McDonnald's with Abuita and Vanessa and played there for a while with his friend A. When we got home, he started playing with a dry-erase board I have on my refrigerator. At school, his teacher uses a white board and he pretended he was at school for a while and quizzed us. He was very interactive. He included Daddy, Grandpa and me.

I got a cold and a hoarse voice. When Jonathan started asking me questions, and I started talking back to him, he said "Mommy, why are you pretending to be a man?". Oh my, was that funny. I had to explain that I was sick and that is the way my voice sounds when I have a cold.

I noticed today that he conjugated his verbs better and used more pronouns than usual. He has only had 1 EDTA and 1 DPMS and I increased his Vitamin A and K2 yesterday. I feel it is too soon to see changes, but they might be related. Or it might the effects of the after HBOT healing process.

Monday, October 8, 2007

3 Weeks After HBOT Ended

Jonathan is doing better than the past 2 weeks. He is back to being interested in new things like cutting a pumpkin open, and being at the pool. This weekend he played a great deal with other kids. So having him back to the way he was a few weeks back is comforting.

So I decided to start the EDTA/DMPS chelation. I have enough for 2 months and I started with one EDTA suppository on Friday and one DMPS suppository on Sunday. It is too soon so see any changes. I also increased all his minerals.

Today I switched to Kirkman Lab's Cod Liver Oil. It has more Vitamin A than the other brands and I am going to give the high Vitamin K2 protocol a try. I purchased the VSL#3 probiotics, but it is so strong that I'll wait until the weekend to start it , in case he gets sick.

This weekend we were really bad and broke his GF/CF diet. I noticed on Saturday after he ate Gluten that he started to make noises with his throat like he had something in his throat. A few hours later, he was okay. I noticed the same thing yesterday and today. I am going to do a better job to keep him off gluten and casein as it is obvious that he is still sensitive to them.

Thursday, October 4, 2007

Wants to Be SHREK for Halloween

It may seem like such a trivial thing, but Jonathan had NEVER cared to dress-up as anyone. Last year, it was sad for Daddy and me to go costume shopping with him as he didn't care. We picked a costume that he wore. But he didn't know what it was for, he didn't know about Halloween. He enjoyed trick or treating, but we taught him what to say and where to go. He was so much in his world last year. This year, he is so aware of his surroundings.

I got him a calendar with magnets and he put all the day in the calendar yesterday. When he got to the 31st, he came running to me and said "mommy, October 31st is Halloween. We go trick or treat in Halloween and get candy". I know that the Kindergarten teacher is preping them, but the fact that it stuck in his head is great.

Then today we went to Toys R Us to get him a new backpack because his is in bad shape. On our way, I asked him who he wanted to be for Halloween. I honestly expected an answer like "ugh?". But instead he said "Batman". And I asked him why Batman. As he started to answer he said "No mommy, I want to be Shrek". Then Vanessa said "and I'll be Princess Fiona". That was cute. When we got to Toys R Us, he saw the costumes hanging and got attracted to them. Never before. So that was a nice sight for me. He, daddy and I looked for Shrek but nothing. So I tried to persuade him to be someone else, but he insisted that it had to be Shrek. We went to see the backpacks and he didn't like any of the ones they had. It is like Vanessa now. He used to not care, how he had to pick out his on things. Wonderful - stressful for us parents but wonderful.

We then went to Target and they had a nice selection of backpacks. Daddy liked one in particular and I liked another one. But Jonathan didn't like any of the ones that we suggested and he picked a Superman backpack. And he insisted to wear it until we had to pay for it. Vanessa saw a section full of pumpkins and wanted to go there and Jonathan did too. The observed all of the pumpkins and played with the candy bowls that have a hand that moves. At first they got scared with the hands, but Jonathan ended up liking them. Then he saw small balls that look like eye balls and insisted in getting them. When we got to the costumes section, they didn't have Shrek and Jonathan didn't care for any other character.

So I'll have to order it via the Web. And it makes me incredibly happy. Last year when my friends would say "I have to go shopping for XYZ because my son wants just that", I remember thinking why do they bend to the kids' requests? And on the other hand felt a bit jealous and out of place because I could not relate. And although Jonathan is still not behaving 100% age appropriate, he is so close that I can now relate. He doesn't forgot when he asks for things now, just like Vanessa.

One thing that we have not achieved is his interest for regular toys. I showed him pirates and dinosaurs and he simply does not care for them. He wanted another Leapster cartridge, but we told him that no more. Hopefully by this time next year, he will be playing with those toys.

Wednesday, October 3, 2007

King of the Day

I really like Jonathan kindergarten's teacher. She has very interesting activities to teach the kids. Jonathan likes going to school like he never did before.

This morning he forgot his name tag, and got very anxious at school. The assistant in the SACC program told Daddy a couple of weeks ago that Jonathan didn't need a name tag because everyone in school knew him. I wonder why that is. Perhaps because he has been going to the same school since he was 3 years old (special education preschool). However, Jonathan insisted that he needed it. Daddy called me and I brought it over. Dad went back inside to put it on. Dad described that Jonathan's expression of happiness when he saw the name tag was priceless. He put it on and joined the other kids in play. He really needs it to feel secure it seems.

When I got home, I ran into a beautiful surprise. Jonathan was King of the Day today. I am not sure how the teacher selects the kids to be king or queen of the day. But he was very proud of it. The booklet that he brought home is a collection of his portrait painted by each student in his classroom (26) and by the teachers. He wore his crown proudly around the house. What a beautiful way to teach kids to care about each other. After looking at every picture, I happily told Jonathan how great the booklet was and he said "everyone likes me".

What a wonderful gift. I will treasure it forever.

Jonathan got another green card. He has 8 now. Just needs 2 more to get his first diploma.