Monday, July 30, 2007

He Ate Mashed Potatoes

Jonathan is a very picky eater. Since he was a baby, the care takers would tell me that they couldn't fool him and put non-baby food in the baby-food jars without him noticing. As he grew older, he really liked lots of the "gluten" rich type foods, but also some exotic foods like olives. He would eat a large variety of foods and he would try different types of foods. He didn't seem to dislike food based on texture, but rather taste. He even ate mashed potatoes. When he was diagnosed, and we learned about the gluten free / casein free diet, I found it so hard that I only cooked certain types of meals. And Jonathan grew up without trying a variety of foods and he now dislikes everything.

So my new quest: introduce him to new food items every day. Today we had mashed potatoes and he hates the texture. It makes him gag. But I think it is because he grew up without being exposed to it. Today he asked me if I could buy him another Leapster cartridge, and I used that to negotiate with him. I made 10 small balls of mashed potatoes and put it on his plate, along with turkey cut up in squares. He refused to eat it, but wanting the cartridge was more important. He gagged during the first 4 tries. By the time he made it to the 8th ball, he was not complaining or gagging anymore. When he finished, he was very proud of himself (and so were we). We offered more, but he declined (go figure).

No more Leapster: I made up my mind and I am going to take the Leapster toy away from him starting August 1. That is a good day because we start HBOT at 6pm (right after school) and by the time we get home (about 8pm), he will be tired, taking a bath, eating dinner and getting ready for bed. He will cry and moan, but I will tell him that he can play on Saturdays and Sundays only. I will let him play for an hour each day, and then hit the road so he forgets about it. But it is really getting in the way of playing with other toys and people. It is a great learning tool, so I want him to still play with it. But I need to regulate it very closely.

Socialwise, I don't know how he did today. He played quite a bit with Vanessa. Well, they fought quite a bit. Every thing that one has, the other one wants. Here is a picture of a game they play where they smell each other's feet to see which one stinks the most. :) They love playing that game at night right when we are getting them ready for bed. Getting ready for bed can be a very lengthy task at times. But I love watching the kids play together.

Sunday, July 29, 2007

Social Regression

Jonathan's social skills have dropped dramatically the past 2 days. I ran out of Dyflucan (prescription for intestinal yeast killer) last week. And I missed his Methly B12 shot on Thursday and Saturday. Given his history with yeast behaviors, it seems more likely that his yeast grew out of control the past week and reflected this weekend. It could also be that his intestinal strep returned. He has been obsessing with his Leapster toy and adding and subtracting more this week. And he is crying for everything. If Vanessa says something, or touches him or I say no, everything triggers a meltdown. His stools seemed much softer than normal. So whatever it is, it is a gut problem.

Also, given his allergic reaction to the mosquito bytes last week, I feel that his T1/T2 cell ratio is still backwards. It had gotten better during the first HBOT session. He had a mosquito byte then and it did not get abnormally swollen. But one of the 2 that he got last Thursday got very swollen, like in the old days. The Immunosciences Labs test reported that his Natural Killers are below normal. They are higher than what was reported a year ago, but still under normal ranges. So he still have autoimmune problems.

I mention this because it might be that his gluten intolerance is back, hence his behavior. I am going to contact his DAN! doctor and request an IgG food allergy test kit. The first one we did was over 2.5 years ago. The Immunosciences Labs results from last April indicated no gluten or casein intolerance in the blood. So I decided to allow him to eat gluten at school during the summer. But the IgG might right now be more helpful because I get if there is a reaction, it means that he still has a pretty severe leaky gut. Hence all the strange regressions/behaviors.

I feel like I am starting from square one, but my financial situation is dramatically worse. So I cannot spend the same amount on tests as I did before. I am going to do a Comprehensive Stool Analysis test this week (I already have the kit) and I am going to do the IgG test. And re-adjust supplements and diets based on those items. We are going to start HBOT again in a few days, and it scares me that he might regress because the HBOT might feed microorganism like strep.

Social Interaction Observations

Jonathan last weekend was incredibly social. He spent the entire weekend playing with our friends' kids for hours. It was awesome to watch.

This weekend however was a different story. Yesterday we went to a park and he didn't want to play in the playground. He just wanted to walk around. Stuff that he used to do years ago. He did play in the maze for a bit with Vanessa, but there were other kids and he did not join them like he did last weekend. After about an hour, we went to a shopping mall, got some ice cream and went to the movies. He did great. Loved the movie and stayed until the end.

Today at home he did not touch a single toy. He just played with electronic toys and when we asked him to take a break he would watch TV. He was not interested in the playground, biking, nothing. We went to our friends' Brooke and Luis' house and he was not interested in playing at all with any of the kids. He watched TV, then colored on his own and when he was totally bored, I allowed him to play with the PC because all he wanted was to go home and we were not done with dinner. He spent a couple of hours playing with the PC. He did not even want to sing happy birthday. I picked him up and sat him on the table next to me and he hugged me as if he was scared. Again, he was overcome all these behaviors and this is strange / hard to live again.

It is important to note that his language has not regressed.

I will order the Dyflucan tomorrow and watch to see how it goes.

Friday, July 27, 2007

Still Reacts Badly to Mosquito Bytes

This week has been brutal at work. I have not had time to sit and write about Jonathan. But he continues to show natural progression in his development. No big "wow"s, but that is to be expected. I have not changed his supplements, and he has not started any major therapies. He starts HBOT again next Thursday.

What I wanted to write about is more on the negative things that I am seeing so I have a log.
  • Still allergic to Mosquito Bytes: Jonathan is the only person that I know that reacts very badly to mosquito bytes. Other people have a bad reaction, but Jonathan's body part that was bitten gets very swollen (deformed) and local fever. He has 2 mosquito bytes last night, and today one of the legs really hurts him it is so swollen. I thought that this had gotten better, but it seems not.

  • Very yellow urine: his urine the past couple of weeks has been bright yellow, even at night. That is normal a few hours after I give the B-Complex vitamin. But it always cleared up as the day went by. We are financially too tight right not to run the 3 typical urine tests (Urine Amino Acids, Urine Toxic Metal, Metabolic Analysis Test). The insurance is not covering much.

  • Moves constantly: he seems to have an aggravated problem organizing his body in space. One of the areas he has trouble with is regulating sensory input. From the beginning, he was diagnosed with Sensory Integration Dysfunction. Sensory integration (SI) is the process of receiving, organizing, and interpreting input, becoming the basis for motor planning, learning and behavior. When this process is disorganized, it is called Sensory Integration Dysfunction. The best therapies to address SI Dysfunction are Occupational Therapy (OT), Physical Therapy, Auditory Processing and others. He has received numerous hours in each of these and hence his improvement in this area. However, this continues to be a huge problem for Jonathan. We currently stopped all OT, PT and Auditory Processing therapies to invest on HBOT. I will enroll him again in OT and PT in the Winter time.

  • Very loud: this may be a problem similar to the one described above. He has trouble regulating his tone of voice, the volume and the excitement that he uses. He constantly speaks very loudly (screams) when communicating and I have to remind him to speak softly.

  • Back to numbers: Jonathan has a true love for numbers. It is a big strength. Might the the part of his brain that is over-developing. He got a new Leapster cartridge last week called "Numbers on the Run" and he now knows how to add and subtract. And all he talks about is adding and subtracting. I am now restricting the use of electronic toys as I want him to play with his imagination more.

  • Very picky eater: I am not sure how to address this one issue, but he is really packing pounds because he eats a lot (and I mean A LOT) of things that he likes and does not eat healthy items like vegetable, more variety of fruits and other types of foods. He is a pizza/spaghetti/chicken and rice kind of kid. I hate it and I don't know how to teach him to eat other types of foods.
On the positive side, he had a great play day with Vanessa. This morning they opened up about 8 little bottles of playdough and played pretend that they were making chicken nuggets, the put them in their kitchen, cooked them, then sat at the table and ate them.

We went to the shopping mall, and they both got their haircut. It is always a good measuring point for me to assess how well Jonathan is progressing. Today he had the best day ever, yet he still has sensory problems. He was very compliant (as long as I was there holding his hand) and let the lady cut his hair with scissors without moving. When came time for the clipper, he freaked out a bit, but she showed him and he did it fine. He arched quite a bit and told me that his back tickled. So it is nice to know how he actually feels. He definitely still has some major SI regulatory issues. He regulated it well (did not scream or ran out) and she finished the job great.

This evening they played with cards and with a magnet puzzle. It was very cute to see them play together.

Tuesday, July 24, 2007

Losing Patience

Interestingly enough, I have reached a point now in which I talk to Jonathan the same way as I talk to Vanessa, and I forget about his disability at times and that has frustrated me a bit the past 3 days because I expect him to behave in a way that he is not quite ready for just yet.

Jonathan played with our friends' kids all weekend. On Saturday, they spent a good 3 hours together, but then we went over to their house on Sunday, and they played for almost 5 hours. I was shocked that Jonathan could keep up with them, their inventions, conversations, etc.

We have gotten to a point now where I can be watching TV and Jonathan asks for more apple juice, and without changing my way of speaking and without looking at him, I just say "Jonathan, take the cup to your daddy and ask him to give you more apple juice" and he does that. I am talking to him like he has no autism and 2 out of 3 times he gets everything that I say.

So my frustration now comes because he is very "hyper" for my patience; he doesn't know how to regulate his tone so he screams when he talks; and he doesn't know how to keep his distance from strangers, so at starbucks he gets to close to the person in front of us and people lose patience; and he doesn't always obey me, he hears what I say but won't do what I asked, etc. It is amazing that these are now my frustrations. I shouldn't even be frustrated. I am just sort of over my amazement that Jonathan can now speak better and understand language at a 4 year old or so level, and his behavior is now "normal" to me but it really isn't. I know I may not be making much sense right now, but at the same time it has given me something new to focus on.

His conversational language has really improved. We went to visit a friend today, and there was a 6 year old child in the house and he immediately joined that child and asked him what he was doing, etc. He is having trouble focusing because he is having spacial problems. He is constantly moving. I know that HBOT might help with it some, but I know this is more central nervous system problems, ear problems, etc. I am strongly considering the neurofeedback therapy for next year because Jonathan is definitely going to be one of those children on the spectrum that as they start recovering, they move within the spectrum from autism to ADHD to ADD to hopefully full recovery. We definitely still have a long road and I need to learn to be more patient.

Saturday, July 21, 2007

Fun Water Day

Jonathan wanted us to buy him a toy yesterday that we couldn't find. We looked, and looked, but we couldn't find it. He wanted an X-ray machine or something like that. He got very sad and I told him that I would buy it on the internet (which I did tonight) and but it didn't console him. So I (bad me, I know) bought him another Leapster cartridge and the look in his face was priceless. He played all evening at Joe's Crab Shack, which bothered me because he has been so social lately that I didn't like to see him to submerged in his own world, but I let it go. He wanted to play this morning, but daddy told him that he couldn't until I got up (I slept really late today for the first time in years) and when I got up, he played for a bit. So he played on and off until our friends came over with their kids.

Jonathan was taking an involuntary break from his Leaspter toy when our friends came over. They brought a volcano toy that connects into a hose and it explodes water. It is a very fun toy. Daddy hooked it up and Jonathan came running to me saying "mommy, mommy, I want to put my bathing suit on". It was the first time since we came back from the beach that we had gathered in one of our houses. So Jonathan had really not played in our house with the kids since then. Before the beach, there was nothing that we could tell Jonathan to persuade him to come to the backyard and play with the kids when they came over. Today, that is all he wanted to do. Play with all the kids. I told him to go to his room and get the bathing suit, and he did. I was pretty shocked. He brought it down and I helped him. He still has some coordination and muscle tone issues. I went upstairs to get his sandals and put them on. He came back running and said "mommy, I'm going to take my sandals off. C doesn't have sandals. I want to be like C". I told him that it was okay. Vanessa came asking for her bathing suit too.

The kids spent about 1.5 hours playing with the water. And another 1.5 hours playing with other things. It was great. Jonathan had a blast. He talked to them and they talked back and they all invented games with the volcano. I think they even broke it from sitting on it (Jonathan in particular who is 60 lbs). But it was amazing to see him playing so normally. Then they invented other games on the playground. They brought out a crochet came and Jonathan would set it up at the bottom of the slide and they all took turns to slide a ball down and then themselves. It is really hard to recognize him lately.

When our friends left, I bathed the kids and served dinner. Jonathan ate and then watched a bit of TV until he and Vanessa started playing with a Lightining McQueen car. And made up stories and places to go, etc.

If you click on the pictures, it should open another page showing them in bigger resolution. I don't know why they seem smaller today than normal.

Thursday, July 19, 2007

Blooming Like a Flower

This by far has been the most impressive week ever. 2 years and 8 months of biomedical interventions, and in every step of the way I wanted some type of miracle. And perhaps because the improvements have been so gradient, that it felt like I wanted to just rip the autism out of his body faster but I couldn't. Every time we thought he was getting better, he would suddenly regress. But the most difficult part has always been the language barrier. He overcame lots of his sensory issues and it was easier to go places with him. But the language barrier kept him from playing, talking, socializing, into his own little and secured world. And every time I kept telling myself "I hope that someday I can talk to him and he can talk back to me". A few months ago, Vanessa, who is only 3.3 years old, understood me better. Talking to Jonathan meant using specific words, almost a special language. Computer game language "uh oh, please try again" if he made a mistake for instance.

This week something changed. I cannot grasp exactly when and what, but it is like a fog is lifting and Jonathan understands and can express and can converse. Not perfectly, but it is the beginning and I pray it only gets better. And it hit me today when I was standing in the kitchen talking to my father and he called my name, and pointing to the door frame he said "mommy, what is this called?" and I said door frame. He repeated it and then touched the wall and asked what it was called. Then I asked him if he knew the name of the ceiling and he didn't know so I told him. A few minutes later, I quizzed him and he remember the door frame and the wall, but not the ceiling. When I told him, he said "oh mommy, I that's right. I forgot. I remember now". He is using verb tenses much better, he is using pronouns more appropriately. Today in particular, he seemed to speak in long and well structured sentences. But more importantly, he is comprehending. Not perfectly, but better than ever.

One of my biggest focus has been working on conversational language. Having the kid talk and tell you stories or ask stories and share thoughts. That never truly happened before until this week. For the past few weeks, soon after the HBOT finished, he started trying to construct longer sentences, but as soon as he got stuck, he would quit. 2 weeks ago, he told me what he saw in a movie (which I think I wrote about it in this blog). But this week has been different, because he remembers space, and time and he is putting pieces of his own puzzle together. Now, when he talks to me he says "mommy, you told me before" or "mommy, you told me yesterday" or on Saturday or whatever day. And he doesn't forget what I said and when I said it. This week he has been able to tell me with more detail what he did during the day. He got hit today by a kid and when I asked him, he described rather clear the incident. I put him to bed tonight and started talking. He described his daily routine and even when he imagines what his grandfather does before he goes to pick him up. He told me that in the mornings, I put his Leapster on top of his grandfather computer. And grandpa comes come, picks it up and takes it with him to the summer camp. He leaves it in the car and goes inside to pick him up. Then Jonathan takes his name tag off his back and walks with Abuelito to the car. Abuelito says "Jonathan, aqui esta tu toy" and Jonathan says thank you and abuelito says "you're welcome". Then they come home and sometime he eats if he is hungry. Then he plays with his toy until mommy, daddy and Vanessa come home (which is about 1 hour later). The fact that he can articulate all that impressed me. He told me that when he falls asleep, his arms and legs and stomach and every thing falls asleep. He told me that when the sun comes up, he comes to my bed and lays with us for a while until I get up to take a shower and then he gets up to play PlayStation. He told me the names of his teachers. I have been asking him for 3 days or more. And today he said "mommy, I know my teachers names. Jessica and Dan. And" and he paused "my friend, I can't remember my friend's name" and I said DJ as I knew he was playing with that kid and he said "no mommy, yes, DJ is my friend, but my new friend" paused again "is Christopher" and I smiled. I almost wanted to cry actually. So I asked him how old Christopher was and he said "I don't know. I have to ask Christopher tomorrow then I tell you".

He still has trouble sharing. He still has many areas that need much work, but we are moving again. The train is moving in the right direction. He cannot control how loud he gets. That will take time. He is still shy when greeting. If people say hi, he still does not say hi back but he smiles back.

Continuing on the stool analysis, it is better. I can hardly see any mucous anymore. Just wanted to record this so I could go back to the date.

Tuesday, July 17, 2007

Language Improvement after Detox

The past 2 days have been interesting. Jonathan again made a leap into complex play and language improvement. On Monday, he got up in a great mood, greeted me and when Vanessa woke up, they played until we left to school. I was happily surprised when he joined Vanessa in pretend play with an elephant toy. Jonathan spontaneously said that it was a baby elephant and he wanted his mommy. Vanessa repeated the same thing, and Jonathan said that he would go downstairs to get the mommy elephant. And he did. Then he and Vanessa played with them for a few minutes and we all went downstairs. He found another elephant (Vanessa's favorite animal) and brought it over and said that it was the brother.

I noticed the change in behavior when he came by and asked me for his leapster and I told him that Grandpa took it so he could give it to him when he picks him up from summer camp. And Jonathan understood and smiled and took it great. Just the day before he had a horrible meltdown at McDonald's because he wanted chicken nuggets and they were still serving breakfast. Then they moved into playing with the piano. Watch the video below and notice how patient Jonathan is, how he is trying to understand what Vanessa is doing (finding an audience) without losing it, he is coping, reading non-verbal language. He tries to sing and when he notices that Vanessa is not playing the piano, he stops. And then he starts softly when she starts playing the piano and puts more emphasis when he realizes that she is going to finish the song. To me, this is a breakthrough.

In the afternoon, I noticed that his sentences were better structured than ever. I asked him what he ate and he said "I ate all my chicken and rice, my apple sauce and I drank all my apple juice. I didn't eat my banana". Now, that is a lot of words. During the public school assessment performed this past February, they reported only hearing 5 words in Jonathan's sentences, but most were only 3-word sentences. When I asked him why, he said "I didn't want banana. My belly is full at school". Seriously, I cannot even write or remember everything he says. He is talking and talking.

Today he didn't ask for the GPS in the car. All he wanted to do was talk. He told me about 2 books that he read in the morning. He seemed different today. Asked quite a few "why" questions and it is hard sometimes to explain because I am not sure if he knows all the words I may use to describe why. I also noticed that he didn't do the head movements as much the past couple of days (he tilts his head to one side when he talks or walks).

Yesterday and today he still had some mucous in his stools, but not as much. I read a bit more about it and there seems to be some anecdotal evidence of a white thick mucous in the stool when Clostridia is dying. He has been off the Flagyl for over 2 weeks, so that seems a bit strange. But never underestimate the human body. It cannot be a coincidence that 2 days after I noticed that mucous, he started playing more appropriately than ever and speaking better.

Sunday, July 15, 2007

Lots of Crying This Morning - Detox???

This morning was rough. I am not sure if it was detox, hunger, yeast flare ups, other. But his behavior was definitely unusual. He has overcome the meltdowns and regression is always hard to re-live.

He has been pretty obsessed with playing with his L-Max Leapster toy. Is it that strep came back to his gut? I don't know. We need to recover a bit financially before I run another CDSA (stool analysis).

Last night he didn't even want to eat as all he wanted to do was play with it connected to the TV. Jonathan wants to improve his play. He likes to play and win. And if he loses, he plays until he wins, then he changes cartridges. But he likes to involve people. He likes to have Vanessa with him and he tells Vanessa what is going on. Or me, and tries to teach me and makes me play and takes turns with me. So, at least it is not a device that steals him away from this world. But it definitely steals him away from playing with his imagination.

This morning he woke up in a great mood, but soon after I got out of bed, he pointed out that he wanted to connect the device to the TV. I told him that he couldn't do it until Daddy woke up (an excuse to keep him off it). He was okay with that and patiently waited. I offered him breakfast and he declined. So I started to get concerned about his lack of appetite and dressed him and Vanessa up and told them that we were going to McDonald's to have breakfast and he could play after we ate. He didn't like it much, but complied. We went to McDonald's and he had a meltdown in front of everyone because he wanted chicken nuggets and it wasn't 11am yet. No matter what I said made him stop crying. I ordered breakfast for the rest and sat down. Jonathan kept crying until I gave him my phone and told him to watch the clock and to tell me when it was 11am. It was about 10:50am. And he calmed down and did just that. At exactly 11am he started screaming of happiness. We went to get the nuggets and because they were hot he started crying non-stop again. Then Daddy cut them up in pieces and he cried again because he wanted them in whole pieces. It was weird. He could not control his feelings. But as soon as he ate, he was transformed. He started playing with Vanessa in the indoor playground, and was in a very good mood throughout the rest of the day. And didn't cry for anything else the rest of the day.

The next thing I noticed after we got home is that he had a bowel movement with lots of white mucous in it. I think it is the third time I see mucous this year. I thought it was yeast flare ups, so I researched it in Yasko's forum group and Yasko believes that it is a sign that the gut is healing and/or metal detox. In the past, whenever Jonathan cried like that (for an insignificant thing and could not control his emotions) it was a sign of detox. I got the highest metal stool dumps after a big meltdown like this mornings. So who knows.

After that, the afternoon was pretty good, although he was very VERY silly. That is also a sign of detox. I hope so.

We went to visit my family in DC this afternoon and he was social. He even participated in a couple of conversations a the table during lunch.

I am not sure what/how I am going to make him play with that Leapster device less. We have decided to postpone the RDI sessions until next year because we decided to invest on another 40 HBOT dives. And without guidance from a consultant, I find RDI hard to follow and engage. I will do my best to grab his attention on other activities without tracking the stage. Today for instance, I showed him how to play solitaire with regular cards and he really liked it.

I didn't take pictures today.

Saturday, July 14, 2007

Spontaneously Made References of Other People

Jonathan amazes me daily. Today, I asked him what T-shirt he wanted to wear, and he picked out one from the Disney movie Ratatouille. I put it on and pointing to it he said "look mommy, it is the mouse from Ratatouille movie. Abuelita Turia gave it to me". Abuielita (GrandMa) Turia is my mother. He said it spontaneously, which surprised me because he had not made references on his own of gifts received from people in the past. It also surprised me because my mom has been gone for a week and he still remembers her name. When she came in December, he did not remember her name a couple of days later. If I pointed out a picture to him and ask him to tell me her name, he couldn't and seemed uninterested. He wouldn't either spontaneously make references about gifts that people gave him. If I asked him, sometimes he could tell me. Especially the ones that Abuita (GrandMa Nelly) gave him. But never like today.

Then, about 10 minutes later, I came back in the room and he was playing with his Leapster L-Max toy connected to the TV. He said "mommy, what happened to my old Leapster toy? Is it broken? Where is my green Leapster toy?" and I told him that the green one got lost at the beach (which he already knew, but asked anyway) and that the old one was broken. Then he said "but look mommy, I have a new Leapster toy. It is the L-Max Leapster toy. Abuelita Turia gave it to me". That shocked too. Then he said "and Christian has a Leapster L-Max too, and we can share cartridges". Now that made me open my mouth. He had never EVER made a reference spontaneously about Christian. Christian is 5 also. Their parents are our best friends. And we have always been sad that they never clicked, never bonded. But at the beach they did a bit. And Jonathan and I carried on a conversation about that topic for about 5 minutes. Outstanding!

We then went to meet with our friends Christian and Nico and Tio Luis and Tia Brooke, had lunch and headed to a park that was new to us. Very nice part built for kids "of all abilities" as the sign at the entrance said. The kids had a terrific time. Played in a maze, swings, slides, carousel, etc. Here are some pictures. We spent about 3 hours there. After that, we went to eat ice cream. Jonathan wanted Chocolate ice cream. He saw a kid with a sugar cone, and told me that he wanted it in a cone. I ordered it but soon after he put the ice cream in a cup and ate it with a spoon. Then I decided to show him how to eat the sugar cone. He hesitated and I told him it was a cookie. He tried it and loved it. The I put some ice cream inside and he said "mmm, mommy, this cone is delicious". We all laughed.

After that we went home and the kids were exhausted, so evening was pretty uneventful. We had an excellent day!

Friday, July 13, 2007

I Love You a Very Long Much!

When we arrived at the church this morning, Jonathan was in a good mood, well rested and ready to start a new day. I dropped my new phone on the floor and I got worried and he looked at me and said: "what happened mommy? Are you okay?" And I told him that I was fine but I had dropped the phone. And he said "don't worry mommy, when we get home we'll fix it. Don't worry." Gosh, that was cute.

Jonathan had a very full day at the camp. When my dad picked him up, he fell asleep on the way home and kept sleeping for 1.5 hours more. They told me in the morning that they were going to do a lot of physical activities today.

I woke him up and after about 10 minutes we went out bike riding. He was an a good mood. We then arrived at home and played outside with bubbles. They really enjoyed it. They shared the gummy bears and M&Ms that Vanessa brought from daycare (they had a birthday party). Tia Nelci arrived so we could go out to dinner. We went to Jonathan's favorite place: Moby Dick's House of Kabob. We all ate and came back home. The kids play for a little while longer.

Vanessa has turned into Jonathan's therapist. They play all the time and imitate each other. They have been doing that for a while now. But before they used to just chase each other around the house or at the parks, etc. And now that they use verbal language to communicate, their games are more complex. I video taped them a bit tonight, but it was dark in the room and my video camera does not have a light, so the following video is a bit dark. But notice how Jonathan wants to contantly play with Vanessa, wants to please her, how he reads her non-verbal body language when playing rough (and yes, they scream all the time), how he tries to teach her when she is stuck. Jonathan could not tolerate these types of games 4 months ago. As long as Vanessa didn't touch him, they could play (chasing around was their favorite). If Vanessa touched him, he would screem and cry. And whenever he was excited, he would be too rough and hurt her. He can now tolerate being touched and pushed and is more gentle while still being playfull. And he can now tell when Vanessa is done with a game and move onto some other activity. Before he would cry because he didn't want to change activities. Vanessa has matured in the last 4 to 5 months. It seems as they are developing in parallel as all the biomed treatments (especially chelation and methylation support) and HBOT are doing their magic. Enjoy it.

When it came time for bed, I again applied the suppository and Jonathan started asking me about tomorrow. We spoke for about 5 minutes. How extremely cool. I told him where we were going tomorrow and then he would say "but mommy you said I could play with Playstation" Then he said "tomorrow, when the sun comes up I go to your bed and wake you up. We go downstairs". And I asked him what we were going to do and he said " we are going to draw" and I asked him what we were going to draw, and he said: "objects. I want to draw objects, and stars" and I told him that we should draw animals and he started mentioning some animals he likes. Then he said he wanted to go to the zoo. Final, he said "ok mommy, good night. I love you. Give me kiss on my cheek" and I told him that I loved him too and gave him a kids. Then he said "I love you a veeeeeeeery long much" and I smiled back and I said "I love you very much too sweetie, I love you thiiiiiiis much" with my arms open wide and he liked that and opened his arms too. That was a very special moment because he had never said that. I didn't know that he even understood the meaning of such abstract thinking.

Thursday, July 12, 2007

He Can Swing by Himself

I mentioned it a couple of days ago, but it amazes me so much every time I see it, that I taped him tonight. He can swing without help. Excellent motor planning, and much improved muscle tone. He can control his body much better.

He had another great day at the new summer camp. When we arrived, the volunteer that worked with him yesterday complemented him a lot. She told me that she had a great time with him yesterday. He is very sweet and fun to be with. He is a very happy and smart kid and they had a great time together. That is always so great to hear.

Today another kid hit him. The kid didn't injure him but apparently Jonathan made a big deal. I have noticed that he cannot regulate his emotions. When he talks, he screams. When he is excited, he screams. When he is upset, he screams. I keep telling him to keep his voice down. He does it for 1 second and goes back to being extra loud. I need to work on that.

We took the dog out for a walk today for the first time in months. I want to walk Kaiser every day now that is summer because the backyard is getting infected with mosquitoes and flies from his stools (nasty, I know). I want the kids to be able to play freely in the backyard. The 2 kids and I took flashlights and walked 2 blocks down. They had such a good time walking him, following him. They had never seen Kaiser urinate and were fascinated. Funny. They asked me if we can do it again tomorrow. Let's see how it goes.

The kids had a blast tonight during bath time. Jonathan now likes to bathe with Vanessa and loves to have toys in the bathtub. He liked toys when he was younger (2 years and less), but for the past 3 years he has not enjoyed bath time much. Hated to have his face wet. Now, he undresses on his own, calls Vanessa to get in first so she can be closer to the faucet and then gets in. He hated to be in the tub with Vanessa before and hated to be touched by Vanessa. They he doesn't even notice when Vanessa is close to him or touches him. They play lots of wrestling games outside the bath, so he is getting used to the touch sensory. Today, they had a great time drawing on the ceramic tiles. I had bought water crayons years ago and Jonathan had never been interested. He found them 2 days ago under the sink and now wants them everyday. They painted cubes and a house and a sun. By the time I got the camera, they had already erased everything. All that can be seen is a few line on the tub. I'll try to take better pictures next time.

Wednesday, July 11, 2007

Reflecting on Life

A week and a half ago, a friend had a beautiful full-term baby boy who came to this world with a special challenge: diaphragmatic hernia. He has touched my heart because he has surprised everyone and is quickly recovering after undergoing surgery. Sometimes we underestimate kids and their potential. And these beautiful little creatures teach us a very important lesson in life: never give up! This little guy is no longer using life support and ate on his own today. He is a very special child who is making everyone that surrounds him appreciate life in a different way.

Today, when I went to drop Jonathan off at his new summer camp, I stared and analyzed all those special kids and their parents and how brave everyone is. This camp is very special. It is organized by a Christian church in the area and targets 100 kids with special needs and their siblings every year. What is special about it is that there are 150 volunteers working every day to give these wonderful and brake young kids a fun and unforgettable day. Each child is assigned one person. And their days are full of activities. Jonathan has had 3 very fun and full days. He is excited to go every morning.

As I watched the kids, one caught my eyes. A little girl who was laying down on the floor and seemed very unhappy. She was in front of us. Her mom did not look happy either. The child was about 6 years old, non-verbal. Jonathan was impatient as he wanted to go to his classroom. But we had to wait to get his name tag. I saw the girl and saw Jonathan. And I felt a nut in my throat thinking that even though Jonathan had this devastating disorder, all the hard work to make him get better, to detox him, all the therapies seem to be paying off because he seems like a happy child. He smiles all the time and the teachers like him because he is very sweet and loving and smart. Whether he officially loses the diagnosis or not is suddenly to me not as important as providing him with a high quality of life, to see him happy.

When I got home, he told me that he had a fun day at his new school. When I asked him "what did you do today" he thought hard and said "I don't know mommy". But Vanessa says the same, and many neuro-typical say the same thing, so I just smiled at him.

His language surprises me daily. I know that for parents of neuro-typical kids, some of the small remarks that I log daily in this blog might seem non-trivial. But for a child with this disability, small things are actually huge. Tonight we went to eat dinner at a small restaurant near our house. While at the restaurant he asked me if he could play Playstation. I told him that he could play for 15 minutes when we got home and then he had to get ready for bed. When we got home, he came to me and said "mommy, you said at the restaurant that I can play playstation 15 minutes, can I play now?". This is so huge. I told him yes.

Then, as I was getting him ready for bed, I told him that he could not drink apple juice anymore after he brushed his teeth because he is getting gum disease and we have to go see the dentist soon (I noticed that his gums are a bit swollen). And I pointed the gums to him. He got concerned. When it came time to brush his teeth he said: "mommy, I don't like gum disease". I told him that he had to brush in the morning and in the evening so he didn't get it. Then he said: "what can I drink to bed?" and I said that he could drink water after he brushed his teeth at night. So when we got to his room, he said: "mommy, can I have water with ice in a closed cup? I don't want apple juice. Apple juice is bad for teeth. " I had a huge smile in my face and I told him I would get him water right away. I got him the water and he said: "oh, thanks mom. Is gum disease going away now because I drink water?" and I told him that it would but we still had to see the doctor.

I took him to his bed, applied the suppository (EDTA chelation suppository 3 times a week) and said goodnight. He said: "where are you going mommy?" and I told him that I was going to clean the kitchen and then go to my bed. And he said: "tomorrow, when the sun comes up, I am going to your bed to sleep with you", which he does every day. But I loved hearing it.

To me having these types of rational conversations with Jonathan is simply incredible. I hope that this is the beginning. I hope that the next 40 HBOT dives make him better. From everything I read, the minimum should be 120 dives. But financially we can only afford 80 this year. We'll do the other 40 (or 80) next year. Chelation, methylation and HBOT are what is bringing Jonathan to this side of the world, are the key to his awakening.

Tuesday, July 10, 2007

Summer Camp

Jonathan started a new summer camp yesterday. Before we arrived, I talked to him about it and he was happy and prepared. He told me that he was not going to cry, he was going to play with the other kids and listen to his new teacher. A conversation that was strange to have since I had never before been able to rationalize this way with him. When we arrived at the school, he walked into his classroom, told the teacher "are you my new teacher? Is this my new class?" When she responded yes, he turned to me and said "ok mommy, you can go now. " And gave me a big smile. That was great. Only 2 months ago we tried to take him to our Gym's daycare for an hour so we could exercise, and he would have meltdowns. So it is incredible how quickly he has matured.

They went to a water park today and Jonathan liked it very much. When I got home and asked him, he told me that he had a very fun day. I asked him why he didn't eat his lunch, and he said that because he was in the water and didn't want to come out. Again, this is awesome that he is able to respond so well to a question of a past action. Something that he was not able to do very well or at all in the past.

When Tio Hugo and Tia Michelle came to visit tonight, Jonathan stopped playing with the PlayStation and ran to see his uncle and play with him. They went outside and played with a bubble making machine that Tio Hugo brought them. They had a blast. They also played a lot in the playground. Today for the first time I noticed that Jonathan was able to swing on his own. I am not sure if he learned that during the past month or so at his OT lessons or simply developed the instinct. He was so confident. It was great to watch.

At bedtime, I told him to turn off the TV and playstation because it was bedtime. He was compliant, but slow. So I turned it off. He, jokingly and with a smile in his face, came after me and said: "mommy, I am going to kick your butt", and kicked me gently. It was very funny. Vanessa came to rescue me and told Jonathan not to kick me. Very cute. I am not going to encourage the kicking but it was the first time I had ever heard him say that, it was very appropriate (people want to kick other people's butt when they are upset with them).

Jonathan and Vanessa have become an inseparable team. They play really well together.

Jonathan giving Vanessa the ping item because "pink is for girls" and he is a boy and wanted the blue one.

Saturday, July 7, 2007

Catching Up

I have not written in over a week. Javier and I took a mini-vacation to Las Vegas last week and it threw off our schedules. We are caught up now.

It has been 8 weeks since we ended our first session of 40 dives of HBOT. The gains have been phenomenal. We are scheduled to start the second 40-dive session on July 31st. The gains have been so remarkable, that we don't want to wait until next January for another round. We will have to wait until next year for the 3rd session. In the meantime, Jonathan will be attending regular kindergarden and we will keep him as engaged and entertained as possible so he continues to catch up and learn.
  • Jonathan's receptive language improved dramatically. I can tell that he still has trouble understanding certain things. It is almost as if he is learning a foreign language and he translates in his mind what was just said in a language that he can picture. But 8 out 10 times he gets it.

  • Jonathan's expressive language has also improved greatly. He doesn't speak like a 5 year-old just yet, but he is no longer shy and he will communicate with others in a manner that others understand. I can still hear some rote tone in his speech, and he still repeats phrases that he memorized in the past. He has a long way to go, but he is making friends at the daycare, and he is communicating and playing and asking tons of questions. He pretty much understands and responds all the "w" questions. He still has trouble with the "how" question. And he won't stop talking!. But instead of being annoyed, I am very happy to hear him talk all the time. He can even tell me about an entire movie or show he watched, what he did during the day (if he remembers) and what he ate, etc. He had a birthday party on Friday and he was very excited about the party and the goody bag (new behavior) and he remembered the birthday child's name (new behavior).

  • Social Skills have improved 200%. He still is not at the same level as other 5 year-olds, but I have to give him huge credit here. He is doing great in the new classroom. The teachers adore him and tell me all about his day when I go pick him up. He has 3 friends in that classroom. He shows genuine interest in knowing what they are doing and wants to play with them. He participates in all activities. He has no sensory issue with crowds anymore. He smiles at people (he still doesn't say hello all the time), but he is very pleasant.

  • Pretend Play is taking another dimension. He is getting much better at it. He still prefers to play with toys that are predictable, that have maps or letters or math in them (like his Leapster video game) but he plays all the time with Vanessa and they change games constantly without getting upset. He has become very adaptable to games. And if I or Daddy tell him that he cannot do something until later or play a game, etc., he will come back giving us a new scenario, telling us to pretend that it is later so he can do what he wants. That is really clever.
I completed a round of Flagyl and I quite honestly saw a bit of improvement on his expressive language area, but nothing major. I cannot tell that it was the Flagyl vs more HBOT improvement. Next month I am going to do the Yasko-clostridia protocol to see if it helps more.

Since July 4, he has been a bit more introvert because he has a brand new LeapFrog Leapster L-Max video game device, and he is playing with all the cartridges he has. I hope that he gets over this soon because he is not as social as he has been in the past 2 weeks.

He is doing really well. I am very proud of him.

Here are some pictures from the last week or so:

Nicole's Birthday Party at the Build A Bear store. Jonathan had never been interested in this store before. We had taken him twice in the past 2 years. This time, he loved putting the heart inside his animal, and listened to what the lady was saying and actively participated in the activities.

Jonathan teaching Vanessa how to play piano. He has not attended piano lessons in over 6 months, but he remembered what he learned - mostly how to read some notes and how to play some tones. The kids played freely, made up a song and had a great time. Check the video.

Kids were feedings ducks at a pond. Vanessa loves animals.

Kids playing bowling with Tia Nelci. They had a blast!