March 8
Spent a long weekend on the coast celebrating my dad's 75th birthday and reconnecting with family and friends. It was great. Luke, although much better behaved at school, is still having problems communicating and I was sad to see that there were no real boosts in progress over the last 3 months since we last saw family at Christmastime. In my heart I knew something was amiss... and now that I look back I swear a cold/fever he had in November really kicked his immune system which allowed the rampant bad yeast to flourish again. This really made him regress.

We went to Dr. Bratt on Monday, March 7 to discuss Luke and where he's at. I voiced my many concerns, particularly about this pervasive yeast issue that seems to always come back with a vengeance (and we've been so vigilant about his diet). Well, it turns out we need to really watch things like vinegar and any yeast in products (not just wheat, dairy and soy). So we need to cut back on his mustard, pistachios (which are susceptible to yeast), and processed sandwich meat (I'd been buying Freybe gluten-free meat but it's still got crap in it apparently). I feel quite discouraged, like we're starting all bloody over again... but I have to realize and recognize how far he has come. According to Dr. Bratt, it never ends, but it does get better and better. I also pitied myself for not having a "real" holiday in 6+ years as all our extra money goes to Luke's supplements and alternative therapies. Wow... a little honest bitterness. Anyways, the best part about Dr. B. is that she gave us a great plan (which is what I needed). We're going to start by taking a hammer to the yeast (figuratively! lol) by putting him on Nystatin (prescription) for a month or so and see if we can't purge all the candida. THEN we'll put him on a new product which is a Canada replacement for oxytocin (which we can't get here). It's called Respen-A (www.respen-a.com) and we're excited to try it (it's a patch that we stick on his back between his shoulderblades where he can't get at it). There should be some significant improvements in his sociability, muscle tone, communication and more. The other new product that "autism parents" are raving about is something called "Lutimax" which is simply a skookum antioxidant. We will be giving this to Luke during the HBOT (oxygen therapy) in July... after which we'll do our best to kick whatever yeast flares up due to the oxygen blast. By then it will be September and we will have a new look at Luke and gear up for a new school year. One other thing to mention is that we are pretty determined to take him off the seizure medications... Luke's next EEG will be scheduled for sometime in October and we will discuss weaning him off the medications at that time.

So, lots of downs... replaced by potential ups. I love having a plan. Dr. Bratt was also concerned about Luke's OCD habits (obsessiveness with doors... which has tapered slightly), and his eating only the "skin" of things... for example, hot dogs, brown crust of rice bread (not the "white" part!), apples (will eat only the skin and then hands it to me to eat the actual apple part) skin of pepperoni sticks, meats, carrot sticks, celery... he wants to eat around everything and leave the middle. These are unusual quirks and hopefully they will resolve themselves through some of these next treatments. We were just happy that he was feeding himself... it wasn't a battle we wanted to or had the energy to fight. Time will tell.

March 16
Luke's been great the last few weeks at school. Phew. In my heart I believe a lot of the cause was internal... with his yeast flaring and causing havoc in his stomach and brain. Luke's dad agrees. Between increasing the cholesterol, Dr. Wagstaff's help, Dr. Bratt's advice, the BC's advice, and Ms. K's help we're back on track! This is the real Luke.

I have to mention that Luke went ice skating for the fifth time on Sunday and totally impressed us! Dad had to get a little firm with him and get him to stop flopping around and get stable and try to walk... which he did and after that he "skated" around the rink three times (with a break every half-lap). He would sit for a bit and at one time said "Let's go skate again". He floored me... I love him so much. BTW Joel's a natural and needs "no hands"... just skates around on his own, looking for daddy whizzing by. He adores daddy right now and the two are in cahoots on the ice, and while playing Wii resort, or Wii sports, or Wii fit.

Another new and amazing thing is Luke is beginning to sing more consistently and more often. And by that I mean sing along with me, and in music class. I took him to bed early Monday night as he had quite the "off" day (which we know is due to the time change... a book I read acknowledged these kids are extra-sensitive to the earth changes like the moons, and so I assume the time change must have thrown him off more-so than others). I sang a few songs with him to calm him down for bed and he sang along with me! "Jesus Loves Me" and "Hush Little Baby Don't Say a Word" and "Sleep Baby Sleep" and "Lord You Have Searched Me". It was so wonderful to hear him (albeit WAY off-key... he's no josh groban... lol)... I was pleased. Ms. K. at school also mentioned that he's singing along in music class and participating more and more. Yay Luke.

This afternoon I had a quick parent-teacher meeting with Luke's kindergarten teacher and she was very positive about Luke's behaviour and progress. While there's major inconsistencies in him responding to academic questions and testing (ie phonetics, numbers, letters); we all believe it's in there; just a struggle to get him to voice it appropriately. In any case, she did say he would be moving on to grade one which was my biggest concern. I told her how much I appreciated her going the extra mile with Luke, as she had a parent come in and make a "coconut-milk" smoothie with Luke in a separate blender while the rest of the class had milk smoothies. Luke really enjoyed that, and was, according to Ms. K. and the parent-helper, the best behaved boy in class that day. Yay. Luke's penmanship, while far from legible, is coming along and that's all that matters. He is more willing to print his letters and shows effort. He is becoming more interested in all the classroom activities and participating with everyone... and even went to join other boys in playtime (with cars) instead of always going to the rice table. He is socializing somewhat with the other kids. One morning he kept grabbing a girl's pencil while she was writing... and then he would giggle and giggle... she got a little annoyed, so Ms. K. explained it was Luke's attempt to tease her a little and it was not meant maliciously... so she allowed it to go on a little longer... lol. Was our little Luke flirting? Woo hoo. Nice choice, Luke!

BTW Luke still loves music. Whenever we are in the car he asks for music, please? We've got him loving all 4 Five for Fighting CDs, and have now branched out to Blue Rodeo (5 Days in May). He's still not a big Neil Young fan yet, but we're working on it. We introduced him to Louis Armstrong and he wasn't adverse to it.

Oh, and one more thing... I took both boys down to the river to kill time while daddy did some kitchen renos... and they LOVED it. They threw rocks in the water for at least an hour and then started in on the broken glass (that's when I redirected them to the playground!). Luke walked easily over the rickety bridge and was climbing ladders and going down slides like an old pro. He didn't stand out at all until he went up to a lady and stared / smiled into her face. I quickly intervened and told him to "say hi". After an hour on the play ground equipment daddy said it was safe to come home, but the boys wouldn't let me. Luke kept saying "No".... which is something he's started doing a bit more lately (quite the assertive young boy). I'm both proud and pissed at the same time... lol. Anyways, I bribed them with snacks to get them back into the car...

As to the "No" and some disciplining... Luke was not very well behaved in Sunday School so I told him because he was not listening to me or the teacher that he would have to "go to his room" for 6 minutes when we got home. He hates this. He cried, but stayed there. After 6 minutes he came out and we talked about why he was in there. He said "because I opened and closed the door" (time and time again despite us saying not to) and I explained "and also because you didn't listen to mommy and disobeyed me"... which he "got". It's weird to have to discipline him because he's usually such a good kid. But it's all a very good thing.

March 31
Luke's on an upswing, which is so awesome. Things are normalized in the house as he plays/fights with Joel; watches Diego and Backyardigan DVDs (on the laptop which is easier on his eyes than the regular tv); says "I'm hungry" "I'm thirsty", and "I need a snack" all day; and progresses in his ABA program. He is also really, really well behaved at school again which is a HUGE relief to me, because his disruptive behaviour the past few months was so unlike him. He has started to read a little which is amazing and all the signs point to him eventually figuring this out (in Luke's time). Very, very hopeful. His speech is getting better; as is his spontaneous talk and reactions. For example... on Thursday after kindergarten he came running up to me and said "I get to go to gymnastics!" which he does Thursday afternoons... and as we were walking across the field to the car he said "I'm going to go on the monkey bars" and when I asked him what else he would do at gymnastics, he said "See Stella" (the trainer). I was proud and impressed. The thoughts are coming out in regular conversation. I often catch him giggling and repeating words from the Diego DVD and he's "getting" the gist of the storylines. One time he pointed and said "the panda is eating leaves" and he talked about Alicia (Diego's sister). He's also getting a bit more familiar with the Wii; not quite there yet, but improving slowly. Although he's becoming more and more secure in his own body, I can't imagine how difficult it would be to then project your body onto a tv screen and control it with a Wii remote. We always allow him to join in and choose his "game" and we walk him through it; sometimes he stops within seconds, and other times he allows us to walk him through the whole game. Practise, practise, practise. I should also mention that we're into the second week of Nystatin so I attribute some of his advancements to the purging of the bad yeast. It's definitely doing something!

On Wednesday we went on Luke's first "real" field trip to Earl's restaurant. I was bit nervous and had originally had no intention of letting him go, but the teacher assured me they would respect his food allergies. I took Joel along, and Ms. K. (Luke's assistant) joined us as well. While Luke was not 100% comfortable in this strange environment that was dark and crowded with kids everywhere; he coped. We had to use some "threats" (to leave) when he screeched a bit and got a bit noisy and disruptive. But he stuck it out, and stood in line to make chicken fingers... and tried the dishwasher sprayer, and checked out the freezer section of food. He coped. Joel was scared/nervous, so I was busy keeping him calm as well. After the tour, the kids all sat in a booth and had chicken fingers (Luke got ones without breading). Boy was he happy. He sat and ate it all with some mustard dip and had two cups of orange juice. While he wasn't perfect, I was really proud of how he handled the overwhelming-ness of it all and he stuck it out to the end (I was ready to leave at any moment and was so pleased to realize we didn't have to!). I even got to sit and enjoy a cup of coffee with the other moms which was a real treat. Yay Luke. We have another field trip next month to the Big Little Science Centre, and I'm actually looking forward to it.