6 . 11 . 17 . 21 . 22 . 30 .

O C T O B E R . 2008 >

October 6

We're back from another week of Tomatis training, and it went fairly well. Luke does seem to be vocalizing more, but he is also screeching which is really annoying. He also is mouthing objects all the time, and I'm sure this is just the developmental stage he missed as an infant. The plan for Luke is to continue the vestibular exercises and the bone conduction method of teaching him new words. We will also make an appointment with a developmental optometrist in Langley. Apparently they test for more than just your typical eye issues.

October 17
Had a great week because Luke was AMAZING at the EEG (click here for his photo) at Children's Hospital on Tuesday morning. We had to sleep-deprive him so he only had 5 hours of sleep Monday night. He sat still on daddy's lap while the technician pasted the nodes all over his head. Then he lay down on the bed on his stomach; daddy held him for a bit and he fell asleep like he was supposed to. 10 minutes later we woke him up and cleaned up his hair/head and he was good to go. He was so well-behaved. I'm so glad we did not have to sedate him!!! We met with Dr. J. soon after and the results basically showed no seizure activity, no epileptiform activity, but it was still not considered a "normal" EEG as he still shows a tendency or is "prone to" seizures. So the consensus was to continue with the medications "status quo", and have another EEG in 6 months when we could possibly discuss weaning him off the medications. The neurologist was very pleased with Luke's progress and we mentioned the list of supplements and how we feel the digestive enzymes had an effect on stopping the seizures. She willingly requested some blood work to look into some of these possible deficiencies. She put in a requisition for a cholesterol test along with the other bloodwork; and she wrote a prescription for B6 (also known as pyrodoxine), which will save us a few dollars.

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Our visit with the naturopath in N.Van the next day was just as great. She is working around/with Dr. Wagstaff's treatments and we are able to increase the DMG to 1000mg a day, and increase the B6 to an additional 50mg a day in the form of P5P. Everything else is also status quo, and we will see her in December. She, as always, answered all our questions with intelligence and respect. She's the best.

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Luke has been incredibly disruptive in preschool with his ear-piercing screeching. It's so discouraging, and I'll admit, embarassing. I hope this phase ends soon... I pray that the communication barrier will come down and he will begin to verbalize. On a happier note, Luke got an invite to his first birthday party from a boy in his class. He's also been asked on a play date with a sweet girl from class... we'll be setting up a schedule soon. Apparently the parents haven't heard him screech yet — haha. The birthday parent even called to ask about Luke's special diet and if there was anything she could get for him... I think that's just the nicest thing ever.

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Had our ABA team meeting yesterday and updated Luke's programs. Added toys and games, took some away that he's mastered. It was a productive couple of hours. I'm looking forward to the "preschool meets ABA" team meeting in 2 weeks so we can collaborate and strategize together on how to handle Luke's behavioural issues.

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We've been putting our thumb down on Luke's "helpless" act. I left him on the stairs until he took off his shoes by himself. It took about 10 minutes for him to realize I wasn't going to help him... so he finally did it. Yay, one more milestone achieved. We're working at every meal time to have him feed himself. It's a frustrating process, but he's starting to realize that we're not backing down. Discpline-wise we've chosen a "naughty step" in the house where he needs to sit when he misbehaves. We won't let him get up until he calls "Mama" or "Daddy" and signs "sorry" (as sincerely as possible!). It seems to be working.

October 21
Luke enjoyed ARCS on Saturday and reunited with M and J... and there's a new cutie-pie named G. Ms. E. & Ms. D. commented that "Luke's really come out of his shell!" and they had to dicsipline him a bit with the screeching :).

Luke did very, very well in his ABA programs on Monday and today so we're happy to see some real progress. The PT was here yesterday for a while and she was so shocked at Luke's body confidence. He walked BACKWARDS on skinny steps on the floor (arranged in one long line for about 6 feet). All our jaws dropped. He was balancing and stepping back carefully and placing his feet purposefully and inching his way backwards step-by-step. It was astounding to watch. He also side-stepped as well.

Today he had show-and-tell and he brought a photo of Joel. He got to stand up in front of class and then walk around and show each person. The assistant said he seemed quite pleased and at one point even "kissed" the photo. Joel and Luke are starting to have some fun together, pulling on eachother, throwing toys (ayiyiyi) and generally giggling a lot together. Oh, and of course, occasionally fighting too!

We received the Silver Birch in the mail yesterday, so I started it today. We're heading to Dr. Wagstaff tomorrow to follow-up.

October 22
Had a quick and easy visit with Dr. Wagstaff. Luke was quite well-behaved, as opposed to last time, and we were both pleased with his progress. Luke has become much more aware of himself in the mirror, and has been finding his "tongue"... playing with it and moving it around. This is a developmental precursor to talking. He is also looking beyond himself and actually signed that he saw a horse outside the car window on the trip down. We've always tried to show Luke things outside on all our drives, but he has never reacted. Luke's new sensitivities, that he was desensitized for, are L-Dopa (neurotransmitter that also effects seizures), Norepinephrine (related to asthma, anxiety, insomnia), Group Sugar (Luke is hypoglycemic so we need to make sure he gets lots of little meals each day), Tryptophan (for bloating, skin inflammations). We received another bottle of desensitizing drops and will continue all the drops for the next few months. We also discussed Luke's low muscle tone and Dr. Wagstaff suggested that I meet with his wife who has studied "reflex therapy" under the leading expert (a woman in Russia). We could learn some physical therapy exercises from her that will specifically help Luke. I booked the appointment for December 23. We also discussed the screeching and whether or not Luke would talk. Once again, the "vocalization" and "volume" are Luke experimenting with his own voice and these are all good signs for future speech. We also noted that the results of the EEG were, in fact, different (better!) from the previous EEG which tells us Luke's seizure-activity was more than likely bio-chemically related (which supports the fact that the bio-medical supplements have "cured" his seizures). If there had been no change in the EEG, it would indicate some scar tissue damage that would benefit from Hyperbaric Oxygen Therapy.

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Luke has been giving me unsolicited kisses lately which is so fun. He even said "Mommy" the other day, instead of "Mama"; AND he said Joe again for Joel... the words are coming slowly but surely. He's been having a lot of fun with Joel... running around and giggling a lot. Apparently at preschool his laughter became infectious and the whole class was in fits of giggles. His preschool photos came back and he looks very sad in the class photo and has a "sneer" in his individual photo. Had to at least get one copy for the record, because you just have to laugh. We have a ton of toys because of his therapy and of course our two little munchkins are much more interested in the furnace register, dishwasher, toilet and tupperware cupboards! The screeching and mouthing of objects has lessened a bit. It's always a relief to pass through an annoying stage, but I often cringe as to what comes next?!?!

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We've finally been approved for respite funding; been on the list for a year. We receive $200 a month that we can use for qualified people to watch Luke; which will give Dave and I a much needed break from the day-to-day. We'll be planning an overnight somewhere soon, I hope!

October 30
Had Luke's first IFSP (Preshool and ABA and therapists meeting). It was great to have all these wonderful women get together and talk about what's best for Luke. I really appreciate all their help. We discussed his screeching and came up with an "ignore/no eye contact" plan as it's attention-getting behaviour. The speech therapist and physical therapist gave suggestions on how to encourage Luke's emerging voice and body-confidence. Ms. S. and I had a long discussion afterwards about Luke's plans for the next few years and we're looking into all his options. It was great to take a look at where Luke will be in the next few years and to keep his team involved and connected without disruption. Ms. S. had to give Luke a lot of new goals as he's flown thrown his programs in the last two weeks. It's so encouraging, and we are slowly pulling words out of him, and getting him to respond verbally for everything. He has a difficult time sounding out the words and often uses "babo" as a regular reply, but he's trying so hard. He's been babbling and coming up with more and more sounds, and we actually heard him say something pretty close to "hockey" this morning! Dad was pleased :).

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