Sent in our application for summer camp! Max had a great time at Camp Patterson last summer so we’re going for 4 weeks this year!
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nouvelle jen has written 19 entries about this goal
This afternoon Max independently wrote the word “boat”!! This is the first thing he has written of his own volition. Since speech is so frustrating for Max we’ve looked for alternative ways for him to communicate: ideally something anyone could understand. The ASL has been a huge, HUGE help – it was how Max really started learning words. But not everyone knows ASL so we thought about typing or some kind of speech-to-text application. We didn’t give up on writing – but Max has always struggled with fine motor so mostly I do hand-over-hand with him so he gets the motor input but it’s not frustrating. This afternoon we were driving home from tutoring. Max was pointing and saying “this way”. “I don’t understand what you want. Can you draw or write it?” I asked. I handed him the blank sketchbook and pen I always have in the van – not sure what he’d do with it. I heard him uncap the pen. Then silence. I see the notebook in my peripheral vision; he’s leaning forward from the back seat giving it back to me. I see the word “boat” and for a moment I can’t breathe. I know he enjoys riding the ferry and so the past couple weeks I’ve taken him on short ferry rides. I’ve been saying, signing and writing hand-over-hand “boat”. I didn’t realize he’d learned the word much less remember and be able to write it! There’s a ferry dock a few miles away from where his tutor lives and he wanted to go on the ferry boat! “Wow! You wrote ‘boat’!” I beamed at him! “I’m so proud of you, you are AMAZING! Of course we can go on the boat!” What a great kid :)
I just finished the June reconciliation for Paco’s business! I figured out a better way to do the expenses :) faster and more accurate! I was aiming to finish the whole thing before Paco is back next week.
I took Paco to my favorite Indian restaurant in Bothell last week. He loved the butter chicken! I cooked it this weekend and it came out very good for a first try. I can’t wait to cook it again actually! It was a little heavy on the tomato – so I’ll use a different tomato puree next time. There is an Indian/Pakistani grocery about a mile from our house so I was able to get authentic spices, plus I used fresh garlic and ginger. The whole house still smells faintly of cardamon :)
Went last Saturday to the doc again to review Max’s last test. We did the 14 days of prescription stuff for helicobacter rather than go the herbal route. Helicobacter test came back negative! Now going to do another standard stool test to be sure Max is staying stable, do another UAA (urina amino acids) and UEE (urine essential elements) to see if the phosphatidyl serine and lithium are being absorbed. Behaviorally we’re seeing good things :)
Frozen fruit, a splash of “Mango Tango” naked juice and frappe it in the vita-mix. I take a small amount (1/4 cup) and mix it with Nano Greens. Fill the popsicle molds 1/3 full, put a spoon of nano-greens then fill up the molds with the frozen fruit. So it’s mostly fruit with a small stripe of nano-greens. So far frozen strawberries are the favorite. Today I’m test-driving peach :) Something about the frozen fruit gives it a nice texture.
Went to the doctor Saturday to review Max’s latest lab results. We’ve been sticking to the new diet (a few infractions) gone back to a known yeast/bacteria supplement and doubled the dose of probiotics. The sample tested was taken after two months on this “protocol”. Six beneficial bacteria present (last test only two) and at healthy levels (4+). Bad bacteria gone! Yeast improved (now “rare” was previously “few”). Digestion is still good. Inflammatory markers are a teensy bit lower but not significantly improved. Sticking with what we’re doing – and adding an anti-fungal/anti-yeast supplement. Will test again in 3 months.
We were in Disneyland on our 11th wedding anniversary. I invited Paco to fancy dinner (his niece watched Max for us) and we had a great time! The restaurant has an outdoor fire-pit surrounded by comfy chairs. I think its meant for smoking – but there was one sheltered four-top just to the right of the firepit. It was dusky and warm so we sat outside. We could see most of the 7:30pm fireworks display! The waiter was wonderful – so accommodating even though we were away from the rest of the diners. We splurged and did the “Vintners Course” plus wine-flight. Yum!
I feel good this morning about my persistence :) I already have Max scheduled for an audiology exam at Children’s Hospital in December. What we want to discover though is whether or not he has either some disconnect in his hearing neurology or an auditory processing problem of some kind. The BAER (brainstem auditory evoked response) test will check his inner ear and his lower auditory nerve to the brainstem. This should show us how different pitches are received by the brainstem. Are voices (for example) perceived as “white noise” or too loud or jumbled into background noise? I want more support for getting Max ASL (or whatever else he needs) in his classroom. I’m usually not very pushy – but when I realized the soonest “regular” audiology exam was 2 months out I had a bad feeling we’d get to that appointment, everyone would agree the BAER is the next logical step and then we’d wait another 2-6 months for an appointment! So I called the audiology clinic chief at Children’s. She was really great! We talked on the phone for a bit and she has started the paperwork for the BAER. And as I suspected the earliest opening is in February! So if I’d waited until late December to do anything we’d be waiting even longer!
bought champagne and an ice-cream cake! When I got home Paco was Skyping with his favorite brother. Then my parents called to wish him a Happy Birthday – then everyone else started calling to wish him Happy Birthday!! One of his customers gave him a bottle of nice tequila :) It was great to watch Paco notice how loved he is :)
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