I'm still reeling here. It's about midday. I've just put you down to sleep following an hour and a half in the park where you got caked in mud as we threw sticks into the lake and you ran around like a loony. Your shoes are filthy, you found a turbo fountain and soaked yourself and jumped into the puddle. You played with flowers and were just generally a pleasure. We played chase and I squashed you - it seems you really love that. Ayelet from the Baker Centre said you did, and it is clear that it is an area we need to focus on. Weighted blankets for a start. You climbed and were really really happy. But the bit I am really stunned by, apart from the fact that I saw a parrot in the park (it's Israel, not Brazil), and you started to say things like "want to slide Ben" and "Daddy stick and Ben stick" when we share them, is that you went up to two girls on roller skates and said "ready, steady, go" and pushed one, then he did it to the other. Playing with other kids. Shit. I seriously started to cry.
You got up at 7am or so, and we did the usual morning routine.
Anyway, Baker Centre...they seem to really know everything. She was telling me Ben sleeps like he does (on his side, under the covers, comes out and rotates etc) because of his sensory disorder. We need a weighted blanket according to her. She asked a series of questions like does he like bear hugs (I said yes, we've got a new game where he presses my nose and says "crush" or "squash" and I squeeze him tight). She tied all that up. We just went through his development and his milestones ("wow...he was an early developer" were her words, to which I added "yep, and then he sort of stopped") then we began to look at his sensory profile. "Was he happy the first time he walked on sand?" - I was shocked she asked that - he was sobbing, hysterical. It was like she was expecting me to say it. I don't know her thoughts yet, because she hasn't completed it and made her conclusions but she really looked like she was completely versed in everything she was looking at.
Finally the blocks of your therapy are falling into place. 3 sessions of OT and 4 sessions of CT, Hydrotherapy and Music Therapy every week. With the diet now a month in, and the supplements going in I think we have the basis of the support you need. We met with Didi and she will come and do two lots of 3 hours with you - hopefully a couple of 45 minute Floortime sessions and a trip to the park. It'll give me a chance to recover, breathe, tidy, sleep, read, work whatever. I think you will go to nursery with an assistant too after Passover.
Glutathione - it is better compounded by a pharmacy onsite than bought from a supplement supplier like Kirkman's. There is a general concensus here. My nutritionist said the same. I just woke Ben up rubbing it on his back now - first application. Don't ask how much it costs. Apparently you get what you pay for.
Little Steps: Fabulous in the park, went up to two bigger girls on roller skates and tried to play with them (ready, steady, go! And you pushed them). Possibly the first time you initiated play. Lots of language and words for the first time.
Poop: None.
Sleep: Woke 7.15am. Nap 12.05pm to 2pm (woken up by me as I put cream on you). Sleep at 9.45pm
Today's Food
Breakfast: Banana, Cornflakes and Rice Milk with Isogest (10.50am), Prigat Mango Juice with 1/4 tsp Calcium, 550mg Buffered Vitamin C and 1/2 capsule Nu Thera (9am)
Snack: Good For Me! Chocolate Cake with cashews (11am),
Lunch: Almond & Potato Patty (refused) and Small Portion of Rice (initially refused but was spoon fed half) with Isogest (2.30-4.30pm)
Snack: 2 Good For Me! Chocolate Truffles with dessicated coconut coating, Prigat Mango Juice with 250mg Buffered Vitamin C and 1/2 capsule Nu Thera (5pm), Banana, Half a bowl of Almond Milk Banana Ice Cream (other half with half capsule of Isogest refused)
Dinner: Piece of Good For Me! Chocolate Cake with cashews (7pm), 1 slice of GF bread with Strawberry Jam with half capsule of Isogest (a bit plus one other left) Spring Mango Nectar with 20mg capsule of Zinc (9pm)
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