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July 14
It's kind of a bizarre place we're in, because Luke is actually talking and we seem to be acting like it's just normal. Every once in a while Luke's daddy and I look at each other and our jaws drop, but for the most part Luke is constantly saying words and phrases. He's also stronger... always opening the fridge door, turning on and off the taps, opening the heavy patio door, flushing the toilet (he NEVER did this before HBOT... he did not have the strength). He opened the fridge today and pointed to a jar and said "Pickles" (we hadn't said this word for months); he came to me during the break from ABA and SAID "snack time"; he SAYS "Chicka, Chicka, Boom, Boom" when he wants to watch that DVD (AND he knows how to hit the "Enter" key to replay it without me telling him how... he may have learned this from watching Joel, but that is also a great thing). He is also much more typical in his actions... Luke was always very obedient... let us brush his teeth when we wanted to, but now he says "no" and keeps brushing himself... turns on the tap to rinse when he wants to, asks for more toothpaste. He has been falling and tripping a lot more like a typical kid and although he cries for a bit, he totally calms down in a couple minutes (when I hug and kiss him). He points to his knees (the scabs) and signs/says "Hurt" and "Ow"... I never ever knew if he understood the concept of pain and the word hurt. He wants the scab "off" but I tell him it will come off when it's ready. He tells me when he wants to "go outside" (he has NEVER told us he wanted to go outside before). He says he wants to go "Up"; he wants to go "Down". He "needs more cartoons" (a favourite saying of Joel's), Luke's not actually that interested in TV still, but he recognizes lots of characters (Pablo, Tyrone, Upsy-Daisy, Iggle-Piggle). He sits and flips through a book by himself and seems to love the "Tails" book lately. He even said the word "grumpy" before I could which he used to laugh and laugh at when he was around 2 years old. He's okay with mixing up his food (used to prefer it all separate) and enjoyed turkey, gravy and cranberry sauce all mixed together (and he said all those words). Last night he ate spicy taco beef mixed with guacamole (as did Joel, although J. also enjoyed medium-spiced salsa and corn chips — I think there were more condiments on his shirt than in his mouth!). Luke "needs more juice" in his "orange cup". He "wants more eat" all the time (quite the appetite). He is so much more with us than ever before and it's very exciting.
July 19 (HB B!!!!)
Had the privilege of talking to two moms this week about all we've done for Luke... they're both just starting the journey with diets and appointments with Dr. Bratt... all the testing and the die-offs. It was so nice to connect to someone else who understands and I will pray for their boys as they start this overwhelming, but rewarding path to recovery.
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I wanted to update the "quirks" list from a 6 months ago...
Here are the quirks that I recorded in May 2008, January 2009 results are in bold, July 2009 results are in bold-green:
> Luke is fascinated with the "chips" in the plates of our dishware; sometimes he's adamant about turning the plate so the "chip" can be close to him and he can touch it. If there isn't one on his plate, he'll pull daddy's or mommy's plate with a chip, closer to him. Doesn't do this anymore; NEVER does this.
> Luke is still uncertain about the garage door. We're trying to show him all kinds of garage doors using toys to help him over this fear. Is not afraid anymore; Says "Close Door" when we enter the garage.
> Luke still will not pee on the toilet. Toilet-trained. Completely toilet-trained: day and night-time.
> Luke occasionally likes to drop things behind his bed or a chair. Still does this very occasionally. Doesn't do this anymore.
> Luke can still get quite upset and bang his head on the table "hard" when he's frustrated. Does not bang his head anymore. NEVER does this; will touch his head and say "bonk" when he hurts it and say "Need a kiss".
> Luke still, on occasion, opens cupboard doors (kitchen and bathroom). Still does this and "puts things in the cupboards"... secret stashes everywhere :). Still does this occasionally... just loves doors. Will do this in the doctor's office, etc. so we're working on "private" and "respecting other people's property".
> Luke still loves tabs off pop and beer cans. Still likes them, but not as obsessively. Still likes them occasionally... but says "tab" and also likes bottle caps (says "bottlecap").
> Luke is still enamoured with lids of all kinds. Still likes them, but not as obsessively. Yep, still likes them but does not search them out or need them. Likes the playdoh lids.
> Luke is very unsure of his own body (for example: when he tries to blow his nose, he dabs at his chin). He is not comfortable looking at himself in a mirror; we will be working with a mirror to help him recognize and learn more about his body awareness. Is much more aware of and comfortable with his body. Luke will look at himself in the mirror and say "Luke". He is very comfortable looking at himself and often does so at length when he's washing his hands or brushing he teeth. He gets who he is. Often points to himself and says "Luke"... and points to Joel and says "JoJo". Luke even picked up a mirror once (spontaneously) and said "mirror". He can also blow his nose now (we hold the kleenex); he finds his nose easily.
> Luke still will not bite into things. They need to be small enough to put into his mouth. He is learning to "break" chips and cookies into smaller bite-size pieces. He would bite into things for a few months, but has regressed again and insists on having everything in little pieces before he eats them. STILL likes things "little". All cookies and chips go in little zip-loc baggies and we crunch them up tiny, tiny, tiny. One battle we're not willing to fight right now :).
> Luke still will not hold a cup. He insisted on the tallest glass cup which is too heavy for him to hold, so we purchased a tall clear plastic one and it does not seem to bother him that it's different. We will be trying to get him to hold the cup himself. He can hold any cup by himself, and drinks with a straw by himself. Luke does not like drinking from a cup... always prefers a straw (says "straw", and will even say the colour straw he wants). He'll drink from a bowl (leftover juice from peaches)... with help. He has an "orange" to-go cup with straw that he loves.
New January 09 quirks:
> Luke still needs something in one hand (usually a small empty capsule from his supplements). Does not need anything in his hands; the odd time he'll hold an empty supplement capsule but often puts it in the garbage after a while.
> Luke still doesn't talk. LUKE TALKS — usually 1 or 2 words, and the occasional 4 word sentence!!!!! "I need more Chicka-Chicka-Boom-Boom" "I need more chips" "Want, Eat, Peaches" "Need a Kiss" "I need more juice please mommy" "Read Book" "More Little". Voice is still very babyish like Joel's and words are not super-clear, but they're getting more and more easy to understand... his pronunciation is improving.
> Luke still plays with cupboard doors. YEP... not as obsessively, but on the odd occasion.
> Luke is obsessive about having us clean his nose when he's upset or crying. Not any more. He says and signs "kleenex" and we put it to his nose and he blows his nose. It is no longer a "stim" for him.
> Luke still does not jump freely. LUKE JUMPS! Cautious, but definitely air-time on the trampoline!
> Luke is not toilet-trained at night. Now he is! Very, very odd accident.
> I still feed Luke (help him eat at every meal, except food he really, really likes. He will eat his snacks by himself, but meat, potatoes and vegetables I still need to help him out.). Same old issues. Has to be fed by us; but on the plus side, he eats pretty much everything: red pepper; taco-beef with guacamole; cucumber; spaghetti with italian sausage; broccoli; beans; french fries with ketchup; LOVES chicken; eats turkey, pork and steak; Now he comes up to us and says "Want, Eat" when he's hungry.
> Luke still screeches. Yep, still screeches... gotta work on this one. Not as bad as it used to be, but still annoying.
New quirks (July 2009)
> Still obsessed with screws, lights. Always points to one screw and says "screw" and then points to another screw and says "screw" and then says "two screws"! He looks at us to acknowledge him every time; and may repeat it a few times. Does the same with lights, and on the odd occasion does it for nails or holes. He does this even though there are more than 2 screws; so we try to count higher than "2" with him and show him all the screws.
> Still screeches/screams. We continually say "Don't scream. Talk." And then he says "Mommy" and looks confused. Sometimes he actually talks and asks for what he wants.
> Insists on us helping him go to the bathroom even though he can do it on his own. He seems a bit "helpless" and will ask for "help" quickly... is used to and likes people doing stuff for/with him.
> Still will not get off the toilet or get out of bed without seeing us first.
> He regresses to old quirky behaviours when we change his environment; it's how he copes with transition. Subtle behaviours... nothing too extreme.
> Still often screams to get our attention.
> Doesn't ride a bike... will sit on it, but not pump his legs.
> Doesn't always respond as quickly as we'd like. Still "fades" a bit and is not quick to reply... sometimes you have to wait and he will; most of the time he's focused on something else, or thinking about something else so it's hard to get his complete attention.
> Still does not dress/undress himself. Will take pants, underwear, jacket, socks and shoes off by himself; but not shirt. And only puts a jacket on by himself without help (but needs help with zipper).
> Still has sensitivities with his hands and bare feet. Hates having little bits of dirt on either, and needs help or screams to get it off (occasionally).
July 27
Just a few things to mention over the past couple weeks. Luke turned 5 yesterday and we made him a GFCF cake (with icing!) and he loved it and ate a lot :). It did have a bit of "corn" in it, so we're testing the corn reaction. Hopefully we can bring it back into his diet, but time will tell. When we sang "Happy Birthday" he got a little shy, and seemed very pleased that he was the centre of attention. He totally knew it was about him. We've been coaxing him to say "I'm Five", which he does. He even was interested a bit in opening his presents and seemed most impressed with the bowling set... of course he became most enthusiastic about it when all the children were throwing the pins in the water... then he joined in the fun!!!
Luke also has more and more comprehensive language. Last night in the bathtub Joel hit him with a bowl and Luke looked at me and pointed to the bowl and said "Take Away"! This is usually the only effective discipline for Joel, so it was interesting to see that Luke knew this?
Luke's words are getting better and better and more and more. More 4-5 word sentences. We really have to stress to him to not scream or grunt anymore but "Use his words", which he usually does.
He's been quite interested in books lately, which is so great. He brought a book to me a said "Read Hop Pop Book" (Hop on Pop by Dr. Suess). That was really cool for him to select and "name it"... will he be able to read soon? Another shocking moment on the weekend was when we were reading Joel's "Lift-the-Flap" animal book, Luke basically read it to me!!! He would say "fox" or "skunk" or "owl" before I could... (it was a "Peekaboo" book). At the end it says "Peekaboo, I see you" and Luke said this too! He got all the animals right (beaver, pup, snow geese, etc.). It was adorable and made me wonder... was it memory, or comprehension? Hmmmmm... Doesn't matter, stop analyzing and enjoy!!! Hahaha.
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