For the third continous week, Asher's energy level and health remains GREAT. I'm on cloud 9! Something as simple as my child's good health makes me the happiest person on the planet. Woo hoo!
As Asher's energy level soars, so does his naughtiness. I guess that's to be expected. It's nice to have "normal" problems for a change.
Asher still struggles with cognitive stuff. It is my hope that as we balance his body nutritionally, this part, too, will improve. I'll keep you posted.
In other news, Leila is doing great in her potty training. She's got a lot of personality, that one. And Simi is having a ton of fun at science camp (in the morning) and native american indian pottery (in the afternoon). At science camp, they are exploding mentos in Coke, creating paste using corn starch and water, and making pennies rust with vinegar. It sounds very messy. He loves it. In pottery camp, they are making clay pots, clay snakes, and weaving baskets. I ask him which of the two camps he likes best. He likes both equally. Cool.
Friday, June 20, 2008
Monday, June 16, 2008
And Another Thing...
OK, perhaps you'll put this in the weird/crazy mom category. Or perhaps you'll see it as another piece of the "what's up with Asher" puzzle that will help us heal him:
Asher is SUPER ULTRA SENSITIVE to temperature. Until now.
For example, last year, both Simi and Asher took swimming lessons last summer. When I say it's HOT here in North Carolina in the dog days of summer, I ain't exaggerating one bit! Temperatures reach nearly 100 degrees and routinely hover over the mid-90s with 80-95% humidity. The swimming pool where they took lessons is heated to a temperature that it pleasing to the skin. Well, pleasing to everyone's skin but Asher. Asher was the only child wearing a thermal suit in a heated swimming pool in the hottest days of the Carolina summer. And he shivered.
At Asher's pre-school, they routinely have sprinkler days during the summer. The children love playing in the sprinkler! Asher wouldn't. He'd stay out of the sprinkler, stay on the perimeter of it and watch his friends play in the water. The cold water - even whilst wearing his thermal suit - hurt him.
I have mentioned this to Asher's doctors, who look at me as if I'm green and say, "everyone has different levels of sensitivity to things." I heard, "so what?" "It's no big deal." I always thought this temperature sensitivity thing was a piece of the "what's wrong with Asher puzzle" that was being overlooked.
Fast forward to two weeks ago: the boys were playing in a sprinkler. The temperature was about 105 degrees that day (really! that really and truly was the actual thermometer reading!). I didn't realize that Asher's thermal suit no longer fits him, and that it's also old, torn, and ratty. I found boys swim trunks that fit him and away he went to play with Simi and Leila in the water.
Water from the garden hose is COLD - A LOT colder than that lovely heated swimming pool. And here's my boy standing in the spray and getting SOAKED - with no thermal suit and looking as happy as I've ever seen him. Can it be that Asher is no longer super ultra sensitive to water temperature? Now...doesn't that seem bizarre?
Asher is SUPER ULTRA SENSITIVE to temperature. Until now.
For example, last year, both Simi and Asher took swimming lessons last summer. When I say it's HOT here in North Carolina in the dog days of summer, I ain't exaggerating one bit! Temperatures reach nearly 100 degrees and routinely hover over the mid-90s with 80-95% humidity. The swimming pool where they took lessons is heated to a temperature that it pleasing to the skin. Well, pleasing to everyone's skin but Asher. Asher was the only child wearing a thermal suit in a heated swimming pool in the hottest days of the Carolina summer. And he shivered.
At Asher's pre-school, they routinely have sprinkler days during the summer. The children love playing in the sprinkler! Asher wouldn't. He'd stay out of the sprinkler, stay on the perimeter of it and watch his friends play in the water. The cold water - even whilst wearing his thermal suit - hurt him.
I have mentioned this to Asher's doctors, who look at me as if I'm green and say, "everyone has different levels of sensitivity to things." I heard, "so what?" "It's no big deal." I always thought this temperature sensitivity thing was a piece of the "what's wrong with Asher puzzle" that was being overlooked.
Fast forward to two weeks ago: the boys were playing in a sprinkler. The temperature was about 105 degrees that day (really! that really and truly was the actual thermometer reading!). I didn't realize that Asher's thermal suit no longer fits him, and that it's also old, torn, and ratty. I found boys swim trunks that fit him and away he went to play with Simi and Leila in the water.
Water from the garden hose is COLD - A LOT colder than that lovely heated swimming pool. And here's my boy standing in the spray and getting SOAKED - with no thermal suit and looking as happy as I've ever seen him. Can it be that Asher is no longer super ultra sensitive to water temperature? Now...doesn't that seem bizarre?
Sunday, June 15, 2008
The Great Energy Continues!
Asher's still feeling great. I wish I knew its cause so that we know what to continue doing! He's been feeling great for the past two weeks, which is far longer than any good wave he's ridden in at least a year and a half. I'm on cloud 9!
Both boys had an absolutely wonderful experience at gymnastics camp. Asher did things I never thought possible - for him. On Tuesday, my jaw hit the floor when I saw him playing tug-of-war. He (age 4) and two 5 year-olds tugged against three 6 year-olds. After several minutes, one of the 5 year-olds on Asher's side let go of the rope and sat down. To my surprise, Asher and the other boy managed to keep the tug going for MINUTES after that. I couldn't believe it.
On Thursday, Asher walked on the balance beam by himself - which is only the second time that's happened to my knowledge - and even got up on one of the higher beams and walked sideways on it by himself. I couldn't believe that one! On Friday, Asher was thrilled to show me how well he could dribble a beach ball and he LOVED playing volleyball(!). He jumped up and down in sheer excitement and hustled to get the ball so he could hit it. I couldn't believe the energy level in my kid! I began to wonder if my child was replaced by a totally different kid who just LOOKED like Asher!
In comparison, prior to these past two weeks, if Asher exerted himself for an hour, he would be wiped out for the next week. So in addition to all these new skills he learned, I'm completely surprised (and thrilled!) at his energy level.
Back in early January (January 7th, I believe), Asher was trying to walk down the stairs by himself in our house. He couldn't do it. He was so weak and clumsy and uncoordinated that he nearly fell and stumbled down the stairs. When first realizing that her child would tumble down the stairs, a good mom would have run up the stairs to catch him. I didn't do that. Instead, I grabbed the nearby video camera and filmed it so that I can take the video clip to the doctor and get an understanding of why he was suddenly having trouble going down the stairs. The doctor was also concerned and said it looked like a muscular dystrophy sort of thing. Yeah, I know, like that's comforting.
I'm thrilled to report that this past week, Asher trotted up and down the stairs - by himself - like it was nothing! Woo hoo!
Another huge improvement is that his hands haven't been shaking. Until recently, Asher has suffered from "Parkinson-like shakes" in his hands. Really. It was hard for him to hold a cup of his elemental formula because his hands would shake so much that he'd drop it. I'm proud to report that this past week, his hands haven't shaken like that at all! That's HUGE!
Again, I wish I knew what is making Asher feel so great. We'll just enjoy riding this great energy wave for as long as it continues...and hope for a nice long ride.
Both boys had an absolutely wonderful experience at gymnastics camp. Asher did things I never thought possible - for him. On Tuesday, my jaw hit the floor when I saw him playing tug-of-war. He (age 4) and two 5 year-olds tugged against three 6 year-olds. After several minutes, one of the 5 year-olds on Asher's side let go of the rope and sat down. To my surprise, Asher and the other boy managed to keep the tug going for MINUTES after that. I couldn't believe it.
On Thursday, Asher walked on the balance beam by himself - which is only the second time that's happened to my knowledge - and even got up on one of the higher beams and walked sideways on it by himself. I couldn't believe that one! On Friday, Asher was thrilled to show me how well he could dribble a beach ball and he LOVED playing volleyball(!). He jumped up and down in sheer excitement and hustled to get the ball so he could hit it. I couldn't believe the energy level in my kid! I began to wonder if my child was replaced by a totally different kid who just LOOKED like Asher!
In comparison, prior to these past two weeks, if Asher exerted himself for an hour, he would be wiped out for the next week. So in addition to all these new skills he learned, I'm completely surprised (and thrilled!) at his energy level.
Back in early January (January 7th, I believe), Asher was trying to walk down the stairs by himself in our house. He couldn't do it. He was so weak and clumsy and uncoordinated that he nearly fell and stumbled down the stairs. When first realizing that her child would tumble down the stairs, a good mom would have run up the stairs to catch him. I didn't do that. Instead, I grabbed the nearby video camera and filmed it so that I can take the video clip to the doctor and get an understanding of why he was suddenly having trouble going down the stairs. The doctor was also concerned and said it looked like a muscular dystrophy sort of thing. Yeah, I know, like that's comforting.
I'm thrilled to report that this past week, Asher trotted up and down the stairs - by himself - like it was nothing! Woo hoo!
Another huge improvement is that his hands haven't been shaking. Until recently, Asher has suffered from "Parkinson-like shakes" in his hands. Really. It was hard for him to hold a cup of his elemental formula because his hands would shake so much that he'd drop it. I'm proud to report that this past week, his hands haven't shaken like that at all! That's HUGE!
Again, I wish I knew what is making Asher feel so great. We'll just enjoy riding this great energy wave for as long as it continues...and hope for a nice long ride.
Thursday, June 12, 2008
Amaranth - Day Six
We're one day past the dreaded Day Five of the amaranth trial and....so far so good. Phew! Of course it's just a tentative food trial pass until the definitive biopsy results.
Asher now has three tentative additional foods: banana, cauliflower, and amaranth. He's just about doubled the amount of foods he can eat. Gotta love that!
We chose amaranth because it's a low allergen grain which makes a great substitute flour to use in baking. Now, if only we could find amaranth flour. I can't find it anywhere! Who knew it would be so hard to find?
Asher and Simi are enrolled in gymnastics camp this week. Asher is attending in the morning; Simi attends all day. Both boys are doing GREAT at gymnastics camp. Simi is winning all sorts of ribbons for being the best in certain events. The counselors are coming up to me and saying how talented he is. Who knew?!
Asher now has three tentative additional foods: banana, cauliflower, and amaranth. He's just about doubled the amount of foods he can eat. Gotta love that!
We chose amaranth because it's a low allergen grain which makes a great substitute flour to use in baking. Now, if only we could find amaranth flour. I can't find it anywhere! Who knew it would be so hard to find?
Asher and Simi are enrolled in gymnastics camp this week. Asher is attending in the morning; Simi attends all day. Both boys are doing GREAT at gymnastics camp. Simi is winning all sorts of ribbons for being the best in certain events. The counselors are coming up to me and saying how talented he is. Who knew?!
I was a bit concerned about Asher being in camp. Asher gets wiped out for a full week after a mere one hour of strenuous activity. You can imagine my concern about him being able to last for three hours a day for five days. So imagine my surprise at how great he's doing! Just today I watched Asher walk the balance beam all by himself. That's only the second time - ever - that I've seen him do that. AND, he got himself up on one of the high balance beams and walked sideways on it - all by himself. He's always been too scared to even venture on the high balance beam before - and to do it all by himself is absolutely amazing. I still can't believe he did that! He was also VERY proud to show me just how well he dribbled a ball. I think that's a milestone too. He was even more excited about that than anything else.
So, Asher's riding a great wave right now. It's a GREAT wave and a super-enjoyable ride. We'll just enjoy it for as long as it lasts.
Monday, June 09, 2008
Amaranth
We've declared cauliflower a tentative, preliminary success (until confirmed by endoscopy) and have now moved on to a new food trial: amaranth. Amaranth is a low allergen grain which makes a great substitute when baking. Raj has used millet previously, which is another low allergen grain with high protein. The downside of millet is that it's very crumbly. Hence the amaranth.
Saturday was day one of the amaranth trials. I cooked it according to the directions and served it to Asher. Simi, who was seated across the table from Asher, asked Asher what it tasted like. "Like cooked plastic", was Asher's reply. "HUH?", was my reaction. I tasted it and learned that Asher was right - it did, indeed, taste like cooked plastic. Poor kid. He's supposed to get some savory enjoyment from eating. It should be yummy, not disgusting. Why isn't it written anywhere that amaranth tastes like cooked plastic?
Asher's still eating it, though. Perhaps something new is better than nothing. I've started to add things like sugar and salt into it (so that it tastes like sweet/salty cooked plastic). Raj suggested to Asher that, since Asher is the Little Chef, that he do some testing with the amaranth to get it to his liking. We all loved that idea and now the Little Chef gets to do some cooking!
Saturday was day one of the amaranth trials. I cooked it according to the directions and served it to Asher. Simi, who was seated across the table from Asher, asked Asher what it tasted like. "Like cooked plastic", was Asher's reply. "HUH?", was my reaction. I tasted it and learned that Asher was right - it did, indeed, taste like cooked plastic. Poor kid. He's supposed to get some savory enjoyment from eating. It should be yummy, not disgusting. Why isn't it written anywhere that amaranth tastes like cooked plastic?
Asher's still eating it, though. Perhaps something new is better than nothing. I've started to add things like sugar and salt into it (so that it tastes like sweet/salty cooked plastic). Raj suggested to Asher that, since Asher is the Little Chef, that he do some testing with the amaranth to get it to his liking. We all loved that idea and now the Little Chef gets to do some cooking!
Friday, June 06, 2008
The First Grader
Simi is - officially - no longer a kindergartner. Today was his last day in the kindergarten class. He officially joins the first grade class when he returns to school.
Simi ended the year reading at a level 30. I think that's a third grade level. The expectation is that children finish kindergarten reading at a level 4. Shucks, he STARTED the year reading at a level 14!
He has been doing first grade math all year. Simi's teacher tells us that during math time, Simi will always create math equations where he has to subtract. I think he's already mastered addition and likes the challenge that something new, like subtraction, brings.
To celebrate, Simi and Asher got to go play at Monkey Joe's. They had an absolute blast.
My baby is growing up WAY too fast. Pretty soon, he'll be moving off to college. Sob....
Simi ended the year reading at a level 30. I think that's a third grade level. The expectation is that children finish kindergarten reading at a level 4. Shucks, he STARTED the year reading at a level 14!
He has been doing first grade math all year. Simi's teacher tells us that during math time, Simi will always create math equations where he has to subtract. I think he's already mastered addition and likes the challenge that something new, like subtraction, brings.
To celebrate, Simi and Asher got to go play at Monkey Joe's. They had an absolute blast.
My baby is growing up WAY too fast. Pretty soon, he'll be moving off to college. Sob....
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