Well we just hit 2 weeks off school. Ian and Benjamin go back tomorrow. I have to say, I usually get really anxious when I know we're going to have that much time off. And this time was no different.
However, the kids did so incredibly well over the time off. That was even traveling by car out of state too. We had no major meltdowns or injuries. There was lots of time of playing nicely together. No illnesses. Wow, what more could I ask for? I would say the biggest problem was when we were with another smaller family member who has a hard time 'understanding' Ian anyway. That was par for course and nothing unusual.
I also forgot to mention that we increased Ian's dose of clonidine to a .2mg pill a day. He still takes 1/4 of the pill in the A.M. and afternoon, and 1/2 pill at bedtime. We're thinking this increase may have contributed to Ian's positive behavior. He's never had the dose increased since he started taking it a couple years ago.
Another step in the right direction is that while we were out of town, Ian decided that instead of saying 'shut-up' (which he picked up and brought home from school - getting disciplined when he'd say it), he would say 'be quiet'. We praised him a lot for this and are very proud of him. We still catch him saying 'shut-up' every once in a while. And he still gets in trouble for it. Now we have to get Benjamin to stop saying it!
On 3 different occasions (not in a row), Benjamin has come to me to tell me he has to go potty and then goes to the bathroom and does it! Treat time!!!!! On of those times he was in the bathtub and told me he had to pee. So I told him to get out and pee. He did. Now that would make any mama proud!
Showing posts with label medication. Show all posts
Showing posts with label medication. Show all posts
Wednesday, January 4, 2012
Friday, January 29, 2010
Day 2...Kid Update
Two days in a row...so far, so good.
This is more of a kid update. We started Benjamin on folic acid therapy recently. He's been gaining some words here and there, so I was hoping by starting it, maybe he would soon start putting 2 words together...if he responds the way we've seen Ian respond to it. He was so cute the other day because he imitated what he always hears Ian say after a video has stopped..."uh-oh, stopped!" So cute! I also just got loaned to me an auditory device from our early childhood intervention program. Or maybe it's called augmentory...not sure. Anyway, it's suppose to help with language by having him work on making a choice between 2 items, push the button with the picture of his choice, and hearing the item (plus, we'll add the word "please" to make it 2 words). Goal is that since he's a good imitator, he'll start to imitate what he hears on the device.
Benjamin has also the process to begin the PPCD program (same program Ian started in) at school. As I look at Benjamin, it's so hard for me to imagine Ian that little starting school (Pre-K). As soon as he turns 3 in April, he can start the program. We're so excited to be able to be working with the same teacher Ian had for 3 years. She's just wonderful. And, of course, there's a lot of nervousness because Benjamin and Ian are so different. But I've no doubt it'll be great for him.
Avery is just doing wonderfully....well, if you take out the huge amount of 'attitude' she's gained. :) I was so proud because her Pre-K sent home a note letting us know the kids will be working on learning their phone number....Avery already knows hers, and her address. Hopefully she'll 'show off' her knowledge instead of being shy and acting like she doesn't know it. She's been such a good big and little sister to the boys. She's so loving and caring toward them (when they're not fighting of course). Her and Benjamin are best buds.
Ian is doing great in school. We started working on recognizing numbers at home. I figured out that he can count really well, but he can't recognize that a written number actually stands for something. So, we've been working on the #1 for a couple of weeks now. I made this huge #1 and put it on the wall. Then I spelled the word out and put 1 dinosaur with it. Everyday we would go over it. Everyday he would say every other number but 1. We had a breakthrough 2 days ago! He only called it a 4 before then calling it a 1. I was sooooo proud!
We went to the neurologist a few weeks ago (which is always a waste of my time...gotta find a new one). I told him we would like to switch him off the guanfacine and back to clonodine. Of course, he didn't argue with me (since I know more than him in this area). We think it has helped him out at school by taking partial dose in the morning, then another 4-5 hours later. We've loved it at night because he's practically back to wanting to put himself to bed.
Once again, I'd better end before you decide to quit reading!
This is more of a kid update. We started Benjamin on folic acid therapy recently. He's been gaining some words here and there, so I was hoping by starting it, maybe he would soon start putting 2 words together...if he responds the way we've seen Ian respond to it. He was so cute the other day because he imitated what he always hears Ian say after a video has stopped..."uh-oh, stopped!" So cute! I also just got loaned to me an auditory device from our early childhood intervention program. Or maybe it's called augmentory...not sure. Anyway, it's suppose to help with language by having him work on making a choice between 2 items, push the button with the picture of his choice, and hearing the item (plus, we'll add the word "please" to make it 2 words). Goal is that since he's a good imitator, he'll start to imitate what he hears on the device.
Benjamin has also the process to begin the PPCD program (same program Ian started in) at school. As I look at Benjamin, it's so hard for me to imagine Ian that little starting school (Pre-K). As soon as he turns 3 in April, he can start the program. We're so excited to be able to be working with the same teacher Ian had for 3 years. She's just wonderful. And, of course, there's a lot of nervousness because Benjamin and Ian are so different. But I've no doubt it'll be great for him.
Avery is just doing wonderfully....well, if you take out the huge amount of 'attitude' she's gained. :) I was so proud because her Pre-K sent home a note letting us know the kids will be working on learning their phone number....Avery already knows hers, and her address. Hopefully she'll 'show off' her knowledge instead of being shy and acting like she doesn't know it. She's been such a good big and little sister to the boys. She's so loving and caring toward them (when they're not fighting of course). Her and Benjamin are best buds.
Ian is doing great in school. We started working on recognizing numbers at home. I figured out that he can count really well, but he can't recognize that a written number actually stands for something. So, we've been working on the #1 for a couple of weeks now. I made this huge #1 and put it on the wall. Then I spelled the word out and put 1 dinosaur with it. Everyday we would go over it. Everyday he would say every other number but 1. We had a breakthrough 2 days ago! He only called it a 4 before then calling it a 1. I was sooooo proud!
We went to the neurologist a few weeks ago (which is always a waste of my time...gotta find a new one). I told him we would like to switch him off the guanfacine and back to clonodine. Of course, he didn't argue with me (since I know more than him in this area). We think it has helped him out at school by taking partial dose in the morning, then another 4-5 hours later. We've loved it at night because he's practically back to wanting to put himself to bed.
Once again, I'd better end before you decide to quit reading!
Friday, August 14, 2009
Can't Sleep
It's 1:40am and I can't sleep. Didn't someone else just have this problem not too long ago? So, I thought I would get up, eat another 1/4 of the container of icecream, and add an entry to my blog.
Ian is up to his old habit of not sleeping through the night again. Very irritating. He doesn't cry out and get mad like he used to. He just 'happy screams' in there. Not too long ago, he woke the other ones up. Not cool! He's in there now awake. We just up'd his does of guanfacine cause we were noticing that it didn't seem to be having the same affects. If we don't notice anything after a few weeks of the increased dose, I think we'll go back to clonodine again. We're thinking that maybe since he's gained weight since the last time he was on it, maybe he'll be able to take a small dose of it during the day without it knocking him out.
Remember my 20 year old niece who got married in April? Well, I don't remember if I already told you that she's pregnant. She got pregnant like immediately. She's 17 weeks. Well, she called about a week ago to let me know she got tested for FX and found out she's a carrier. It's weird, but all of a sudden, it seems the whole family is now wanting to read up on it more. It's a good thing, but it kinda woulda been nice to have them so gungho about knowing more about it when we got our diagnoses of fully mutated. My other sister just recently asked me for the websites. My mom said she read something, something, something about the repeats. And of course, my oldest sister (the niece's mom) is wanting to know more about it obviously. I'm not mad, just kind of feeling.....I'm not sure. Probably don't need to go there anyway. I just wish everyone would have wanted to be more educated when I needed them to be....with all my diagnoses. I actually hadn't thought about any of that until I started writing this entry. Oh well, better late than never.
Ian LOST another tooth. No idea where. But at least there wasn't blood everywhere this time. He looks awfully cute with his two bottom teeth out. He's got a tooth growing back in place of the first one. I just hope his permanent teeth are as pretty as his first set. I love his teeth.
AVERY SAYING: One more story, then off to bed. Grandma was watching the kids yesterday and told me this story: The kids were watching football (we have several games recorded for Ian, who loves to watch them over and over and over and over). She decided to give them a quick football lesson. She told them that the man with the ball needed to run fast to the yellow (first down) line. If he didn't make it, they had to try again. So, Avery pipes up and says, "Oh, that's like when I wait to long and don't make it to the potty. I tee-tee in my panties because I didn't make it to the yellow line." Too cute!
Ian is up to his old habit of not sleeping through the night again. Very irritating. He doesn't cry out and get mad like he used to. He just 'happy screams' in there. Not too long ago, he woke the other ones up. Not cool! He's in there now awake. We just up'd his does of guanfacine cause we were noticing that it didn't seem to be having the same affects. If we don't notice anything after a few weeks of the increased dose, I think we'll go back to clonodine again. We're thinking that maybe since he's gained weight since the last time he was on it, maybe he'll be able to take a small dose of it during the day without it knocking him out.
Remember my 20 year old niece who got married in April? Well, I don't remember if I already told you that she's pregnant. She got pregnant like immediately. She's 17 weeks. Well, she called about a week ago to let me know she got tested for FX and found out she's a carrier. It's weird, but all of a sudden, it seems the whole family is now wanting to read up on it more. It's a good thing, but it kinda woulda been nice to have them so gungho about knowing more about it when we got our diagnoses of fully mutated. My other sister just recently asked me for the websites. My mom said she read something, something, something about the repeats. And of course, my oldest sister (the niece's mom) is wanting to know more about it obviously. I'm not mad, just kind of feeling.....I'm not sure. Probably don't need to go there anyway. I just wish everyone would have wanted to be more educated when I needed them to be....with all my diagnoses. I actually hadn't thought about any of that until I started writing this entry. Oh well, better late than never.
Ian LOST another tooth. No idea where. But at least there wasn't blood everywhere this time. He looks awfully cute with his two bottom teeth out. He's got a tooth growing back in place of the first one. I just hope his permanent teeth are as pretty as his first set. I love his teeth.
AVERY SAYING: One more story, then off to bed. Grandma was watching the kids yesterday and told me this story: The kids were watching football (we have several games recorded for Ian, who loves to watch them over and over and over and over). She decided to give them a quick football lesson. She told them that the man with the ball needed to run fast to the yellow (first down) line. If he didn't make it, they had to try again. So, Avery pipes up and says, "Oh, that's like when I wait to long and don't make it to the potty. I tee-tee in my panties because I didn't make it to the yellow line." Too cute!
Thursday, October 2, 2008
Dad Update; Argh! on Drugs; Nine Years; And Poop Galore
After a week of being with my dad, I'm back home now. The Lord let me leave with more peace than I thought I could have. During the day before I left, my dad was very coherent and his speech was great. He was very tired and sleepy still, but he didn't have many disoriented moments. They have him on Tylenol now instead of the morphine. His bandages are off to expose the staples (27 of them!). My mom said he had a very good and restful night last night. He was able to eat food (dysphasia diet), and his swallowing test came back clear. So please continue to be praying for a full recovery and for him to get out of ICU, and also for no other issues to arise. And keep praying for him to come to know the Lord as his Savior through all this.
Now the yuck part. We're still working on the medication stuff for Ian. It's been a bit of a contention area. I think we aren't giving it enough time, not to mention it doesn't seem really fair to judge it after only 3 weeks, when one of those weeks has been complete chaos for Ian...mom gone for a week, dad taking care of them, other caregivers taking care of them, and green snotty nose. Hmmmm, sounds like enough to throw ME over! So, we've taken him off the Strattera and have an appointment with the new neurologist on the 24th....hoping for a cancellation before then.
Today is our 9 year wedding anniversary! We both agree that we are even more in love now than when we first married. The Lord can do great and amazing things. He really has shown us a lot during our marriage, especially during these hard 3 years of our 3 childrens' diagnoses. I've decided that for us there are 2 options in our life circumstance....we either work together, or we don't. And our working together has to include the Lord as head of our marriage. He's much better at peace than we are. Anyhoo, I'm very fortunate to have Jim as my husband, best friend, and daddy of my children.
I can't forget to mention my darling Avery. In the last week she has twice disappeared to bathroom with us knowing. Then we hear a sweet little, "Mommy!" or "Daddy!" By the smell on our way to the bathroom, we know what to expect. Our little girl has gone poop completely on her own! I am sooo happy and soooo proud.
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