Max's teacher has been coming for a couple of weeks now, to get him used to her voice, and for her to learn him a bit more before his IEP in a couple of weeks. I'm so glad she had the foresight to do this, because I think already she has learned a lot about him that she has been able to go back and tell the officials at the school writing up his IEP.
I took a few videos of him playing in school on Thursday. The videos aren't anything spectacular, but I just mostly wanted to capture his interactions with his teacher. And get a bit of their time together.
"B" is for Bubbles...one of his favorite activities, because she's the first person to figure out he likes the bubbles blown ON him, rather than away from him.
This little button plays "I feel good", he hits it once and it starts with a howl, and hits it again and it stops. When he starts it up, Mrs. G. claps for him. I really love that I got some of her encouraging him. She's only been with him four times now, and already she's picked up so many of his little quirks.
On this one, I love the way she fixes his glasses at the end...
I got to chat with her a bit at the end of their time the other day. She's really going to be such a great teacher for him. And a great addition to his team of people who care for him!
Saturday, October 2, 2010
Thursday, September 30, 2010
Let's get wishing...
Let the wishing begin! We have to come up with 3 wishes, and will meet with the volunteer who will help it all get organized soon. It made me a little teary when I opened the letter up yesterday. It's going to be great, whichever wish he gets granted!
Wednesday, September 29, 2010
Eye see you!!!
Max did have a fairly good day yesterday.
He had Occupational Therapy, which he played on his iPad, to keep it calm.
And then it was time for school. He was starting to feel a little grumpy towards the end of school, but he got through playing with bubbles...which he tried to pop with his hands. Putting the dates on his calendar, September, Tuesday, and 28th. Then he told his teacher "Ah-ah-uuuuuh" (that is October). She knows his birthday is coming up, and he's excited for October to get here!
They worked on some cause and effect, sensory things. Counting the seasons, 1,2,3,4. Phonics, and ended the time with a big book on Nature. This time he was so excited and enjoyed it so much, she asked him if he wanted to keep it until their next school date. He was excited to keep it.
His overnight didn't go great, as he kept waking up a lot. Even with his sleepy medicine. We finally got up and around this morning early to get him fed and ready to go to the eye doctor this morning.
We haven't taken him to the eye doctor at children's in a while, because we had a not so great experience with the eye doctor who used to be there. Basically, that doctor disagreed with his seizure treatment, and didn't like that we were going with his neurologist's advice, rather than hers. So, anywho..she's gone and three other doctors are there instead. We saw the newest on today, and she was great!
We got in and they dilated his eyes, and then took a look at his current prescription. She saw that his overall eye health was good. With his metabolic disease, he can have specific eye problems, that they like to look out for, which Max does not have signs of. Also, his prescription needed adjusted. Our fella has got a crazy strong prescription, which make his glasses pretty thick. Well, he got a stronger prescription, which should make them thicker yet.
As we were on the way to the appointment, I had to let him know what we were doing. Lately, as soon as we turn on the highway towards the hospital, he starts fussing and crying. I told him we were going to see a doctor who just wanted to look at his glasses to see if they still fit, and look at his pretty eyes to make sure they were still pretty. And, if they glasses didn't fit anymore, maybe we would have to find some new cool ones.
He helped me out by telling me "Eeeehlll-Yoooh!". And in his appointment, he told his doctor about 5 different times that he wanted yellow glasses!
She did say his current glasses still fit him, but maybe he needed the yellow ones too. All in all a good visit, and something else ticked off the list of appointments to get done before respiratory season, when we don't want to be in the hospital or anything! She also sent us home with a prescription for the eye drops to use for a week once we get his new prescription to make him want to wear his glasses. The drops make his eyes blurry, but once he puts his glasses on, everything clears up. So, it just makes it a much more drastic difference.
We think the eye-drops made him feel a little sleepy, because once we got him in the van, and before we were out of the parking lot, he was asleep! He slept hard all the way home. And has been pretty low-key the whole afternoon. I'm hoping for an early night of sleep tonight! And a full night of sleep!
I did call about his glasses to see if we could get them in yellow. They don't make them in yellow...TRAGEDY!!! So, we'll have to keep looking around, and also try to see what we can do with his current glasses to yellowfy them!
Also, please send all your good thoughts, prayers, rainbows, and shooting star wishes over to Little Cici tomorrow. She's having surgery on her hips, and we want her to get through it without any problems, and be able to get home and heal up really fast.
He had Occupational Therapy, which he played on his iPad, to keep it calm.
And then it was time for school. He was starting to feel a little grumpy towards the end of school, but he got through playing with bubbles...which he tried to pop with his hands. Putting the dates on his calendar, September, Tuesday, and 28th. Then he told his teacher "Ah-ah-uuuuuh" (that is October). She knows his birthday is coming up, and he's excited for October to get here!
They worked on some cause and effect, sensory things. Counting the seasons, 1,2,3,4. Phonics, and ended the time with a big book on Nature. This time he was so excited and enjoyed it so much, she asked him if he wanted to keep it until their next school date. He was excited to keep it.
His overnight didn't go great, as he kept waking up a lot. Even with his sleepy medicine. We finally got up and around this morning early to get him fed and ready to go to the eye doctor this morning.
We haven't taken him to the eye doctor at children's in a while, because we had a not so great experience with the eye doctor who used to be there. Basically, that doctor disagreed with his seizure treatment, and didn't like that we were going with his neurologist's advice, rather than hers. So, anywho..she's gone and three other doctors are there instead. We saw the newest on today, and she was great!
We got in and they dilated his eyes, and then took a look at his current prescription. She saw that his overall eye health was good. With his metabolic disease, he can have specific eye problems, that they like to look out for, which Max does not have signs of. Also, his prescription needed adjusted. Our fella has got a crazy strong prescription, which make his glasses pretty thick. Well, he got a stronger prescription, which should make them thicker yet.
As we were on the way to the appointment, I had to let him know what we were doing. Lately, as soon as we turn on the highway towards the hospital, he starts fussing and crying. I told him we were going to see a doctor who just wanted to look at his glasses to see if they still fit, and look at his pretty eyes to make sure they were still pretty. And, if they glasses didn't fit anymore, maybe we would have to find some new cool ones.
He helped me out by telling me "Eeeehlll-Yoooh!". And in his appointment, he told his doctor about 5 different times that he wanted yellow glasses!
She did say his current glasses still fit him, but maybe he needed the yellow ones too. All in all a good visit, and something else ticked off the list of appointments to get done before respiratory season, when we don't want to be in the hospital or anything! She also sent us home with a prescription for the eye drops to use for a week once we get his new prescription to make him want to wear his glasses. The drops make his eyes blurry, but once he puts his glasses on, everything clears up. So, it just makes it a much more drastic difference.
We think the eye-drops made him feel a little sleepy, because once we got him in the van, and before we were out of the parking lot, he was asleep! He slept hard all the way home. And has been pretty low-key the whole afternoon. I'm hoping for an early night of sleep tonight! And a full night of sleep!
I did call about his glasses to see if we could get them in yellow. They don't make them in yellow...TRAGEDY!!! So, we'll have to keep looking around, and also try to see what we can do with his current glasses to yellowfy them!
Also, please send all your good thoughts, prayers, rainbows, and shooting star wishes over to Little Cici tomorrow. She's having surgery on her hips, and we want her to get through it without any problems, and be able to get home and heal up really fast.
Tuesday, September 28, 2010
Sleep, it does a body good...
17 hours.
The boy just slept 17 HOURS!
(Max sleeping in his chair before we moved him to bed.)
He woke up happy, and ready for school this morning. This is the closest to his normal I've seen him in a week!
We spoke to his neurologist again yesterday evening, and he wants us to take it slow with the new medicine. He said we'll be on the same dose for another week at least...we may not need to go up.
Thank you for all your thoughts and prayers and good wishes our way.
His PT came over yesterday to give him some compressions into his joints while he tried to snooze, and a little massage. That was it! He was out like a light. He only woke a couple of times for a diaper change, and we put him in bed, and ourselves, by 9:00! We all slept very soundly...well, except for the 4:00am diaper change. But, he slept until almost 7:45 this morning.
Steve asked him if he was ready for school today, and he gave us his signature Max smile. He's been wide awake and watching a few cartoons while he's eaten.
And kicked that blanket off...
He's still too fast for me to get a good picture of his no-toothed smile!
The boy just slept 17 HOURS!
(Max sleeping in his chair before we moved him to bed.)
He woke up happy, and ready for school this morning. This is the closest to his normal I've seen him in a week!
We spoke to his neurologist again yesterday evening, and he wants us to take it slow with the new medicine. He said we'll be on the same dose for another week at least...we may not need to go up.
Thank you for all your thoughts and prayers and good wishes our way.
His PT came over yesterday to give him some compressions into his joints while he tried to snooze, and a little massage. That was it! He was out like a light. He only woke a couple of times for a diaper change, and we put him in bed, and ourselves, by 9:00! We all slept very soundly...well, except for the 4:00am diaper change. But, he slept until almost 7:45 this morning.
Steve asked him if he was ready for school today, and he gave us his signature Max smile. He's been wide awake and watching a few cartoons while he's eaten.
And kicked that blanket off...
He's still too fast for me to get a good picture of his no-toothed smile!
Monday, September 27, 2010
Serenity...
God grant me the serenity
to accept the things I cannot change;
courage to change the things I can;
and wisdom to know the difference.
I have heard this prayer through the years from my dad, and other family members who have struggled with addictions. It's the serenity prayer. And something that I've usually paired with AA, or addicts in general.
But, for the past week, I have found myself late at night - into the very early hours of the morning, reciting "God grant me the serenity to accept the things I cannot change.". I've not added on the "courage to change the things I can" bit...because I've mostly needed just a little push to get through the things I can not change.
Max has had a really rough few days. The new seizure medicine he's on, Keppra, has left him anxious, and frenetic, a heap of emotions, and sweating buckets, and wanting to be left alone, in the dark in the middle of the day. Once we get to night time, he's over taken by the tremors, or chorea, that flares up when he's on a new seizure regimen. And he can't sleep. Which kept us all up until 2:00 at least every day the past four days.
But, he's not having seizures. And that's the point, right?
Out of exhaustion and desperation, I called his neurologist this morning...hoping for a quick fix.
"Maybe he just needs a little anxiety medicine to help get him through this rough patch? Maybe he just needs Vitamin b6, I've heard that helps with the moodiness? Maybe he needs Ativan to make him sleep through the symptoms? Maybe he needs the name brand rather than the generic?"
He's good to stop in the middle of his extremely busy day to listen to me rattle off my ideas. And then simply says, "He just has to get used to it...there is no easy fix."
He went on to tell me it is a new medicine, and all are known side effects. His body just has to get used to it. We can't give him medicines to mask the new symptoms, because that can cause more problems that we can't see. We need to see how the medicine works in Max, and that means the side effects too.
Ppppphhhhhffffllltttttttlllll..........that's me deflating.
Max's neurologist has seen us in the very best of times, and the very worst of times with Max. But, I always feel like a big wiener when I cry in front of him. Whether in person or over the phone. But, rack it up to staying up way too many hours in the past few days, or just the exhaustion of not knowing how to help my boy, but I could barely keep my tears from forming and falling.
He said we could lower the dose a bit if we needed to take it slower to get him up to the dose we need, but we can't stop it, because it could cause seizures that we can't control.
I thanked him, and told him we would be in touch...and got off the phone and had myself a big ol' snot dripping cry.
Max is SO involved...but when he's not sick, no one seems to have an answer of how to help him be more comfortable. He will get past this...he did last time...he will this time. It is just going to take some time.
So, after I had my cry-out, I looked over at Max who was covered in vomit (yet another side effect of the nervousness he's had these past few days), and asked Steve to help me give him a bath. And while bathing him, I found a little of my resolve again.
They can't fix this, so we'll approach it differently, and we WILL get through it.
We need peace in our house for Max...to help him through this rough patch...to get the rest he needs and the stimulation he needs to be tired enough to sleep at night.
Because, when Max is happy, we're all happy. And when Max is not happy, we are moving mountains and lassoing the moon to try to get him back to his normal self.
to accept the things I cannot change;
courage to change the things I can;
and wisdom to know the difference.
I have heard this prayer through the years from my dad, and other family members who have struggled with addictions. It's the serenity prayer. And something that I've usually paired with AA, or addicts in general.
But, for the past week, I have found myself late at night - into the very early hours of the morning, reciting "God grant me the serenity to accept the things I cannot change.". I've not added on the "courage to change the things I can" bit...because I've mostly needed just a little push to get through the things I can not change.
Max has had a really rough few days. The new seizure medicine he's on, Keppra, has left him anxious, and frenetic, a heap of emotions, and sweating buckets, and wanting to be left alone, in the dark in the middle of the day. Once we get to night time, he's over taken by the tremors, or chorea, that flares up when he's on a new seizure regimen. And he can't sleep. Which kept us all up until 2:00 at least every day the past four days.
But, he's not having seizures. And that's the point, right?
Out of exhaustion and desperation, I called his neurologist this morning...hoping for a quick fix.
"Maybe he just needs a little anxiety medicine to help get him through this rough patch? Maybe he just needs Vitamin b6, I've heard that helps with the moodiness? Maybe he needs Ativan to make him sleep through the symptoms? Maybe he needs the name brand rather than the generic?"
He's good to stop in the middle of his extremely busy day to listen to me rattle off my ideas. And then simply says, "He just has to get used to it...there is no easy fix."
He went on to tell me it is a new medicine, and all are known side effects. His body just has to get used to it. We can't give him medicines to mask the new symptoms, because that can cause more problems that we can't see. We need to see how the medicine works in Max, and that means the side effects too.
Ppppphhhhhffffllltttttttlllll..........that's me deflating.
Max's neurologist has seen us in the very best of times, and the very worst of times with Max. But, I always feel like a big wiener when I cry in front of him. Whether in person or over the phone. But, rack it up to staying up way too many hours in the past few days, or just the exhaustion of not knowing how to help my boy, but I could barely keep my tears from forming and falling.
He said we could lower the dose a bit if we needed to take it slower to get him up to the dose we need, but we can't stop it, because it could cause seizures that we can't control.
I thanked him, and told him we would be in touch...and got off the phone and had myself a big ol' snot dripping cry.
Max is SO involved...but when he's not sick, no one seems to have an answer of how to help him be more comfortable. He will get past this...he did last time...he will this time. It is just going to take some time.
So, after I had my cry-out, I looked over at Max who was covered in vomit (yet another side effect of the nervousness he's had these past few days), and asked Steve to help me give him a bath. And while bathing him, I found a little of my resolve again.
They can't fix this, so we'll approach it differently, and we WILL get through it.
We need peace in our house for Max...to help him through this rough patch...to get the rest he needs and the stimulation he needs to be tired enough to sleep at night.
Because, when Max is happy, we're all happy. And when Max is not happy, we are moving mountains and lassoing the moon to try to get him back to his normal self.
Thursday, September 23, 2010
'Tis the Season...
'Tis the Season!
Fall is here...Autumn.
The air is crisp, the sun is bright.
Our windows stay open throughout the day, and throughout the night.
We can take walks again, without sweat dripping down our faces and backs.
Jeans and hooded jackets replace shorts and t-shirts.
Sandals are put away, and boots are brought out.
Fall...Autumn...my favorite time of year.
But, with every changing to cooler weather, brings about a sinking feeling.
Along with the extra quilts, and cinnamon scented candles, I bring out the tubs of sanitizing wipes and hand sanitizer.
I make sure to clean all of Max's toys after each therapy session.
I'm weary of everyone who comes into the house.
I feel like a pesky worry wart always reminding people, if you've been around anyone ill, or even have the beginnings of a cold, please don't come around.
When Steve travels, I worry he's going to catch something on an airplane, or airport, or sitting in an office all day.
As soon as he gets home, he quickly showers and puts his clothes in the wash...just in case.
Doctors visits are being crammed in fast and furiously to avoid respiratory season at the hospital.
I give an accusing look to any coughers or sneezers anywhere around Max...or even myself if I'm out without him. "How dare you bring your germs out in public!" I think, but don't say it...because after all, until you've lived this type of life, it's not anywhere on your radar that there are people who simply can't fight little colds like you can.
We stock up on immunity boosters, and Vitamin D for ourselves. And get ourselves, and ask those in frequent contact with Max to get a flu vaccine.
I truly hate this part of our lives. I hate the constant nagging worry.
I try to tell myself, "We have to live. We have to let him LIVE his life...and that may mean he gets a cold now and then! We need to see family, we need to see friends...we should get to live".
But then, I remember a common cold that lasted a weekend for the rest of us last year, lasted him 6 weeks.
And I pop another Vitamin D, and take another pump of the hand sanitizer, just for good measure.
Fall is here...Autumn.
The air is crisp, the sun is bright.
Our windows stay open throughout the day, and throughout the night.
We can take walks again, without sweat dripping down our faces and backs.
Jeans and hooded jackets replace shorts and t-shirts.
Sandals are put away, and boots are brought out.
Fall...Autumn...my favorite time of year.
But, with every changing to cooler weather, brings about a sinking feeling.
Along with the extra quilts, and cinnamon scented candles, I bring out the tubs of sanitizing wipes and hand sanitizer.
I make sure to clean all of Max's toys after each therapy session.
I'm weary of everyone who comes into the house.
I feel like a pesky worry wart always reminding people, if you've been around anyone ill, or even have the beginnings of a cold, please don't come around.
When Steve travels, I worry he's going to catch something on an airplane, or airport, or sitting in an office all day.
As soon as he gets home, he quickly showers and puts his clothes in the wash...just in case.
Doctors visits are being crammed in fast and furiously to avoid respiratory season at the hospital.
I give an accusing look to any coughers or sneezers anywhere around Max...or even myself if I'm out without him. "How dare you bring your germs out in public!" I think, but don't say it...because after all, until you've lived this type of life, it's not anywhere on your radar that there are people who simply can't fight little colds like you can.
We stock up on immunity boosters, and Vitamin D for ourselves. And get ourselves, and ask those in frequent contact with Max to get a flu vaccine.
I truly hate this part of our lives. I hate the constant nagging worry.
I try to tell myself, "We have to live. We have to let him LIVE his life...and that may mean he gets a cold now and then! We need to see family, we need to see friends...we should get to live".
But then, I remember a common cold that lasted a weekend for the rest of us last year, lasted him 6 weeks.
And I pop another Vitamin D, and take another pump of the hand sanitizer, just for good measure.
Thursday, September 16, 2010
Toofs...
Today, we had quite a long day for such a seemingly short procedure at the hospital.
We've been trying for a couple of years to get his teeth cleaned and xrays taken while under anesthesia at the hospital. He moves around so much, that most dentists take a quick look in his mouth, try to brush them with some floride without gagging him, and then declare him fine until another 6 months. The problem there, we have never gotten xrays of his teeth, we have never had a dentist get a good long look inside of his mouth and in between teeth to make sure he doesn't have cavities.
So this time, we pinned them in a corner and made them schedule him for a cleaning and xrays under anesthesia within a couple of weeks. Only kidding...kind of. We were pretty firm about the ridiculousness of the going round and round with having to see a dentist for them to say he needs to go under anesthesia, only to not be able to get in until the respiratory season is over. Luckily, they had a space magically open up for us, and they squeezed him in today.
We had to be there at 12:30pm...for a 2:30 appointment. Once they got us back to the room, an hour later, they quickly came in and let us know there was a possibility of him being bumped until 4:30 or later. But, they needed to call Metabolic to see if he could continue fasting for that long. Metabolic wasn't terribly worried about him fasting since they had a good amount of IV fluids set up for him. But, I didn't want him to have to be awake and hungry until 4:30, only to be told they had to reschedule us for the day.
Again...magically schedules got moved around, and low and behold, they COULD get Max in at his scheduled time. The anesthesiologist was not very happy that they had put him in such a late time in the day anyway...nor were we, but, we took what we could get. And in the end, it all worked fine.
We went back with him to the operation room, and held his wee little hand while he went to sleep. He always fights the initial gas to put him to sleep, but then he's out cold, and it always makes me a little teary seeing him there look so tiny in those big operation room with tons of people around him.
Steve and I left and went to the cafeteria to eat while we waited. They said he would likely be in there an hour, and it was pretty close to that. The doctor came out soon after we got back to the waiting room and let us know he was finished, and they had taken out the three loose teeth he had. And in fact, the one on the bottom was so loose it came out while they were putting in the xray films. I knew they were loose! He just won't let me get my fingers in his mouth for long to check on them!
She also said his first set of molars were about to come in...and there could be some pain associated with that since he doesn't chew on anything. Ugh...I guess I thought we were done with him getting teeth. This boy has always had seizures when getting teeth. But, we'll see how that all goes. We didn't get to see his teeth xrays, but I am going to ask if we can get a copy. I would love to see them! And also, going along with the theory that kids with MMA Cbl-C don't get cavities, he still has none. :)
Now, for what you've all been asking for...the photos!
Max right before going back for to the OR...he was pretty tired from being woken up so early to eat before having to fast.
And after...he woke up SO happy this time. He's had his fair share of surgeries and procedures, which he has had to be under anesthesia, and we have never seen him wake up like this. Usually, he wakes up so grumbly and mad! This time, we were brought back into post-op and he was trying to sit up in the bed!
Here's a video of the wild one...he was cracking us up!
Tonight, he's a little groggy, but listening to his opera music before bed. Right now, Pavarotti is singing him Ava Maria...one of his favorites. They did inject him with lidocaine in his mouth for the extractions, so we'll be giving him some pain medicine before bed, as it's surely worn off by now, and his gums are probably a little sore.
I did get one good shot of the toothless wonder...I'm sure we'll get some good ones once he's feeling a bit more like himself in the next few days.
We've been trying for a couple of years to get his teeth cleaned and xrays taken while under anesthesia at the hospital. He moves around so much, that most dentists take a quick look in his mouth, try to brush them with some floride without gagging him, and then declare him fine until another 6 months. The problem there, we have never gotten xrays of his teeth, we have never had a dentist get a good long look inside of his mouth and in between teeth to make sure he doesn't have cavities.
So this time, we pinned them in a corner and made them schedule him for a cleaning and xrays under anesthesia within a couple of weeks. Only kidding...kind of. We were pretty firm about the ridiculousness of the going round and round with having to see a dentist for them to say he needs to go under anesthesia, only to not be able to get in until the respiratory season is over. Luckily, they had a space magically open up for us, and they squeezed him in today.
We had to be there at 12:30pm...for a 2:30 appointment. Once they got us back to the room, an hour later, they quickly came in and let us know there was a possibility of him being bumped until 4:30 or later. But, they needed to call Metabolic to see if he could continue fasting for that long. Metabolic wasn't terribly worried about him fasting since they had a good amount of IV fluids set up for him. But, I didn't want him to have to be awake and hungry until 4:30, only to be told they had to reschedule us for the day.
Again...magically schedules got moved around, and low and behold, they COULD get Max in at his scheduled time. The anesthesiologist was not very happy that they had put him in such a late time in the day anyway...nor were we, but, we took what we could get. And in the end, it all worked fine.
We went back with him to the operation room, and held his wee little hand while he went to sleep. He always fights the initial gas to put him to sleep, but then he's out cold, and it always makes me a little teary seeing him there look so tiny in those big operation room with tons of people around him.
Steve and I left and went to the cafeteria to eat while we waited. They said he would likely be in there an hour, and it was pretty close to that. The doctor came out soon after we got back to the waiting room and let us know he was finished, and they had taken out the three loose teeth he had. And in fact, the one on the bottom was so loose it came out while they were putting in the xray films. I knew they were loose! He just won't let me get my fingers in his mouth for long to check on them!
She also said his first set of molars were about to come in...and there could be some pain associated with that since he doesn't chew on anything. Ugh...I guess I thought we were done with him getting teeth. This boy has always had seizures when getting teeth. But, we'll see how that all goes. We didn't get to see his teeth xrays, but I am going to ask if we can get a copy. I would love to see them! And also, going along with the theory that kids with MMA Cbl-C don't get cavities, he still has none. :)
Now, for what you've all been asking for...the photos!
Max right before going back for to the OR...he was pretty tired from being woken up so early to eat before having to fast.
And after...he woke up SO happy this time. He's had his fair share of surgeries and procedures, which he has had to be under anesthesia, and we have never seen him wake up like this. Usually, he wakes up so grumbly and mad! This time, we were brought back into post-op and he was trying to sit up in the bed!
Here's a video of the wild one...he was cracking us up!
Tonight, he's a little groggy, but listening to his opera music before bed. Right now, Pavarotti is singing him Ava Maria...one of his favorites. They did inject him with lidocaine in his mouth for the extractions, so we'll be giving him some pain medicine before bed, as it's surely worn off by now, and his gums are probably a little sore.
I did get one good shot of the toothless wonder...I'm sure we'll get some good ones once he's feeling a bit more like himself in the next few days.
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