'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.
Thursday, September 23, 2010
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.
Wednesday, September 15, 2010
First Day of First Grade...
A few years back, we initiated the process of getting Max into preschool. We knew a move was ahead of us, and wanted to be prepared with an IEP (individualized educational plan) wherever we ended up.
We went to his early intervention meeting, where they did lots of assessments of him...early in the morning...while he was sleeping through most of it. At the end, one of the assessors said, "He'll likely be put in the class with the most severely disabled, because he's diapered." .
I left so discouraged and upset. After all that, they would just put him in a room of kids because he needs a diaper changed? Needless to say, I wasn't looking forward to school. And, as it turned out, life was about to take us for quite a ride.
We sold our house and moved to England...then to California...then back to Colorado. In all that time, in each of those situations, we looked at the schools Max would attend. Even up until last year, when he was to start kindergarten. Except...that pesky H1N1 flu was going around, and even meeting with people from the school was off limits to avoid getting it brought into our house.
So, this was the year. We enrolled him early in the summer, and got the ball rolling on home-bound schooling. We had a meeting a few weeks back with all of the school officials that would be a part of making up his IEP, and his team of educators.
Since then, we've talked on the phone with the school's therapists, and nurse, and his teacher. We finally started school yesterday! Max's teacher, Mrs. G. came for an hour for him to get to know her voice, and to know that she was a safe person for him to be around before getting right into teaching. We still have to finalize his IEP, some time in October, but until then she will come every Tuesday and Thursday to our house and teach him for about an hour each time.
Yesterday, Max was very excited for school! We dressed him in his yellow motorcycle shirt, yellow bandana, and yellow shoes...of course!
When Mrs. G. got here, she and I chatted mostly about his likes and dislikes. She is going to have to get to know his type of communication. And how to push him just enough, without pushing too much! Max was happy about us just jabbering away, he was ready for SCHOOL!!!! And he let her know, by starting to fuss and giving his sign for "more"!!!
"Are you ready to learn? I have some cards for you!" Mrs. G. pulled this card out and started telling him about the apple on the other side. "A is for Apple" and "Apples are RED!". She then got in his line of vision and did the sign for "red", that's when he smiled.
Next, it was time for Mrs. G. to explain to Max that when it is time for school, we need to wear our glasses. It would be a cue to him that it was time for school.
And he was okay with that, because Mrs. G. said she would wear her glasses for school too.
The next card was about ice skates and a yellow jacket. He was very attentive to her teaching him. It was at this point I was amazed at his willingness to do school. He's so ready for this!
They ended their time with reading a BIG book. She held up two very large books and asked him to choose with his eyes. This is something I didn't think he would or could do. But, he very clearly looked at the large book with all the animals on it for his choice. So, they "read" the book together.
Here are a couple of videos of their school time.
All in all, a great first time doing school. I am happy he'll be able to do his schooling at home. It will give him the best chance to stay healthy, while still being able to be a part of school!
We went to his early intervention meeting, where they did lots of assessments of him...early in the morning...while he was sleeping through most of it. At the end, one of the assessors said, "He'll likely be put in the class with the most severely disabled, because he's diapered." .
I left so discouraged and upset. After all that, they would just put him in a room of kids because he needs a diaper changed? Needless to say, I wasn't looking forward to school. And, as it turned out, life was about to take us for quite a ride.
We sold our house and moved to England...then to California...then back to Colorado. In all that time, in each of those situations, we looked at the schools Max would attend. Even up until last year, when he was to start kindergarten. Except...that pesky H1N1 flu was going around, and even meeting with people from the school was off limits to avoid getting it brought into our house.
So, this was the year. We enrolled him early in the summer, and got the ball rolling on home-bound schooling. We had a meeting a few weeks back with all of the school officials that would be a part of making up his IEP, and his team of educators.
Since then, we've talked on the phone with the school's therapists, and nurse, and his teacher. We finally started school yesterday! Max's teacher, Mrs. G. came for an hour for him to get to know her voice, and to know that she was a safe person for him to be around before getting right into teaching. We still have to finalize his IEP, some time in October, but until then she will come every Tuesday and Thursday to our house and teach him for about an hour each time.
Yesterday, Max was very excited for school! We dressed him in his yellow motorcycle shirt, yellow bandana, and yellow shoes...of course!
When Mrs. G. got here, she and I chatted mostly about his likes and dislikes. She is going to have to get to know his type of communication. And how to push him just enough, without pushing too much! Max was happy about us just jabbering away, he was ready for SCHOOL!!!! And he let her know, by starting to fuss and giving his sign for "more"!!!
"Are you ready to learn? I have some cards for you!" Mrs. G. pulled this card out and started telling him about the apple on the other side. "A is for Apple" and "Apples are RED!". She then got in his line of vision and did the sign for "red", that's when he smiled.
Next, it was time for Mrs. G. to explain to Max that when it is time for school, we need to wear our glasses. It would be a cue to him that it was time for school.
And he was okay with that, because Mrs. G. said she would wear her glasses for school too.
The next card was about ice skates and a yellow jacket. He was very attentive to her teaching him. It was at this point I was amazed at his willingness to do school. He's so ready for this!
They ended their time with reading a BIG book. She held up two very large books and asked him to choose with his eyes. This is something I didn't think he would or could do. But, he very clearly looked at the large book with all the animals on it for his choice. So, they "read" the book together.
Here are a couple of videos of their school time.
All in all, a great first time doing school. I am happy he'll be able to do his schooling at home. It will give him the best chance to stay healthy, while still being able to be a part of school!
Monday, September 13, 2010
This and That...
Max is having a day of rest...by way of Ativan knocking him out. He had a few seizures in the early morning, so he needed his medicine to stop them. Which means he's knocked out for the day.
This gives me a few minutes to sit and write about the things that have been going on lately around here!
Our weeks have been really full. We have therapies Monday, Tuesday, and Wednesday, and every other Thursday. Friday I'm keeping open for a "free day".
I got a call from Max's teacher last week. They would be meeting last Friday to talk about his curriculum. Since the school district has 60 days total to set up his IEP and get everything finalized, it could be October before we start regular visits. But, she wants to start coming out and reading to him and let him get to know her better before "school" starts. I've decided we'll use the dining-room as his school room. That way he knows we're doing work in there, and not wishing for cartoons in the living-room!
Max is going in for his teeth to be cleaned on Thursday, this week. He will be under general anesthesia, so he's not moving around while they are cleaning his teeth, and getting xrays. If they see any places that need fillings or caps, they will do that then also. And his front two teeth, and one of his bottom teeth are loose, so we're hoping they will pull them then also. His top two have been loose since July. He doesn't let me get in his mouth much to wiggle them, so they will literally just fall out when they are ready...but that could mean while he is sleeping, and we're not wanting that at all.
He went to the doctor last Friday to see the nutritionist. He's grown this summer, and gone down on weight, so it's time to increase his calories. It's always better for him to have extra weight through the winter, so if he were to get sick, he would have some reserve.
And, since the weather has been nicer, we've been getting out a lot more with him. We'll have a couple of months more of being able to get out with him before respiratory season is in full swing. We started to think of traveling to Oklahoma to see family, and then he had a terrible evening of seizures, vomiting, and general unease. It showed us that traveling with Max right now is just not an option. We were able to keep him out of the hospital that time, because we had all the tools available at home. But, if we were on the road, or in a hotel, it just wouldn't be a possibility. And then, we would be in a place away from his doctors.
We have started the process with Make A Wish, to do a Wish trip in the spring. We'll have some volunteers come out and meet him and hear his wish soon. We'll be able to talk about all of our apprehensions of travel with Max these days. And go somewhere wonderful, all of us. I won't talk any more about it until we have the go ahead and start planning the actual trip...but it's something to look forward to, and plan for through the cold winter!
And, we have a big birthday to plan before that also! I can't believe this guy is going to be SEVEN years old! We started to talk about his birthday party yesterday with Aunty Angie...we're thinking ZOO PARTY! We'll try to go on a week day so it isn't as busy, and we're hoping to see the baby animals that were born this summer. A baby giraffe, baby sea lion, baby tigers...and my favorite baby orangutan!!! But, that's a while off still..so we'll just keep thinking about it and planning!
I'll end with a few photos from the past couple of weeks.
Max enjoying the garden at Washington Park...
Giving Daddy a "skunky look" for taking his picture...
Enjoying an evening stroll at the park..
Watching the boats on the big pond...
And watching our part of Colorado burn...
We're not near the fires, but have friends that are. It's made the air thick and asthma kick up for me and Steve. But, we're safe, and so far, so are our friends' houses.
I think we're pretty well caught up now. I'm sure things will settle soon, and I'll have time to write more...maybe. ;)
This gives me a few minutes to sit and write about the things that have been going on lately around here!
Our weeks have been really full. We have therapies Monday, Tuesday, and Wednesday, and every other Thursday. Friday I'm keeping open for a "free day".
I got a call from Max's teacher last week. They would be meeting last Friday to talk about his curriculum. Since the school district has 60 days total to set up his IEP and get everything finalized, it could be October before we start regular visits. But, she wants to start coming out and reading to him and let him get to know her better before "school" starts. I've decided we'll use the dining-room as his school room. That way he knows we're doing work in there, and not wishing for cartoons in the living-room!
Max is going in for his teeth to be cleaned on Thursday, this week. He will be under general anesthesia, so he's not moving around while they are cleaning his teeth, and getting xrays. If they see any places that need fillings or caps, they will do that then also. And his front two teeth, and one of his bottom teeth are loose, so we're hoping they will pull them then also. His top two have been loose since July. He doesn't let me get in his mouth much to wiggle them, so they will literally just fall out when they are ready...but that could mean while he is sleeping, and we're not wanting that at all.
He went to the doctor last Friday to see the nutritionist. He's grown this summer, and gone down on weight, so it's time to increase his calories. It's always better for him to have extra weight through the winter, so if he were to get sick, he would have some reserve.
And, since the weather has been nicer, we've been getting out a lot more with him. We'll have a couple of months more of being able to get out with him before respiratory season is in full swing. We started to think of traveling to Oklahoma to see family, and then he had a terrible evening of seizures, vomiting, and general unease. It showed us that traveling with Max right now is just not an option. We were able to keep him out of the hospital that time, because we had all the tools available at home. But, if we were on the road, or in a hotel, it just wouldn't be a possibility. And then, we would be in a place away from his doctors.
We have started the process with Make A Wish, to do a Wish trip in the spring. We'll have some volunteers come out and meet him and hear his wish soon. We'll be able to talk about all of our apprehensions of travel with Max these days. And go somewhere wonderful, all of us. I won't talk any more about it until we have the go ahead and start planning the actual trip...but it's something to look forward to, and plan for through the cold winter!
And, we have a big birthday to plan before that also! I can't believe this guy is going to be SEVEN years old! We started to talk about his birthday party yesterday with Aunty Angie...we're thinking ZOO PARTY! We'll try to go on a week day so it isn't as busy, and we're hoping to see the baby animals that were born this summer. A baby giraffe, baby sea lion, baby tigers...and my favorite baby orangutan!!! But, that's a while off still..so we'll just keep thinking about it and planning!
I'll end with a few photos from the past couple of weeks.
Max enjoying the garden at Washington Park...
Giving Daddy a "skunky look" for taking his picture...
Enjoying an evening stroll at the park..
Watching the boats on the big pond...
And watching our part of Colorado burn...
We're not near the fires, but have friends that are. It's made the air thick and asthma kick up for me and Steve. But, we're safe, and so far, so are our friends' houses.
I think we're pretty well caught up now. I'm sure things will settle soon, and I'll have time to write more...maybe. ;)
Thursday, September 9, 2010
Sunday, September 5, 2010
Abbey's dresses...
Abbey at age 2...
We picked this up on our visit to India.
Abbey at age 10...
(I couldn't find any of her in this dress without this mask on.) From Vijay Aunty and Balu Uncle...she wore it on Halloween that year.
Abbey at age 12...
She looks so OLD in this picture...especially compared to the first photo! But, so beautiful, indeed!
We had a great weekend with Abbey. She is back in the air now, headed back to her other house until next month. She got to choose her favorite meals...Indian food, pizza at Il Vicino's and of course Chipotle...twice. ;) We celebrated her birthday this weekend since we didn't have her with us for her actual birthday. She got some books, and a ring from me. And, some shoes also. Next time she's back, we'll celebrate Max's birthday. Then it will be Thanksgiving...and then Christmas...and then the year is done! Wow...it's going by so fast!
I hope everyone is having a great holiday weekend. We've got a busy week ahead...so for now, I'm going to just relax...after some housework. Since everyone else is off of work, I can actually get some house work done without worrying about being too loud for Steve downstairs, or missing a phone call. So, we'll crank the music up and get all the floors cleaned and laundry done. Then...I can relax. :D
We picked this up on our visit to India.
Abbey at age 10...
(I couldn't find any of her in this dress without this mask on.) From Vijay Aunty and Balu Uncle...she wore it on Halloween that year.
Abbey at age 12...
She looks so OLD in this picture...especially compared to the first photo! But, so beautiful, indeed!
We had a great weekend with Abbey. She is back in the air now, headed back to her other house until next month. She got to choose her favorite meals...Indian food, pizza at Il Vicino's and of course Chipotle...twice. ;) We celebrated her birthday this weekend since we didn't have her with us for her actual birthday. She got some books, and a ring from me. And, some shoes also. Next time she's back, we'll celebrate Max's birthday. Then it will be Thanksgiving...and then Christmas...and then the year is done! Wow...it's going by so fast!
I hope everyone is having a great holiday weekend. We've got a busy week ahead...so for now, I'm going to just relax...after some housework. Since everyone else is off of work, I can actually get some house work done without worrying about being too loud for Steve downstairs, or missing a phone call. So, we'll crank the music up and get all the floors cleaned and laundry done. Then...I can relax. :D
Friday, September 3, 2010
We're still growing!!!
Max's pumpkin is still growing out back.
August 22...
September 3...
August 22...
September 3...
Max got out to check it out the other day...
They are going to be GREAT PUMPKINS!!!
August 22...
September 3...
August 22...
September 3...
Max got out to check it out the other day...
They are going to be GREAT PUMPKINS!!!
Subscribe to:
Posts (Atom)