These are the ways I have signed emails today.
Deana
Mom to Max
Deana
Mom to Max, MMA Cbl-C
Deana
Mom to Max, Metabolic disease, epilepsy
Deana
Mom to Max, 5 years old,
Metabolic Diseases, (MMA + HCU), Epilepsy (Intractable Seizures)
Strange how when you have a disabled child, you get the titles too.
~~~~~~~~~~~~~~~~~~~~
In an email from a friend today, she spoke of her child with a similar metabolic disease to Max. She said, she didn't want to grow him like a flower in a greenhouse, she wanted him to live out in the world like everyone else. I loved that.
~~~~~~~~~~~~~~~~~~~
We took Max to the pediatrician yesterday, after 6 weeks of diarrhea. We've changed his formula to the last one that was working. It had a smaller number of calories, but since he's been gaining steadily since the g-tube, they thought it would be okay to knock back some of the calories. I just hope the messy diapers end!
~~~~~~~~~~~~~~~~~~~
Max weighs 40 pounds, and is 45 inches tall. His pediatrician gave a little WOOT WOOT when she pointed out he is finally on the BMI chart...for the first time in his life. Hey...it only took us 5 years.
~~~~~~~~~~~~~~~~~~~
Since around Christmas, I have been going to the Chiropractor. I feel a million times better. I really have to make myself do my exercises every day...several times a day, but I can feel them working. Tomorrow I go back, and Max goes with for the second time. We don't know if it will really do anything to help, but we're going to give it a try.
~~~~~~~~~~~~~~~~~~
Max has been making a lot of new sounds lately. A few sounds in particular seriously make me giggle every time I hear them. They sound....like a little geek. He's talking through his nose. And he will often laugh after he makes the sounds. Maybe he's getting tickled!
~~~~~~~~~~~~~~~~~~
In a couple of weeks I start the CNA class. I wouldn't say I'm excited for it. Maybe just ready to do it and get it over with. Too bad they can't just say I've been doing it long enough to get the certification by experience! It will be good to get set up though.
~~~~~~~~~~~~~~~~~~
That's all for a Max - related catch up.
Thursday, January 29, 2009
Tuesday, January 27, 2009
My little guy...
Max thought his hair was SILLY!
So so silly!
Here he is tonight...
Take a closer look...he made sure he kept his switch close to him. Why? Because his smart mommy recorded his songs to it in snippets so he could hit the switch and play his music for himself. And he was dozing, and would wake up and click it, the go right back to sleep!
Here he is in his bed tonight. We needed to get creative with his window coverings as he gets the 6:00am sunshine wake up call on his side of the house. So we broke out the BACA blanket. Don't mess with Max...he's got biker's on his side!
So so silly!
Here he is tonight...
Take a closer look...he made sure he kept his switch close to him. Why? Because his smart mommy recorded his songs to it in snippets so he could hit the switch and play his music for himself. And he was dozing, and would wake up and click it, the go right back to sleep!
Here he is in his bed tonight. We needed to get creative with his window coverings as he gets the 6:00am sunshine wake up call on his side of the house. So we broke out the BACA blanket. Don't mess with Max...he's got biker's on his side!
Sunday, January 25, 2009
And the winner is...
It really made me laugh when Max chose Chi because she is another friend from middle school/high-school that I have reconnected with!!! How crazy is that?
Thanks again to everyone for playing! This was a lot of fun. If you find yourself wanting jewelry, or needing a gift for someone soon, head over to Aisha's store, Treasure Box Jewelry.
Chi, send me your address, and I'll get it over to Aisha. You'll look great in those earrings!
Thursday, January 22, 2009
Friends may come...and Friends may go...
At 6:00pm Mountain Time, I'll have Max choose. If a comment comes in after that point, we won't be adding it to the drawing. I'll let everyone know this evening who the winner is! Thanks for playing!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
The internet is a strange beast. 9 years ago, I moved away from the town I was born in and grew up my first 21 years. Most of the friends I hung onto through the years have moved away from my home town as well.
So back to the internet. A couple of years ago I got started looking into myspace. I wanted to keep up with my baby brother and sister, and that's where the youngin's were hanging out. So I signed up and low and behold...people started finding me.
People I hadn't heard from in almost 10 years were sending me emails wanting to "be my friend". Most of them I was excited to be back in touch with...a few I never responded to!
One friendship that was re-introduced was that of my friend Aisha. She and I didn't exactly run around in the same groups in high-school. But, I would say we knew who each other was, and would happily chat if we ran into each other. I did go to one of the largest high-schools in Oklahoma, with a graduating class of around 500. I didn't know every one, but I did know Aisha...because she was the smartest kid in our class!
I also knew her because I was incredibly jealous of her cultural back-ground. Yes, I've always been a culture geek, and when she danced in a multi-cultural assembly I remember being so awe-struck at the colors of her dress, and the twirling, and the beat of the music.
So the internet has brought us back around to friendship, one without cliques and extra-curricular activities to belong to. Just two moms, hacking away at life, with enough similarities to look past the differences.
So, in keeping with the promise of new things on my blog, I want to introduce to you, my friend Aisha.
She has done something recently that I would love to do one day. She's started her own business. She is making hand made jewelry and selling it on Etsy.com, at her store Treasure Box Jewelry.
Here's a sampling of her beautiful work.
To celebrate new friends, and old friends, and this being my 200th post, we are going to do something that has never been done on my blog. A GIVEAWAY!!!!!!!!!!
For this giveaway, Aisha has agreed to send to the winner these Turquoise and Honey Earrings. If I could get away with wearing dangle earrings with Max, these are my first choice of favorites on her site! I love the colors!
To enter, leave a comment with an answer to this question:
Have you found any long lost friends since joining social networking groups like Facebook, or Myspace, or just blogging?
The winner will be chosen by a most scientific method...Max will choose. :)
So, answer the question for a chance to win, but also, be sure to head over to Treasure Chest Jewelry and tell all of your friends. Oh...and don't blame me when you become addicted to Etsy.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
The internet is a strange beast. 9 years ago, I moved away from the town I was born in and grew up my first 21 years. Most of the friends I hung onto through the years have moved away from my home town as well.
So back to the internet. A couple of years ago I got started looking into myspace. I wanted to keep up with my baby brother and sister, and that's where the youngin's were hanging out. So I signed up and low and behold...people started finding me.
People I hadn't heard from in almost 10 years were sending me emails wanting to "be my friend". Most of them I was excited to be back in touch with...a few I never responded to!
One friendship that was re-introduced was that of my friend Aisha. She and I didn't exactly run around in the same groups in high-school. But, I would say we knew who each other was, and would happily chat if we ran into each other. I did go to one of the largest high-schools in Oklahoma, with a graduating class of around 500. I didn't know every one, but I did know Aisha...because she was the smartest kid in our class!
I also knew her because I was incredibly jealous of her cultural back-ground. Yes, I've always been a culture geek, and when she danced in a multi-cultural assembly I remember being so awe-struck at the colors of her dress, and the twirling, and the beat of the music.
So the internet has brought us back around to friendship, one without cliques and extra-curricular activities to belong to. Just two moms, hacking away at life, with enough similarities to look past the differences.
So, in keeping with the promise of new things on my blog, I want to introduce to you, my friend Aisha.
She has done something recently that I would love to do one day. She's started her own business. She is making hand made jewelry and selling it on Etsy.com, at her store Treasure Box Jewelry.
Here's a sampling of her beautiful work.
To celebrate new friends, and old friends, and this being my 200th post, we are going to do something that has never been done on my blog. A GIVEAWAY!!!!!!!!!!
For this giveaway, Aisha has agreed to send to the winner these Turquoise and Honey Earrings. If I could get away with wearing dangle earrings with Max, these are my first choice of favorites on her site! I love the colors!
To enter, leave a comment with an answer to this question:
Have you found any long lost friends since joining social networking groups like Facebook, or Myspace, or just blogging?
The winner will be chosen by a most scientific method...Max will choose. :)
So, answer the question for a chance to win, but also, be sure to head over to Treasure Chest Jewelry and tell all of your friends. Oh...and don't blame me when you become addicted to Etsy.
To the one...
Who has given me the WORLD...
(Agra, India-Taj Mahal, 2001)
(Beijing, China- The Great Wall of China, 2002)
(Mini Mouses's House, Disney World, 2003)
(Southern California, Max's first trip to the Beach, 2004)
WAshington Park, Denver, CO 2005)
(Laguna Beach, CA, 2006)
(London, England, 2007)
(Pacifica, CA, 2008)
Happy Birthday! I hope we have many many many more journeys together. I love you!
(Agra, India-Taj Mahal, 2001)
(Beijing, China- The Great Wall of China, 2002)
(Mini Mouses's House, Disney World, 2003)
(Southern California, Max's first trip to the Beach, 2004)
WAshington Park, Denver, CO 2005)
(Laguna Beach, CA, 2006)
(London, England, 2007)
(Pacifica, CA, 2008)
Happy Birthday! I hope we have many many many more journeys together. I love you!
Wednesday, January 21, 2009
I just don't know...
That was a Twitter update earlier today..."I just don't know...". My friend, Aisha, asked me "What don't you know?". I told her I would just have to post on it because there is just too much!
It's not a gloomy statement. It's not an exasperated statement. There's really just so much I don't know. And instead of going on and on about the millions of things I don't know, I'll tell you what I DO know.
I do know that I am noticing changes in me. Maybe it's because I am turning 30 next month. But it's little things...like...I know I really am disliking winter. I know I am day-dreaming of the ocean a lot lately. I know I would rather eat breakfast than lunch. I know I have a hard time sitting with the tv on just for noise. I know there is a necessity of vitamins every day. I know I am totally loving going to the chiropractor, because I am feeling SO much better!
I know I need to drink all of the water I've been consuming these past couple of weeks. I know that when I'm sick I HAVE to take care of myself first, otherwise I'm rubbish to anyone else. I know I wish I could be more involved in the community. I know I wish I knew instinctively how to sew. I know I'm nervous about taking the CNA course, but I know I'm going to be happy to make some extra cash! I know I have an incredibly hard time getting to sleep lately because my mind is full of all of these things.
Things I don't know...I don't know how to change some things in life. Things that I don't need to line item out for the world to see. And that's what instigated that twitter remark. And those things I still just don't know. But I know I wish I did! :)
Finally, I know that I love this kid to pieces...bits and pieces...
And I know I'm sure proud of him wanting to ALWAYS hold his head up instead of resting it in his chair!
It's not a gloomy statement. It's not an exasperated statement. There's really just so much I don't know. And instead of going on and on about the millions of things I don't know, I'll tell you what I DO know.
I do know that I am noticing changes in me. Maybe it's because I am turning 30 next month. But it's little things...like...I know I really am disliking winter. I know I am day-dreaming of the ocean a lot lately. I know I would rather eat breakfast than lunch. I know I have a hard time sitting with the tv on just for noise. I know there is a necessity of vitamins every day. I know I am totally loving going to the chiropractor, because I am feeling SO much better!
I know I need to drink all of the water I've been consuming these past couple of weeks. I know that when I'm sick I HAVE to take care of myself first, otherwise I'm rubbish to anyone else. I know I wish I could be more involved in the community. I know I wish I knew instinctively how to sew. I know I'm nervous about taking the CNA course, but I know I'm going to be happy to make some extra cash! I know I have an incredibly hard time getting to sleep lately because my mind is full of all of these things.
Things I don't know...I don't know how to change some things in life. Things that I don't need to line item out for the world to see. And that's what instigated that twitter remark. And those things I still just don't know. But I know I wish I did! :)
Finally, I know that I love this kid to pieces...bits and pieces...
And I know I'm sure proud of him wanting to ALWAYS hold his head up instead of resting it in his chair!
Tuesday, January 20, 2009
My Husband...
My husband has an incredible way with words. He has put into writing what my heart has been feeling. He's the thinker, I'm the feeler. We're a perfect match. :)
Here is what he wrote today following the inauguration of our new president. If you are on Facebook, you can find the original there on his page.
For those who don't understand...
He is not a savior.
He is not the messiah.
He cannot fix everything.
So why then?
Because a fatal blow has been dealt to prejudice and all who those who cling to it. This fatal blow is both historic and future in nature.
Whether that prejudice be based on race, color, ethicity, religion, or partisanship. Or any other characteristics you choose to identify as morally superior or inferior. The choice of separating oneself from others on the basis of characteric is wrong and antiquated. Every human has value whether you choose to see it or not.
This is symbolized by the election of someone who could still be 'racially profiled' in certain parts of this country. Perhaps those rules should finally be taken off the books now.
By someone whose parents were not allowed to be married in many states of this country when his was born. Perhaps those who supported those laws should feel repremanded now.
By someone who would still be ridiculed for being a mixed race. Perhaps those who ridicule should be silenced.
This is symbolized by the election of someone who speaks of unity, not divisiveness. Community, not segration. And strength, not bullying.
The symbolism exceeds the historical gravity of this moment. The blow to prejudice has future implications of how we rebuild our economy, how we interact in international diplomacy, and who we call our enemy.
Our enemies are not those whose physical appearance is different than ours. Nor is it those who believe differently than us.
The enemy of humanity are those who cling to forgotten ideals of personal or communal superiority based on the characteristics that define them.
Those who would suppress the humanity of others because they are not like you.
Freedom finds balance of allowing others to coexist humanely and with integrity. Freedom does not allow you to impose on the well being of others.
My enemies are not those who think differently than me. My enemies are those who say I or others have not the freedom to think differently.
Today you have been warned that your ideal of suppression or preference based on prejudice is no longer welcome.
Today change has come to America.
Here is what he wrote today following the inauguration of our new president. If you are on Facebook, you can find the original there on his page.
For those who don't understand...
He is not a savior.
He is not the messiah.
He cannot fix everything.
So why then?
Because a fatal blow has been dealt to prejudice and all who those who cling to it. This fatal blow is both historic and future in nature.
Whether that prejudice be based on race, color, ethicity, religion, or partisanship. Or any other characteristics you choose to identify as morally superior or inferior. The choice of separating oneself from others on the basis of characteric is wrong and antiquated. Every human has value whether you choose to see it or not.
This is symbolized by the election of someone who could still be 'racially profiled' in certain parts of this country. Perhaps those rules should finally be taken off the books now.
By someone whose parents were not allowed to be married in many states of this country when his was born. Perhaps those who supported those laws should feel repremanded now.
By someone who would still be ridiculed for being a mixed race. Perhaps those who ridicule should be silenced.
This is symbolized by the election of someone who speaks of unity, not divisiveness. Community, not segration. And strength, not bullying.
The symbolism exceeds the historical gravity of this moment. The blow to prejudice has future implications of how we rebuild our economy, how we interact in international diplomacy, and who we call our enemy.
Our enemies are not those whose physical appearance is different than ours. Nor is it those who believe differently than us.
The enemy of humanity are those who cling to forgotten ideals of personal or communal superiority based on the characteristics that define them.
Those who would suppress the humanity of others because they are not like you.
Freedom finds balance of allowing others to coexist humanely and with integrity. Freedom does not allow you to impose on the well being of others.
My enemies are not those who think differently than me. My enemies are those who say I or others have not the freedom to think differently.
Today you have been warned that your ideal of suppression or preference based on prejudice is no longer welcome.
Today change has come to America.
Sunday, January 18, 2009
Colds are annoying!!!
When we woke up yesterday morning, Max was sneezing. By the time we were on our way to our friends' Steve and Lauren's house about an hour away, he was drooling pools down the front of him. I knew we were in for another round of a cold.
We go to the hospital to make sure he's okay from his last illness, only for him to get sick again! Annoying!
Last night I started feeling a bit under the weather, but not awful. Today, I've not felt the best, but not awful either. I'm still functional, just a bit groggy. I've been taking my vitamins and drinking enough water to drown a horse.
Max isn't nearly as sick as he was last month this time either, so I'm hoping he'll spring back to normal by tomorrow. I think we'll have to cancel his therapy either way just to make sure.
Something that has been sweet this time with him being sick, is he wants me right by him. I know to those of you with cling-on children that sounds less than appealing, but with Max, it's rare that he shows an interest in NEEDING and WANTING us close by. He usually kicks or fusses if we try to snuggle him, so when I laid him down for the night and he rolled over and grabbed my shirt and pulled it to him, it was pretty sweet.
He went to sleep, and I got into a warm bath to try to soak off some of the shivers, and I heard him crying again. Steve was going back and forth checking on him, and until he picked him up and held him, he didn't stop his crying. So here I sit, touching his leg just enough to let him know I'm here, so he'll stay asleep. I'm just hoping his need for closeness isn't going to force me to share his bed tonight. Because when he's sick...he's all spread out and it leaves little to no room next to him!
On a different note, I am hoping to rejuvenate interest and commenting on my blog. I know so many of you are over on facebook, but I still like to have conversation on the bloggity blog, so say "hey" if you're here. I'm hoping to introduce some new friends...and old friends on here in the next little while too, it's always fun to meet new people!
Hope everyone who has tomorrow off has a lovely day...it's been named the National Day of Service tomorrow...so give of yourself what you can...to make the world a little better tomorrow. Even if it's a smile to a stranger on the street. :)
We go to the hospital to make sure he's okay from his last illness, only for him to get sick again! Annoying!
Last night I started feeling a bit under the weather, but not awful. Today, I've not felt the best, but not awful either. I'm still functional, just a bit groggy. I've been taking my vitamins and drinking enough water to drown a horse.
Max isn't nearly as sick as he was last month this time either, so I'm hoping he'll spring back to normal by tomorrow. I think we'll have to cancel his therapy either way just to make sure.
Something that has been sweet this time with him being sick, is he wants me right by him. I know to those of you with cling-on children that sounds less than appealing, but with Max, it's rare that he shows an interest in NEEDING and WANTING us close by. He usually kicks or fusses if we try to snuggle him, so when I laid him down for the night and he rolled over and grabbed my shirt and pulled it to him, it was pretty sweet.
He went to sleep, and I got into a warm bath to try to soak off some of the shivers, and I heard him crying again. Steve was going back and forth checking on him, and until he picked him up and held him, he didn't stop his crying. So here I sit, touching his leg just enough to let him know I'm here, so he'll stay asleep. I'm just hoping his need for closeness isn't going to force me to share his bed tonight. Because when he's sick...he's all spread out and it leaves little to no room next to him!
On a different note, I am hoping to rejuvenate interest and commenting on my blog. I know so many of you are over on facebook, but I still like to have conversation on the bloggity blog, so say "hey" if you're here. I'm hoping to introduce some new friends...and old friends on here in the next little while too, it's always fun to meet new people!
Hope everyone who has tomorrow off has a lovely day...it's been named the National Day of Service tomorrow...so give of yourself what you can...to make the world a little better tomorrow. Even if it's a smile to a stranger on the street. :)
Friday, January 16, 2009
No torture today...
For the second time in a month, I have a headache. For the second time this month, I spent the afternoon at Children's Hospital!
It wasn't really that bad at all...I just am on guard ALL THE TIME...making sure I don't forget anything, hoping that Max won't throw a fit, watching all of the stupid people coughing all over everything. I honestly can not believe how people just cough all over the place. There was a little girl positioned right over the face masks hacking and coughing right on them. And her parents weren't even paying attention! BLAGH!
We got in with Max's pediatrician, and changed up the way we'll feed him. The hope is that it won't be as rich to him, and he can digest it a bit easier. Also she added a probiotic to try to fix the good bacteria in his tummy.
We also changed his Mickey button(g-tube) for the first time. It was something I was really nervous about, because I really thought it would gross me out. Steve took charge and did it all, but it didn't gross me out at all, and Max was just fine with it. He didn't cry or fuss at all.
After the pediatrician appointment, we went on to the EEG test. Where the quote of the day happened. We always get a lovely lady from Eastern Europe who sets Max up for his EEG. She usually sings to him "Little little twinkle star"...and the theme from Barney, "I love you, you love me"...just those words over and over for an hour! Today, Max was ready to sleep as soon as we laid him on the bed. He should sleep through the EEG, so that's good, but it took a while for her to set him up today and he started getting fussy with her. And then the quote of the day happened, "It's ok, it's ok, Natasha not torture you today...only test today." HaHaHaHaHaaaa!!!! Who says that at a children's hospital? It cracked us up!
Our first appointment was at 1:20, and we got home at 6:00...so they stayed true to the norm, and we were there all day! Max is plum tuckered out now! I think he'll be sleeping pretty well tonight!
Tomorrow, I am excited to be going out to our friends' house for food and lots of game playing! Yippee!!!
Hope you all have a great weekend!
It wasn't really that bad at all...I just am on guard ALL THE TIME...making sure I don't forget anything, hoping that Max won't throw a fit, watching all of the stupid people coughing all over everything. I honestly can not believe how people just cough all over the place. There was a little girl positioned right over the face masks hacking and coughing right on them. And her parents weren't even paying attention! BLAGH!
We got in with Max's pediatrician, and changed up the way we'll feed him. The hope is that it won't be as rich to him, and he can digest it a bit easier. Also she added a probiotic to try to fix the good bacteria in his tummy.
We also changed his Mickey button(g-tube) for the first time. It was something I was really nervous about, because I really thought it would gross me out. Steve took charge and did it all, but it didn't gross me out at all, and Max was just fine with it. He didn't cry or fuss at all.
After the pediatrician appointment, we went on to the EEG test. Where the quote of the day happened. We always get a lovely lady from Eastern Europe who sets Max up for his EEG. She usually sings to him "Little little twinkle star"...and the theme from Barney, "I love you, you love me"...just those words over and over for an hour! Today, Max was ready to sleep as soon as we laid him on the bed. He should sleep through the EEG, so that's good, but it took a while for her to set him up today and he started getting fussy with her. And then the quote of the day happened, "It's ok, it's ok, Natasha not torture you today...only test today." HaHaHaHaHaaaa!!!! Who says that at a children's hospital? It cracked us up!
Our first appointment was at 1:20, and we got home at 6:00...so they stayed true to the norm, and we were there all day! Max is plum tuckered out now! I think he'll be sleeping pretty well tonight!
Tomorrow, I am excited to be going out to our friends' house for food and lots of game playing! Yippee!!!
Hope you all have a great weekend!
Thursday, January 15, 2009
One question...
Where would you want to wake up tomorrow?
Fifty People, One Question: Brooklyn from Crush + Lovely on Vimeo.
(Thanks to Thia who shared the link)
Where would I like to wake up? In London. I would grab some wonderful pastries from Paul Bakery and then jump on the first train to Sheffield to have lunch with Rachel. :)
Fifty People, One Question: Brooklyn from Crush + Lovely on Vimeo.
(Thanks to Thia who shared the link)
Where would I like to wake up? In London. I would grab some wonderful pastries from Paul Bakery and then jump on the first train to Sheffield to have lunch with Rachel. :)
Tuesday, January 13, 2009
My life the drama...
I once had a friend who told me that my life played out like a sit-com. I was always getting myself into impossible situations, and would often just laugh through them.
These days, however, my life seems like a drama. Some days it's an action adventure, and even some days still a comedy, but the underlying theme is drama.
I have very little tolerance for drama. I always have been put off by overly dramatic people and situations. I guess that's why I'm having such issue with my own life right now. All I can think is, ok, enough with the dramatics!
And it's not just little things adding up...it's like one huge fiasco after another. And I really just want it all to CHILL OUT!!!!!
Now that I have dumped that on the page...some of what is going on this week...hopefully without much drama!
Tomorrow I go to interview at a school to get my CNA certification. The class starts in February, and will last 4 weeks. High-school students take this class, so I'm pretty sure I can hang. But then again, high-school students do trigonometry and I'm certain I could not hang with that! Kidding aside, it will be good for me to get this certification. Even if we can't find the extra help we need, at least I'll get paid for the extra work that goes into being Max's full-time nurse plus mom.
Thursday is a break. Which means I will hopefully get to some house-work and prepare for Friday.
Friday I have a chiropractor appointment in the morning, then Max has a pediatrician appointment in the afternoon, followed by an EEG test in the late afternoon. It's a full day at Children's! The pediatrician is hopefully going to help me figure out what in the world is going on with Max's digestion lately...or lack of digestion that is. It is really out of control. And I'll leave it at that so you don't spit out your cornflakes.
The EEG is just a normal check-up to see how he's doing in his ever-growing brain. The doctor will look at it and his weight and see if we need to increase his medicines at all. He's not having any seizures, but it's best to keep ahead of them.
That's the rest of the week. I'm going to be now...still smelling the stink of bleach. Stupid bleach ruined my coats, and left a spot on the carpet, and ruined his beanbag cover. And the only reason I have the bleach is because of all of the diaper messes! Grrrr!
I hope to wake up with a much better mood. And hopefully no snow!
These days, however, my life seems like a drama. Some days it's an action adventure, and even some days still a comedy, but the underlying theme is drama.
I have very little tolerance for drama. I always have been put off by overly dramatic people and situations. I guess that's why I'm having such issue with my own life right now. All I can think is, ok, enough with the dramatics!
And it's not just little things adding up...it's like one huge fiasco after another. And I really just want it all to CHILL OUT!!!!!
Now that I have dumped that on the page...some of what is going on this week...hopefully without much drama!
Tomorrow I go to interview at a school to get my CNA certification. The class starts in February, and will last 4 weeks. High-school students take this class, so I'm pretty sure I can hang. But then again, high-school students do trigonometry and I'm certain I could not hang with that! Kidding aside, it will be good for me to get this certification. Even if we can't find the extra help we need, at least I'll get paid for the extra work that goes into being Max's full-time nurse plus mom.
Thursday is a break. Which means I will hopefully get to some house-work and prepare for Friday.
Friday I have a chiropractor appointment in the morning, then Max has a pediatrician appointment in the afternoon, followed by an EEG test in the late afternoon. It's a full day at Children's! The pediatrician is hopefully going to help me figure out what in the world is going on with Max's digestion lately...or lack of digestion that is. It is really out of control. And I'll leave it at that so you don't spit out your cornflakes.
The EEG is just a normal check-up to see how he's doing in his ever-growing brain. The doctor will look at it and his weight and see if we need to increase his medicines at all. He's not having any seizures, but it's best to keep ahead of them.
That's the rest of the week. I'm going to be now...still smelling the stink of bleach. Stupid bleach ruined my coats, and left a spot on the carpet, and ruined his beanbag cover. And the only reason I have the bleach is because of all of the diaper messes! Grrrr!
I hope to wake up with a much better mood. And hopefully no snow!
Thursday, January 8, 2009
Hey...give me that!
Adeline came over today for the day. She had one goal in mind for about an hour with Max. To take his pacifier away from him.
I have a lot more pictures on flickr(you can get there by clicking on any of these pictures), but here are a few of my favorite.
Hey Max...I want your binky!
You have your own!!!
I'll wrestle you for it!
Come on...just trade me!
Yeah! There we go! Sucker!!!
Victory!!
Max looks real impressed doesn't he? Poor thing just wanted to take a little snooze! And he finally got his wish when I put little miss thing in front of him to sit up on her own.
I have a lot more pictures on flickr(you can get there by clicking on any of these pictures), but here are a few of my favorite.
Hey Max...I want your binky!
You have your own!!!
I'll wrestle you for it!
Come on...just trade me!
Yeah! There we go! Sucker!!!
Victory!!
Max looks real impressed doesn't he? Poor thing just wanted to take a little snooze! And he finally got his wish when I put little miss thing in front of him to sit up on her own.
Wednesday, January 7, 2009
My-Name-Is-Max...
I-Am-A-ROBOT!
I don't know what brought it on tonight, but I was trying to get Max's attention, and started talking in a robot voice. And he responded with "Uh-Uh-Oh-Ah". And then he laughed!
Did you get that? "I am a Robot!". We spent the rest of the evening talking to Max in robot voices, and he would respond in turn with his own robot voice.
I read him a book in a robot voice, and found some robot voices online, which I could type something in, and it would recite in a robot voice. He loved it. This is how we find the things he likes. Like Elmo, and Opera in the past. So I guess now we're on the search for robots. Even Daddy-Robot got into the act and asked him what his robot's name was, was it George? "Yeah!", said Max.
There are moments, glimpses into a very normal little 5 year old boy. And those moments make us all so happy.
I don't know what brought it on tonight, but I was trying to get Max's attention, and started talking in a robot voice. And he responded with "Uh-Uh-Oh-Ah". And then he laughed!
Did you get that? "I am a Robot!". We spent the rest of the evening talking to Max in robot voices, and he would respond in turn with his own robot voice.
I read him a book in a robot voice, and found some robot voices online, which I could type something in, and it would recite in a robot voice. He loved it. This is how we find the things he likes. Like Elmo, and Opera in the past. So I guess now we're on the search for robots. Even Daddy-Robot got into the act and asked him what his robot's name was, was it George? "Yeah!", said Max.
There are moments, glimpses into a very normal little 5 year old boy. And those moments make us all so happy.
Tuesday, January 6, 2009
New wheels and Mr. Sleepy...
These aren't the best photos...but here he is in his new chair.
He was ready to get out of the house...and not wanting to pose for the pictures!
Now on to today...
I've had a pretty sluggish morning. We didn't sleep well last night(what's new!?), and I had to hurry to get around for my chiropractor appointment, and make sure Max was fed, and given his medicine. Max had in mind to just be a little rascal. He pulled his feeding tube apart so the formula pumped all over his bed...and then when it was time to give him his injection he flexed his He-Man muscles so much that the needle popped out and I injected most of the medicine all over his leg! I got in the shower to get ready for my appointment, and when I got out I saw he had spit up all over himself. (something he's doing a lot of lately, along with incredibly messy diapers...but it's another blog) I had 30 minutes to go until my appointment, so we got him in the bath and dressed, and hooked back up to eat while I went.
The chiropractor did his magic and I left there wishing I could just lay under that heat pad all day and sleep! It was hard to get motivated to do anything once I got home! And at 2:00 I got Max and went to bed for a while. I thought, if I could just get a little rest I would re-charge and could get some things done today.
Max wasn't having it. First, he had to tell Olive over and OVER to go to bed...or rather, get off of the bed HE was on. Then he wanted on my pillow, not on his. And just as he started to quiet down with his little head mostly on my pillow, I get a phone call...one of the return calls from yesterday. So I got up and took it, and knew a nap was nowhere in the books for me today.
I got up and started some laundry, and made Max's afternoon medicine and brought it all downstairs to hook him up. When I went back upstairs...look what I found.
It looks like his eyes are open, but he's sleeping. Little turkey just had to get me out of the bed so he could get some rest! I woke him up pretty shortly after that picture because it was his medicine time, and I was the little stinker to sleep tonight so we can too!
He was ready to get out of the house...and not wanting to pose for the pictures!
Now on to today...
I've had a pretty sluggish morning. We didn't sleep well last night(what's new!?), and I had to hurry to get around for my chiropractor appointment, and make sure Max was fed, and given his medicine. Max had in mind to just be a little rascal. He pulled his feeding tube apart so the formula pumped all over his bed...and then when it was time to give him his injection he flexed his He-Man muscles so much that the needle popped out and I injected most of the medicine all over his leg! I got in the shower to get ready for my appointment, and when I got out I saw he had spit up all over himself. (something he's doing a lot of lately, along with incredibly messy diapers...but it's another blog) I had 30 minutes to go until my appointment, so we got him in the bath and dressed, and hooked back up to eat while I went.
The chiropractor did his magic and I left there wishing I could just lay under that heat pad all day and sleep! It was hard to get motivated to do anything once I got home! And at 2:00 I got Max and went to bed for a while. I thought, if I could just get a little rest I would re-charge and could get some things done today.
Max wasn't having it. First, he had to tell Olive over and OVER to go to bed...or rather, get off of the bed HE was on. Then he wanted on my pillow, not on his. And just as he started to quiet down with his little head mostly on my pillow, I get a phone call...one of the return calls from yesterday. So I got up and took it, and knew a nap was nowhere in the books for me today.
I got up and started some laundry, and made Max's afternoon medicine and brought it all downstairs to hook him up. When I went back upstairs...look what I found.
It looks like his eyes are open, but he's sleeping. Little turkey just had to get me out of the bed so he could get some rest! I woke him up pretty shortly after that picture because it was his medicine time, and I was the little stinker to sleep tonight so we can too!
Monday, January 5, 2009
Food memories...
I love food. Love to try different food...love to cook...love to bake. Maybe it's because it is really the main thing I have control over through the never ending run on days. But I've been trying to change things up with my food selections.
I'm tired of sandwiches for lunch and some meat and potato/rice for dinner. So I've been trying some new things. Today I had pancakes for a late breakfast, and then had a mango with cottage cheese just now.
It got me to thinking, I wish I would have been older when Grandmama was still around, to cook for her, and let her try some of my adaptations on her classics! I think she really would have loved mango and cottage cheese...but honestly I don't know if she had ever tried a mango. It surely would have been a favorite of hers!
Then I thought of the other things I've had lately that she would have loved...pumelo for instance. It is the strangest sweetest grapefruit type fruit. It is almost flowery. Then I thought of my Aunt Nancy's pineapple dressing, which I make with Grandmama's favorite bread, the King's Hawaiian bread. She would have really loved that with her Christmas ham.
I love that I have such fond memories associated with food and Grandmama. And I love that every single recipe I made for Christmas came out of my other Grandma's and Aunts' family cookbook. It made the holidays extra special for me and Ang to have tastes from home.
What are some foods that remind you of your childhood? For me it is macaroni and cheese with Grandmama, and spaghetti and meatballs with Grandpa. Every time I have one of those meals I think of them!
I'm tired of sandwiches for lunch and some meat and potato/rice for dinner. So I've been trying some new things. Today I had pancakes for a late breakfast, and then had a mango with cottage cheese just now.
It got me to thinking, I wish I would have been older when Grandmama was still around, to cook for her, and let her try some of my adaptations on her classics! I think she really would have loved mango and cottage cheese...but honestly I don't know if she had ever tried a mango. It surely would have been a favorite of hers!
Then I thought of the other things I've had lately that she would have loved...pumelo for instance. It is the strangest sweetest grapefruit type fruit. It is almost flowery. Then I thought of my Aunt Nancy's pineapple dressing, which I make with Grandmama's favorite bread, the King's Hawaiian bread. She would have really loved that with her Christmas ham.
I love that I have such fond memories associated with food and Grandmama. And I love that every single recipe I made for Christmas came out of my other Grandma's and Aunts' family cookbook. It made the holidays extra special for me and Ang to have tastes from home.
What are some foods that remind you of your childhood? For me it is macaroni and cheese with Grandmama, and spaghetti and meatballs with Grandpa. Every time I have one of those meals I think of them!
Friday, January 2, 2009
The cost of living...
Today we got Max's new wheelchair. I will get some pictures soon, he really seems to like it. And I like how he's positioned! He can't kick me when he's sitting right! I think he feels like he's got more control.
When we signed the papers for the chair that took 5 months to get, the price jumped out at us most of all. $9,177.00...for a wheelchair. A pediatric wheelchair. We shook our heads in disgust and disbelief. Of course, we didn't pay a dime of that. Insurance or Medicaid will pick it up for us...but what about families without insurance. Or like our insurance, which only allows for $5,000 a year for all equipment.
The vendor says, "well you have to think of it...what's the cost of legs for your child...now he can get around." And I think...really...what's the cost of legs for your child? Oh nothing? He can walk. But because mine can't we have to get equipment that takes nearly half a year of constant checking and bugging so he can get around...by way of my constant lifting both him and his 60 pound chair in and out of the car so he can "get around". Of course I didn't say that...just smiled and thanked him for coming out and getting the chair to us.
This system of medical equipment is so broken. It's so wrong that we have to weigh out which is more important right now...a wheelchair (his legs)...or a talker(his voice)...a floor sitter(a way for him to be a part of the while family in the house)...or a car seat(so we can get him from point A to point B.) A feeding pump(so he can eat)...or therapy equipment(so he can do his therapy at home).
While a lot of these things will be covered by insurance, or medicaid, they will take multiple months to first get ordered, then sent to the insurance to get denied, then on to Medicaid to either get approved or denied.
I thought I would make a list up of all the things we would like to have for Max right now...and show you just how ridiculous the cost for these all are. And this isn't some far off, pie in the sky wish-list...these are things we need to have a comfortable existence for him.
We got the new wheelchair today, $9,177.00
We need a pushchair wheelchair, more like an umbrella stroller for the days I just can't or don't want to lift the wheelchair in the car$2,722.00
Blink Tango Talker: This is the newest talker we are trying to get through insurance medicaid right now...it's unlikely we will get it because we got the other one just a little over a year ago, which he's outgrown $6,899(several hundred more for the switches to operate it.)
Special Needs Carseat $700. He's getting so big, he's nearly outgrown the one he's in. This is something medicaid won't pay for, so we would have to hope for insurance to.
Chill-Out Chair $1830 right now he's either in a wheelchair, or on the couch laying down. We don't have anything in between for him to just chill out. We're hoping to get this covered by a local organization with funds for special needs kids for equipment that neither insurance or medicaid won't cover. We may get it, but they told us they've not ever seen someone with our income ask for their assistance.
Therapy Equipment (mats $500, balls$90, swings$1500, bolsters$250, gait trainer $3,000, stander$2,000, )
Floor sitter$500-$3,000-depending on style- for doing Occupational therapy, and playing on a peer level (aka with Adeline).
Bath chair and lift $3,000(so I don't drop him or break my back getting him out of the bath)
Stair lift $2,000 (as he gets bigger and if we stay in a house with stairs) not covered by insurance or medicaid usually.
Specialty Equipped vehicle...there's a range here. A fully equipped van runs around $60,000 for a used...brand new are around $150,000. We can get a used London Black taxi for about $30,000 used or a new one for $60,000, or try to modify our car for around $20,000(in addition to the car payment), or get a ramp and clamps for around $3,000- but this option will only work for a while as it will make him sit too tall to the roof.
If we were going for it, we would try to get a bike for him, or a trailer that I could pull him on. $3,000
A CNA/Respite monthly will make roughly $1745- or $20,940 yearly (I am hopefully going to get training to make some of this money, but will still need to hire some for help.)
Diapers $3000/yr(paid for by medicaid), formula $2880/yr(paid for by medicaid), feeding bags-feeding tube supplies $2400/yr for the tube, $2880/yr for the bags, $120/yr for the gauze and $280/yr for the wound dressing(all paid for by medicaid). Feeding pump$1500(rented by insurance/medicaid)
Medicine, we currently spend out of pocket $300 per month $3600/yr. I don't know what they would cost if we had to pay for them. Needles are $360/yr.
Let's stop there...and add it up. For the year 2009, Max will need $125,171.00 to have the same kinds of experiences a typical 5 year old would...we just have to adapt everything for him to get there.
That's not including the doctors visits and tests ran on him every three months. Those run anywhere from $300(dr visits) $200 each for OT, PT, Speech weekly, to thousands of dollars for tests and hospitalizations.
It boggles the mind how it is expected people can pay this. We are very fortunate to have good insurance and medicaid that helps us with most of this. But it will take months...some of it we won't get...so we will either pay out of pocket, or sell old equipment to come up with the cash to pay for it. I'm sure I've forgotten other things we will need, or use on a daily basis.
We love our son and we want him to have the best life he can hace...so we work the system and we make it happen. But it is such an incredible pain to get the basic things we need for him. We're not extravagant in the things we ask for. We don't expect or demand from the government. We work hard so we can keep the insurance, we pay taxes, we have daily trials that many couldn't fathom. And we make our lists at the start of the year, and hit the ground running putting in requests, hoping to get approvals, to get him what he needs...to get his legs...his feet...his voice...his nutrition...his medicine to keep him alive.
I am thankful and feel blessed to have most of our needs provided for us.
Monday I get started on my list...I want Max to have an exceptional year. I want this to be the year he exceeds expectations set by doctors and therapists. So Monday I'll hit the road running to do my part, and hope the rest falls into place and happens quickly and smoothly!
When we signed the papers for the chair that took 5 months to get, the price jumped out at us most of all. $9,177.00...for a wheelchair. A pediatric wheelchair. We shook our heads in disgust and disbelief. Of course, we didn't pay a dime of that. Insurance or Medicaid will pick it up for us...but what about families without insurance. Or like our insurance, which only allows for $5,000 a year for all equipment.
The vendor says, "well you have to think of it...what's the cost of legs for your child...now he can get around." And I think...really...what's the cost of legs for your child? Oh nothing? He can walk. But because mine can't we have to get equipment that takes nearly half a year of constant checking and bugging so he can get around...by way of my constant lifting both him and his 60 pound chair in and out of the car so he can "get around". Of course I didn't say that...just smiled and thanked him for coming out and getting the chair to us.
This system of medical equipment is so broken. It's so wrong that we have to weigh out which is more important right now...a wheelchair (his legs)...or a talker(his voice)...a floor sitter(a way for him to be a part of the while family in the house)...or a car seat(so we can get him from point A to point B.) A feeding pump(so he can eat)...or therapy equipment(so he can do his therapy at home).
While a lot of these things will be covered by insurance, or medicaid, they will take multiple months to first get ordered, then sent to the insurance to get denied, then on to Medicaid to either get approved or denied.
I thought I would make a list up of all the things we would like to have for Max right now...and show you just how ridiculous the cost for these all are. And this isn't some far off, pie in the sky wish-list...these are things we need to have a comfortable existence for him.
We got the new wheelchair today, $9,177.00
We need a pushchair wheelchair, more like an umbrella stroller for the days I just can't or don't want to lift the wheelchair in the car$2,722.00
Blink Tango Talker: This is the newest talker we are trying to get through insurance medicaid right now...it's unlikely we will get it because we got the other one just a little over a year ago, which he's outgrown $6,899(several hundred more for the switches to operate it.)
Special Needs Carseat $700. He's getting so big, he's nearly outgrown the one he's in. This is something medicaid won't pay for, so we would have to hope for insurance to.
Chill-Out Chair $1830 right now he's either in a wheelchair, or on the couch laying down. We don't have anything in between for him to just chill out. We're hoping to get this covered by a local organization with funds for special needs kids for equipment that neither insurance or medicaid won't cover. We may get it, but they told us they've not ever seen someone with our income ask for their assistance.
Therapy Equipment (mats $500, balls$90, swings$1500, bolsters$250, gait trainer $3,000, stander$2,000, )
Floor sitter$500-$3,000-depending on style- for doing Occupational therapy, and playing on a peer level (aka with Adeline).
Bath chair and lift $3,000(so I don't drop him or break my back getting him out of the bath)
Stair lift $2,000 (as he gets bigger and if we stay in a house with stairs) not covered by insurance or medicaid usually.
Specialty Equipped vehicle...there's a range here. A fully equipped van runs around $60,000 for a used...brand new are around $150,000. We can get a used London Black taxi for about $30,000 used or a new one for $60,000, or try to modify our car for around $20,000(in addition to the car payment), or get a ramp and clamps for around $3,000- but this option will only work for a while as it will make him sit too tall to the roof.
If we were going for it, we would try to get a bike for him, or a trailer that I could pull him on. $3,000
A CNA/Respite monthly will make roughly $1745- or $20,940 yearly (I am hopefully going to get training to make some of this money, but will still need to hire some for help.)
Diapers $3000/yr(paid for by medicaid), formula $2880/yr(paid for by medicaid), feeding bags-feeding tube supplies $2400/yr for the tube, $2880/yr for the bags, $120/yr for the gauze and $280/yr for the wound dressing(all paid for by medicaid). Feeding pump$1500(rented by insurance/medicaid)
Medicine, we currently spend out of pocket $300 per month $3600/yr. I don't know what they would cost if we had to pay for them. Needles are $360/yr.
Let's stop there...and add it up. For the year 2009, Max will need $125,171.00 to have the same kinds of experiences a typical 5 year old would...we just have to adapt everything for him to get there.
That's not including the doctors visits and tests ran on him every three months. Those run anywhere from $300(dr visits) $200 each for OT, PT, Speech weekly, to thousands of dollars for tests and hospitalizations.
It boggles the mind how it is expected people can pay this. We are very fortunate to have good insurance and medicaid that helps us with most of this. But it will take months...some of it we won't get...so we will either pay out of pocket, or sell old equipment to come up with the cash to pay for it. I'm sure I've forgotten other things we will need, or use on a daily basis.
We love our son and we want him to have the best life he can hace...so we work the system and we make it happen. But it is such an incredible pain to get the basic things we need for him. We're not extravagant in the things we ask for. We don't expect or demand from the government. We work hard so we can keep the insurance, we pay taxes, we have daily trials that many couldn't fathom. And we make our lists at the start of the year, and hit the ground running putting in requests, hoping to get approvals, to get him what he needs...to get his legs...his feet...his voice...his nutrition...his medicine to keep him alive.
I am thankful and feel blessed to have most of our needs provided for us.
Monday I get started on my list...I want Max to have an exceptional year. I want this to be the year he exceeds expectations set by doctors and therapists. So Monday I'll hit the road running to do my part, and hope the rest falls into place and happens quickly and smoothly!
Thursday, January 1, 2009
It's a New Year...
Happy New Year from the Watson's...a.k.a. the Funny Farm.
Steve
Deana
A-Dawg
And the King of The Wild Things...Monster Max
These photos won the prize for each of us as the worst captured moments during the holidays. We're glad they've come and gone...and we're looking forward to a new year.
Steve
Deana
A-Dawg
And the King of The Wild Things...Monster Max
These photos won the prize for each of us as the worst captured moments during the holidays. We're glad they've come and gone...and we're looking forward to a new year.
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