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!
Tuesday, January 13, 2009
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.
Subscribe to:
Posts (Atom)