I know I've already posted a bit of my new years resolutions, but I'm adding to it. Its a new year, a new start, and I'm uber ready! Ill be 29 in a couple days! Its the start of a healthier life style. Here's my wishes for the new year:
I want to eliminate the few chemical items that are still used in the house, deodorant, carpet cleaner etc. I want all natural products.
I want to start dinning in more, on addition I want to start cooking more from scratch, in addition to that I'd like to grow some of our own foods to be sure its not a GMO product or that it wasn't produced with harsh chemicals.
I want to loose weight! For Christmas I got some tone up shoes, a wii workout game and I'm motivated!
I want to build up our stocked up items, never know when you will need it.
I want to pay off some debt.
Become more organized.
Spend more time with friends!
On a side note were ending this year with yucky colds and ickyness, so I want a healthier next year.
just an army wife's take on life with boys who all have their own special needs...my hands may be full but my heart is FULLER
the family
Wednesday, December 29, 2010
Saturday, December 25, 2010
Merry Christmas!
Can you believe christmas has come? oh my! and now its over....oh but what fun it was. were all a bit wore out here but we had a blast. my parents were down on the 23rd and 24th, we had one christmas with them, and then we had our christmas this morning at 8am, but 845 everything was unwrapped and it appeared as though a tornado had come thru the house. at 10am the inlaws came by with gifts as well. so needless to say after all this, after two big dinners, we are wiped out.
the boys made jack-pot this year, some wii games, some board games, toy story toys, potato heads, legos and chance's favorite, the DQ blizzard maker! of course he would love this the best....its FOOD!! the boys have a new set of pj's and zachy got lots of musical light up toys, we love leapfrog and vtech for him. hubs got some practicle items and some fun ones, some new pants, a new cross chain, watch, and a spa clock radio that he wanted. i got a pair of sketchers tone up sandles, some clothes, a new cd, giftcard to the bookstore . everyone is happy, and healthy, what more can i ask for?
hope everyone had a wonderful safe, healthy and happy holiday!
the boys made jack-pot this year, some wii games, some board games, toy story toys, potato heads, legos and chance's favorite, the DQ blizzard maker! of course he would love this the best....its FOOD!! the boys have a new set of pj's and zachy got lots of musical light up toys, we love leapfrog and vtech for him. hubs got some practicle items and some fun ones, some new pants, a new cross chain, watch, and a spa clock radio that he wanted. i got a pair of sketchers tone up sandles, some clothes, a new cd, giftcard to the bookstore . everyone is happy, and healthy, what more can i ask for?
hope everyone had a wonderful safe, healthy and happy holiday!
Thursday, December 23, 2010
thoughts for 2011
Yep, hard to believe its nearly 2011, and I'm thinking of my resolutions, I want some that stick, not just a random wish. Here are what I've decided on in no particular order ...
Weight loss, as I've stated before I'm on the list for surgery, but in addition to this, our diets have gradually changed and I am in process of making more time for me, time to get on the treadmill and wipe the dust off, time to kick it in gear. On a small note I've lost 7lbs in about 6 weeks, this small amount is a HUGE thing for me.
Become a better cook/meal planner, this means everything from mastering new recipes, branching out and trying new foods, and getting more organized. Eating out often like we have isn't healthy for us or the pocket book.
Save more moolah! As stated above, just cutting out a few fast food crap-olla meals could help here greatly.
Be more organized, paperwork gone thru, filed, get rid of junk we don't need, get back to cracking at my planners that I've slipped on lately, find more time in the day/week.
Spend more time with friends, the organization will help with this I believe, when things are less up in the air and more calm I can enjoy myself, enjoy my friends more often.
Overall a healthier happier, less stressed me is what I'm aiming for.
Weight loss, as I've stated before I'm on the list for surgery, but in addition to this, our diets have gradually changed and I am in process of making more time for me, time to get on the treadmill and wipe the dust off, time to kick it in gear. On a small note I've lost 7lbs in about 6 weeks, this small amount is a HUGE thing for me.
Become a better cook/meal planner, this means everything from mastering new recipes, branching out and trying new foods, and getting more organized. Eating out often like we have isn't healthy for us or the pocket book.
Save more moolah! As stated above, just cutting out a few fast food crap-olla meals could help here greatly.
Be more organized, paperwork gone thru, filed, get rid of junk we don't need, get back to cracking at my planners that I've slipped on lately, find more time in the day/week.
Spend more time with friends, the organization will help with this I believe, when things are less up in the air and more calm I can enjoy myself, enjoy my friends more often.
Overall a healthier happier, less stressed me is what I'm aiming for.
Wednesday, December 22, 2010
family time
wahoo! my parents will be here in less than 12 hours to celebrate christmas a bit early, boys are super psyched for this, 1) they get to see their grandparents, 2) they get multiple christmas'. very excited indeed. we got the boys room clean, two words, BOYS SUCK! lol it took forever to get their rooms clean, carpet shampooed, etc. but its done! the rest of the house has been de-cluttered, carpets cleaned, mopped, etc. exhusting, but it looks great! too bad it wont stay this way long, sigh.
tomorrow the boys go to therapy, we have mrs.k's gifts all ready to give her, boys are excited, ive said it before and ill say it again, I LOVE THIS TIME OF YEAR!
Have a wonderful christmas!!
tomorrow the boys go to therapy, we have mrs.k's gifts all ready to give her, boys are excited, ive said it before and ill say it again, I LOVE THIS TIME OF YEAR!
Have a wonderful christmas!!
Saturday, December 18, 2010
who am i ?
thanks lori, im stealing your post idea:)
thought i would leave a few thoughts on who i am and if you would leave a comment about who you are!:)
im 28
a stay at home mom to 3 boys
been married to my high school sweetheart for 10 years
im currently an army wife
ive lived in texas, germany, and georgia
i homeschool my kids
i enjoy relazing weekends with the family
i love taking photos, but am horrible at getting the photos off the camera and on the computer
i love sales!
i love coupons too, what a rush to save money!
ive debated several times in my life with being a vegitarian
all my boys have special needs, my youngest is by far the most medically fragile of them all
growing up i wanted to be 3 things, a mom, a teacher, and a nurse (funny how life works out, i get to be all 3)
i love starbucks, a venti mocha frap with no whipcream and an extra shot of expresso will melt my heart!
im working on becoming more self suffiecent, learning new skills, stock pilling, im not a dooms-day type of person but do believe we should be prepared.
i love the color blue!
i follow many many many blogs, probably about 40 in all, they range from being frugal, crafty, making homemade items, special needs, friends blogs, and more. i love them.
i have a hard time making friends, but treasure those that i do have, and heart them:)
okay your turn......
thought i would leave a few thoughts on who i am and if you would leave a comment about who you are!:)
im 28
a stay at home mom to 3 boys
been married to my high school sweetheart for 10 years
im currently an army wife
ive lived in texas, germany, and georgia
i homeschool my kids
i enjoy relazing weekends with the family
i love taking photos, but am horrible at getting the photos off the camera and on the computer
i love sales!
i love coupons too, what a rush to save money!
ive debated several times in my life with being a vegitarian
all my boys have special needs, my youngest is by far the most medically fragile of them all
growing up i wanted to be 3 things, a mom, a teacher, and a nurse (funny how life works out, i get to be all 3)
i love starbucks, a venti mocha frap with no whipcream and an extra shot of expresso will melt my heart!
im working on becoming more self suffiecent, learning new skills, stock pilling, im not a dooms-day type of person but do believe we should be prepared.
i love the color blue!
i follow many many many blogs, probably about 40 in all, they range from being frugal, crafty, making homemade items, special needs, friends blogs, and more. i love them.
i have a hard time making friends, but treasure those that i do have, and heart them:)
okay your turn......
Wednesday, December 15, 2010
life beyond
hubs is getting close to the end of his current enlistment in the army, a desicion has to be made, re-enlist and continue, or stop at 10 years in and look for a DOD/civillain/or contract work etc. im pushing for life outside the army, i believe hubs is leaning towards it too. the army has been great in the aspect of insurance and a steady pay check, but the seperations and bs that goes on inside the units is enough to drain anyone.
some of the things we know are a deal breaker are insurance for the kids, with all the medications, supplies and nursing we have for the boys we have to have insurance that will cover this.
of course a good pay check is also very important, from what i gather most counterparts for dh's job in the army, get paid much better on the outside world.
and less seperations, some of the contract and goverment jobs still do deployments (much better pay, and shorter than the army ones) so we know there is a chance he could still have to leave.
things are still all kinds of sideways for us right now, dh is working on his ACAP classes that help prepare him for outside life, job fairs, reseume help, etc.
please send good thoughts that things work out for the best! thanks
some of the things we know are a deal breaker are insurance for the kids, with all the medications, supplies and nursing we have for the boys we have to have insurance that will cover this.
of course a good pay check is also very important, from what i gather most counterparts for dh's job in the army, get paid much better on the outside world.
and less seperations, some of the contract and goverment jobs still do deployments (much better pay, and shorter than the army ones) so we know there is a chance he could still have to leave.
things are still all kinds of sideways for us right now, dh is working on his ACAP classes that help prepare him for outside life, job fairs, reseume help, etc.
please send good thoughts that things work out for the best! thanks
Tuesday, December 14, 2010
judgment
lets get real for a bit, okay,
are you judged? im sure we all are, i can list a million reasons im sure as to why im judged, does it make them right? no, does it make me right? no, just different views on different subjects.
im a mom to 3 special needs boys, ive heard from some, maybe i should have stopped....but then i wouldnt have my babies, why would that be a good thing?
every time the boys have a episode in public i see the looks, the parents who think im not doing enough, or trying hard enough, those who think the kids are mearly brats and acting out.
because i choose to homeschool, ive been told lots, most negative, i admit it can cause me to second guess myself, to think that i should feel bad for doing something wrong, i try to let it roll off, but it hurts.
because im "crunchy" i get weird looks for being eco friendly, for trying to be safer with our food, comments like "everything is gonna kill us, why bother"
im okay with being different, i dont fit a mold, thats okay with me, my problem comes when i meet someone new, typically i try to stay as much mainstream as possible in our talks, dont mention the boys problems, or that i dont vaccinate, or that i homeschool, but as soon as one of these come up typically the person is no longer interested in talking. hard to make friends, thankfully i have a cyber world of wonderful like minded people.
if you take nothing more than this away from this, please try not to judge someone before knowing them. the world would be boring if we were all the same right???
are you judged? im sure we all are, i can list a million reasons im sure as to why im judged, does it make them right? no, does it make me right? no, just different views on different subjects.
im a mom to 3 special needs boys, ive heard from some, maybe i should have stopped....but then i wouldnt have my babies, why would that be a good thing?
every time the boys have a episode in public i see the looks, the parents who think im not doing enough, or trying hard enough, those who think the kids are mearly brats and acting out.
because i choose to homeschool, ive been told lots, most negative, i admit it can cause me to second guess myself, to think that i should feel bad for doing something wrong, i try to let it roll off, but it hurts.
because im "crunchy" i get weird looks for being eco friendly, for trying to be safer with our food, comments like "everything is gonna kill us, why bother"
im okay with being different, i dont fit a mold, thats okay with me, my problem comes when i meet someone new, typically i try to stay as much mainstream as possible in our talks, dont mention the boys problems, or that i dont vaccinate, or that i homeschool, but as soon as one of these come up typically the person is no longer interested in talking. hard to make friends, thankfully i have a cyber world of wonderful like minded people.
if you take nothing more than this away from this, please try not to judge someone before knowing them. the world would be boring if we were all the same right???
Sunday, December 12, 2010
crunchy?
eek i have lots of thoughts in my head, always a scary thing for me, trying to become more organized, trying to purge harmful things from our daily life, i spend many hours a week in my natural, organic and simple groups. ive learned alot from them and love my groups. ive decided to make a list of things we are doing to be more "crunchy" and then ill make a list of things we are working towards.
we try to buy our food items in less packaging
we try to buy mainly organic
i make our house cleaners, laundry soap, floor cleaner, mirrors, disinfectant, etc.
i buy "safe" items such as method dish soap and dishwasher tablets, as much as possible
the boys bathe with burts bees
i wash my hair in baking soda and vinegar (and no its not yucky or smelly:))
we dont use paper towels at all, only cloth
we dont use artificial sprays, candles or any other kind of fragrances, i use essensial oil in water to add sent
we try to buy as much as possibly without BPA in it
try to use natural cures to protect our health
no longer doing vaccines
we try in general to think about our health and the enviroments health when we purchase items
id like to do these and am working more towards it
making 90% of meals from scratch at home
using cloth wipes for zach (cant get harold on board with this)
use cloth diapers with zach (again hubs isnt going for it and im not sure they would have any in his size since he is beyond the typical diaper age)
grow a small garden
make more of the things we need at home
learn how to sew
learn how to knit
what are some things you do or would like to do to become more "crunchy" or if you arent interested in being crunchy what are your reasons for this?
we try to buy our food items in less packaging
we try to buy mainly organic
i make our house cleaners, laundry soap, floor cleaner, mirrors, disinfectant, etc.
i buy "safe" items such as method dish soap and dishwasher tablets, as much as possible
the boys bathe with burts bees
i wash my hair in baking soda and vinegar (and no its not yucky or smelly:))
we dont use paper towels at all, only cloth
we dont use artificial sprays, candles or any other kind of fragrances, i use essensial oil in water to add sent
we try to buy as much as possibly without BPA in it
try to use natural cures to protect our health
no longer doing vaccines
we try in general to think about our health and the enviroments health when we purchase items
id like to do these and am working more towards it
making 90% of meals from scratch at home
using cloth wipes for zach (cant get harold on board with this)
use cloth diapers with zach (again hubs isnt going for it and im not sure they would have any in his size since he is beyond the typical diaper age)
grow a small garden
make more of the things we need at home
learn how to sew
learn how to knit
what are some things you do or would like to do to become more "crunchy" or if you arent interested in being crunchy what are your reasons for this?
Saturday, December 11, 2010
Friday, December 10, 2010
pictures
zach finally got a haircut....that was not an easy task, and of course i decided to do it at 1030pm alone cause the hub didnt want to help, since he knew zach didnt like the shearing sound, but we accomplished it! the boys loved seeing santa, even zachy, this was his first year to see santa!!
our house for christmas
our house for christmas
christmas party
Tonight was the special needs network annual Christmas party, this was our first year to attend, it was at the peaceable kingdom. And as everything is at the place it was amazing! The boys saw some super heroes and Santa, they made gingerbread house's, decorated stockings and had a really good time. They each received a gift from Santa and one a outdoor game set, volleyball and some others, very cool. The best part for me was being with people who understand, so many things never needed a word uttered, a simple nod of the head. The kids had a blast with other kids, they were all so nice to each other. I was able to talk with another mom, a lady from Eci, and a lady who helps with the special needs bikes as well. Over all an A+.
Christmas is only 14 days away! Harold goes on leave in 5 more working days! I'm loving it!!
Christmas is only 14 days away! Harold goes on leave in 5 more working days! I'm loving it!!
Thursday, December 9, 2010
Friday, December 3, 2010
i heart december
hey all, wow once again its been a while, no excuses time just seems to pass so quickly thru the day and then its bed time. hope everyone had a wonderful holiday and is having a great begining of december! we have our deco up, our tree up, i LOVE christmas, my all time favorite time of year and i tend to get a bit overly into it. :)
for thanksgiving i gave zach some baby food in his formula mixture for his tube feeding, it was a first but there were no bad reactions to it, it flowed a little slower, but nothing major, i have been thinking alot lately about a blended diet for zach where he would recieve more "real" foods, i want to discuss it and learn more with his nutritionist soon.
earlier this week while tube feeding zach he decided to get up and walk away....and when i say walk i mean RUN! couldnt catch him in time, he ended up popping his fully intact button full of water in the balloon out and we had to re-insert it, needless to say that was a first....he is such a wiggle worm now!
Another first for zach was he got to see Santa!! we hadnt done it in the past, either because of a hospital stay or fear of germs, yep im one of those that would bubble up my kid in a bubble if i could to protect him from everything, i know it seems extream sometimes, and im working on being better.but anyway back to santa, he didnt scream or fuss, but wasnt thrilled to be sitting on th ebig dueds lap either, he wanted to get up and run around. it was so awesome to see all the boys up with santa though, they all still believe, i know part of it is the autism, and part of it is the fact that they dont go to public school so they arent hearing other kids burst their bubbles about santa not being real, as long as they choose to believe i will go right on along....
before i end this i have a few prayer requests, one for a sweet baby born recently in a nicu waiting for a surgery to remove fluid from her brain, she also has a eye defect where she will be at least partially blind, she is having heart issues and has a cleft palate, they are waiting for genetic testing, a year ago her mom gave birth to another daughter born with congenital diaphragmatic hernia who lived only 28 days, please pray for peace and understanding for this family, her name is Ellie.
the other prayer request is for a beautiful nearly 3 year old girl named Liviana she was also born with congenital diaphragmatic hernia and survived it! she was doing wonderful until a few months ago she began to get clumsey and having probles walking and playing mom got her in to see aneuro and after a mri of her brain they determined the problem, that was the good news, they have an answer, however its one you never want to hear, its one that isnt cureable. here are the words from her mom's mouth...
"Liviana has been diagnosed with a rare genetic disorder called Leukodystrophy. There are 2 dozen types of LD and we are awaiting tests to determine what type she has. The hard part....LD is not treatable. It is a progressive, degenerative brain disease. She is basically losing the white matter on her brain. I am sure I will talk in more detail about LD later but that is the basics for now."
she says she has showed rapid signs of regressing already. its heartbreaking, if you can please go to their blog and pray for livi, thank you.
http://livianasjourney.blogspot.com/
thank you all so much!
for thanksgiving i gave zach some baby food in his formula mixture for his tube feeding, it was a first but there were no bad reactions to it, it flowed a little slower, but nothing major, i have been thinking alot lately about a blended diet for zach where he would recieve more "real" foods, i want to discuss it and learn more with his nutritionist soon.
earlier this week while tube feeding zach he decided to get up and walk away....and when i say walk i mean RUN! couldnt catch him in time, he ended up popping his fully intact button full of water in the balloon out and we had to re-insert it, needless to say that was a first....he is such a wiggle worm now!
Another first for zach was he got to see Santa!! we hadnt done it in the past, either because of a hospital stay or fear of germs, yep im one of those that would bubble up my kid in a bubble if i could to protect him from everything, i know it seems extream sometimes, and im working on being better.but anyway back to santa, he didnt scream or fuss, but wasnt thrilled to be sitting on th ebig dueds lap either, he wanted to get up and run around. it was so awesome to see all the boys up with santa though, they all still believe, i know part of it is the autism, and part of it is the fact that they dont go to public school so they arent hearing other kids burst their bubbles about santa not being real, as long as they choose to believe i will go right on along....
before i end this i have a few prayer requests, one for a sweet baby born recently in a nicu waiting for a surgery to remove fluid from her brain, she also has a eye defect where she will be at least partially blind, she is having heart issues and has a cleft palate, they are waiting for genetic testing, a year ago her mom gave birth to another daughter born with congenital diaphragmatic hernia who lived only 28 days, please pray for peace and understanding for this family, her name is Ellie.
the other prayer request is for a beautiful nearly 3 year old girl named Liviana she was also born with congenital diaphragmatic hernia and survived it! she was doing wonderful until a few months ago she began to get clumsey and having probles walking and playing mom got her in to see aneuro and after a mri of her brain they determined the problem, that was the good news, they have an answer, however its one you never want to hear, its one that isnt cureable. here are the words from her mom's mouth...
"Liviana has been diagnosed with a rare genetic disorder called Leukodystrophy. There are 2 dozen types of LD and we are awaiting tests to determine what type she has. The hard part....LD is not treatable. It is a progressive, degenerative brain disease. She is basically losing the white matter on her brain. I am sure I will talk in more detail about LD later but that is the basics for now."
she says she has showed rapid signs of regressing already. its heartbreaking, if you can please go to their blog and pray for livi, thank you.
http://livianasjourney.blogspot.com/
thank you all so much!
Wednesday, November 24, 2010
thanksgiving thankfullness
Its Turkey day! Gobble Gobble! Here are some of the many things I'm thankful for,
My family, they can drive me bonkers at times but I love them!
I'm thankful for our health, its not to be taken for granted, each day is a blessing.
My home! We have shelter from the cold/heat, we have a place to lay our heads.
My friends both online and IRL, y'all are amazing and keep me going on the hard days.
Our wonderful nurses at home and in the clinics and hospitals, the awesome doctors who guide us and help us.
The incredible team of therapists our boys see, they inspire us to keep on going and allow us to see potential.
I hope everyone has a blessed holiday and stays safe if your travel. Happy Thanksgiving day!!
My family, they can drive me bonkers at times but I love them!
I'm thankful for our health, its not to be taken for granted, each day is a blessing.
My home! We have shelter from the cold/heat, we have a place to lay our heads.
My friends both online and IRL, y'all are amazing and keep me going on the hard days.
Our wonderful nurses at home and in the clinics and hospitals, the awesome doctors who guide us and help us.
The incredible team of therapists our boys see, they inspire us to keep on going and allow us to see potential.
I hope everyone has a blessed holiday and stays safe if your travel. Happy Thanksgiving day!!
Tuesday, November 2, 2010
You Might be a Counterculture (hippy) Person if...
Over at Mamaeve there is a great post called "You Might be a Counterculture "
When you run out of cleaners you don't go to the store you just make some more.
If you wanted to you could eat some (or all) of your personal care products.
You know what a Diva cup, sponge and Lunapad are and have used at least one.
Your medicine cabinet contains things like elderberry juice, aloe vera, honey, homeopathic remedies, a neti pot, and essential oils
You shop more at Etsy.com than the mall.
You understand how homeopathic works and use it
You brush your teeth with baking soda or fluoride free tooth paste
You have a glass/stainless steel straw and/or bamboo cutlery in your purse (or other bag).
You have used baby slings
You delay vaccines or choose not to vaccinate your kids
You wash your hair with baking soda and apple cider vinegar
You don't use paper towels but cloth instead
I'm sure I'm forgetting some...
When you run out of cleaners you don't go to the store you just make some more.
If you wanted to you could eat some (or all) of your personal care products.
You know what a Diva cup, sponge and Lunapad are and have used at least one.
Your medicine cabinet contains things like elderberry juice, aloe vera, honey, homeopathic remedies, a neti pot, and essential oils
You shop more at Etsy.com than the mall.
You understand how homeopathic works and use it
You brush your teeth with baking soda or fluoride free tooth paste
You have a glass/stainless steel straw and/or bamboo cutlery in your purse (or other bag).
You have used baby slings
You delay vaccines or choose not to vaccinate your kids
You wash your hair with baking soda and apple cider vinegar
You don't use paper towels but cloth instead
I'm sure I'm forgetting some...
Wednesday, October 20, 2010
crazy? yea a little
october is nearly over.....again im left shaking my head and wondering where the month went. harold has been in field all this week, and should be back tomorrow night or early friday morning, i must say i am looking forward to some help, however small or large it may be. this saturday we are having Zach's birthday party, pokemon theme, im looking forward to it, we have invited therapists, nurses, and of course my bestest friend:) his cake has been ordered, was going to make it, but the guest list just grew a bit much for me and thought it would be better to order one. planning on having finger foods and lots of fun. he's turning 3, holy moly, 3!
i had my seminar tonight for the weightloss surgery, and after listening to the doc and the dietician, if i hadnt changed my mind from lapband to sleeve, prior, i would have changed it tonight. im excited. thats nuts right? to be excited for a surgery? an elective surgery....something i never thought i would do, elect to be put under the knife. thats scary! i must be insane. i just keep thinking about the end results and knowing i will have more energy, better self esteem, healthier. so yea im excited for a surgery, but dont get me wrong im terrified as well. i still have to attend a support group next week, and get a psych eval before i am officially put on the "surgery" list, but from there ive been told it could be weeks, or months, really depends on the deployment schedule for the docs, the number of other surgeries and so forth, but they could call me with only a weeks notice for surgery. eek. at that point i would start my liquid diet immediatly.
still nothing from houston about the new specialist, guess they are still ironing out the specifics for the appointment. maybe soon.
i had my seminar tonight for the weightloss surgery, and after listening to the doc and the dietician, if i hadnt changed my mind from lapband to sleeve, prior, i would have changed it tonight. im excited. thats nuts right? to be excited for a surgery? an elective surgery....something i never thought i would do, elect to be put under the knife. thats scary! i must be insane. i just keep thinking about the end results and knowing i will have more energy, better self esteem, healthier. so yea im excited for a surgery, but dont get me wrong im terrified as well. i still have to attend a support group next week, and get a psych eval before i am officially put on the "surgery" list, but from there ive been told it could be weeks, or months, really depends on the deployment schedule for the docs, the number of other surgeries and so forth, but they could call me with only a weeks notice for surgery. eek. at that point i would start my liquid diet immediatly.
still nothing from houston about the new specialist, guess they are still ironing out the specifics for the appointment. maybe soon.
Thursday, October 14, 2010
october rush
holy moly, where has the month gone? its nearly november already! october has been a busy month, ill try to recap.
the boys picked zach's birthday theme, pokemon, lol and we planned out his party, was going to make a cake, but looks like we will have a full house, so we will order a cake. his party will be on the 23rd, so hard to believe he will be 3! he is doing awesome. he has been off oxygen during the day and LOVING it. he is trying to run and doing so well. this morning in therapy we did some mouth work and he tasted about 4 tiny bites of spegetti sauce. wahoo!!
Harold had bronchitis a few weeks ago, we got lucky and everyone else stayed pretty healthy, a few days of coughing and small issues, but it could have been soooo much worse, i credit alot of that to our daily intake of vitamin d. the boys take 2000iu's a day, even zachy, and me and harold take 10000iu's, harold actually stopped taking them, he forgot and then he was on steriods for an allergic reaction to some meds, so that lowered his immune system, and BAM he got sick. sigh.
we had to let our day nurse who had been here for about 2 years go, she was just worn down between school and her night job and was getting ill, cancelling shifts, coming in late, leaving early, etc. so we had a replacement, she had been here about 2 weeks, was caught sleeping twice and then today tells me she has had bronchitis for about 5 days..... um HELLO???!!! really? and your here with my baby boy?? um no....so as of today she has been let go. looks like we may be without a day nurse tomorrow and maybe tuesday, hopefully we will get some new ones in to train and see if they will work.
we went to houston to see zach's original surgeon about his scoliosis, left there with no answers, but we are getting an appointment with the head orthopedics/scoliosis dr there, so maybe soon we will know more. was nice to be able to see a nicu nurse and the milk bank ladies. zach was hamming it up there.
ive had my dietician appointment (finally) seemed like it was taking forever, the appointment went pretty well, ive gained another 1.8lbs. WTH?! so anyway i will attend a seminar next wed, about the surgery options, though im leaning towards the sleeve now, the dietician said she preferred it and i only stopped thinking about it because i didnt think it would be covered by insurance but it is covered if done at the army hospital, so anyway after the seminar and talking with the surgeon i will have a better picture. i have another lab work to do for my iron, and then a psych eval and attend a support group meeting the last wed. of oct, and i will be set to schedule and appointment. im so excited, i know its gonna be a challenge, its a life style change, its forever, but im so ready.
mikey is going to be wolverine for halloween, chance is iron man and zach will be cookie monster, cant wait for that as well. 71 days till christmas!
the boys picked zach's birthday theme, pokemon, lol and we planned out his party, was going to make a cake, but looks like we will have a full house, so we will order a cake. his party will be on the 23rd, so hard to believe he will be 3! he is doing awesome. he has been off oxygen during the day and LOVING it. he is trying to run and doing so well. this morning in therapy we did some mouth work and he tasted about 4 tiny bites of spegetti sauce. wahoo!!
Harold had bronchitis a few weeks ago, we got lucky and everyone else stayed pretty healthy, a few days of coughing and small issues, but it could have been soooo much worse, i credit alot of that to our daily intake of vitamin d. the boys take 2000iu's a day, even zachy, and me and harold take 10000iu's, harold actually stopped taking them, he forgot and then he was on steriods for an allergic reaction to some meds, so that lowered his immune system, and BAM he got sick. sigh.
we had to let our day nurse who had been here for about 2 years go, she was just worn down between school and her night job and was getting ill, cancelling shifts, coming in late, leaving early, etc. so we had a replacement, she had been here about 2 weeks, was caught sleeping twice and then today tells me she has had bronchitis for about 5 days..... um HELLO???!!! really? and your here with my baby boy?? um no....so as of today she has been let go. looks like we may be without a day nurse tomorrow and maybe tuesday, hopefully we will get some new ones in to train and see if they will work.
we went to houston to see zach's original surgeon about his scoliosis, left there with no answers, but we are getting an appointment with the head orthopedics/scoliosis dr there, so maybe soon we will know more. was nice to be able to see a nicu nurse and the milk bank ladies. zach was hamming it up there.
ive had my dietician appointment (finally) seemed like it was taking forever, the appointment went pretty well, ive gained another 1.8lbs. WTH?! so anyway i will attend a seminar next wed, about the surgery options, though im leaning towards the sleeve now, the dietician said she preferred it and i only stopped thinking about it because i didnt think it would be covered by insurance but it is covered if done at the army hospital, so anyway after the seminar and talking with the surgeon i will have a better picture. i have another lab work to do for my iron, and then a psych eval and attend a support group meeting the last wed. of oct, and i will be set to schedule and appointment. im so excited, i know its gonna be a challenge, its a life style change, its forever, but im so ready.
mikey is going to be wolverine for halloween, chance is iron man and zach will be cookie monster, cant wait for that as well. 71 days till christmas!
Friday, September 24, 2010
Wednesday, September 15, 2010
9-15
Its been a long week already and its only Wednesday! Our nurse Tuesday called out and hubs had field time, so he left at 4am and didn't get home till about 6pm, it was a long day, but we made it, took the boys to the park, everyone enjoyed it, zach did lots of walking around, still can't get over how well he is walking! Last week we got some super good news for zman! Our pulmonary doc agreed he could come OFF. Oxygen during the day if his saturation levels stay above 90% his lowest has been about 92-93%! Again I'm just in amazement!
Hubs has had a bit of badluck lately, hurt his foot by falling off a genorator and yesterday in field he dehydrated and needed 3 IV bags....poor Guy. Today seems better though.
I found a co-op group thanks to our fabulous developmental therapist, they are full this semester but I'm planning on joining next semester, they off tons of classes for things such as gardening, grossology....all things gross. Algebra, speech and debate, to events like track, music,soccer etc.
October 13th I will go see the dietician its the next step on my list for upcoming changes. Ready to get it behind me already. Tomorrow we have therapy for all the boys, occupational .. so I better get to bed soon ..........
Hubs has had a bit of badluck lately, hurt his foot by falling off a genorator and yesterday in field he dehydrated and needed 3 IV bags....poor Guy. Today seems better though.
I found a co-op group thanks to our fabulous developmental therapist, they are full this semester but I'm planning on joining next semester, they off tons of classes for things such as gardening, grossology....all things gross. Algebra, speech and debate, to events like track, music,soccer etc.
October 13th I will go see the dietician its the next step on my list for upcoming changes. Ready to get it behind me already. Tomorrow we have therapy for all the boys, occupational .. so I better get to bed soon ..........
Tuesday, September 7, 2010
bumming
The last couple days we have bummed around the house....a good thing since Were always on the go, you would think, but I've actually put myself in a funk...and our wonderful down pouring rain today didn't help any. Sigh. The boys have been really good and doing school work so well, I can't compain. We have nearly gottan half way thru our life source lessons for the year...gulp you heard me right, guess we will be finding more to continue on with soon.thinking of taking the boys to see Thomas the train, yea a little young for M but C will have a blast and there will be other things for M to do. We will see how things go.
Time to start planning my lil mans 3rd birthday! So hard to believe he will be 3 in just over a month. Its also time to plan the boys Halloween ...figure if I start soon I wont overwhelm myself.
Hopefully getting out tomorrow running errands will help my funk. I need sunshine for sure but the grass needs this rain!
Time to start planning my lil mans 3rd birthday! So hard to believe he will be 3 in just over a month. Its also time to plan the boys Halloween ...figure if I start soon I wont overwhelm myself.
Hopefully getting out tomorrow running errands will help my funk. I need sunshine for sure but the grass needs this rain!
Thursday, September 2, 2010
holiday planning
Time is ticking, Christmas is only 113 days away! You know what that means? Halloween and Thanksgiving are even closer! The past few halloween's haven't been much, 2007 zach was 5 days old having his first surgery, 2008 Harold was in Korea and zach was still really fragile so the boys dressed up and played at home. 2009 we did take the boys on a small outing scavenging for candy. I'd like to have a big celebration this year now whose to say if ill get my wish, I'm looking around for ideas for the boys to go as a theme of some sort.
Now lets talk Thanksgiving we have much to be thankful for, and hopefully by that time I wont be able to consume all those calories (meaning hopefully I'll have had surgery) still looking forward to having the big meal, just will need lots of people to help eat.......haha.
December is my favorite month of the year, I looooooovee it, the spirit the decorations the giving...I can't wait. Santa has been working a lil here and there already, don't planing going overboard this year but we will see if I can contain. My excitement. I love the wrapping, the tree, the smiles and laughter.
Time to start planning if you haven't already!
Now lets talk Thanksgiving we have much to be thankful for, and hopefully by that time I wont be able to consume all those calories (meaning hopefully I'll have had surgery) still looking forward to having the big meal, just will need lots of people to help eat.......haha.
December is my favorite month of the year, I looooooovee it, the spirit the decorations the giving...I can't wait. Santa has been working a lil here and there already, don't planing going overboard this year but we will see if I can contain. My excitement. I love the wrapping, the tree, the smiles and laughter.
Time to start planning if you haven't already!
Wednesday, September 1, 2010
september!
wow it seems like it was just march! and now its september....wow is all i can think. we have been back in school for about a week now, so far so good, this year has already started out more information heavy than last, but this year i started homeschooling from the begining, and that makes a difference. the boys spend about 20 min. on each of the following...science, bible lessons, and history in the morning (yes bible lessons are in our school) and then we do an activity or read a book and do some math and english work, the boys also have the spelling program on the computer they still use. im on the hunt for some art things for them, but if nothing else, some finger paint and other objects used to paint with will make for a fun day.
the boys havent had therapy in 2 weeks, their therapist was on vacation....oh how we have missed her! tomorrow they go back...wahoo!!! hoping therapy wears em out and i can accomplish some grocery shopping.
my lab work showed me being anemic...duh im always anemic! but for the upcoming elective surgery im thinking of having, pending approval all around, i need to test not anemic, so im taking my iron pills and hoping that fixes the issue. i will go see my dr in about 3 weeks and retest and hopefully then i will get the approval for the appointment to see the surgeon.
zach has really taken off walking, its awesome to see, he loves it too you can see his pride shining out! its great!! i cant wait for some of his doctors to see him!
the boys havent had therapy in 2 weeks, their therapist was on vacation....oh how we have missed her! tomorrow they go back...wahoo!!! hoping therapy wears em out and i can accomplish some grocery shopping.
my lab work showed me being anemic...duh im always anemic! but for the upcoming elective surgery im thinking of having, pending approval all around, i need to test not anemic, so im taking my iron pills and hoping that fixes the issue. i will go see my dr in about 3 weeks and retest and hopefully then i will get the approval for the appointment to see the surgeon.
zach has really taken off walking, its awesome to see, he loves it too you can see his pride shining out! its great!! i cant wait for some of his doctors to see him!
Monday, August 23, 2010
back to school
Well today was loooonnng
Didn't help I didn't go to bed till 430am and woke up at 740....yuck! We had therapy at the temple mall
.zach got to walk around and play on some equipment. After there we went to see the psychologist and to the pharmacy we made it home about lunch time. I spent about 2 hours with boys doing social studied, and creation (science ). Then they did some math and art. Hubs had to work way late, he got in about 930pm....boo. I hate those long nights.
I made the call today to talk to my Dr about the lapband, i think he should be on board with the idea, he mentioned it to me not too long ago, but I hadn't researched it. Yet.
So tomorrow I'm going to go do my lab work for the fainting last week, run by a pharmacy, then were going to work more on science, social studies and some reading, I have a new book I think the boys will love. I'm off to bed....exhausted. night
Didn't help I didn't go to bed till 430am and woke up at 740....yuck! We had therapy at the temple mall
.zach got to walk around and play on some equipment. After there we went to see the psychologist and to the pharmacy we made it home about lunch time. I spent about 2 hours with boys doing social studied, and creation (science ). Then they did some math and art. Hubs had to work way late, he got in about 930pm....boo. I hate those long nights.
I made the call today to talk to my Dr about the lapband, i think he should be on board with the idea, he mentioned it to me not too long ago, but I hadn't researched it. Yet.
So tomorrow I'm going to go do my lab work for the fainting last week, run by a pharmacy, then were going to work more on science, social studies and some reading, I have a new book I think the boys will love. I'm off to bed....exhausted. night
insomnia sucks
Well its 210am and why am I up? Kid r all asleep but my brain wont shut off to let me sleep sigh. I've had a pretty low-key weekend, hubs worked most of it, but luckily someone called them on their dumb stuff and like magic they were released at 3 today. Seems they didn't go thru proper channels to have them work the weekend...idiots! I've spent alot of the weekend researching. Guess that's why my brain is still going strong tonight. I researched tons of blogs and articles on homeschooling getting ideas, advice, know how ,did lots of research on healthy meal ideas. And last but not least research for a subject I've thought of on and off awhile, I had kinda written the notion. Off but then a dear friend of mine brought it up as something she is pursuing, I'm going to make an appointment to talk about weightloss surgery...more so lapband. I've searched and searched and read about the bypass that is a bit to radical for me. The gastric sleeve, the one my friend is doing and the band. The later two are the ones I want to know more of. Its always scary going into surgery. But I think this is something I need to consider hard, diets haven't worked I've tried Atkins, southbeavh, alli pills, herbs, citrus and hotsauce diets, gym, I've given up sodas completely for 6 weeks now and no change. Vitamin b shots worked while I was taking the, then I gained it back plus some...something has to give. So I'm gonna embark on a new journey. And hope for the best.
In just a couple hours we will be taking zach to the temple mall for therapy. Letting. Him walk there and then we will head over for his psychologist appointment and pick up his viagra. I need sleep....brain needs to rest.
In just a couple hours we will be taking zach to the temple mall for therapy. Letting. Him walk there and then we will head over for his psychologist appointment and pick up his viagra. I need sleep....brain needs to rest.
Saturday, August 21, 2010
saturday
well i started to title this "happy saturday" but quite frankly im not sure it is....its just saturday. hubs is at work, his half day has turned into a whole day. boo. the boys didnt sleep at all last night, they were up the whole freakin night. sigh, can you say cranky? yep for sure. took them to a special needs respite care thing, let them play and have fun and hopefully wear themselves out! i have to leave in a lil bit to get them. the killeen community center is having a big kids day today, for back to school, petting zoo, bounce houses and whatnot, i had planned to take them, but that will depend on if they can handle it, otherwise its an early night for them. woke up super early and trained a new nurse at 7am. ugh...7am on a saturday! eeewwww. zach seems to really like her, he has been showing off all day, he just started today standing up on his own, without pulling on anything and walking...not just in his comfort zone (living room) he is walking everywhere!!! sqqquuueeealll!!! his new favorite place is the bathroom....he loves the bathtub! we closed the door last night and he STILL got in, twice, so i assume he is opening doors now???? and the nurse said he turned his tv on in his room today.....WHEN DID THIS START HAPPENING??? holy moly, everything in zach's time. silly boy.
with the boys being gone for the few hours today i did get to relax a bit,got to go to hobby lobby for things to make a premade scrapbooking layout for a group meeting this coming week, looking forward to attending, we should have a nurse here who doesnt mind if the boys stay with her for a bit, makes things easier:) and ran thru the starbucks drive thru.
well its time to head out and get the boys.
with the boys being gone for the few hours today i did get to relax a bit,got to go to hobby lobby for things to make a premade scrapbooking layout for a group meeting this coming week, looking forward to attending, we should have a nurse here who doesnt mind if the boys stay with her for a bit, makes things easier:) and ran thru the starbucks drive thru.
well its time to head out and get the boys.
Wednesday, August 18, 2010
Wooden toys making a comeback!
we have recently discovered melissa and doug toys and LOVE them. i love that they are durable, long lasting and allow lots of imaginative play! we love the food sets! the holidays are coming up and wouldnt it be great to get a headstart on the gift buying? check out my shop on opensky.com and look for some awesome toys.
the sushi slicing playset is sure to be a big hit!
http://shopopensky.com/shinningthruthenight
the sushi slicing playset is sure to be a big hit!
http://shopopensky.com/shinningthruthenight
Saturday, August 7, 2010
confusion
sometimes you gotta sit back and wonder what the hell, in the end there isnt anything that can be done, doesnt matter if its right or wrong. i know things will work out as they should and all you can do is be positive, negative thinking leads to negative actions, and i refuse. im blessed with a wonderful family, and wonderful friends and supporters online.
on a lighter note were getting ready for school, not the same way as others, but still i have bought the needed supplies and gottan print offs and new workbooks for the boys. found some new cute and easily do-able crafts for the boys for art time, and im happy to say im excited.
Zach is doing well, we wont have results from san antonio for a couple more weeks, but thats okay, again thats something i cant do anything about, but i have trust in the terrific team and know they will have the right solutions for him, very greatful they are doing so much research...whatever they choose will be a custom choice and not a one size fits all. :) gotta love it since NOTHING for zach is one size fits all:)
hard to believe christmas is only a few months away, ive been lucky to find a few really good deals and already gottan some things for the boys:)
working on more organazation here at home, less clutter and maddness, that will reduce the stress and negative thoughts. simple items bring so much joy.
on a lighter note were getting ready for school, not the same way as others, but still i have bought the needed supplies and gottan print offs and new workbooks for the boys. found some new cute and easily do-able crafts for the boys for art time, and im happy to say im excited.
Zach is doing well, we wont have results from san antonio for a couple more weeks, but thats okay, again thats something i cant do anything about, but i have trust in the terrific team and know they will have the right solutions for him, very greatful they are doing so much research...whatever they choose will be a custom choice and not a one size fits all. :) gotta love it since NOTHING for zach is one size fits all:)
hard to believe christmas is only a few months away, ive been lucky to find a few really good deals and already gottan some things for the boys:)
working on more organazation here at home, less clutter and maddness, that will reduce the stress and negative thoughts. simple items bring so much joy.
Sunday, July 25, 2010
lazy sunday
yesterday we headed up to stephenville for Harold's aunt's funeral, that place was a madhouse, at least 75 people! can you say YIKES? eesh. glad zachy got to stay back home with the nurse, definatly didnt want him in the heat and in the crowded room with people sniffling everywhere.
today has been kinda a catch up day and a prepare day...preparing for our trip to SA. very excited to get away, not really looking forward to spending the first 2 days in the hospital with the many tests/procedures but at the end of the day, it will be me zachy and his nurse. too bad dad couldnt be there, but we will get some good down time, and the hotel has a POOL!!! guess where we will be at night?? lol
Friday night Harold and the boys will drive up and join us and our nurse will head out, were hoping to hit Sea world with the boys and maybe Morgan's Wonderland for the boys too. excited. :)
today has been kinda a catch up day and a prepare day...preparing for our trip to SA. very excited to get away, not really looking forward to spending the first 2 days in the hospital with the many tests/procedures but at the end of the day, it will be me zachy and his nurse. too bad dad couldnt be there, but we will get some good down time, and the hotel has a POOL!!! guess where we will be at night?? lol
Friday night Harold and the boys will drive up and join us and our nurse will head out, were hoping to hit Sea world with the boys and maybe Morgan's Wonderland for the boys too. excited. :)
Monday, July 19, 2010
curse of july 19th strikes again
3 years ago july 19th we went in for our routine ultrasound to find out the sex of our lil bundle and walked away with terms like "congenital diaphragmatic hernia" "termination" "50% odds" and more, our lives were turned upside down and we couldnt even see straight.
2 years ago on july 19th Zach had a seizure and was taken by ambulance to the ER where they flew him to the PICU in temple, they determined he had blood on his brain and would soon undergo a surgery to drain the blood from the brain.
last year on july 19th we skipped it...or so i thought, late that night zach started to not act right and had fever, the next day we made an appointment to see his primary doc and was told he had strep and enlarged adnoids.....
This year??? This year on this BLASTED date, we learn that the 1 week class Harold was suppose to be in is now 2 WEEKS, and runs thru the 30th, and there isnt a way out of the class, Zach is suppose to be in san antonio for a long 2 days of tests, xrays, lab work, mri, ct scan and meeting docs about the titanium rib placement....and now Harold CANT go, i was LIVID, freaked out, and more. i HATE this day. next year im removing it from the calendar...end of story. ugh
2 years ago on july 19th Zach had a seizure and was taken by ambulance to the ER where they flew him to the PICU in temple, they determined he had blood on his brain and would soon undergo a surgery to drain the blood from the brain.
last year on july 19th we skipped it...or so i thought, late that night zach started to not act right and had fever, the next day we made an appointment to see his primary doc and was told he had strep and enlarged adnoids.....
This year??? This year on this BLASTED date, we learn that the 1 week class Harold was suppose to be in is now 2 WEEKS, and runs thru the 30th, and there isnt a way out of the class, Zach is suppose to be in san antonio for a long 2 days of tests, xrays, lab work, mri, ct scan and meeting docs about the titanium rib placement....and now Harold CANT go, i was LIVID, freaked out, and more. i HATE this day. next year im removing it from the calendar...end of story. ugh
Wednesday, July 7, 2010
autism
The Sensory Challenge (In honor of Occupational Therapists and people with autism) Take the Sensory Challenge. Are you ready? Good. Close your eyes and imagine this: You’re in a room with a group of people. You’re trying to listen to the speaker but there is a buzz in your ears. It’s so loud you wonder if there’s a fly in your head. The lights in the room are continually flickering. You keep blinking to avoid the flashes. Now you have a headache. Open your eyes. How did you feel? What did the speaker say? This is the effect fluorescent lights have on some people with autism You’re watching a puppet show. There are people next to you, in front of you and behind you. The noise level is loud. There are people laughing all around you. One of the puppets has a shrill voice. It echoes in your head and you don’t understand what the puppets are saying. You try and filter out the sound but it’s impossible. You are continually startled as the audience breaks into applause, clapping and cheering wildly for no apparent reason. In desperation you cover your ears and squeeze your eyes shut hoping it will all just go away. Open your eyes. How did you feel? Did you enjoy the show? This is the effect typical noise levels might have on some people with autism. You’re at a BBQ. The sun is hot. The heat makes your skin prickle and the light is blinding. Your friends call you to play ball but there is a haze in front of your eyes. You try and push it away with your hands. Why can’t anybody else see it? The sound of insects is all around. You see them wherever you turn. They’re on the leaves, in the sky and on the grass. You should be eating but you feel nauseated. The air is permeated with the smell of food, drinks, lotion and smoke from the grill. It’s overpowering and all you can do is nibble on some chips. Open your eyes. How did you feel? Did you participate in the BBQ? This is how a summer day event can feel to someone who has autism You enjoy playing basketball but today you have to wear your team clothes. The socks are rough and they hurt your feet. With each step, the seam slides across your toes and it’s awfully painful. You’re on the court and you miss the ball. You didn’t see it because you were trying to reposition your shirt. The label on the inside feels like a jagged piece of paper that constantly grazes your skin. You can’t shoot the ball in the hoop because you’re rooted to the spot. Your shoes are so uncomfortable, you’re afraid to jump in fear of the painful landing that’s bound to happen. Your team is really mad at you. Open your eyes. How did you feel? Did you enjoy the game? This is the effect that some clothing can have on a person with autism. You like eating cereal. It’s crunchy and it tastes good. You like eating yogurt. It’s smooth and creamy. Oh no! Somebody wants you to combine them! They think you should mix it up and eat them together. The very thought of lumpy and smooth swirling around in your mouth makes you physically gag. At your request they leave it separate but still put them on the same plate! How could you possibly eat? You feel physically ill looking at the lumpy and smooth on your plate. It reminds you of… of… Oatmeal! The King of all lumpy, smooth mixtures. Your stomach is churning and you need to throw up. You close your eyes and pray that the plate in front of you will magically disappear. Open your eyes. How did you feel? Did you enjoy your breakfast? This is the effect that some foods can have on a person with autism.
http://www.nlconcepts.com
Toll free: (800) 823-3430 Main: (631) 858-0188 Fax: (631) 858-0061
sales@nlconcepts.com
You’re at the mall. It’s a large wide open space where everything echoes. Your skin begins to tingle. There are sights and sounds everywhere. You don’t know where to look first. Your mind is reeling. You’re afraid and you feel exposed. You long for protection. You want to swaddle yourself in a blanket and pretend you’re in a cocoon. People whiz by. Their footsteps and chatter reverberate in your head. You lose sense of yourself and the space around you. You wonder if your feet are on the floor or if you’ve merged with the mall. In sheer terror, you retreat in the far corners of your mind – a safe place that never fails you. Open your eyes. How did you feel? Was the mall fun? This is the effect busy places might have on people with autism. If you have autism we respect and commend you for dealing so well with situations that can feel unbearable. If you're an occupational therapist, we honor you for the wonderful work you do in helping people with autism deal with sensory challenges.
- By Jene Aviram This article is property of and copyright © 2003-2007 Jene Aviram of Natural Learning Concepts. Reference of this article may only be included in your documentation provided that reference is made to the owner - Jene Aviram and a reference to this site http://www.nlconcepts.com
http://www.nlconcepts.com
Toll free: (800) 823-3430 Main: (631) 858-0188 Fax: (631) 858-0061
sales@nlconcepts.com
You’re at the mall. It’s a large wide open space where everything echoes. Your skin begins to tingle. There are sights and sounds everywhere. You don’t know where to look first. Your mind is reeling. You’re afraid and you feel exposed. You long for protection. You want to swaddle yourself in a blanket and pretend you’re in a cocoon. People whiz by. Their footsteps and chatter reverberate in your head. You lose sense of yourself and the space around you. You wonder if your feet are on the floor or if you’ve merged with the mall. In sheer terror, you retreat in the far corners of your mind – a safe place that never fails you. Open your eyes. How did you feel? Was the mall fun? This is the effect busy places might have on people with autism. If you have autism we respect and commend you for dealing so well with situations that can feel unbearable. If you're an occupational therapist, we honor you for the wonderful work you do in helping people with autism deal with sensory challenges.
- By Jene Aviram This article is property of and copyright © 2003-2007 Jene Aviram of Natural Learning Concepts. Reference of this article may only be included in your documentation provided that reference is made to the owner - Jene Aviram and a reference to this site http://www.nlconcepts.com
Tuesday, July 6, 2010
summer
wow, im sorry for the delay in updates. things are going pretty well here for now....holds breath. on day 3 post op of zach's adnoids and ear tubes he ran a 101.5 fever, really high for him, and was wheezing. we took him to the weekend clinic, got a new antibiotic and came home. yesterday was his last day on that antibiotic, after about day 4 of the new med he was feeling much better. seems like we dodged the bullet!
we had a nice fourth of july with some great friends, you may remember the posts about "snowflake" or "ladybug", we had a nice night of watching fireworks letting the older kids play and eating some yummy food. "snowflake" who is now more referred to as Julie-bug, is doing well also, she also just had almost identical surgery as Zach, on the 2nd, she also had her tonsils removed, and seems to be a champ!
Zach seems to be resting better, less snoring and mouth breathing, though they said it could take about 6 weeks for that to really stop due to swelling from surgery. seems like Zach is also hearing more, he is more alert to noises and turns to us talking to him some times. YEA!!
Mikey and Chance are getting ready to attend a 3 day summer camp, at a special needs camp (peaceable kingdom) from 8am to about 4pm on the 15th-17th, they went back in may for a 1 day camp and seemed to enjoy it, so hoping this time they still enjoy it. we go in a couple days to register and pick up their tshirts and turn their meds in for the camp.
last week mikey also became the proud owner of his pallet spacer, a big hunk of metal under the roof of his mouth conected to his teeth that we turn with a "key" 2 times a day to expand his upper jaw. he will be in this for about 6 months.
i will try to do better at updating hope everyone had a safe 4th of july!
we had a nice fourth of july with some great friends, you may remember the posts about "snowflake" or "ladybug", we had a nice night of watching fireworks letting the older kids play and eating some yummy food. "snowflake" who is now more referred to as Julie-bug, is doing well also, she also just had almost identical surgery as Zach, on the 2nd, she also had her tonsils removed, and seems to be a champ!
Zach seems to be resting better, less snoring and mouth breathing, though they said it could take about 6 weeks for that to really stop due to swelling from surgery. seems like Zach is also hearing more, he is more alert to noises and turns to us talking to him some times. YEA!!
Mikey and Chance are getting ready to attend a 3 day summer camp, at a special needs camp (peaceable kingdom) from 8am to about 4pm on the 15th-17th, they went back in may for a 1 day camp and seemed to enjoy it, so hoping this time they still enjoy it. we go in a couple days to register and pick up their tshirts and turn their meds in for the camp.
last week mikey also became the proud owner of his pallet spacer, a big hunk of metal under the roof of his mouth conected to his teeth that we turn with a "key" 2 times a day to expand his upper jaw. he will be in this for about 6 months.
i will try to do better at updating hope everyone had a safe 4th of july!
Friday, June 11, 2010
summer=water
growing up that was always my motto, when i was able to get in the pool and enjoy the sun and water, that ment it was summer....so in that case today was the first day of summer....in a few years for me. lol. i took the boys on post to a pool to check it out, i had a good time, the boys enjoyed as well. chance started the pool time off by hanging on my neck, he is such a loving boy but man is it annoying to have him hanging on me always. tsk, i shouldnt say that...i love it, sometimes. but new situations always make him nervous, so the pool being a semi new thing for him was one of these senerios. but we swam for a couple hours, discovered many hours later that i didnt apply enough sunscreen for any of us, sigh.
i got good news last night, finally got a email from san antonio, we have our evaluation on july 29 and 30th, we will need to arrive and check in at 7 am....7 AM??!!! eek its soo gonna be a long day. zach will be put thru the ringer...lab work, vitals, xrays, possibly mri, ect. the second day of the eval will consist of actually seeing the 3 specialists there, the pedi ortho, pedi surgery, and pedi pulmonary. im ready to get this done and see what they say, what they think of the scoliosis, what they plan to do and how it will benifit zach. if they decide that he does qualify medically for the titanium rib placement it will be a series of surgeries, the inital one and then every 6 to 12 months he will need to go in and have the rib expanded until he hits puberty and isnt growing at the rapid rate any more.
i also have more news on zach's upcoming surgery for ear tubes, and the sedated ABR, he will also need to get his adnoids out as they are enlarged, probably causing the mouth breathing, snoring, and also blocking the ear area not allowing the fluid to drain as it should. im also going to talk to the doc on our pre-op and see if we cant get his tonsils out at the same time, just because the adnoids and tonsils typically go together. crossing fingers.
i got good news last night, finally got a email from san antonio, we have our evaluation on july 29 and 30th, we will need to arrive and check in at 7 am....7 AM??!!! eek its soo gonna be a long day. zach will be put thru the ringer...lab work, vitals, xrays, possibly mri, ect. the second day of the eval will consist of actually seeing the 3 specialists there, the pedi ortho, pedi surgery, and pedi pulmonary. im ready to get this done and see what they say, what they think of the scoliosis, what they plan to do and how it will benifit zach. if they decide that he does qualify medically for the titanium rib placement it will be a series of surgeries, the inital one and then every 6 to 12 months he will need to go in and have the rib expanded until he hits puberty and isnt growing at the rapid rate any more.
i also have more news on zach's upcoming surgery for ear tubes, and the sedated ABR, he will also need to get his adnoids out as they are enlarged, probably causing the mouth breathing, snoring, and also blocking the ear area not allowing the fluid to drain as it should. im also going to talk to the doc on our pre-op and see if we cant get his tonsils out at the same time, just because the adnoids and tonsils typically go together. crossing fingers.
Wednesday, May 26, 2010
is it friday yet?
Well im slacking again, these updates seem to be getting harder to do, the only reason I can think of is that the boys are always in to something, sigh.
Some news recently found on Zach-man, the urologist wont be able to perform the testicle drop with the ear tubes, simply because of the clinic location, gggrrr. Oh well, so then we thought we would be able to get his ear tube and ABR surgery scheduled and done soon, but the audiologist is booked until the end of june, early july. Sooooo I guess in the next month or so. The spine center in san Antonio is booked out until july for the consultations, so assuming they get all the ducks in a row from all the information they need, looks like that will be july too, and then surgery 1-4 months later. Everything seems to drag. But the up side is , things are in place and even if there is a wait, we have the process started.
Zach goes to see the cardiologist tomorrow, im excited, really hoping to hear good news about the echo that was done a couple weeks ago. Crossing fingers!
The boys are doing really well with homeschool, and I must say im so proud. Both boys are now doing double digit addition, may not seem like a big feat for a 8 year old, but chance actually grasped the concept much easier than mikey, so I am thrilled! We haven’t tried to do subtraction with double digits or carrying digits. Boys are doing well in math, along with the double digits we have done many fractions and working with money as well. Mikey is reading everything in sight, chance has the ability to read, but I think he is just unsure so he holds back. Mikey has mastered nouns, verbs, and other parts of speech. With them doing so well, we have decided not to stop for summer, in addition to them probably forgetting half of what they have learned, I also think we may be able to advance more if we just stick to it. So we will probably do 3-4 days a week, all year long.
Well I know there is more to update with but im out of time for now
Some news recently found on Zach-man, the urologist wont be able to perform the testicle drop with the ear tubes, simply because of the clinic location, gggrrr. Oh well, so then we thought we would be able to get his ear tube and ABR surgery scheduled and done soon, but the audiologist is booked until the end of june, early july. Sooooo I guess in the next month or so. The spine center in san Antonio is booked out until july for the consultations, so assuming they get all the ducks in a row from all the information they need, looks like that will be july too, and then surgery 1-4 months later. Everything seems to drag. But the up side is , things are in place and even if there is a wait, we have the process started.
Zach goes to see the cardiologist tomorrow, im excited, really hoping to hear good news about the echo that was done a couple weeks ago. Crossing fingers!
The boys are doing really well with homeschool, and I must say im so proud. Both boys are now doing double digit addition, may not seem like a big feat for a 8 year old, but chance actually grasped the concept much easier than mikey, so I am thrilled! We haven’t tried to do subtraction with double digits or carrying digits. Boys are doing well in math, along with the double digits we have done many fractions and working with money as well. Mikey is reading everything in sight, chance has the ability to read, but I think he is just unsure so he holds back. Mikey has mastered nouns, verbs, and other parts of speech. With them doing so well, we have decided not to stop for summer, in addition to them probably forgetting half of what they have learned, I also think we may be able to advance more if we just stick to it. So we will probably do 3-4 days a week, all year long.
Well I know there is more to update with but im out of time for now
Monday, May 24, 2010
surgery surgery surgery
well here it is nearly june, been busy planning out surgeries for zach. yuck! when we had our last surgery with the brain bleed i really really hoped that would be the last surgery he would ever have to endure. but i guess life has other plans. luckily these arent emergency surgeries so we are able to plan them out a bit. the first one is for tubes for his ears, and a sedated ABR to test his hearing, we were hoping to have his urologist also present and get his testicles dropped, but unfortunatly that wont happen as both doctors cant get together for the surgery. the ear surgery will probably happen in the next couple weeks.
the other surgery we are planning is a more invasive one, in san antonio. its for a titanium rib. we havent had the consult yet, but judging by all the litature and other doctors he should be a prime canidate for his scoliosis. this consult will be 2 days in itself, the surgery will probably be 1-3 months after the consult. the recovery time for this is a couple weeks with no complications and since were from out of town, 1 week extra to monitor out of hospital. so needless to say it looks like we will be down in san antonio for awhile. after the inital surgery we will need to go back every 3-18 months, depending on growth, to allow them to expand the titainum rib thru a smaller surgery.
summer is also coming, its getting hoooot here. :) well its 1 am, time to hit the bed. nighty night
the other surgery we are planning is a more invasive one, in san antonio. its for a titanium rib. we havent had the consult yet, but judging by all the litature and other doctors he should be a prime canidate for his scoliosis. this consult will be 2 days in itself, the surgery will probably be 1-3 months after the consult. the recovery time for this is a couple weeks with no complications and since were from out of town, 1 week extra to monitor out of hospital. so needless to say it looks like we will be down in san antonio for awhile. after the inital surgery we will need to go back every 3-18 months, depending on growth, to allow them to expand the titainum rib thru a smaller surgery.
summer is also coming, its getting hoooot here. :) well its 1 am, time to hit the bed. nighty night
Monday, May 3, 2010
its May already???
so so sorry for the delay in postings, hopefully yall havent given up on us:) things here are going well. Zach is into his 2nd full week of no overnight feedings with the pump!!! he now gets 8 bolus' of 125cc thruout the day, still getting 1000cc a day, but were able to have his last feeding around 930 at night and he sleeps without the need to be connected to the pump...what a wonderful feeling. LOVE the progress. Zach has also been making progress in the standing area, he is challenging himself LOADS, he is letting go of objects and standing on his own, for good lengths of time!!! he is so proud of himself, and we are so proud of him too!!! he has even managed while standing in front of me after i let his hands go to take 1 to 2 steps towards me on his own!!!!proud mommy moments!
were preparing for hubs to head to the field soon, orinally it was from the 1st to the 23r but has been changed, so we will get him home a lil longer. we finally got zach's referral in to see the specialists in San Antonio for the titanium rib consult. Zach had his ECI annual last week and during that time they took measurements and discovered his legs are now off by 1/2inch. :( so i guess that is more proof that the scoliosis is worse.
wed we will see a new ENT and see what he thinks in reguards to his hearing, the possibility of tubes or just the sedated ABR testing. and on friday he will be seen by the pedi psychologist again and see if after reviewing all of his scans and reports and doctor notes she has anything new to tell us or help us with his head hitting. i will try to be better about updating hope all is well.
were preparing for hubs to head to the field soon, orinally it was from the 1st to the 23r but has been changed, so we will get him home a lil longer. we finally got zach's referral in to see the specialists in San Antonio for the titanium rib consult. Zach had his ECI annual last week and during that time they took measurements and discovered his legs are now off by 1/2inch. :( so i guess that is more proof that the scoliosis is worse.
wed we will see a new ENT and see what he thinks in reguards to his hearing, the possibility of tubes or just the sedated ABR testing. and on friday he will be seen by the pedi psychologist again and see if after reviewing all of his scans and reports and doctor notes she has anything new to tell us or help us with his head hitting. i will try to be better about updating hope all is well.
Wednesday, April 14, 2010
neuro follow up
wowzers its wed. already?? its been a crazy week, harolod has been working wayyyyy to much, drama at work has kept him from being home. hoping this weekend is different. monday we had Z-man's neuro visit, i went into the appointment armed and ready, i had zach;s medical records i have and was ready for a fight. well whats that saying...if you are ready it doesnt happen?...but be unprepared and the worst will take place? the neuro doc was totally different, he wasnt rushed, he answered questions, he didnt beat around the bush. he took his time. best of all when we left we felt validated and not pacified. from his stand, zach is making big strides! he was impressed. i love it when zachy can impress his doctors. zach's head size hasnt grown, still 46cm, been this way for i dont know how long. dr wasnt too concerned said that as long as he is progressing its not a big deal. he did tell us there may come a point when he doesnt progress anymore, but i dont believe that:). the neuro confirmed my belief that zach does indeed have cerebral palsy, he said basically what CP means is "something neurologically is causing motor control problems" and though he gave us a verbal diagnosis, he didnt put it in writing, said he didnt think the "lable" would do anything extra for him, since he is getting so much therapy and stuff now. he said that the type of CP zach has is the hypotonia type, causing him to be floppy and not the spastic type,where the muscles are contracted(something we knew) i believe he said the type was called ataxia cerebral palsy...but dont quote me.
Tuesday was mikey's 8th birthday!! we will celebrate this weekend. he had his first psych therapy on his birthday as well, it went good and we were also able to schedule zach's first visit in next week, not a moment to soon since he has now caused two callases on his fingers, 1 he had bleeding yesterday:( hopefully she will have some ideas for us. the neuro also reccomended zach seeing a psych for his abusive behavior, said its very likely a part of the CP.
Chance had another ocupational therapy today, he is making great strides in it and his therapist seemed to think he will continue to make strides, just has to warm up to the situations and undestand he is safe. very happy to hear that. she had a whole session with no meltdowns!!
Mikey is doing really well in the the ocupational therapy as well, he is practicing lots with sequencing, fine motor, and i can see it helping at home as well!! we LOVE mikey and chance's therapist, Mrs. Karen!
next week zach will also see a new dentist, im hopeful they will have some better advice for his constant teeth grinding than "its typical" he has actually ground his teeth down a lot:(
id like to leave this post with prayer requests, i just learned that there is another CDH baby, a girl, up at scott and white, she is on the heart and lung bybass machine, called ECMO, while this machine is a life saving device, its a very scary one, and one that the baby isnt allowed to stay on long, please pray her lungs will rest well enough while on that she can come off soon and kick butt and get out of the hospital!!
Tuesday was mikey's 8th birthday!! we will celebrate this weekend. he had his first psych therapy on his birthday as well, it went good and we were also able to schedule zach's first visit in next week, not a moment to soon since he has now caused two callases on his fingers, 1 he had bleeding yesterday:( hopefully she will have some ideas for us. the neuro also reccomended zach seeing a psych for his abusive behavior, said its very likely a part of the CP.
Chance had another ocupational therapy today, he is making great strides in it and his therapist seemed to think he will continue to make strides, just has to warm up to the situations and undestand he is safe. very happy to hear that. she had a whole session with no meltdowns!!
Mikey is doing really well in the the ocupational therapy as well, he is practicing lots with sequencing, fine motor, and i can see it helping at home as well!! we LOVE mikey and chance's therapist, Mrs. Karen!
next week zach will also see a new dentist, im hopeful they will have some better advice for his constant teeth grinding than "its typical" he has actually ground his teeth down a lot:(
id like to leave this post with prayer requests, i just learned that there is another CDH baby, a girl, up at scott and white, she is on the heart and lung bybass machine, called ECMO, while this machine is a life saving device, its a very scary one, and one that the baby isnt allowed to stay on long, please pray her lungs will rest well enough while on that she can come off soon and kick butt and get out of the hospital!!
Monday, April 5, 2010
Happy (late) Easter
hello all, ive been putting off updating, there is so much information to update on and i guess i havent had the energy to update, so i will attempt to do so now....
since the last update, Zach has seen the eye dr, the spine dr, and was suppose to have his ECHO done for cardiology. we have also been doing some discussing on possibly obtaining a few other diagnosis'.
first before i forget in the heap of all of the information, i hope everyone had a wonderful Easter and enjoyed being together as a family if possible. hope everyone was healthy and safe!
Eye dr... well since zach is a "special" kiddo, the boys eye dr wanted to see zach on a day when the doc's brother, another eye dr would also be in office, so we got that scheduled and he was seen by 2 docs on the same day. they were very patient and did a good job of checking what they could. his eyes appear healthy, no cataracts (one possible issue with the gene he is missing) and he appears to see well, its hard to say what he sees and how perfect at this point since he cant communicate that to us. we will go back in 6 months for another check. the worst part of this exam was the dialation of zach's eyes, he HATED being held down for that! overall it was a good visit.
the next day we saw the spine doc. zach has had a consistant curve of his spine ( the scoliosis) so far of 25 degrees, this time they went from a laying down xray to a sitting xray(not sure if that makes a difference) and said that in the last 6 months his curve has gone from 25 to 35 degrees...so thats a big jump. like i said i dont know if the new way of doing the xray had something to do with the change, but we were told we need to go to san antonio to see some specialists there and get a consult for a possible titanium rib surgery to help with the curve. im still waiting to hear back on the status of this referral. but i guess in the next coming months we will be headed there to find out what our next step is. (insert nervesness here)
we were suppose to have zach's 6 month ECHO follow up last week, but last minute it was cancelled until the middle of may, sigh.
next week zach will have his followup with neurologist, this is probably where we will also seek out answers to see if we need or should get some new diagnosis' for him. these new ones are cerebral palsy ( the definition of this is ANY brain damage done from conception to the first 2-3 years of life) with zach's brain bleed, brain atrophy, and a copy of his eeg report from less than a week old where it states (a diffuse disturbance in cerebral function was noted) to me says it plain and clear... ive had one doc agree with me on this and tell me that it would be hard to get someone to diagnosis this simply because no one wants the "blame" on them. sigh. blame is the last thing we have in mind. if he has this then he needs it noted so that he can recieve any additional help. and the other diagnosis' is a bit harder for me to swallow, i know its because of the "stigma" attached to it, and that NO lable changes Zach, but at the same time, no no no no no, mommy denial maybe? its, mental retardation, there i said it. why cant they call it cognitive impairment? so many other states do, but not Texas, sigh. the "R" word. bleh. but truthfully he is at less than a year old mentally, in some areas probably much less, so for the time being the lable is "severe global developmentally delay" and according to therapists, thats more than enough given his actual ability to communicate and act and do age appropriate things for him to recieve this diagnosis. the only reason i am even considering it is for zach, for his future, for extra help we may be entitled to to help him gain more ground. i will not believe for a moment there is any stopping zach, and that he WILL do it ALL, in his time. i dont want the stigma attached to him. i dont want people to see the "R" word before they even see zach. im torn. im at a crosswords and dont know what path to take.
we have also put in a referral for zach to see the psychologist that the boys are now seeing, for his self abusive habits, his hitting and punching of himself, he now does this and laughs about it :( and his biting himself. we will see if she has any experience in this and has any tips.
the boys have both been evaulated with this psychologist last week for their possible autistic traits. Chance was on the boarder for being diagnosed on the spectrum, but missed it barely, he will be seeing her (hopefully soon ) for behavior therapy, as of now she is calling it a conduct disorder i believe and will re-evaluate him in about 6 months. Mikey was also tested, however he did meet criteria, he is boardering between asperger's and ppd-nos, for the time being since she will be meeting with him 1-2 times a week for therapy she wants to call it ppd-nos, and may later change this. he will also be evaulated in about a year. mikey will begin his therapy on his 8th birthday, april 13th. its hard to believe his birthday is so close and we havent had a chance to do much of anything in means of planning anything. im waiting on my clone....
therapy wise here is how things are looking for zach
ocupational-she hasnt had much luck getting zach to try to do much, he has been "busy" doing his own thing...hitting his toys, hitting himself, or crawling to new spots on the wall to hit! she is still working on his feeding.....slow and steady wins the race i guess. 2x a week she comes out to do therapy, there is progress made, zach has just become difficult lately.
physical-she is also coming out 2x weekly. he is now pulling up to EVERY surface. she hasnt gottan him to cruise much on his own, or to let go of the surfaces. we will be picking up his SMO's (new foot braces) this thursday and hopefully that will help give better support for him.
speech-2 times a month. working on sign language, zach has no intrest. working on verbal communication...again no intrest. working on feeding...no intrest. sigh. slow and steady.
developmental-3 times a month, she works on a mixture of everything with him and helps us obtain sources for support, ideas, and so forth.
i dont know where we would be without all our wonderful therapists! they work wonders.
mikey is still in ocupational therapy 2 times a week, and chance has joined him, still unsure if it will be 1 or 2 times a week for him. mikey has been scheduled for his first psychological therapy, were hopeful to get 2 in a week, and im unsure yet for chance. like i said im waiting on my clone! :)
wwhhheeewww there you have it...thats the reason i was putting off the update, its just so much to type. thanks for reading, hope you all have a wonderful week!
since the last update, Zach has seen the eye dr, the spine dr, and was suppose to have his ECHO done for cardiology. we have also been doing some discussing on possibly obtaining a few other diagnosis'.
first before i forget in the heap of all of the information, i hope everyone had a wonderful Easter and enjoyed being together as a family if possible. hope everyone was healthy and safe!
Eye dr... well since zach is a "special" kiddo, the boys eye dr wanted to see zach on a day when the doc's brother, another eye dr would also be in office, so we got that scheduled and he was seen by 2 docs on the same day. they were very patient and did a good job of checking what they could. his eyes appear healthy, no cataracts (one possible issue with the gene he is missing) and he appears to see well, its hard to say what he sees and how perfect at this point since he cant communicate that to us. we will go back in 6 months for another check. the worst part of this exam was the dialation of zach's eyes, he HATED being held down for that! overall it was a good visit.
the next day we saw the spine doc. zach has had a consistant curve of his spine ( the scoliosis) so far of 25 degrees, this time they went from a laying down xray to a sitting xray(not sure if that makes a difference) and said that in the last 6 months his curve has gone from 25 to 35 degrees...so thats a big jump. like i said i dont know if the new way of doing the xray had something to do with the change, but we were told we need to go to san antonio to see some specialists there and get a consult for a possible titanium rib surgery to help with the curve. im still waiting to hear back on the status of this referral. but i guess in the next coming months we will be headed there to find out what our next step is. (insert nervesness here)
we were suppose to have zach's 6 month ECHO follow up last week, but last minute it was cancelled until the middle of may, sigh.
next week zach will have his followup with neurologist, this is probably where we will also seek out answers to see if we need or should get some new diagnosis' for him. these new ones are cerebral palsy ( the definition of this is ANY brain damage done from conception to the first 2-3 years of life) with zach's brain bleed, brain atrophy, and a copy of his eeg report from less than a week old where it states (a diffuse disturbance in cerebral function was noted) to me says it plain and clear... ive had one doc agree with me on this and tell me that it would be hard to get someone to diagnosis this simply because no one wants the "blame" on them. sigh. blame is the last thing we have in mind. if he has this then he needs it noted so that he can recieve any additional help. and the other diagnosis' is a bit harder for me to swallow, i know its because of the "stigma" attached to it, and that NO lable changes Zach, but at the same time, no no no no no, mommy denial maybe? its, mental retardation, there i said it. why cant they call it cognitive impairment? so many other states do, but not Texas, sigh. the "R" word. bleh. but truthfully he is at less than a year old mentally, in some areas probably much less, so for the time being the lable is "severe global developmentally delay" and according to therapists, thats more than enough given his actual ability to communicate and act and do age appropriate things for him to recieve this diagnosis. the only reason i am even considering it is for zach, for his future, for extra help we may be entitled to to help him gain more ground. i will not believe for a moment there is any stopping zach, and that he WILL do it ALL, in his time. i dont want the stigma attached to him. i dont want people to see the "R" word before they even see zach. im torn. im at a crosswords and dont know what path to take.
we have also put in a referral for zach to see the psychologist that the boys are now seeing, for his self abusive habits, his hitting and punching of himself, he now does this and laughs about it :( and his biting himself. we will see if she has any experience in this and has any tips.
the boys have both been evaulated with this psychologist last week for their possible autistic traits. Chance was on the boarder for being diagnosed on the spectrum, but missed it barely, he will be seeing her (hopefully soon ) for behavior therapy, as of now she is calling it a conduct disorder i believe and will re-evaluate him in about 6 months. Mikey was also tested, however he did meet criteria, he is boardering between asperger's and ppd-nos, for the time being since she will be meeting with him 1-2 times a week for therapy she wants to call it ppd-nos, and may later change this. he will also be evaulated in about a year. mikey will begin his therapy on his 8th birthday, april 13th. its hard to believe his birthday is so close and we havent had a chance to do much of anything in means of planning anything. im waiting on my clone....
therapy wise here is how things are looking for zach
ocupational-she hasnt had much luck getting zach to try to do much, he has been "busy" doing his own thing...hitting his toys, hitting himself, or crawling to new spots on the wall to hit! she is still working on his feeding.....slow and steady wins the race i guess. 2x a week she comes out to do therapy, there is progress made, zach has just become difficult lately.
physical-she is also coming out 2x weekly. he is now pulling up to EVERY surface. she hasnt gottan him to cruise much on his own, or to let go of the surfaces. we will be picking up his SMO's (new foot braces) this thursday and hopefully that will help give better support for him.
speech-2 times a month. working on sign language, zach has no intrest. working on verbal communication...again no intrest. working on feeding...no intrest. sigh. slow and steady.
developmental-3 times a month, she works on a mixture of everything with him and helps us obtain sources for support, ideas, and so forth.
i dont know where we would be without all our wonderful therapists! they work wonders.
mikey is still in ocupational therapy 2 times a week, and chance has joined him, still unsure if it will be 1 or 2 times a week for him. mikey has been scheduled for his first psychological therapy, were hopeful to get 2 in a week, and im unsure yet for chance. like i said im waiting on my clone! :)
wwhhheeewww there you have it...thats the reason i was putting off the update, its just so much to type. thanks for reading, hope you all have a wonderful week!
Tuesday, March 16, 2010
ENT followup
Today was Zach's ENT follow up from his ear infection, results say left ear is good, right ear needs a few more days of drops. while we were there we went ahead and got a hearing test done for zach. the good news is the tempanogram (sp) that they insert in his ear to check for middle ear problems and fluid build up showed that the ear drum was good, no fluid! this is a first!! the bad news is, after a few minutes in the sound proof room, zach failed to respond to the audiologist sending sounds in the room. the audiologist was concerned and requested zach gets a ABR done, so we are on the waiting list for this and will hopefully have his testes dropped the same time while he is already sedated. so now we wait.....
Monday, March 15, 2010
genetic follow up
today was a LONG day! we left early for austin, only to get there on time...really thought we were gonna have some time to spare. sigh. Zach was seen and certianly voiced his opinion in the matter, he wasnt happy to be there at all!! he only smiled after the exam and when the doc wasnt near him. what a silly boy!
from a genetic standpoint, we are thinking his deletion on the 22nd chromosome is a CNV,copy number variant...meaning it runs in our family somehow, so far my blood came back negative, however dad gave his blood today, we will see if his has the same deletion. zachs head was measured and its the same from the last time we were there, about 9 months ago, so this means no brain growth :( but he is making developmental gains so we will sit happy with that! she also thinks his hitting himself may be from the ears, so tomorrow when we go to the ENT i think its time to convince the doc to go on and plan this surgery, we will also need to plan to have his testicles lowered and give him a ABR while he is sedated, this is the "gold standard" hearing test. we need to see where we stand for his hearing.
after the appointment we raced back to belton to have Zach seen by a special company that was in town fitting kids for special trykes, we are hoping to get him one donated to him, after he outgrows it then we would give it to another child who needs it. he loved being on the tryke:)
by the time that was done our nurse was off duty and it was time for her to get back to the house to head home herself. if only there were MORE hours in the day...
from a genetic standpoint, we are thinking his deletion on the 22nd chromosome is a CNV,copy number variant...meaning it runs in our family somehow, so far my blood came back negative, however dad gave his blood today, we will see if his has the same deletion. zachs head was measured and its the same from the last time we were there, about 9 months ago, so this means no brain growth :( but he is making developmental gains so we will sit happy with that! she also thinks his hitting himself may be from the ears, so tomorrow when we go to the ENT i think its time to convince the doc to go on and plan this surgery, we will also need to plan to have his testicles lowered and give him a ABR while he is sedated, this is the "gold standard" hearing test. we need to see where we stand for his hearing.
after the appointment we raced back to belton to have Zach seen by a special company that was in town fitting kids for special trykes, we are hoping to get him one donated to him, after he outgrows it then we would give it to another child who needs it. he loved being on the tryke:)
by the time that was done our nurse was off duty and it was time for her to get back to the house to head home herself. if only there were MORE hours in the day...
Tuesday, March 9, 2010
cant hear you, i got therapiez growing outa my ears
here a therapy, there a therapy, everywhere a therapy, eeek. so today was Chance's eval for Ocupational therapy, we were able to let him take mikeys spot with mikeys therapist for the eval. ive always joked with chance that he wasnt in therapy "yet" well, those words came back to bite me! he qualifies for therapy, ill find out thursday exactly what his area of weakness is.
Zach isnt feeling well thanks to his ears. fever, cranky, diareah thanks to the antibiotic, sleepy, restless, fussy, higher heart rate, higher oxygen need, mouth breathing...stuffy nose and im guessing a sore throat! ugh. so i cancelled his 3 therapies for tomorrow. he needs his rest. i have plans to go to 2 pharmacies, do schooling with the boys, run by walmart, hobby lobby and i wanted to hit a few thrift stores,and possibly the library...we will see how much of that can get done. id like to sleep some too.
Zach isnt feeling well thanks to his ears. fever, cranky, diareah thanks to the antibiotic, sleepy, restless, fussy, higher heart rate, higher oxygen need, mouth breathing...stuffy nose and im guessing a sore throat! ugh. so i cancelled his 3 therapies for tomorrow. he needs his rest. i have plans to go to 2 pharmacies, do schooling with the boys, run by walmart, hobby lobby and i wanted to hit a few thrift stores,and possibly the library...we will see how much of that can get done. id like to sleep some too.
Monday, March 8, 2010
which hat now?
well its monday YIPPY (insert small bit of sarcasm). this week we have 8 therapy sessions planned, Zach has OT, and PT twice each, he has speech and developmental therapy, Mikey has ot, just once this week as Chance gets the pleasure of OT this week as well, he gets his evaluation and we will see where we need to go from there. Zach also gets his RSV shot and then hopefully by saturday Harold is home. just for fun ive decided to list "my hats" mom, wife, book keeper, records updater, cook, errand runner,appointment maker, cook(though not very good) housekeeper(also lagging behind) homeschool teacher (think ive lost my mind) therapy aid (ST, OT,PT,DT)diaper changer, medication administrator. needless to say im looking forward to Harold returning home. he has a "Hunny do" list alread! here it is...
HUNNY DO
Take Over ALL Hats....
my list for when he returns?
SLEEP!!!
HAVE A GREAT MONDAY EVERYONE
HUNNY DO
Take Over ALL Hats....
my list for when he returns?
SLEEP!!!
HAVE A GREAT MONDAY EVERYONE
Sunday, March 7, 2010
the small gestures
friday we left the pulmo visit with zach and headed over to mcdonalds for the boys to eat and run around. loaded zach into his stroller/wheelchair, oxygen tank in the front, bag of meds on the side and went in. thats when it happend, something so small it was probably not noticed by many others. inside we met an Angel, though from the outward appearce most wouldnt have guessed (never judge a book by its cover) a twenty-something guy with tattoos down his arms, and guages in his ears reached down in a nearly automatic response and waved and talked to zach, of course zach just smiled up a storm at the young guy. the thing is, not that he spoke to Zach, but that he did it without hesitation, he didnt see the oxygen from his nose, or the tank in the stroller, or that the stroller wasnt like most...he saw ZACH, nothing more. in that brief meeting i saw an Angel, not a "misfit of society" or "punk rocker" or any other stereotypical phrase that may be used. thank you for the moment....
Saturday, March 6, 2010
saving resources
since im posting alot on becoming healthier and staying healthy i thought it may be a good idea to also share our way to not only save on our electricity bill, but to also help save resources for both us and the earth.
we recycle, cardboard, cans, plastics that allow for it. we try to buy items packaged in items that can be recycled.
we turn lights out when not using them, we use the energy saving bulbs, lots of our appliances are energy effecient as well. we wash clothes in cold water only, helps save electricity. i do most of my laundry and dishes at night, when the cost of electricity is down. using the dishwasher is actually better, uses much less water than hand washing. when we brush our teeth we only turn water on to clean up, its off during the brushing process.
we dont use paper towels, we use regular hand towels, we dont use paper napkins, we use cloth.
alot of what we do is just being mindful and aware that our actions will not only affect our pocket book but also our natual resources. again start small, one less bag of garbage, one less load of laundry, using real plates instead of paper....
we recycle, cardboard, cans, plastics that allow for it. we try to buy items packaged in items that can be recycled.
we turn lights out when not using them, we use the energy saving bulbs, lots of our appliances are energy effecient as well. we wash clothes in cold water only, helps save electricity. i do most of my laundry and dishes at night, when the cost of electricity is down. using the dishwasher is actually better, uses much less water than hand washing. when we brush our teeth we only turn water on to clean up, its off during the brushing process.
we dont use paper towels, we use regular hand towels, we dont use paper napkins, we use cloth.
alot of what we do is just being mindful and aware that our actions will not only affect our pocket book but also our natual resources. again start small, one less bag of garbage, one less load of laundry, using real plates instead of paper....
Friday, March 5, 2010
arm yourself
knowledge is power, and ive decided to step out and lend some to you all, in hopes i wont be pointed at and whisperd "she's one of them....the crazy ones" but if i am, so be it. the info is here, please check it out.
this site has a list of 12 chemicals in beauty supplies i hope you all read and take note of, these are things that you need to rid yourself of. again my all time fav. site for ordering the healthier things is www.vitacost.com
http://www.searchforthecause.org/documents/dirty_dozen.pdf
this site lists alot of good information about BPA, im sure you have heard some of it in the media, but here is a good look and where its used.
http://www.toxicnation.ca/toxics-in-your-body/bisphenola
this is also a good link to take a look inside your body and find out where the chemicals come from, what they do inside the body, and so forth.
http://www.toxicnation.ca/toxics-in-your-body/how-are-you-exposed
here is a link to a list of good ideas for going toxic free
http://www.toxicnation.ca/go-toxic-free
finally i dont want to completely overboard anyone with info, but will give a quick summary of things we are doing in our home to help get toxic free. i use mainly homemade cleaners, baking soda and vinegar to clean items, this does just as well as soft scrub, clorox, commet or any other items your now using. vinegar can be used to sanitize, clean windows and mirrors, laundry to help remove static and get clothes softer. clean toilet bowls, mopping, etc. baking soda is used for those items i need to scrub. we use no spray cans in the house, no lysol or fragrant oderizers. baking soda and vinegar can be used in the dishwasher as well as borax, lemon juice, or orange juice to help add a nice smell. bath time we use burts bees for the kids and are making the switch for ourself we use toms toothpaste for everyone. im looking into getting some "soap nuts" for our laundry as this would be a toxic free, eco friendly way to clean clothes. we also wash in only cold water as it uses less electricity, but that is for another post. i use lots of supplements for the kids and i, including vitamin c, vitamin d3, echinacia, fish oil to help boost our immune system. i use aloe vera gel for lotions, to help heal scrapes, to help condition hair, and am looking into getting some aloe vera juice as its many benifits for health. we are trying to cut out as much processed foods as possible, making more from scratch, etc. these are just a few ideas, start small dont feel overwhelmed.
this site has a list of 12 chemicals in beauty supplies i hope you all read and take note of, these are things that you need to rid yourself of. again my all time fav. site for ordering the healthier things is www.vitacost.com
http://www.searchforthecause.org/documents/dirty_dozen.pdf
this site lists alot of good information about BPA, im sure you have heard some of it in the media, but here is a good look and where its used.
http://www.toxicnation.ca/toxics-in-your-body/bisphenola
this is also a good link to take a look inside your body and find out where the chemicals come from, what they do inside the body, and so forth.
http://www.toxicnation.ca/toxics-in-your-body/how-are-you-exposed
here is a link to a list of good ideas for going toxic free
http://www.toxicnation.ca/go-toxic-free
finally i dont want to completely overboard anyone with info, but will give a quick summary of things we are doing in our home to help get toxic free. i use mainly homemade cleaners, baking soda and vinegar to clean items, this does just as well as soft scrub, clorox, commet or any other items your now using. vinegar can be used to sanitize, clean windows and mirrors, laundry to help remove static and get clothes softer. clean toilet bowls, mopping, etc. baking soda is used for those items i need to scrub. we use no spray cans in the house, no lysol or fragrant oderizers. baking soda and vinegar can be used in the dishwasher as well as borax, lemon juice, or orange juice to help add a nice smell. bath time we use burts bees for the kids and are making the switch for ourself we use toms toothpaste for everyone. im looking into getting some "soap nuts" for our laundry as this would be a toxic free, eco friendly way to clean clothes. we also wash in only cold water as it uses less electricity, but that is for another post. i use lots of supplements for the kids and i, including vitamin c, vitamin d3, echinacia, fish oil to help boost our immune system. i use aloe vera gel for lotions, to help heal scrapes, to help condition hair, and am looking into getting some aloe vera juice as its many benifits for health. we are trying to cut out as much processed foods as possible, making more from scratch, etc. these are just a few ideas, start small dont feel overwhelmed.
Thursday, March 4, 2010
Fluoride
recently my eyes have become open by some news that just made my jaw drop...FLUORIDE...the item i held so close to "keeping healthy teeth" turns out to be originally a toxic pollutant...OMG! its in our WATER, its in toothpaste, its everywhere. i immediatly threw out our toothpaste and orderd toms of main toothpaste with no fluoride. we will no longer be getting the fluoride treatments at the dentist, and im looking into getting a good reverse osmosis water filter, its the only kind that will remove fluoride. boiling water will remove chlorine but consentrates fluoride.
this site has a lot of info, check it out for yourself, but i will also copy and paste some of it here.
http://www.mbschachter.com/dangers_of_fluoride_and_fluorida.htm
if your looking for the fluoride free toothpaste, please visit. www.vitacost.com
Facts About Fluoride
So, what are some of the facts about fluoride? According to the handbook, Clinical Toxicology of Commercial Products, fluoride is more poisonous than lead and just slightly less poisonous than arsenic. It is a cumulative poison that accumulates in bone over the years. According to the Physicians Desk Reference, "in hypersensitive individuals, fluorides occasionally cause skin eruptions such as atopic dermatitis, eczema, or urticaria. Gastric distress, headache, and weakness have also been reported. These hypersensitive reactions usually disappear promptly after discontinuation of the fluoride."
In the largest U.S. study of fluoridation and tooth decay, United States Public Health Service dental records of over 39,000 school children, ages 5-17, from 84 areas around the United States showed that the number of decayed, missing, and filled teeth per child was virtually the same in fluoridated and non-fluoridated areas. Dr. John Colquhoun, former Chief Dental Officer of the Department of Health for Auckland, New Zealand, investigated tooth decay statistics from about 60,000 12 to 13 year old children and showed that fluoridation had no significant effect on tooth decay rate
Prior to 1945, fluoride was properly regarded as an environmental pollutant. It was responsible for many lawsuits against industries, such as the aluminum industry and the phosphate fertilizer industry, whose waste products contain large quantities of fluoride. This fluoride destroyed crops and animals, leading to the lawsuits. The limited public view was that fluoride was an environmental pollutant that needed to be reduced or eliminated from the environment.
As a result of clever public relations campaigns, fluoride was transformed from an environmental pollutant to an essential nutrient necessary for producing healthy teeth. The science was poor, but the P.R. campaign was great. Being against fluoride was like being against motherhood or apple pie. Industries not only made millions from selling this environmental pollutant to water companies and toothpaste companies, but more importantly, it saved billions of dollars that would be required to clean up this environmental pollutant.
ive read elsewhere that it is a toxic that builds up in your bones as well, so im not sure that it will ever be "out of your system" but i encourage you to do your own research.
this site has a lot of info, check it out for yourself, but i will also copy and paste some of it here.
http://www.mbschachter.com/dangers_of_fluoride_and_fluorida.htm
if your looking for the fluoride free toothpaste, please visit. www.vitacost.com
Facts About Fluoride
So, what are some of the facts about fluoride? According to the handbook, Clinical Toxicology of Commercial Products, fluoride is more poisonous than lead and just slightly less poisonous than arsenic. It is a cumulative poison that accumulates in bone over the years. According to the Physicians Desk Reference, "in hypersensitive individuals, fluorides occasionally cause skin eruptions such as atopic dermatitis, eczema, or urticaria. Gastric distress, headache, and weakness have also been reported. These hypersensitive reactions usually disappear promptly after discontinuation of the fluoride."
In the largest U.S. study of fluoridation and tooth decay, United States Public Health Service dental records of over 39,000 school children, ages 5-17, from 84 areas around the United States showed that the number of decayed, missing, and filled teeth per child was virtually the same in fluoridated and non-fluoridated areas. Dr. John Colquhoun, former Chief Dental Officer of the Department of Health for Auckland, New Zealand, investigated tooth decay statistics from about 60,000 12 to 13 year old children and showed that fluoridation had no significant effect on tooth decay rate
Prior to 1945, fluoride was properly regarded as an environmental pollutant. It was responsible for many lawsuits against industries, such as the aluminum industry and the phosphate fertilizer industry, whose waste products contain large quantities of fluoride. This fluoride destroyed crops and animals, leading to the lawsuits. The limited public view was that fluoride was an environmental pollutant that needed to be reduced or eliminated from the environment.
As a result of clever public relations campaigns, fluoride was transformed from an environmental pollutant to an essential nutrient necessary for producing healthy teeth. The science was poor, but the P.R. campaign was great. Being against fluoride was like being against motherhood or apple pie. Industries not only made millions from selling this environmental pollutant to water companies and toothpaste companies, but more importantly, it saved billions of dollars that would be required to clean up this environmental pollutant.
ive read elsewhere that it is a toxic that builds up in your bones as well, so im not sure that it will ever be "out of your system" but i encourage you to do your own research.
Wednesday, March 3, 2010
relying on technology...
yep were in the age of technology, sometimes its wonderful, faster computers, smarter phones, phones with no landline, ability to bank, pay bills and make purchases all online. but the kind of technology im talking about tonight is medical technology. yes its great, its lifesaving, every step that is made is a step that could potentially save hundreds of lives. im all for it! without the vent we wouldnt have zach here, without the technology to feed zach thru the gtube, he would have starved, these are all good things.
question for you though, when you tuck your kids in bed and check in on them how do you know they are sleeping well...really in hard sleep? maybe they are drooling, or snoring? maybe your kiddo sweats while they sleep? for zach when i check on him thru the night, my number 1 factor in seeing if he is sleeping hard...his heart rate. and how do i check that? a piece of technology we use for zach to monitor his heartrate and his oxygen saturation level, most of you will be familiar with this when you take your kid to the doctor for a check up and they put the little lazer probe on their finger for about a minute and then take it off....
well in zachs case, anytime he is sleeping it is on the entire duration, during waking moments he has it spot checked, a few times a day. we rely heavily on these numbers, if his "awake" heartrate is higher than 130 its a sign he may be in discomfort, if his Sat is lower than 96 we immediatly check to see if his oxygen is in his nose or if he has removed it. during the night when he is asleep Zach's heart rate can go as low as 70 that ive seen, and this is thought to be "good" since it is much less work on his heart. if its hanging out in the low 100's thats a sign to us that he may be working on getting sick. its crazy to me that we rely so heavily on these lil numbers. that these numbers play such a crutial part in Zach's care, and moreso that without this technology we may not be able to catch things soon enough.
technology is good, but sometimes i hate relying on it....
question for you though, when you tuck your kids in bed and check in on them how do you know they are sleeping well...really in hard sleep? maybe they are drooling, or snoring? maybe your kiddo sweats while they sleep? for zach when i check on him thru the night, my number 1 factor in seeing if he is sleeping hard...his heart rate. and how do i check that? a piece of technology we use for zach to monitor his heartrate and his oxygen saturation level, most of you will be familiar with this when you take your kid to the doctor for a check up and they put the little lazer probe on their finger for about a minute and then take it off....
well in zachs case, anytime he is sleeping it is on the entire duration, during waking moments he has it spot checked, a few times a day. we rely heavily on these numbers, if his "awake" heartrate is higher than 130 its a sign he may be in discomfort, if his Sat is lower than 96 we immediatly check to see if his oxygen is in his nose or if he has removed it. during the night when he is asleep Zach's heart rate can go as low as 70 that ive seen, and this is thought to be "good" since it is much less work on his heart. if its hanging out in the low 100's thats a sign to us that he may be working on getting sick. its crazy to me that we rely so heavily on these lil numbers. that these numbers play such a crutial part in Zach's care, and moreso that without this technology we may not be able to catch things soon enough.
technology is good, but sometimes i hate relying on it....
Tuesday, March 2, 2010
sigh
well i was on a really good role with the posts, sigh. then life caught up. we have been doing okay, a couple more weeks and the hubs will be back, at least for a few months:)
took the boys this weekend to the carnival, that was intresting, chance wouldnt stop screaming and crying when we first got there he was anxious and scared of the rides and the noises. he ended up having a good time, he really liked the smaller rides, i wasnt able to get him to go in the fun houses with mikey though, he was just too freaked out. all in all i think the boys had a great time, 3 hours at the carni sure wore us out!
it was a pretty weekend so i also took the boys to wazoo's a bounce house place and let them play about 3 hours and then to the park for about an hour, needless to say they slept good all weekend!
Zach didnt get to enjoy these outings, mainly because of the crowds and there was a nice wind chill to it and its not like he would be participating, so i let him enjoy the house with just him and the nurse.
He has been up to his own lil tricks though. he started pulling up about 10 days ago, on his baby walker, and now he is pulling up to the entertainment center, the couch, his crib...all over! he is so excited by this as well. i think hubs will be excited too. okay well ill try to be better at posting again..
took the boys this weekend to the carnival, that was intresting, chance wouldnt stop screaming and crying when we first got there he was anxious and scared of the rides and the noises. he ended up having a good time, he really liked the smaller rides, i wasnt able to get him to go in the fun houses with mikey though, he was just too freaked out. all in all i think the boys had a great time, 3 hours at the carni sure wore us out!
it was a pretty weekend so i also took the boys to wazoo's a bounce house place and let them play about 3 hours and then to the park for about an hour, needless to say they slept good all weekend!
Zach didnt get to enjoy these outings, mainly because of the crowds and there was a nice wind chill to it and its not like he would be participating, so i let him enjoy the house with just him and the nurse.
He has been up to his own lil tricks though. he started pulling up about 10 days ago, on his baby walker, and now he is pulling up to the entertainment center, the couch, his crib...all over! he is so excited by this as well. i think hubs will be excited too. okay well ill try to be better at posting again..
Monday, February 15, 2010
me counting? never
so lets see we have gone thru 32 days of the 58 days of Dh's school training in georgia. so we have about 25 more to go. before you ask, no im not counting down the days, keeping a tally of all the doc appointments or therapy sessions, pay days, or trash days until he comes home......yea right. haha. im practically counting down the hours. lets see thats approximatly 612 hours, 36,720 minutes, or 2203200 seconds until he is back home!
not much tonight, im drained and ready for bed.....just gotta vacume the floor, get dirty clothes in washer, washed clothes in dryer, dried clothes folded, folded clothes put away, clean the kitchen, clean the table, feed the dog.....
not much tonight, im drained and ready for bed.....just gotta vacume the floor, get dirty clothes in washer, washed clothes in dryer, dried clothes folded, folded clothes put away, clean the kitchen, clean the table, feed the dog.....
Thursday, February 11, 2010
the road to finding "me" part 4, homeschooling and more
at the point when i withdrew the boys from public school for homeschool i had many people thinking i was crazy, i was one of them. mikey had ocupational therapy 2 times a week that i was dragging him out of school for, plus any out of town appointments he, chance or zach had, so i reasoned with myself that he was missing to much school as well, and he was. zach had therapy coming out to the house 4-5 times a week, plus his doctor appointments, the boys had their psychologist and developmentalist they were seeing plus the normal appointments. life was crazy, and here i was adding fuel to the fire. sigh.
its been a few months since homeschooling has started, and things still get a bit scattered about but were making it. mikey has sence been diagnosed with high functioning autism/asperger's, in addition to the SPD, ADHD, and sleep disturbances, chance had his iq tested at 4 and scored for a 5 year old at the 98%, i was told by the psychologist he was VERY advanced and was genius-like. he is also being tested for being somewhere on the spectrum of autism, or a mood disorder, he is being treated for ADHD in addition to his sleep problems, we still battle with his asthma and him getting croup each season. Zach has remained well and is doing better each day. in june 2009 just a couple months before he turned 2 he sat up on his own! in july he was crawling, and saying mama!! we were sooo happy. he was hitting milestones. he is still fed thru his gtube, he has recently been taken off many of his medications, only taking previcid, pulmicort, viagra, and diuril now. thats a small handful compared to his 13ish when he first came home. he is trying to pull up and walking small steps in a gait trainer. his diagnosis' are chronic lung disease, restrictive airway disease, pulmonary hypertension, pulmonary hypoplasia, repaired congenital diaphragmatic hernia, repaired subdural hematoma, gtube fed, scoliosis, 33 week preemie, hypotonic, brain atrophy, microcephaly, severe global developmental delay. compared to where he was a year ago he has come so far and will continue to thrive!
with all the changes life has thrown our way in the last 10 years my outlook has changed and my opinion on life has changed. i have new stressors that replace what i use to think of as stress. but i have new rewards in my life that make me glad each day i have with them.
with all the issues zach has with his lungs we dont use chemical cleaners in the house anymore, mainly vinegar and baking soda, for everything. its much healthier for us all. were trying to eat healthier, im even learning recipes for making things from scratch. were trying to eliminate our processed foods, rid ourself of those toxins and be more mindful of the enviorment. zach still recieves his RSV shots for the seasons sept thru april due to his fragile lungs but we have decided other than that and his hep shots due to the frequent blood transfusions he has had in the past and may need in the future the boys and us will no longer be immunized with anything. after finally doing our own research on the chemicals in the shots we have decided we dont feel comfortable injecting the posions to our kids. im not sure if any of the shots may have helped to contribute to the autism spectrum disorders or not, but i know now that its not right for us.
so in all after all the rambling, thank you for being so patient, our journey has led me to this path, one where i want to protect our family from everything i can. i want to make our own food, school our children, not vacinate them, keep them away from as many chemicals as possible, some say im trying to live in a bubble... and i will agree. but its my bubble, im not insisting anyone join us, so dont pop my bubble:)
ive become more outspoken, i know more about medical mumbo jumbo than i ever thought was possible, im learning how to stand up for what we feel, without worring is everyone going to be okay with our decisions, im learning how to be more self sufficient, trying to grow our container garden, stock up on food items we can use in case of an emergency, im addicted to couponing, i love sale shopping and thrift shopping, i enjoy making food from scratch now. i enjoy homeschooling the boys...this is the new me. i think i have found my calling with my boys and all their medical mumbo jumbo....................
its been a few months since homeschooling has started, and things still get a bit scattered about but were making it. mikey has sence been diagnosed with high functioning autism/asperger's, in addition to the SPD, ADHD, and sleep disturbances, chance had his iq tested at 4 and scored for a 5 year old at the 98%, i was told by the psychologist he was VERY advanced and was genius-like. he is also being tested for being somewhere on the spectrum of autism, or a mood disorder, he is being treated for ADHD in addition to his sleep problems, we still battle with his asthma and him getting croup each season. Zach has remained well and is doing better each day. in june 2009 just a couple months before he turned 2 he sat up on his own! in july he was crawling, and saying mama!! we were sooo happy. he was hitting milestones. he is still fed thru his gtube, he has recently been taken off many of his medications, only taking previcid, pulmicort, viagra, and diuril now. thats a small handful compared to his 13ish when he first came home. he is trying to pull up and walking small steps in a gait trainer. his diagnosis' are chronic lung disease, restrictive airway disease, pulmonary hypertension, pulmonary hypoplasia, repaired congenital diaphragmatic hernia, repaired subdural hematoma, gtube fed, scoliosis, 33 week preemie, hypotonic, brain atrophy, microcephaly, severe global developmental delay. compared to where he was a year ago he has come so far and will continue to thrive!
with all the changes life has thrown our way in the last 10 years my outlook has changed and my opinion on life has changed. i have new stressors that replace what i use to think of as stress. but i have new rewards in my life that make me glad each day i have with them.
with all the issues zach has with his lungs we dont use chemical cleaners in the house anymore, mainly vinegar and baking soda, for everything. its much healthier for us all. were trying to eat healthier, im even learning recipes for making things from scratch. were trying to eliminate our processed foods, rid ourself of those toxins and be more mindful of the enviorment. zach still recieves his RSV shots for the seasons sept thru april due to his fragile lungs but we have decided other than that and his hep shots due to the frequent blood transfusions he has had in the past and may need in the future the boys and us will no longer be immunized with anything. after finally doing our own research on the chemicals in the shots we have decided we dont feel comfortable injecting the posions to our kids. im not sure if any of the shots may have helped to contribute to the autism spectrum disorders or not, but i know now that its not right for us.
so in all after all the rambling, thank you for being so patient, our journey has led me to this path, one where i want to protect our family from everything i can. i want to make our own food, school our children, not vacinate them, keep them away from as many chemicals as possible, some say im trying to live in a bubble... and i will agree. but its my bubble, im not insisting anyone join us, so dont pop my bubble:)
ive become more outspoken, i know more about medical mumbo jumbo than i ever thought was possible, im learning how to stand up for what we feel, without worring is everyone going to be okay with our decisions, im learning how to be more self sufficient, trying to grow our container garden, stock up on food items we can use in case of an emergency, im addicted to couponing, i love sale shopping and thrift shopping, i enjoy making food from scratch now. i enjoy homeschooling the boys...this is the new me. i think i have found my calling with my boys and all their medical mumbo jumbo....................
road to finding "me" part 3
around 2 years old we also learned that chance had asthma...he had had 2 severe cases of croup and then the diagnosis hit. he also had allergies and ezcema, and had a small growth on the side of his cheek, we found out was juvinile melanoma and had it removed thru surgery. life seemed to be spinning out of control, but we were managing and doing okay thru it.
April 2007 we learned we were having our 3rd child, shortly after in May i had a small accident in a 711 and had dislocated my knee 12 times in 12 hours, i was in PAIN, on meds, that i wish i could have avoided being pregnant. i was in a knee brace with a walker for about 2 months, i had ocupational therapy myself to help me get up and moving again. in july i was out of therapy and by the 19th we had our BIG ultrasound scheduled, i couldnt wait to find out if we were having a boy or girl! i was so excited. the ultrasound tech said it was a boy, and then got very quiet a few moments later the OB came in, my heart sank, i was afraid, i knew this ment something was wrong, but there is no way i could have prepared myself for what was coming. i was told my son had Congenital Diaphragmatic Hernia, i didnt know what those words ment but hernia didnt sound to bad. then i was hit with the knews of what it ment, i was told abortion was a option. we met with a ob councelor and a case manager who helped set up future appointments with specialists for the baby. i was devestated. the same day we were scheduled to move into our new apartment on post, a bigger place to accomidate the new baby, only now i was told there may not be a new baby coming home. we researched and found the best doc we could in houston to deliver Zach. Zach's delivery came early, on Zach's time, as everything soon would. i was life flighted to houston in labor in a helicoptor, i had signed the proper forms saying i understood the risks of flying while in labor, that i understood the risks of already having scar tissue from previous csection, that i knew i could potentially die, i could have placental abruption and both me and Zach die. but what other choice did i have? stay at the local hospital where they know NOTHING about zach, his needed care, they didnt have proper machines to keep him alive after birth. if we stayed he died, point blank. i HAD to go. the life flight team was wonderful, and the OB department took over. by morning the contractions hadnt stopped, labor was still progressing and when the amnio was done to check zach's lung growth, maternal blood was found...showing that my placenta was indeed abrupting. the csection HAD to happen NOW. luckily Harold was with me, the boys were with his parents (a whole nother story) and on oct 26th at 805am, Zach was born at 33 weeks weighing in at 4lbs 7 ounces, 18 inches long. he was intubated immediatly and i didnt get to see him till that night.
Zach stayed on the vent to breathe for him, thru his surgery to repair the hernia at 5 days, he remained on the vent until christmas morning when he self extubated (remember i said everything is done in Zach time) he seemed to be doing well as far as i could tell. he was still needing oxygen and at the time a CPAP machine to help deliver pressure to his lungs. in january we left houston and transfered to a closer hospital to home, by this time we needed to be with the boys more, mikey was being cared for, or rather not cared for, by my inlaws and chance had come to stay with us at the ronald mcdonald house after only a week with the inlaws (they couldnt handle him) mikey would have been with us as well had it not been for school.
Zach remained in the new hospital for 3 months, i found the care at this hospital to be awful and really felt like we had to get him out inorder for him to survive! he left the hospital after his second surgery to place a gtube, this was how we fed him his formula thru a tube and syringe as he still wouldnt allow for oral feeds. after only having him home for 5 days Zach went into respitory failure and was sent back to the same hospital but the PICU this time not the NICU. the PICU was a God send, my faith was restored with the caring doctors and nurses, the atmosphere was much different than that of the NICU. Zach was on the vent again for 6 weeks before we were able to get him back on a nasal canula (portable oxygen) after tweaking some meds and getting new scripts we brought Zach back home. this time he was home for about a month, when he had a seziure, the seziure we later learned was caused by a bleed in his head, called a subdural hematoma, it was repaired and we were told it was "old" blood, unsure how the injury occured, and that he had brain atrophy from this. he was sent home on seziure medication as well. up until this brain surgery zach didnt respond to anything, didnt smile, he cried alot. he was fussy, and would just lay all day. after the surgery we saw him SMILING!! it was a miracle. he started to slowly respond to things and "wake up" in a way to his world.
Harold again left for korea this time in october, only about 6-8 weeks after getting zach home from this brain surgery. times were tough. we had nurses inside our home all the time to help, and while it was help, it was a bit "odd" as well. we had therapists coming in as well. many appointments each month to see his specialists, his cardiologist, his pulmonologist, his neurologist, his orthopedics, his GI doc, as well as all the "normal" baby things. needless to say in all of this the boys issues kinda got put on the back burner for a while. shortly after though we started ocupational therapy for mikey though and started to dig further into their issues. with new medications for mikey and chance sleep got better, moods got better, things were looking better.
Harold was gone for a year, when he came back chance was in pre-k and mikey was in 2nd grade. both boys were having problem and issues in school, mikey was hiding under his desk, chewing his clothes, unable to pay attention, complaing the room was to loud and kids were mean and on and on, he wasnt keeping up with his school work and was having an overall bad experience. chance was getting in trouble for "always bumping into kids" (remember i said he was a crasher) and for having to walk circles around you when he talked and unable to sit quietly when needed, he had verbal tics that he would do when he was nervous and it would inturupt the whole class. it was taking a toll on both me and them. it was one more stress i didnt see the point for anymore. i withdrew them both from school after the first 9 weeks and started homeschooling.
April 2007 we learned we were having our 3rd child, shortly after in May i had a small accident in a 711 and had dislocated my knee 12 times in 12 hours, i was in PAIN, on meds, that i wish i could have avoided being pregnant. i was in a knee brace with a walker for about 2 months, i had ocupational therapy myself to help me get up and moving again. in july i was out of therapy and by the 19th we had our BIG ultrasound scheduled, i couldnt wait to find out if we were having a boy or girl! i was so excited. the ultrasound tech said it was a boy, and then got very quiet a few moments later the OB came in, my heart sank, i was afraid, i knew this ment something was wrong, but there is no way i could have prepared myself for what was coming. i was told my son had Congenital Diaphragmatic Hernia, i didnt know what those words ment but hernia didnt sound to bad. then i was hit with the knews of what it ment, i was told abortion was a option. we met with a ob councelor and a case manager who helped set up future appointments with specialists for the baby. i was devestated. the same day we were scheduled to move into our new apartment on post, a bigger place to accomidate the new baby, only now i was told there may not be a new baby coming home. we researched and found the best doc we could in houston to deliver Zach. Zach's delivery came early, on Zach's time, as everything soon would. i was life flighted to houston in labor in a helicoptor, i had signed the proper forms saying i understood the risks of flying while in labor, that i understood the risks of already having scar tissue from previous csection, that i knew i could potentially die, i could have placental abruption and both me and Zach die. but what other choice did i have? stay at the local hospital where they know NOTHING about zach, his needed care, they didnt have proper machines to keep him alive after birth. if we stayed he died, point blank. i HAD to go. the life flight team was wonderful, and the OB department took over. by morning the contractions hadnt stopped, labor was still progressing and when the amnio was done to check zach's lung growth, maternal blood was found...showing that my placenta was indeed abrupting. the csection HAD to happen NOW. luckily Harold was with me, the boys were with his parents (a whole nother story) and on oct 26th at 805am, Zach was born at 33 weeks weighing in at 4lbs 7 ounces, 18 inches long. he was intubated immediatly and i didnt get to see him till that night.
Zach stayed on the vent to breathe for him, thru his surgery to repair the hernia at 5 days, he remained on the vent until christmas morning when he self extubated (remember i said everything is done in Zach time) he seemed to be doing well as far as i could tell. he was still needing oxygen and at the time a CPAP machine to help deliver pressure to his lungs. in january we left houston and transfered to a closer hospital to home, by this time we needed to be with the boys more, mikey was being cared for, or rather not cared for, by my inlaws and chance had come to stay with us at the ronald mcdonald house after only a week with the inlaws (they couldnt handle him) mikey would have been with us as well had it not been for school.
Zach remained in the new hospital for 3 months, i found the care at this hospital to be awful and really felt like we had to get him out inorder for him to survive! he left the hospital after his second surgery to place a gtube, this was how we fed him his formula thru a tube and syringe as he still wouldnt allow for oral feeds. after only having him home for 5 days Zach went into respitory failure and was sent back to the same hospital but the PICU this time not the NICU. the PICU was a God send, my faith was restored with the caring doctors and nurses, the atmosphere was much different than that of the NICU. Zach was on the vent again for 6 weeks before we were able to get him back on a nasal canula (portable oxygen) after tweaking some meds and getting new scripts we brought Zach back home. this time he was home for about a month, when he had a seziure, the seziure we later learned was caused by a bleed in his head, called a subdural hematoma, it was repaired and we were told it was "old" blood, unsure how the injury occured, and that he had brain atrophy from this. he was sent home on seziure medication as well. up until this brain surgery zach didnt respond to anything, didnt smile, he cried alot. he was fussy, and would just lay all day. after the surgery we saw him SMILING!! it was a miracle. he started to slowly respond to things and "wake up" in a way to his world.
Harold again left for korea this time in october, only about 6-8 weeks after getting zach home from this brain surgery. times were tough. we had nurses inside our home all the time to help, and while it was help, it was a bit "odd" as well. we had therapists coming in as well. many appointments each month to see his specialists, his cardiologist, his pulmonologist, his neurologist, his orthopedics, his GI doc, as well as all the "normal" baby things. needless to say in all of this the boys issues kinda got put on the back burner for a while. shortly after though we started ocupational therapy for mikey though and started to dig further into their issues. with new medications for mikey and chance sleep got better, moods got better, things were looking better.
Harold was gone for a year, when he came back chance was in pre-k and mikey was in 2nd grade. both boys were having problem and issues in school, mikey was hiding under his desk, chewing his clothes, unable to pay attention, complaing the room was to loud and kids were mean and on and on, he wasnt keeping up with his school work and was having an overall bad experience. chance was getting in trouble for "always bumping into kids" (remember i said he was a crasher) and for having to walk circles around you when he talked and unable to sit quietly when needed, he had verbal tics that he would do when he was nervous and it would inturupt the whole class. it was taking a toll on both me and them. it was one more stress i didnt see the point for anymore. i withdrew them both from school after the first 9 weeks and started homeschooling.
Labels:
2nd grade,
brain surgery,
gtube,
homeschool,
nicu,
picu,
pre-k
Wednesday, February 10, 2010
road to finding "me" part 2, finding out more on SPD
as i left off in the previous post, mikey was just quirky, he was very intellegent though, operating computers, going on websites, he knew it all! i was amazed! around the time mikey was 4 his baby brother Chance was born, Harold left 7 days after he was born for his second tour of Iraq. chance seemed to be developing ahead of schedule, holding his own bottle as soon as he had it at 4 months, i had given up breastfeeding him because he was soooo hungry all the time. once he latched on to the bottle he kept it for the entire feeding, there was no burping him or anything, he was devouring it, inhaling it. he started solids at 5 months and soon was eating EVERYTHING. the "quirks" we had had with mikey seemed to have "skipped" chance, he didnt mind getting dirty, he wouldnt make a peep if he pooed all over himself, thus unlike mikey he was HARD to potty train. he crawled sooner than mikey had, he walked sooner. he was a daredevil! Harold came back home from iraq when chance was 1 year old, and life was good. while Harold had been gone i had been battling sleep issues with mikey, he just didnt seem to "shut down" he was "always going" always moving, he could litteraly stay up from 6am to 3am and do it all over again. it was exhusting. we went to doctors, some said to try benadryl (didnt work) some said to wear him out...i tried. (mikey wouldnt play outside, because "it was hot" or "he would get sweaty" or "dirty") it was ALWAYS something with him. finally a doctor told us to go see a psychologist, she told us he had ADHD and to try melatonin. aaahhh finally the wonder pill....HE SLEPT! again life was good, Chance turned 2 and started the SAME sleep issues, this time i knew what to do, and it worked. we began seeing psychologist again, and the term "sensory processing disorder" was approached again. this time, more information...words like Autism were tossed out. Autism i thought...no he doesnt sit emotionless in a corner rocking, thats NOT my son! man was i UNIMFORMED on the subject. mikey was labled with SPD, ADHD, sleep disturbances, and possibly autism? what the heck? i was blindsided. but that didnt explain chance...chance didnt have SPD, he just didnt sleep. thru therapy we learned that chance probably did infact have SPD, but on the opposite end, he was the dirty,dare devil, loud, crashing into you kid. mikey was the quiet clean kid.
Tuesday, February 9, 2010
my road to finding "me" part 1
i dont know that i have ever sat and said this is me, im this or that. but if i had done so in the past i know that it has changed drastically since i married, since being married to a soldier, since growing up, becoming a mom to a son, becoming a mom to multiple sons, and even more so to medically fragile child and special need children to begin with.
i cant even begin to describe in words most days. in highschool (this is the only "before" i can really relate to, as i married out of highschool)i was shy, not outgoing, would be considered a conformist i guess, i never did anything to make myself stand out, never wanted the extra added attention. let me also say i still dont do anything out of my new "normal" to draw attention. i married my highschool sweetheart 6 days before he left for basic training for the army, this was pre-9-11, we werent "at war" there didnt seem to be an impending war approaching, at least not to me, i never watched the news, i knew very little to nothing about other contries, i had lived in the same house in the same small town, gone to the same school my entire life. my life was stable, it was comfortable.
after being married and after basic training we learned we were to move to Germany, a country i knew nothing about, thousands of miles away from my family, my friends, my life. i left on a hope and a prayer that this was the right decision. we lived in Germany for 3 years, 1 of those years i HATED it, i HATED everything....i was still a child, and homesick! we had our first son shortly after arriving in Germany and it started to grow on me, this was "home" i met some friends and began to enjoy life. then 9-11 happend, our world was shattered. we were "at war".
Harold quickly deployed to iraq, the first deployement was about 7 months long. i stayed in Germany, afraid to go home, afraid to leave my new home, afraid he may never come back home. little did i know this was only the begining of our deployments, our seperations. Micheal was about 15 months old when Harold came back from iraq, suddenly life was normal again. at Mikey's 18 month check up they told us his fine motor skills were lagging behind, as well as his speech, he seemed pretty "normal" to me and i was in denial i guess. they had us fill out some questionairs and they assessed him some more, i was then told he had Sensory Intergration Dysfunction, now called Sensory Processing Disorder or SPD. i had no idea what this ment. for us it ment a few months in speech and ocupational therapy in Germany and that was the end of it. i wasnt accustomed to the internet much,didnt "google" it, didnt learn anything more than what i was told that day. it really just didnt seem like that big of a deal. so what my kid couldnt stack blocks, or hold his spoon, he walked into walls alot, he fell...he was clumsey! so what if he only knew 10 words by the time he was 2, he was cute as a button and soooo smart with electronics, he could work the vcr, the tv, the dvd player and computer...he wasnt "behind".
then one day right before he turned 2 years old, just a couple weeks before we were to leave Germany and move back to Texas, Mikey had a seziure! i had NEVER before seen one, i was alone in the apartment when he had it, we had no phone, as we were about to move, i was young i didnt know what to do, i scooped him up automatically and raced down a flight of our stairs to the nearest neighbor at home, whom i hadnt met and begged to use the phone. i called Harold and he raced home, we took mikey to the ER where he had 2 more seziures. we were quickly taken to the German hospital and admited. for about a week we were in the hospital waiting to find out WHY and WHAT was going on. in the end, Ear infection was the cause...his fever spiked really fast, not really high though, just fast, and sent his body into a febrile seziure. we were sent home with antibiotics, however we had no "home" at this point, we had already cleared, or rather, Harold had already cleared the apartment and given the keys up, we were in a small 1 room hotel until our flight out of country. mikey continued to have seziures every couple of months when his fever would spike fast, each time we were told he would probably never have another, each time he did. he finally "grew" out of them when he was about 4.
since moving back to the states, we kinda put the whole Sensory processing disorder on the back burner, there was alot going on, with the move, finding a new home, getting situated and accostomed to our new life, and i thought mikey had pretty much outgrown this. "he was quirky" i would tell my mom, he would line cars up in one direction and knew if you moved even one of them, he didnt like to get dirty (worked in our favor for potty training, he trained in 1 week with cloth underware) didnt like the way certian foods felt, the grass, bubbles in his bath, water over his head...but hey, we had no one else to compare this to...he was "just quirky" he loved to watch things spin...hotwheel cars, fans, sippy cups rolling on the floor...
i cant even begin to describe in words most days. in highschool (this is the only "before" i can really relate to, as i married out of highschool)i was shy, not outgoing, would be considered a conformist i guess, i never did anything to make myself stand out, never wanted the extra added attention. let me also say i still dont do anything out of my new "normal" to draw attention. i married my highschool sweetheart 6 days before he left for basic training for the army, this was pre-9-11, we werent "at war" there didnt seem to be an impending war approaching, at least not to me, i never watched the news, i knew very little to nothing about other contries, i had lived in the same house in the same small town, gone to the same school my entire life. my life was stable, it was comfortable.
after being married and after basic training we learned we were to move to Germany, a country i knew nothing about, thousands of miles away from my family, my friends, my life. i left on a hope and a prayer that this was the right decision. we lived in Germany for 3 years, 1 of those years i HATED it, i HATED everything....i was still a child, and homesick! we had our first son shortly after arriving in Germany and it started to grow on me, this was "home" i met some friends and began to enjoy life. then 9-11 happend, our world was shattered. we were "at war".
Harold quickly deployed to iraq, the first deployement was about 7 months long. i stayed in Germany, afraid to go home, afraid to leave my new home, afraid he may never come back home. little did i know this was only the begining of our deployments, our seperations. Micheal was about 15 months old when Harold came back from iraq, suddenly life was normal again. at Mikey's 18 month check up they told us his fine motor skills were lagging behind, as well as his speech, he seemed pretty "normal" to me and i was in denial i guess. they had us fill out some questionairs and they assessed him some more, i was then told he had Sensory Intergration Dysfunction, now called Sensory Processing Disorder or SPD. i had no idea what this ment. for us it ment a few months in speech and ocupational therapy in Germany and that was the end of it. i wasnt accustomed to the internet much,didnt "google" it, didnt learn anything more than what i was told that day. it really just didnt seem like that big of a deal. so what my kid couldnt stack blocks, or hold his spoon, he walked into walls alot, he fell...he was clumsey! so what if he only knew 10 words by the time he was 2, he was cute as a button and soooo smart with electronics, he could work the vcr, the tv, the dvd player and computer...he wasnt "behind".
then one day right before he turned 2 years old, just a couple weeks before we were to leave Germany and move back to Texas, Mikey had a seziure! i had NEVER before seen one, i was alone in the apartment when he had it, we had no phone, as we were about to move, i was young i didnt know what to do, i scooped him up automatically and raced down a flight of our stairs to the nearest neighbor at home, whom i hadnt met and begged to use the phone. i called Harold and he raced home, we took mikey to the ER where he had 2 more seziures. we were quickly taken to the German hospital and admited. for about a week we were in the hospital waiting to find out WHY and WHAT was going on. in the end, Ear infection was the cause...his fever spiked really fast, not really high though, just fast, and sent his body into a febrile seziure. we were sent home with antibiotics, however we had no "home" at this point, we had already cleared, or rather, Harold had already cleared the apartment and given the keys up, we were in a small 1 room hotel until our flight out of country. mikey continued to have seziures every couple of months when his fever would spike fast, each time we were told he would probably never have another, each time he did. he finally "grew" out of them when he was about 4.
since moving back to the states, we kinda put the whole Sensory processing disorder on the back burner, there was alot going on, with the move, finding a new home, getting situated and accostomed to our new life, and i thought mikey had pretty much outgrown this. "he was quirky" i would tell my mom, he would line cars up in one direction and knew if you moved even one of them, he didnt like to get dirty (worked in our favor for potty training, he trained in 1 week with cloth underware) didnt like the way certian foods felt, the grass, bubbles in his bath, water over his head...but hey, we had no one else to compare this to...he was "just quirky" he loved to watch things spin...hotwheel cars, fans, sippy cups rolling on the floor...
Monday, February 8, 2010
abortion
i was told it was an option, many times the doctors informed me, asking and waiting as if my answer would change.... my answer remained the same. it isnt an option. its not my choice to choose not to give life to this baby inside. its not up to me to decide if he lives or dies. the odds of him making it thru the pregnancy arent good, and his prognosis if he does even worse, quality of life deminished, still i stood solid by my answer, NO.
i prayed silently, i prayed loudly, i prayed daily for a miracle, and everyday i wake up and see that miracle smiling back at me. it was never an option, never even a question in my mind. the answer was simply NO.
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