...so nice of you to finally show up.
Friday, July 23, 2010
Bye Bye Pump...
...and the words from the great (or not so great) Donald Trump "You're Fired" *pretend to do the cobra hand thingy he does". I have officially, as of today, completely weaned off of my zofran pump *doing the happy dance*. I am sooo excited to be done with that damn thing, you have no idea. I was so sick of injecting myself EVERY DAY...my skin started to breakdown and I had to change the site every morning. I hated how I was woke up at odd hours in the night to refill a syringe, replace a battery or check on dosing. I disliked not being able to walk around without something on my shoulder, in my leg and always on my body. Now I am free. I have no cords holding me down. I don't have to be careful when pulling up my jeans for fear of ripping out my IV. I can have spontaneous love making with my husband and that is a wonderful thing. Today is a milestone, an achievement that I wasn't sure I would hit by now...but thanks to my nurses, I was able to slowly dose down, and here we are. No more pump...what a wonderful thing.
Wednesday, July 21, 2010
No one can see autism....
I found this on another website, had to post it here....very good description of how Autism functions and how it is viewed by the general public.
***How an Autistic Child Thinks:
Nobody can see my disability. I look just like every other kid-attractive, walking, making sound's. They can't see how my neurons are scrambled in my brain. They can't see the misconnections between the left and right brain. Nobody can see I have autism.
Nobody can see that my body is sick. No one can see that my stomach is in knots from my digestive system not working. No one can that my body and mind are starving because my cells don't make the right enzymes to digest food. No one see that I suffer from low blood sugar because I can't properly metabolize nourishment.
No one can see that my body is attacking its own nerve cells from auto-immune dysfunction. No one can see that mercury lead and arsenic cannot be excreted from my body, so it keeps building up in my brain. No one understands that my body cannot tolerate normal enjoyments for children, like bright, vivid colors and loud noises. I desperately want to be a kid and enjoy these things, but my body just won't let me.
But everyone can see how inappropriate my behavior can be when I am out in public. Everyone can see how immature I can be compared to other kids my age. Everyone sees the 2-year old tantrums when things have been too overwhelming for me. Everyone sees my frustration from trying to cope.
Everyone sees my screaming and fighting. Everyone just assumes I'm being bad, not that my body hurts, my eyes are in pain from colors, my ears ring with loud noises not heard by others.
Everyone sees my tantrums when I don't get my way. No one sees that I can't explain my fear when I think I'm not being understood. Everyone may see my screams when my mom takes something away from me. No one can see that having something of comfort can keep my fears under control for me, and taking it away makes my nerves explodes in anxiety.
No one understands how hard I have to work to keep my behaviors from reacting to the chemical imbalances in my body that makes me feel horrible. No one can see that, no matter how hard I try, sometimes I cannot control it. No one can see the shame I feel after I've had a meltdown from my body's problems.
What they don't see I am a person. I have feelings and want to be loved and accepted like everyone else. What they don't see is that, when they look at me like I need a good spanking; I understand that I'm not capable of controlling my body.
What they don't see is that I scream because I don't know how to say "HELP ME"
What they don't see is that I hear every ugly word they say, but for the life of me, I can't make my mouth say what I'm feeling. But they don't see that as a disability. They say I am unmanageable. They say I am a problem.
But I am not a problem. I HAVE AUTISM. My mom has taken me to more doctors and specialist than you can ever imagine. She's read more books and done more research on my disease than parents would ever want. She has tried special diet, supplements, drugs and various metabolic therapies. She has PRAYED for GUIDANCE and asked for discernment on how to help my body. And behaviors, OH YES, has she tried everything to help my behavior.
Stop telling her all I need is a spanking. If spanking would stop all this, my mom would gladly exchange my disability for a spanking. She knows better than all of you what I need to help me, and what we both need is your understanding, not ignorance.
I just want to be accepted and understood. No blamed and ashamed, I want to be appreciated for my gifts. I do have some if you look more closely. I want to be cared for as a person. I want you to care, even when I act like I don't.
I want to be respected, just like you do. I want you to respect my mom and dad for all the hard work they have done to help me try to lead a normal a life as possible. I want you to respect my family and all the struggles we have to endure because of our love for each other.
I want to be LOVED like any other child. And need you to role model respectful behavior for me so I can be respectful too. I want you to love me just like God would.
***How an Autistic Child Thinks:
Nobody can see my disability. I look just like every other kid-attractive, walking, making sound's. They can't see how my neurons are scrambled in my brain. They can't see the misconnections between the left and right brain. Nobody can see I have autism.
Nobody can see that my body is sick. No one can see that my stomach is in knots from my digestive system not working. No one can that my body and mind are starving because my cells don't make the right enzymes to digest food. No one see that I suffer from low blood sugar because I can't properly metabolize nourishment.
No one can see that my body is attacking its own nerve cells from auto-immune dysfunction. No one can see that mercury lead and arsenic cannot be excreted from my body, so it keeps building up in my brain. No one understands that my body cannot tolerate normal enjoyments for children, like bright, vivid colors and loud noises. I desperately want to be a kid and enjoy these things, but my body just won't let me.
But everyone can see how inappropriate my behavior can be when I am out in public. Everyone can see how immature I can be compared to other kids my age. Everyone sees the 2-year old tantrums when things have been too overwhelming for me. Everyone sees my frustration from trying to cope.
Everyone sees my screaming and fighting. Everyone just assumes I'm being bad, not that my body hurts, my eyes are in pain from colors, my ears ring with loud noises not heard by others.
Everyone sees my tantrums when I don't get my way. No one sees that I can't explain my fear when I think I'm not being understood. Everyone may see my screams when my mom takes something away from me. No one can see that having something of comfort can keep my fears under control for me, and taking it away makes my nerves explodes in anxiety.
No one understands how hard I have to work to keep my behaviors from reacting to the chemical imbalances in my body that makes me feel horrible. No one can see that, no matter how hard I try, sometimes I cannot control it. No one can see the shame I feel after I've had a meltdown from my body's problems.
What they don't see I am a person. I have feelings and want to be loved and accepted like everyone else. What they don't see is that, when they look at me like I need a good spanking; I understand that I'm not capable of controlling my body.
What they don't see is that I scream because I don't know how to say "HELP ME"
What they don't see is that I hear every ugly word they say, but for the life of me, I can't make my mouth say what I'm feeling. But they don't see that as a disability. They say I am unmanageable. They say I am a problem.
But I am not a problem. I HAVE AUTISM. My mom has taken me to more doctors and specialist than you can ever imagine. She's read more books and done more research on my disease than parents would ever want. She has tried special diet, supplements, drugs and various metabolic therapies. She has PRAYED for GUIDANCE and asked for discernment on how to help my body. And behaviors, OH YES, has she tried everything to help my behavior.
Stop telling her all I need is a spanking. If spanking would stop all this, my mom would gladly exchange my disability for a spanking. She knows better than all of you what I need to help me, and what we both need is your understanding, not ignorance.
I just want to be accepted and understood. No blamed and ashamed, I want to be appreciated for my gifts. I do have some if you look more closely. I want to be cared for as a person. I want you to care, even when I act like I don't.
I want to be respected, just like you do. I want you to respect my mom and dad for all the hard work they have done to help me try to lead a normal a life as possible. I want you to respect my family and all the struggles we have to endure because of our love for each other.
I want to be LOVED like any other child. And need you to role model respectful behavior for me so I can be respectful too. I want you to love me just like God would.
Monday, July 19, 2010
22 is a great number.
Soooo much yummy goodness in the number 22....it was the day that I was born, is the estimated due date of baby #3, is my lucky number and is where I am at in this pregnancy. 22 weeks already! It is really moving by fast. More good news...today, I dosed down for the 2nd time since starting the Zofran. This is a HUGE step towards weaning completely off the medication and having NO MORE PUMP!!! I get very excited at the idea of that. I have my midwife appointment on the 28th, and they will be doing another ultrasound to check weight/fluid/movement of baby. I am excited to get another sneek peek in there. I took some really nice belly pictures, but they were inadvertantly deleted from my memory card *EEK* so, hopefully this week, we can snap a few more. So far in this pregnancy I have realized a few things:
1-Pregnancies over 30 are much harder on your body then when you are a young gal
2-My ass thinks it's pregnant too
3-"The rules" of pregnancy kinda go out the window when you are chasing around 2 children..."don't lift anything heavier than 50 lbs...." yeah right.
4-People assume you are just fat, because the idea of you being pregnant again just seems crazy
5- Keeping track of how far along you are takes skill. I remember when I was pregnant with my first two, every week I updated a blog, I had a pregnancy ticker, I took pictures....now, when someone asks me how far along I am...I have to stop and count the weeks, so...I just say "5ish months".
6-My skinny jeans have officially kicked me out.
7-Decorating a nursery is a waste of time. In my experience, the baby sleeps in our room most of the time, so why bother, save money for more important things...like a good carseat.
8-I am so much more relaxed this time around. I have learned that pregnancy is to be enjoyed, and cherished, because honestly, we really don't know when it may or may not happen again. It's such a wonderful blessing, and I am thankful to be living it again.
1-Pregnancies over 30 are much harder on your body then when you are a young gal
2-My ass thinks it's pregnant too
3-"The rules" of pregnancy kinda go out the window when you are chasing around 2 children..."don't lift anything heavier than 50 lbs...." yeah right.
4-People assume you are just fat, because the idea of you being pregnant again just seems crazy
5- Keeping track of how far along you are takes skill. I remember when I was pregnant with my first two, every week I updated a blog, I had a pregnancy ticker, I took pictures....now, when someone asks me how far along I am...I have to stop and count the weeks, so...I just say "5ish months".
6-My skinny jeans have officially kicked me out.
7-Decorating a nursery is a waste of time. In my experience, the baby sleeps in our room most of the time, so why bother, save money for more important things...like a good carseat.
8-I am so much more relaxed this time around. I have learned that pregnancy is to be enjoyed, and cherished, because honestly, we really don't know when it may or may not happen again. It's such a wonderful blessing, and I am thankful to be living it again.
Monday, July 5, 2010
Halfway there....
Time really has flown by. As of today, I am 20 weeks and halfway through this pregnancy. I can't believe that I will be a mama again in November. We are really excited about the new baby, and can't wait to learn more about her/him. I have another U/S scheduled the end of this month to monitor baby's weight gain, etc. I will share that with you when we have it. *I do have belly pictures, just need to upload them...when I have a chance, I will update that as well!*
Thursday, July 1, 2010
Midwife appointment today
We had our checkup today. The last appointment ran over, so we only got to do the U/S but no meet with our M/W. Here are some of the stats from my appointment.
I have gained a total of 5 lbs in this pregnancy so far....lost 5 since my last appointment :( Baby is right on track for their birthday of between 11-22 and 11-28. The heart rate was in the 160's again today, and was very loud. Baby was super active which was fun to watch....I am getting SUPER excited about the new birthing rooms that are opening the end of summer at Phoenix Baptist. They will have birthing tubs, no restrictions, real beds, and the total care of midwives. I am also excited because as long as nothing is wrong with baby (ie. meconium, low birth weight, low apgar, or gbs+) we can go home in 6 hours after baby is born *cue the angels singing* they also do not care if both siblings are present, regardless of time of year.
Baby is REALLY consistent on their wake/sleep cycle already. Tristan was this way too, and it seemed to transfer over into his real life after he was born. Baby is always awake at 930PM, for around 10 mins, then drifts off to sleep. We time it, and sure thing...there it is "thump, bump...thump, thump." I love that feeling by the way.
My legs are starting to run out of spots for my iv...and that sucks. Today my midwives discussed whether I need to move it to my tummy *scared face* OUCH. Hopefully the infusion sites will heal up and I can continue to put it in the fatty part there...because, let me tell you..the thought of peircing a needle in my belly really freaks.me.out.
We have another ultrasound scheduled on 7/28 since I continue to lose weight and have horrible vomitting episodes. I will update you then on how it all goes.
I have gained a total of 5 lbs in this pregnancy so far....lost 5 since my last appointment :( Baby is right on track for their birthday of between 11-22 and 11-28. The heart rate was in the 160's again today, and was very loud. Baby was super active which was fun to watch....I am getting SUPER excited about the new birthing rooms that are opening the end of summer at Phoenix Baptist. They will have birthing tubs, no restrictions, real beds, and the total care of midwives. I am also excited because as long as nothing is wrong with baby (ie. meconium, low birth weight, low apgar, or gbs+) we can go home in 6 hours after baby is born *cue the angels singing* they also do not care if both siblings are present, regardless of time of year.
Baby is REALLY consistent on their wake/sleep cycle already. Tristan was this way too, and it seemed to transfer over into his real life after he was born. Baby is always awake at 930PM, for around 10 mins, then drifts off to sleep. We time it, and sure thing...there it is "thump, bump...thump, thump." I love that feeling by the way.
My legs are starting to run out of spots for my iv...and that sucks. Today my midwives discussed whether I need to move it to my tummy *scared face* OUCH. Hopefully the infusion sites will heal up and I can continue to put it in the fatty part there...because, let me tell you..the thought of peircing a needle in my belly really freaks.me.out.
We have another ultrasound scheduled on 7/28 since I continue to lose weight and have horrible vomitting episodes. I will update you then on how it all goes.
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