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Friday, May 27, 2011
THe latest update
Oh man did I have the bug, Wednesday night was the worst. Everything came out even that yucky bile. Now I am luck she doesn't freak out, especially when she saw my meds come out. Well you really couldn't miss them, the white chalky stuff mixed in with ginger ale. So there was my Mammy at 3am debating if she would walk me up to the emergency room to get IV fluids and may be something to stop me from throwing up. You know I stopped throwing up well maybe because I didn't have anything left in my belly. So she kept pinching me the rest of the night to see if I was dehydrated. I guess I was fine so she had Bonnie check me out when she came in. So Bonnie said that if I threw up my meds again and didn't keep anything down we would go but to my hospital not the one up the street. So she gave me my meds very very slow and I kept them down. I even kept ginger ale down. So I guess that means I am on the mend. I was in much better form the rest of the day and I kept everything down that they gave me. Poor Mammy had a migraine well she had it from the day before so she was out of action for a bit of the afternoon. She took some meds and had a nap and when she got up she felt better but her head was still a bit sore but no more pain. I'm glad that Mammy is feeling better.
Monday, May 23, 2011
Whats been happening and Mammy is slacking big time
Well you can see Mammy hasn't put any pictures up from Maura's Communion yet so I will have to keep after her. The week passed by pretty quickly. I went in to the hospital and they hooked me up to the EEG. We were told it would be for 24 hours but then when we got there they were thinking about keeping me for a few days. What else is new that always seems to happen. Mammy showed Susan the video that Eoghan took of my bad seizure and she said we would have to show the doctor in the morning. Of course I didn't have anything big but what else is new. I never seem to have a good one for them while I am hooked up. So when the doc came in she said that I could go home and Mammy showed her the video. Well she wants a copy of it to show to the big boys to see if they will give me a VNS to help with my seizures. We got to go home in less that 24 hours.
We get home and go back to our normal schedule. On Friday night my pulse ox machine dies on us so Mammy stayed up all night checking me with the small pulse ox. We cannot leave that one on as it can fall off easy and it doesn't beep when my rates change.Got a brand new pulse ox machine with a carry bag so now I am styling.
I started to throw up again well what else is new right? Mammy was wrecked so Daddy stayed up and had to clean up my throw up heheehe, he didn't like that.
I am back to my old tricks again on Sunday night my heart rate was low a few times then on Monday I had to be put on Oxygen.I also had 2 tonic clonic seizures and I had to get an up the butt so when my PT came I wasn't in any shape to do any standing so he just did some stretching with me.Monday night I threw up and I had the nasal cannual in my nose so Mammy cleaned me up and the next thing the alarm is going off that my O2 was low and Mammy turned it up and the alarm was still going off. You know that what the problem was there was throw up in the nasal cannual so I wasn't getting the O2. Yeah when I throw up it comes out my nose every time its yucky.
The tempature has gone up to the high 70's and my body is not liking it at all. I am like a wet noodle and I feel crappy and yup I am still throwing up. So we will see when I have the surgery on my tummy if I will still throw up.
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Sunday, May 15, 2011
Whats been happening
I'm back, blogger was having problems and we couldn't write here for a few days.I was having a great session with my Speech therapist the other day and of course I ended it with a seizure that didn't want to stop so they gave me an up the butt and it stopped that sucker.
Saturday was a busy day as it was Maura's First Communion and there was a small party after in the house. Mammy will put up pictures later.
Sunday oh what a Sunday. Mammy went down to NYU to an Epilepsy Conference so Bonnie came in to watch me. Oh boy did I scare the puttins out of them. yup you guessed I had a BIG seizure and they gave me an up the butt, but it took a while for it to stop. They almost called for Emergency services to come and get me. So afterwards they were really watching every little thing I did. Eoghan did a great job he video taped me having the seizure and Mammy was able to show the doctors.
I went in to get a new reading of my brain waves. At first it was only for 24 hours but when I got in they said I would be in for 2-3 days. After one night and then seeing the video they let me out. Now they are taking the information to the Big Boys that do the brain surgery to see if they would give me a VNS. So we will have to wait and see what happens.
Its horrible here all its done is rain, rain ,rain and now its cold too.
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Tuesday, May 10, 2011
The Blue Rose
Having four visiting family members, my wife was very busy, so I offered to go to the store for her to get some needed items, which included light bulbs, paper towels, trash bags, detergent and Clorox. So off I went.
I scurried around the store, gathered up my goodies and headed for the checkout counter, only to be blocked in the narrow aisle by a young man who appeared to be about sixteen-years-old. I wasn't in a hurry, so I patiently waited for the boy to realize that I was there. This was when he waved his hands excitedly in the air and declared in a loud voice, "Mommy, I'm over here."
It was obvious now, he was mentally challenged and also startled as he turned and saw me standing so close to him, waiting to squeeze by. His eyes widened and surprise exploded on his face as I said, "Hey Buddy, what's your name?"
"My name is Denny and I'm shopping with my mother," he responded proudly.
"Wow," I said, "that's a cool name; I wish my name was Denny, but my name is Steve."
"Steve, like Stevarino?" he asked. "Yes," I answered. "How old are you Denny?"
"How old am I now, Mommy?" he asked his mother as she slowly came over from the next aisle.
"You're fifteen-years-old Denny; now be a good boy and let the man pass by."
I acknowledged her and continued to talk to Denny for several more minutes about summer, bicycles and school. I watched his brown eyes dance with excitement, because he was the center of someone's attention. He then abruptly turned and headed toward the toy section.
Denny's mom had a puzzled look on her face and thanked me for taking the time to talk with her son. She told me that most people wouldn't even look at him, much less talk to him.
I told her that it was my pleasure and then I said something I have no idea where it came from, other than by the prompting of the Holy Spirit. I told her that there are plenty of red, yellow, and pink roses in God's Garden; however, "Blue Roses" are very rare and should be appreciated for their beauty and distinctiveness. You see, Denny is a Blue Rose and if someone doesn't stop and smell that rose with their heart and touch that rose with their kindness, then they've missed a blessing from God.
She was silent for a second, then with a tear in her eye she asked, "Who are you?"
Without thinking I said, "Oh, I'm probably just a dandelion, but I sure love living in God's garden."
She reached out, squeezed my hand and said, "God bless you!" and then I had tears in my eyes.
May I suggest, the next time you see a BLUE ROSE, don't turn your head and walk off. Take the time to smile and say Hello. Why? Because, by the grace of GOD, this mother or father could be you. This could be your child, grandchild, niece or nephew. What a difference a moment can mean to that person or their family.
From an old dandelion! Live simply. Love generously. Care deeply. Speak kindly. Leave the rest to God.
"People will forget what you said, People will forget what you did, but people will never forget how you made them feel!" ANON.
If this story blesses you today Please consider sharing it with others.
I scurried around the store, gathered up my goodies and headed for the checkout counter, only to be blocked in the narrow aisle by a young man who appeared to be about sixteen-years-old. I wasn't in a hurry, so I patiently waited for the boy to realize that I was there. This was when he waved his hands excitedly in the air and declared in a loud voice, "Mommy, I'm over here."
It was obvious now, he was mentally challenged and also startled as he turned and saw me standing so close to him, waiting to squeeze by. His eyes widened and surprise exploded on his face as I said, "Hey Buddy, what's your name?"
"My name is Denny and I'm shopping with my mother," he responded proudly.
"Wow," I said, "that's a cool name; I wish my name was Denny, but my name is Steve."
"Steve, like Stevarino?" he asked. "Yes," I answered. "How old are you Denny?"
"How old am I now, Mommy?" he asked his mother as she slowly came over from the next aisle.
"You're fifteen-years-old Denny; now be a good boy and let the man pass by."
I acknowledged her and continued to talk to Denny for several more minutes about summer, bicycles and school. I watched his brown eyes dance with excitement, because he was the center of someone's attention. He then abruptly turned and headed toward the toy section.
Denny's mom had a puzzled look on her face and thanked me for taking the time to talk with her son. She told me that most people wouldn't even look at him, much less talk to him.
I told her that it was my pleasure and then I said something I have no idea where it came from, other than by the prompting of the Holy Spirit. I told her that there are plenty of red, yellow, and pink roses in God's Garden; however, "Blue Roses" are very rare and should be appreciated for their beauty and distinctiveness. You see, Denny is a Blue Rose and if someone doesn't stop and smell that rose with their heart and touch that rose with their kindness, then they've missed a blessing from God.
She was silent for a second, then with a tear in her eye she asked, "Who are you?"
Without thinking I said, "Oh, I'm probably just a dandelion, but I sure love living in God's garden."
She reached out, squeezed my hand and said, "God bless you!" and then I had tears in my eyes.
May I suggest, the next time you see a BLUE ROSE, don't turn your head and walk off. Take the time to smile and say Hello. Why? Because, by the grace of GOD, this mother or father could be you. This could be your child, grandchild, niece or nephew. What a difference a moment can mean to that person or their family.
From an old dandelion! Live simply. Love generously. Care deeply. Speak kindly. Leave the rest to God.
"People will forget what you said, People will forget what you did, but people will never forget how you made them feel!" ANON.
If this story blesses you today Please consider sharing it with others.
Monday Monday
Well today started out great for me. I got washed and Bonnie gave me a massage. I was really having fun chatting away for my self. Then my PT came and he was making me do things I didn't really want to do but Mammy said I had to behave and just do it. You know I did feel better afterwards. I am off my pain meds and doing really good. I have great movement in my legs and I am starting to kick again. I am not looking forward to next week as my PT said I have to go back in the stander. Its OK because during the day I will just cry and Bonnie will take me out (hehehe). Now Mammy is not as easy she will make me do my time in it wheather I like it or not.
I had been doing great with my feeds and I was on one when the Teacher came. Then the cough came and Maura told my teacher to watch out I was probably about to throw up and yes I did. The milk came flying out of my mouth and my nose. Yes, yes I always have throw up come out my nose. My teacher was reading a book about a butterfly when it happened. Thankfully I didn't get any on her or her book just got it all over myself and my man chair. But I was cranky after that happened so I went to sleep.
Oh yeah, later on when I woke up I started pulling on my dressing on my right leg so Mammy put me on my right side so I wouldn't be pulling at it. But guess what I did next? Yup I started to pull on the one on my left leg. So she put shorts back on me so I wouldn't be pulling at them. Oh well lets see what happens tomorrow.
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Sunday, May 8, 2011
Saturday and Sunday
Well I started to throw up again so I really don't know whats going on with me. Mammy was thinking that maybe it was because he made my pump give me my milk faster so she turned it down again. Thankfully I haven't had any big seizures just a few small ones the usual ones that we don't pay too much mind to.
Today is Mothers Day so Happy Mothers Day to all the Mammies out there. I threw up again today but it wasn't too bad I am in fine form other wise. My legs don't really hurt today so Mammy is taking me off the pain med and just going to give me some Panadol instead. She wants to see if it because of the pain med I am throwing up . With me you never know what sets me off.
Mammy has so much laundry to do well with me throwing up all over and I leaked out of my nappy and wet the couch so she will have to do that tomorrow along with all the other laundry.
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Happy Mother's Day
Happy Mother's Day to all the Mammies out there. To the Special Mammies you do a great job so an extra Happy to you all
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19 Reasons Why Mothers of Special Needs Children Rock...
1. Because doctors have told us the worst, and we've refused to believe them. TAKE THAT, nay-saying doctors of the world.
2. Because we’ve discovered patience we never knew we had.
3. Because we... are willing to do something 10 times, 100 t.........imes, 1,000 times if that’s what it takes for our kids to learn something new.
4. Because we never imagined that “doing it all” would mean doing this much. But we do it all, and then some.
5. Because we have bad days and breakdowns and bawl-fests, and then we pick ourselves up and keep right on going.
6. Because we gracefully handle the stares, the comments, the rude remarks. Well, mostly gracefully.
7. Because we manage to get ourselves together and get out the door looking pretty damn good. Heck, we even make sweatpants look good.
8. Because we are strong. Man, are we strong. Who knew we could be this strong?
9. Because we aren’t just moms, wives, cooks, cleaners, chauffeurs, women who work. We are moms, wives, cooks, cleaners, chauffeurs, women who work, physical therapists, speech therapists, occupational therapists, teachers, researchers, nurses, coaches, and cheerleaders. Whew.
10. Because we work overtime every single day.
11. Because we also worry overtime, but we work it through. Or we eat chocolate or Pirate's Booty or gourmet cheese, which aren't reimbursable by insurance as mental-health necessities but should be.
12. Because we are more selfless than other moms. Our kids need us more.
13. Because we give our kids with special needs endless love, and then we still have so much love left for our other kids, our husbands, our family. And our hairstylist, of course.
14. Because we inspire one another in this crazy blogosphere every single day.
15. Because we understand our kids better than anyone else—even if they can’t talk, even if they can’t gesture, even if they can't look us in the eye. We know. We just know.
16. Because we never stop pushing for our kids.
17. Because we never stop hoping for them, either.
18. Because just when it seems like things are going OK, they're suddenly not OK, but we deal. Somehow, we always deal, even when it seems like our heads or hearts might explode.
19. Because when we look at our kids we just see great kids. Not "kids with cerebral palsy/autism/Down syndrome/developmental delays/whatever label."
2. Because we’ve discovered patience we never knew we had.
3. Because we... are willing to do something 10 times, 100 t.........imes, 1,000 times if that’s what it takes for our kids to learn something new.
4. Because we never imagined that “doing it all” would mean doing this much. But we do it all, and then some.
5. Because we have bad days and breakdowns and bawl-fests, and then we pick ourselves up and keep right on going.
6. Because we gracefully handle the stares, the comments, the rude remarks. Well, mostly gracefully.
7. Because we manage to get ourselves together and get out the door looking pretty damn good. Heck, we even make sweatpants look good.
8. Because we are strong. Man, are we strong. Who knew we could be this strong?
9. Because we aren’t just moms, wives, cooks, cleaners, chauffeurs, women who work. We are moms, wives, cooks, cleaners, chauffeurs, women who work, physical therapists, speech therapists, occupational therapists, teachers, researchers, nurses, coaches, and cheerleaders. Whew.
10. Because we work overtime every single day.
11. Because we also worry overtime, but we work it through. Or we eat chocolate or Pirate's Booty or gourmet cheese, which aren't reimbursable by insurance as mental-health necessities but should be.
12. Because we are more selfless than other moms. Our kids need us more.
13. Because we give our kids with special needs endless love, and then we still have so much love left for our other kids, our husbands, our family. And our hairstylist, of course.
14. Because we inspire one another in this crazy blogosphere every single day.
15. Because we understand our kids better than anyone else—even if they can’t talk, even if they can’t gesture, even if they can't look us in the eye. We know. We just know.
16. Because we never stop pushing for our kids.
17. Because we never stop hoping for them, either.
18. Because just when it seems like things are going OK, they're suddenly not OK, but we deal. Somehow, we always deal, even when it seems like our heads or hearts might explode.
19. Because when we look at our kids we just see great kids. Not "kids with cerebral palsy/autism/Down syndrome/developmental delays/whatever label."
Thanks to Ollie's Mammy for putting it on her blog
Saturday, May 7, 2011
Guess what I did ????????????
Yeah I did stop throwing up and I even had some of my formula and kept it down. But no thats not what I am talking about. Mammy hasn't been putting on pants/shorts/jammie bottoms on me. She does this so she won't be hurting my legs every time she has to change my nappy. But she told me "you can scream all you like you are getting trousers on you now laddie". Yup I pulled the plaster off that they put on my leg to cover my stitches hehehehe. Don't worry she covered it back up again. I couldn't help it, it was itchy. I guess its healing up fast.
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What's been going on with me
Well last week I started throwing up again. I hadn't done that in a good while and I had gotten my weight up to almost 40lbs. Well now I am just 34.8lbs and that's not good being that I am 6 years old and underweight.
Went to the peds on Monday and got my medical clearance as I had stopped throwing up and it only took 4 hours as it was very busy. Tuesday morning we were on the road going down to the hospital to get my hardware out of my legs. Mammy brought me back to the OR and held the mask until I went to sleep and then left so the docs could do their job. Almost 3 hours later Mammy is back with me again and then they move me to a room on 4 tower. They had to put the IV in my right hand and I was not happy I couldn't suck my thumb. So I did what I usually do I just slept and kept my eyes closed the whole time I was there. Mammy also had my ipod with my music so I was a bit more comfy. They were giving me pain meds so I was feeling good. Wednesday morning we got the OK to go home. So it was about 11.30am when we were getting out of the place. We had to make a pit stop to get a script for some of my up the butt emergency meds. We got that and we were on our way home. It was funny when they asked was someone taking me home and Mammy said "yes they are down stairs" well we had to go across the street and we took the bus home.
On Thursday since we had gotten clearance for my therapies to resume my PT came in to work with me. Mammy was happy as I was keeping my legs in a froggy position and wouldn't straighten them out for her but Sy my PT got me to straighten them out and you know I feel much better now. I started throwing up again on Thursday afternoon and I kept throwing up most of the night. So that wasn't good. Friday I was even throwing up my meds and then the seizures started. So I got an up the butt to stop them and it even stopped me throwing up. I was flying high on pain meds and diastat. I have lost even more weight. They were talking about taking me to the hospital for some iv fluids but I started to keep the ginger ale down.
So now lets see what the weekend brings. Well at least Mammy got some sleep last night Daddy stayed up with me.
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Friday, May 6, 2011
Mammy has really been slacking
You must think I have forgotten about my blog but its Mammy's fault you haven't been getting updates. Well may be it is my fault as I Mammy has not been getting much sleep lately. So she has promised that she will update it tomorrow after she has gotten some shut eye.
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