We've been having a strange winter so far. Actually, has not been much of a winter. Days were its almost sixty degrees out. Which if fine with me!! I can't stand much of the cold. But then suddenly temps will drop and we'll have real winter temps. I dislike the cold. The worst part of this winter so far is all the rain we've gotten. There is no way we can fall into a drought this summer with all this rain we've had so far this winter.
The other things I dislike about winter, is the bulkiness of clothing one must wear. Although its not as bad as it use to be when we lived up north in Massachusetts. When I remember it being to cold and snowy that you HAD to wear a very heavy coat in order to stay warm. And manuvering around inside a car made you feel like the Michelin man.
Having a child in a wheelchair can pose a few things with winter. Baby girl has a chest restraint to help her sit up more in the chair and its often constantly adjusting them to fit with her bulkey winter coat on. As well as adjusting them to fit when she doens't have the bulky coat on. And with constant temps changing back and forth, one day we'll have to wear the coat, another a light jacket. So out of ease, we've come to put her coat on backwards. That way the straps don't have to be constantly adjusted, yet she has her coat on. The only problem with that is her upper back and neck tend to be exposed.
The second thing I dislike is that the wheelchair lift on our van apparently doesn't like winter either. We have the Braun II Vangater, and although its been a great lift. We have discovered that in freezing cold temps, the lift can temporarily freeze up as well. Usually when we are in the process of lifting baby girl and her chair up and into the van. We'll drop the lift wheel her onto it and bring the lift up. After we wheel her in, and bring the lift back in suddenly it will freeze midway through coming up. So we can't even close the side doors!! ARG! Our best solution so far for this is to let the van run for almost a half hour with the heaters on full blast to warm the lift up. Apparently putting the lift down cold in the cold weather causes something in it to freeze and stick. And its those moments I am thankful, THANKFUL we never went with one of those undercarriage type lifts. Although they do save space on the inside compartment of the van, one has to worry about speed bumps and that as its lower to the ground. And someone who had one of those lifts once told me that in winter it would also always freeze as ice and snow would get into it.
Thursday, January 19, 2012
Wednesday, January 18, 2012
My Daily Updates.....1/18/2012
Well, today I am hoping to start a new chapter in our book and make a effort to write more. With daily life events, keeping up with errands and such sometimes I have to make a point of sitting for a bit and just relax.
Today we have a meeting with the school for baby girl's evaluation for special education. Hopefully things will go smoothly as I am sure they will.
Wednesday is also her occupational therapy day as school. This year her therapist is a friend of ours, Ms Sarah. Who Baby Girl really enjoys hanging out with. And she is a wonderful therapist!
This coming friday her classroom is taking their weekly field trip. Unlike her old stinky classroom and frumpy old teacher who never took the kids at all on any field trips. Baby girl's new teacher brings the kids someplace each week to experience some type of social interaction. Which I think is very important for kids with special needs. This week they are going to the movies, to either see Beauty and the Beast, or the Chipmunks! Will be fun!!
Our fundraising efforts have begun and Im not quite sure which way to go. And Ill need some help there I think.
Today we have a meeting with the school for baby girl's evaluation for special education. Hopefully things will go smoothly as I am sure they will.
Wednesday is also her occupational therapy day as school. This year her therapist is a friend of ours, Ms Sarah. Who Baby Girl really enjoys hanging out with. And she is a wonderful therapist!
This coming friday her classroom is taking their weekly field trip. Unlike her old stinky classroom and frumpy old teacher who never took the kids at all on any field trips. Baby girl's new teacher brings the kids someplace each week to experience some type of social interaction. Which I think is very important for kids with special needs. This week they are going to the movies, to either see Beauty and the Beast, or the Chipmunks! Will be fun!!
Our fundraising efforts have begun and Im not quite sure which way to go. And Ill need some help there I think.
Sunday, January 15, 2012
And the Fundraising Begins.....
Well folks, I'm here today to let you all know that we are now going to start fundraising. I don't know how we will do it. So any input would be greatly appreciated!!
First off we are trying to raise 5K to help pay for our trip to the bi-annual Phelan-McDermid Syndrome Foundation Conference. It will be held this July of 2012 in Orlando, Florida. So we are hoping to raise enough to pay for travel expenses (which include hopeful to rent a handicapped equiped van), gas, hotel expense, food expense and to help with tickets to Disney World. Since it will be in Orlando, we have to make a trip to Disney.
Our second goal is to raise another additional 5K to help pay for a new pool, with a handicapped pool lift and enough deck space to accomodate the pool lift and space to manuever our baby girl around in her wheelchair.
I understand raising 10K is alot of money to raise. But hopefully we can do this.
First off we are trying to raise 5K to help pay for our trip to the bi-annual Phelan-McDermid Syndrome Foundation Conference. It will be held this July of 2012 in Orlando, Florida. So we are hoping to raise enough to pay for travel expenses (which include hopeful to rent a handicapped equiped van), gas, hotel expense, food expense and to help with tickets to Disney World. Since it will be in Orlando, we have to make a trip to Disney.
Our second goal is to raise another additional 5K to help pay for a new pool, with a handicapped pool lift and enough deck space to accomodate the pool lift and space to manuever our baby girl around in her wheelchair.
I understand raising 10K is alot of money to raise. But hopefully we can do this.
Sunday, August 7, 2011
The Transition to Middle School....
Well, the first week of school has come and gone. My baby's transistion into middle school was fantastic!! Im giddy with joy that my baby seems happy about going to school now. Her new teacher is just fantastic!! I only wish she moved to middle school last year!!
Now, the old teacher unfortunatly is still there "teaching". I use the word "teaching" loosely because she has the title of teacher, but far does that.
This is a woman who upon telling them that our daughter would be getting a Dynavox to learn how to communicate, responded, "why? what a waste of time and money she'll never learn that!!"
What kind of a teacher brings a child to the sensory room to "learn" only to use it as an excuse to sleep on the job and take a nap in the bean bag chair. A piece of crap teacher.
Everyday that we brought our daughter to school, she fussed and cried. When we pick her up from school, she would fuss and cry all the way out to the car. Because the teacher would insist on walking out with us.
On the first day of middle school, our daughter fussed just a bit. But when we got inside and headed down to her classroom, she hardly fussed. After the first day when the new teacher brought her down the hallway, she was quiet and content. The second day of school, same thing. Quiet and happy to go to school. She sat up in her wheelchair, kicking her feet as she usually does when she's happy heading to class. After school again, she was happy and content and kicking her feet. She came home with artwork. The first time in a about three years.
We are so thrilled that her new school and her new teacher are already showing a positive impact on her.
Now, the old teacher unfortunatly is still there "teaching". I use the word "teaching" loosely because she has the title of teacher, but far does that.
This is a woman who upon telling them that our daughter would be getting a Dynavox to learn how to communicate, responded, "why? what a waste of time and money she'll never learn that!!"
What kind of a teacher brings a child to the sensory room to "learn" only to use it as an excuse to sleep on the job and take a nap in the bean bag chair. A piece of crap teacher.
Everyday that we brought our daughter to school, she fussed and cried. When we pick her up from school, she would fuss and cry all the way out to the car. Because the teacher would insist on walking out with us.
On the first day of middle school, our daughter fussed just a bit. But when we got inside and headed down to her classroom, she hardly fussed. After the first day when the new teacher brought her down the hallway, she was quiet and content. The second day of school, same thing. Quiet and happy to go to school. She sat up in her wheelchair, kicking her feet as she usually does when she's happy heading to class. After school again, she was happy and content and kicking her feet. She came home with artwork. The first time in a about three years.
We are so thrilled that her new school and her new teacher are already showing a positive impact on her.
Sunday, July 31, 2011
Oral Surgery.....
Well last week our precious baby girl went in for dental surgery. Unlike most of us, she was admitted in overnight. The reason for this was because in the past after dental work she would not drink anything at all. Especially the time she had 16 crowns placed!! Gosh golly who would want to drink after that!!
We arrived at Childrens Hospital at 5:30 am and they prepped her for surgery. Our regular dentist was there as well as the oral surgeon. The plan was to remove at least one or two second year molars and inspect her wisdom teeth. Now that she is 13 she is close to that age of having her wisdom teeth removed. Also most children who are developmentally delayed for some reason reach puberty quicker that most other kids do. Weird I know, but it happens. So at 13 and having her wisdom teeth come in wasn't really a surprise.
The oral surgeon said if they warrented removing, he was going to remove them now, rather than later.
We sat in the surgery waiting lounge patiently. Several hours later the oral surgeon came out and said everything went well. But had to remove four molars and all four wisdom. The bad side is that the poor kid was going to be miserable. The good side, is that we would have it done and over with and she wouldn't have to go through having wisdom teeth pulled again.
Since she has such a complex diet and lots of food allergies, along with certain meds, we are kind of in a catch 22 situation so to speak. Most of the foods she can eat, along with her seizure and steriod meds, they tend to do a number on the enamel of her teeth.
Not long after the oral surgeon, our dentist came out. He went in after the oral surgeon, and cleaned her teeth as well as did xrays. The hardest thing is that so much is done at once. But the good thing is that she is under the entire time and not tramatized by the whole experience, and they do everything they need to do in as much as one swoop.
She came out of recovery well, but by afternoon was in so much pain that she ended up spiking a fever of 103. Which meant going into seizure alert. Poor kid didn't finally fall back to sleep until 9:30 pm and slept unti 10:30 pm when the nurses had to wake her for her next dose of pain meds. She spent the rest of the night whimpering and not falling back to sleep until 2:30 am and slept unti 4:30 am.
By 2 in the afernoon we were discharged, and headed home. I was reluctant at first to be discharged because I wasn't quite sure if the whole high temperature ordeal was completely over with. Just call it mother's intuition.
Sure enough we were home not even ten minutes when suddenly she spiked a 103 temp again. Needless to say, we went into seizure mode, striped her down to her diaper and I called 911. Some people may think we overacted, but if she's going to have a seizure, I would rather her be in the back of an ambulance than the car on our way to the emergency room. EMT's can deal with that kind of situation much better than us if she gets critical. And believe me, she can get critical.
We got to the ER and the nurses there took her temp again and it read 103.8. Prompetly gave her tylenol to bring the fever down. Then had us go for bloodwork, xrays, and urine. The only problem with the urine is that she wouldn't give it up, so they couldn't test it. But the blood and xrays came back fine.
By 11:30 pm we were being discharged with a prescription for an antibiotic, just in case, something was brewing.
We were home by 12:30 sunday morning. Afer being awake for nearly 42 hours straight!!
Now, here is it a week later and she's back to herself again!! No more extremely chubby cheeks and more importantly no fevers!! Ah, its good to have my baby back to feeling good!!
We arrived at Childrens Hospital at 5:30 am and they prepped her for surgery. Our regular dentist was there as well as the oral surgeon. The plan was to remove at least one or two second year molars and inspect her wisdom teeth. Now that she is 13 she is close to that age of having her wisdom teeth removed. Also most children who are developmentally delayed for some reason reach puberty quicker that most other kids do. Weird I know, but it happens. So at 13 and having her wisdom teeth come in wasn't really a surprise.
The oral surgeon said if they warrented removing, he was going to remove them now, rather than later.
We sat in the surgery waiting lounge patiently. Several hours later the oral surgeon came out and said everything went well. But had to remove four molars and all four wisdom. The bad side is that the poor kid was going to be miserable. The good side, is that we would have it done and over with and she wouldn't have to go through having wisdom teeth pulled again.
Since she has such a complex diet and lots of food allergies, along with certain meds, we are kind of in a catch 22 situation so to speak. Most of the foods she can eat, along with her seizure and steriod meds, they tend to do a number on the enamel of her teeth.
Not long after the oral surgeon, our dentist came out. He went in after the oral surgeon, and cleaned her teeth as well as did xrays. The hardest thing is that so much is done at once. But the good thing is that she is under the entire time and not tramatized by the whole experience, and they do everything they need to do in as much as one swoop.
She came out of recovery well, but by afternoon was in so much pain that she ended up spiking a fever of 103. Which meant going into seizure alert. Poor kid didn't finally fall back to sleep until 9:30 pm and slept unti 10:30 pm when the nurses had to wake her for her next dose of pain meds. She spent the rest of the night whimpering and not falling back to sleep until 2:30 am and slept unti 4:30 am.
By 2 in the afernoon we were discharged, and headed home. I was reluctant at first to be discharged because I wasn't quite sure if the whole high temperature ordeal was completely over with. Just call it mother's intuition.
Sure enough we were home not even ten minutes when suddenly she spiked a 103 temp again. Needless to say, we went into seizure mode, striped her down to her diaper and I called 911. Some people may think we overacted, but if she's going to have a seizure, I would rather her be in the back of an ambulance than the car on our way to the emergency room. EMT's can deal with that kind of situation much better than us if she gets critical. And believe me, she can get critical.
We got to the ER and the nurses there took her temp again and it read 103.8. Prompetly gave her tylenol to bring the fever down. Then had us go for bloodwork, xrays, and urine. The only problem with the urine is that she wouldn't give it up, so they couldn't test it. But the blood and xrays came back fine.
By 11:30 pm we were being discharged with a prescription for an antibiotic, just in case, something was brewing.
We were home by 12:30 sunday morning. Afer being awake for nearly 42 hours straight!!
Now, here is it a week later and she's back to herself again!! No more extremely chubby cheeks and more importantly no fevers!! Ah, its good to have my baby back to feeling good!!
Saturday, July 16, 2011
A Winnie the Pooh Adventure Day....
So, next week baby girl goes in for dental surgery. It's back to school in three weeks. UGH! Summer has gone by way too fast for me.
But today, we hope to make a grand adventure! Today we will try to take baby girl to the movies to see Winnie the Pooh!! She has never been to the movie theatre and so this will be a whole new experience for her and for us. We don't know how she will react.
Our biggest concern is the sound. Since she does not take to loud sounds and the music in the theatre tend to be on the loud side.
The movie itself we know she will like since she does like Winnie the Pooh.
Now, hopefully we'll make it out this afternoon. Baby girl has been a bit under the weather. Perhaps her tooth. Which is why she's going in next week. Let's hope she feels up for her grand adventure today!
But today, we hope to make a grand adventure! Today we will try to take baby girl to the movies to see Winnie the Pooh!! She has never been to the movie theatre and so this will be a whole new experience for her and for us. We don't know how she will react.
Our biggest concern is the sound. Since she does not take to loud sounds and the music in the theatre tend to be on the loud side.
The movie itself we know she will like since she does like Winnie the Pooh.
Now, hopefully we'll make it out this afternoon. Baby girl has been a bit under the weather. Perhaps her tooth. Which is why she's going in next week. Let's hope she feels up for her grand adventure today!
Wednesday, July 6, 2011
When It All Began......
Upon the eve of my daughter's birth, her little left clavicle broke in the process of her arrival. Not only hours old, she received her first x-ray. Her first of many. That day, would be the start of a very long journey of up's and down's, of many tests, cat scans, needle pokes, and many tears. Tears of sadness as well as tears of joy.
There she laid in the little glass bassinet in the hospital room beside my bed. The soft glow of the amber ceiling light showered over her like an angel's warm embrace. She looked up and studied it. I looked upon her tiny chubby face, and smiled. My girl was here. I felt so much joy in my heart. God had truely blessed me with a precious baby girl!!
There she laid in the little glass bassinet in the hospital room beside my bed. The soft glow of the amber ceiling light showered over her like an angel's warm embrace. She looked up and studied it. I looked upon her tiny chubby face, and smiled. My girl was here. I felt so much joy in my heart. God had truely blessed me with a precious baby girl!!
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