Some people don't believe in fairy godmothers and all. But after our trip to Disney World, I can tell you I BELIEVE!
Some months back we were contacted by an amazing organization called Dream Connection (www.dreamconnection.org). Since my baby girl has two rare disorders, that make her medically fragile and a failure to thrive, she in fact was chosen to be a Wish child.
During the first week of October a spectacular, wonderful and magical event took place for us. The opportunity to go to Disney World in Orlando, FL. I never thought that we would ever see the Magic Kingdom, and experience what many had told us was an amazing trip. Afterall, most who have gone will tell you how expensive it is. And since raising a child with so many needs, finding the extra cash to store away to pay for such a trip was just not in reach. Not to mention how involved it is planning a trip like that to make it exciting for them as well as you. A child with complex needs do not travel the same way as other children. There is so much more to consider when planning a trip with a handicapped child, and with a list of medications and food allergies to consider.
So Dream Connection had it all arranged for us to go six days and to stay at a resort in Kissimee called Give Kids the World Village (www.gktw.com). A special resort just for Wish children and thier families. Never in the world did I ever imagine such a wonderful place as the Village!!
We arrived on a saturday night and were greeted by friendly staff. Who also had waiting for my girl, a Mickey Mouse doll. We were exhausted, but at the same time excited in anticipation of the forthcoming week. The young man who greeted us, checked us in and promptly brought us to our villa. The entire Village was built with small villa's throughout and it had a feel of living in a fantasy land. The villa itself was a two bedroom two bath handicapped accesible home. I say home, because it had a full kitchen and laundry in it, and it felt like a home to us. Rather than a hotel room.
The next day we decided to stay in the resort and check out what was there. Since we all were all well worn out from the drive down. It was a twelve hour drive from Tennessee. We had decided not to fly since Baby Girl has seizures, we didn't know how she would handle the flight.
The Village was beautiful!! With a small train depot with a train for the families to ride. Along with miniature golf, arcade, a large model train village, and remote controlled boats. There was also the handicapped accessible playground as well. Which we ventured over to, and it was the first time in our daughter's life that she was able to play on a playground that she could easily play on. Swings that she could sit in without fear of her falling out. A jungle gym with a large wheelchair ramp so that she could access the top of the jungle gym. It was a joy seeing her enjoy something that most parents take for granted. Being able to see thier children play on a playground.
Friday, October 23, 2009
Thursday, September 17, 2009
Special Olympics....
Yesterday was the bowling competition for Special Olympics. My daughter has been an athlete now for three years. It has been amazing to say the least, to see her do things that otherwise she and others like her wouldn't be able to.
She also competes in track and field, but I have to say she really loves the bowling!! Yesterday marked her fourth bowling competition, since its only held once a year.
Like all the events, the pair up athletes according to their abilities and score ranges. But always limited six athletes to each game as they give out six awards. This is so that no athlete goes home empty handed.
Now, I have to admit that I do get a bit competitive myself. I don't know if this comes from years of showing horses or what. But the anticipation of the game excites me, and I can't help but get all excited when I see my daughter taking the lead.
Since she's in a wheelchair, she has to use a special ramp that holds the bowling ball for her. She also lacks the strength to be able to hold the ball as well. And the other athletes, although some were non-wheelchair also lacked the strength to be able to hold the ball either.
So, yesterday we get in and register, and her teacher comes over and hands us her number. Which we pinned to the front of her headrest. She's a chewer, and otherwise would have done a number on it. She's in lane 17. Which is the house number of the house I grew up in, and so 17 is a bit of a lucky number for me. There are four other kids beside her. There was six, but one got scratched from the competition due to not showing up.
After the opening ceremony of a short speech of the lady who organizes the local Special Olympics, a round of cheer and applause. Not to mention the reciting of the Special Olympics motto. The games began.
They were to play one game. In the past it was two, but now they have moved it to one since most often the kids can't make it through a second game. My girl was third in the turns and by the second frame she was already in the lead. But not by far. As each kid bowled after her until her next turn, I'd find myself almost chomping at the bit. One of the other kids we knew, and are friends with her parents. And although we cheered the other kids on when they bowled, honestly I hoped that they wouldn't score as well. To help keep my baby girl's score on top. I know some may think that's terrible, but hey what parent wouldn't want their own kid to win?
Another frame came, and it was my girl's turn again. Hubby wheeled her up to the ramp, where I placed the 16 pounder ball in hot pink on the ramp. I didn't even know they made bowling balls in hot pink? Hmmm........
She cranked a moment or two, because for the most parent the whole ordeal was overstimulating for her. But as soon as she was wheeled up to the ramp and the ball placed in front of her, she perked up, and gave one of her cute crooked smiles. As if to say, "yeah baby I'm bowling!"
She'd stick her delicate little hand out, and ever so gently push on it. As if the ball were fragile and she did not want to harm it. But it would proceed to roll forward slowly, as if it were in slow motion until finally it hit the edge of the ramp and rolled down the curved slope of it. We would wait and watch the ball make its way down the lane and hoped for that it didn't vear off to either side into the gutter.
Sometimes she got a half the pins down, most times it was nine's, and even a few gutter balls. Although minimal. It wasn't until near the last frame when she was the top score of 99, and the little girl in second bowled a 96. It was close. But finally the last frame came, and our girl bowled a strike on the first ball!! WOO HOO!! And she had another two balls, and after she bowled those she ended up with a score of 118. Which ultimately placed her in first place, and she took a gold medal.
She also competes in track and field, but I have to say she really loves the bowling!! Yesterday marked her fourth bowling competition, since its only held once a year.
Like all the events, the pair up athletes according to their abilities and score ranges. But always limited six athletes to each game as they give out six awards. This is so that no athlete goes home empty handed.
Now, I have to admit that I do get a bit competitive myself. I don't know if this comes from years of showing horses or what. But the anticipation of the game excites me, and I can't help but get all excited when I see my daughter taking the lead.
Since she's in a wheelchair, she has to use a special ramp that holds the bowling ball for her. She also lacks the strength to be able to hold the ball as well. And the other athletes, although some were non-wheelchair also lacked the strength to be able to hold the ball either.
So, yesterday we get in and register, and her teacher comes over and hands us her number. Which we pinned to the front of her headrest. She's a chewer, and otherwise would have done a number on it. She's in lane 17. Which is the house number of the house I grew up in, and so 17 is a bit of a lucky number for me. There are four other kids beside her. There was six, but one got scratched from the competition due to not showing up.
After the opening ceremony of a short speech of the lady who organizes the local Special Olympics, a round of cheer and applause. Not to mention the reciting of the Special Olympics motto. The games began.
They were to play one game. In the past it was two, but now they have moved it to one since most often the kids can't make it through a second game. My girl was third in the turns and by the second frame she was already in the lead. But not by far. As each kid bowled after her until her next turn, I'd find myself almost chomping at the bit. One of the other kids we knew, and are friends with her parents. And although we cheered the other kids on when they bowled, honestly I hoped that they wouldn't score as well. To help keep my baby girl's score on top. I know some may think that's terrible, but hey what parent wouldn't want their own kid to win?
Another frame came, and it was my girl's turn again. Hubby wheeled her up to the ramp, where I placed the 16 pounder ball in hot pink on the ramp. I didn't even know they made bowling balls in hot pink? Hmmm........
She cranked a moment or two, because for the most parent the whole ordeal was overstimulating for her. But as soon as she was wheeled up to the ramp and the ball placed in front of her, she perked up, and gave one of her cute crooked smiles. As if to say, "yeah baby I'm bowling!"
She'd stick her delicate little hand out, and ever so gently push on it. As if the ball were fragile and she did not want to harm it. But it would proceed to roll forward slowly, as if it were in slow motion until finally it hit the edge of the ramp and rolled down the curved slope of it. We would wait and watch the ball make its way down the lane and hoped for that it didn't vear off to either side into the gutter.
Sometimes she got a half the pins down, most times it was nine's, and even a few gutter balls. Although minimal. It wasn't until near the last frame when she was the top score of 99, and the little girl in second bowled a 96. It was close. But finally the last frame came, and our girl bowled a strike on the first ball!! WOO HOO!! And she had another two balls, and after she bowled those she ended up with a score of 118. Which ultimately placed her in first place, and she took a gold medal.
Saturday, August 22, 2009
A Thing On Hospital Stays....
Hospital stays are no stranger to us. Ive lost count for the number of times we've stayed in the hospital. Some just over-nighters, others longer. I think our longest stay was six days. And that was long enough for me.
But one thing is for sure, staying in the hospital is not the most comfortable venture. Your in an unfamiliar surroundings and your not accustomed to thier routine. Thier routine being the nurses and doctors routine. And believe me, their routine is as busy as ever. So, one thing I found being the mother of a veteran patient, is to make yourself useful. No, you don't have to run behind the nurse helping her empty every bedpan. But keep in mind that you or your child is not that nurse's only patient to care for. Although this has happened to us on a few occasions, where my daughter was the only patient for that nurse. And I think in one case, my daughter was the only patient on the floor!! Talk about undivided attention!! It was wonderful! But anyway, for the most part nurses are great and they try to make your stay as comfortable as possible. For they know that the hospital environment is not the choice place for either you or your child wanting to be. But for whatever the reason, you are there!
So, recently we had another hospital stay for a scope and ph probe. A scope is the device they use to view your espohgus and down with a tiny teeny camera. Usually your sedated for this, and since we've gone through this numerous times its no big deal for us. The ph probe is a wire that is inserted into your nose and down your throat and into your stomach. The wire is then attached to a handheld computer device which resembles somewhat of a walkman radio. This measures the acid in your stomach, and when it comes up and how severe.
Anyway, like most times we have to stay overnight, we end up with a double room. Although most often its just us in the double room, so it feels much like having a private room. If you've never had to stay overnight in the hospital, first off count your blessings. Second, dont' expect to get a private room. Afterall, its a hospital and not a hotel.
We settle into the room after surgery. Since you have to be sedated for the scope, its considered surgery. But again, we've been through it so many times it doesn't seem like surgery to us. My sweetie pie was wide awake when they brought her back up to the room. Which is something else I've noticed. Times when she comes back from the scope sleepy, she's pretty much somber the rest of the day. And other times she's comes back wired and she ends up being that way and pulling an all nighter without any sleep. Kids.....
Anyway, we settled into the room when a nurse brought another mom and her two year old son into the room. Apparently they were getting ready to go to surgery themselves. The mother asked the nurse, "is this the room where going to stay in?" "Yes," replied the nurse and left the room. Shortly thereafter the husband walks into the room. And the nurse comes back in. The husband askes the nurse, "is this the room where going to stay in?" "Yes," replied the nurse. To which the wife responded with, "well, we've never stayed in the hospital before and we are not use to this." So the nurse said she would have to speak to the charge nurse and see if its possible they could get them a private room. Sheesh!!
An hour goes by and "they" are moved out, and housekeeping comes in to clean that half of the room. Since technically its been occupied. Lady from housekeeping didn't look thrilled about it. She commented how she just finished cleaning this room earlier in the morning. I told her about the parents "not being use to this", you know sharing a room with someone strange. And she said, they just needed to get over it!! I couldn't have agreed more.
Several hours later, the nurse comes back in with parents who are waiting for their child to return from surgery. And sure enough, first thing out of dad's mouth, "can't we have a private room?!"
Okay, now Im wondering if its us or not. Does the sight of a wheelchair and a bed covered in seizure padding scare the crap out of parents or what? In any rate, I wish I could have said to them, exactly what the lady in housekeeping said, "they need to get over it!"
The nurse by the way, told them that the floor was getting full and couldn't spare a private room.
But one thing is for sure, staying in the hospital is not the most comfortable venture. Your in an unfamiliar surroundings and your not accustomed to thier routine. Thier routine being the nurses and doctors routine. And believe me, their routine is as busy as ever. So, one thing I found being the mother of a veteran patient, is to make yourself useful. No, you don't have to run behind the nurse helping her empty every bedpan. But keep in mind that you or your child is not that nurse's only patient to care for. Although this has happened to us on a few occasions, where my daughter was the only patient for that nurse. And I think in one case, my daughter was the only patient on the floor!! Talk about undivided attention!! It was wonderful! But anyway, for the most part nurses are great and they try to make your stay as comfortable as possible. For they know that the hospital environment is not the choice place for either you or your child wanting to be. But for whatever the reason, you are there!
So, recently we had another hospital stay for a scope and ph probe. A scope is the device they use to view your espohgus and down with a tiny teeny camera. Usually your sedated for this, and since we've gone through this numerous times its no big deal for us. The ph probe is a wire that is inserted into your nose and down your throat and into your stomach. The wire is then attached to a handheld computer device which resembles somewhat of a walkman radio. This measures the acid in your stomach, and when it comes up and how severe.
Anyway, like most times we have to stay overnight, we end up with a double room. Although most often its just us in the double room, so it feels much like having a private room. If you've never had to stay overnight in the hospital, first off count your blessings. Second, dont' expect to get a private room. Afterall, its a hospital and not a hotel.
We settle into the room after surgery. Since you have to be sedated for the scope, its considered surgery. But again, we've been through it so many times it doesn't seem like surgery to us. My sweetie pie was wide awake when they brought her back up to the room. Which is something else I've noticed. Times when she comes back from the scope sleepy, she's pretty much somber the rest of the day. And other times she's comes back wired and she ends up being that way and pulling an all nighter without any sleep. Kids.....
Anyway, we settled into the room when a nurse brought another mom and her two year old son into the room. Apparently they were getting ready to go to surgery themselves. The mother asked the nurse, "is this the room where going to stay in?" "Yes," replied the nurse and left the room. Shortly thereafter the husband walks into the room. And the nurse comes back in. The husband askes the nurse, "is this the room where going to stay in?" "Yes," replied the nurse. To which the wife responded with, "well, we've never stayed in the hospital before and we are not use to this." So the nurse said she would have to speak to the charge nurse and see if its possible they could get them a private room. Sheesh!!
An hour goes by and "they" are moved out, and housekeeping comes in to clean that half of the room. Since technically its been occupied. Lady from housekeeping didn't look thrilled about it. She commented how she just finished cleaning this room earlier in the morning. I told her about the parents "not being use to this", you know sharing a room with someone strange. And she said, they just needed to get over it!! I couldn't have agreed more.
Several hours later, the nurse comes back in with parents who are waiting for their child to return from surgery. And sure enough, first thing out of dad's mouth, "can't we have a private room?!"
Okay, now Im wondering if its us or not. Does the sight of a wheelchair and a bed covered in seizure padding scare the crap out of parents or what? In any rate, I wish I could have said to them, exactly what the lady in housekeeping said, "they need to get over it!"
The nurse by the way, told them that the floor was getting full and couldn't spare a private room.
Wednesday, August 12, 2009
Keeping a Watchful Eye........................
Raising a special needs child can be daunting at times. Not to mention overwhelming. But on top of things already needed to be taken care of, the parent of a special needs child also needs to keep a watchful eye on the world around them. For instance, yesterday at school.
I had gone in early to pick my girl up as a severe thunderstorm was rolling in. The sky began to darken, wind picked up, and as of late our area of the south has been hit with torential downpours and flooding. So I wanted to get her from school and home. Since with the winds its not unusual to get tornado watches and warnings.
I got into the school and headed down to her classroom. Upon arrival I discoverd the room in darkness, and quiet. Majority of the children, which are nine in the room, were taking naps on cots on the floor. One aide was in the rocking chair quietly rocking one of the smaller children to sleep. I asked her where baby girl was and she responded "in there." And pointing to the door leading to the storage room which contains the washer and dryer and is also access to the bathroom. I thought perhaps someone had her in there changing her diaper. Only to discover upon opening the door, my daughter in her wheelchair in the corner facing the shelves of stuff. In the dark, alone.
I asked the aide why she was in there. Her response was that the other children were trying to nap, and she was cranking. As of late, she's been very fussy. We don't know if its gi issues, hormonal since she's hit puberty or just behavior. But needless to say, I was pissed to find my child put into a small area, in darkness and worse alone!!
I stewed over it all night long. I didn't say a word to the teacher for fear of blowing my top off at her. Perhaps I should. But it would have been ugly needless to say. But I suppose for the best, I did the right thing by letting it sit and allowing myself to calm down emotionally and re-evaluate the situation so that I could speak to the teacher calmly about it.
So, today after our visit to the hospital for her upper gi and the small bowel follow through, we got home and I made a call to the teacher. I told her that I wasn't happy with what transpired, and didn't want it to happen. I told her as well, it would have only been a matter of taking her outside the room and bringing her for a walk. That would have made her happy and thus the fussying would have stopped. Putting her in a seculded room alone in the dark was not the answer.
She's had this teacher four years. Overall she's a good teacher. I like her. I know it was done without malice or intent, but obviously very very poor judgement was used.
Keep a watchful eye. I know I will be more so now than I ever was.
I had gone in early to pick my girl up as a severe thunderstorm was rolling in. The sky began to darken, wind picked up, and as of late our area of the south has been hit with torential downpours and flooding. So I wanted to get her from school and home. Since with the winds its not unusual to get tornado watches and warnings.
I got into the school and headed down to her classroom. Upon arrival I discoverd the room in darkness, and quiet. Majority of the children, which are nine in the room, were taking naps on cots on the floor. One aide was in the rocking chair quietly rocking one of the smaller children to sleep. I asked her where baby girl was and she responded "in there." And pointing to the door leading to the storage room which contains the washer and dryer and is also access to the bathroom. I thought perhaps someone had her in there changing her diaper. Only to discover upon opening the door, my daughter in her wheelchair in the corner facing the shelves of stuff. In the dark, alone.
I asked the aide why she was in there. Her response was that the other children were trying to nap, and she was cranking. As of late, she's been very fussy. We don't know if its gi issues, hormonal since she's hit puberty or just behavior. But needless to say, I was pissed to find my child put into a small area, in darkness and worse alone!!
I stewed over it all night long. I didn't say a word to the teacher for fear of blowing my top off at her. Perhaps I should. But it would have been ugly needless to say. But I suppose for the best, I did the right thing by letting it sit and allowing myself to calm down emotionally and re-evaluate the situation so that I could speak to the teacher calmly about it.
So, today after our visit to the hospital for her upper gi and the small bowel follow through, we got home and I made a call to the teacher. I told her that I wasn't happy with what transpired, and didn't want it to happen. I told her as well, it would have only been a matter of taking her outside the room and bringing her for a walk. That would have made her happy and thus the fussying would have stopped. Putting her in a seculded room alone in the dark was not the answer.
She's had this teacher four years. Overall she's a good teacher. I like her. I know it was done without malice or intent, but obviously very very poor judgement was used.
Keep a watchful eye. I know I will be more so now than I ever was.
Thursday, July 23, 2009
Our Northern Adventure...................
Last week we returned home after spending ten days traveling up north to Boston. The place we orginated from. We still have family and friends up there, and since it had been four years since moving down South. We felt it was time to make the journey.
It was great seeing everyone, or almost everyone. But I have to say that traveling with a child like my daughter sometimes can be a bit daunting.
Since the trip is about one thousand miles, just one way. It was not feasible for us to do a straight drive through. In all I think its about a nineteen hour drive. Too long of a time for her to be confined to her car seat. Given the fact that she is still in diapers. So we broke the trip into two days, with an overnight stay in Hagerstown, MD. We also made stops in route, for bathroom breaks, snacks, and of course lunch.
We had packed a cooler full of things for Baby Girl. Since she has the severe food allergies, getting her something in route is nearly difficult to do. So we had her yogurts, juice, and special formula packed in the cooler with ice. We did find out that McDonald's milkshakes, are fine for her. And so we were able to treat her to those.
The other thing we have to contend with is entertaining her. And since she's on the Autism spectrum, seeing her videos is what she loves. Even if its the same one over and over and over. Since we have a full size conversion van, which is equipped with its on video system and tv, this works out very well. However,all of her VeggieTales come on DVD only. So we obtained a case that straps on the back of the drivers seat to hold the portable DVD player, and were able to plug it into a Power Point. WOO HOO! To the person who invented portable DVD players, THANK YOU!
The other thing we packed was a queen size air bed. Since Baby Girl needs to sleep in a bed where she wont fall out. Our plan was to inflate the air bed, place it against the wall and have her sleep in the side closest to the wall. And I on the other side.
We left on a sunny and hot tuesday morning, and arrived on a chilly and dark wednesday night. Yes, up in Boston it was about 50 degrees at night. I couldn't believe it! Summer and it was 50 degrees. My blood has definitly thinned out!
We had a total of six days stay and in that time had many people to visit. On friday we went to Gloucester to visit friends there.And as soon as we got downtown, near the water we opened windows. I wanted to smell that salt air, and listen to the cawing of seagulls. Gosh it brought back so many memories. It seemed much busier and conjested than when we lived there though. Although Im sure it was just that way as well when we lived there, but I was so more accustomed to it.
On saturday we went to Nantasket Beach, and visited family there. It was good getting back to the place I grew up. And that too, had changed somewhat from what I remember. On sunday we made rounds in and around the South Shore visiting.Twice we traveled through Boston, and I have to admit that I don't know how I handled driving through Boston so many times when we lived there. Unfortunatly, Massachusetts drivers are still as crazy as they were. And don't get me started on those tolls!! Monday we stayed back up the North Shore where we were staying with my in laws. It was good to see them, and I know they enjoyed seeing us too. Tuesday we made the trip out to western Massachusetts, to visit hubby's cousin Tony. We hadn't seen them in a good six years and it was great seeing them as well. We stayed overnight there, and on wednesday morning we left for our trip back home.
That day was perhaps one of the longest, because for whatever reason, Baby Girl decided she was going to be in one of her grumpy moods. She moaned and groaned for six hours. Yes, six hours of her whining in an inclosed vehicle was enough to make one goonie. I passed the time by looking out the window and looking for critters along the highway. Hoping that when we arrived back in Hagerstown, MD for another over night stay, she would be happy. Afterall, it was a long drive and I think that for a child who is on the Autism spectrum. Such a drive is difficult for them to bear with.
Once we arrived, we all settled into the room. With no desire to leave it until the next morning. So we ordered out for pizza, and spent the evening relaxing and watching tv. Baby Girl got a nice relaxing bubble bath, and she enjoyed in immensly. To which she fell asleep sooner than later.
The next morning, thursday we packed our stuff up and loaded the van. Since we were so close to Antietam Battlefield in Sharpsburg, we decided to make the journey over there and play tourist for awhile. We are big into States War history (ya'll yankess call it Civil War) and toured a portion of the Battlefield. It was a beautiful day, but extremely hot. Which I noti ced as soon as we crossed the Mason-Dixon line, the weather improved when we got South.
We arrived home at 9:30 at night. Quite tired. But we did enjoy ourselves.
A few things I would recommend when traveling with a handicapped child:
Portable DVD player
Pack extra clothes
Make sure all medications are filled and you have enough for your trip
Pack some of thier favorite toys
Check ahead with a hotel for the accomodations. We usually get a room with a king size bed, and baby girl sleeps in the middle.
It was great seeing everyone, or almost everyone. But I have to say that traveling with a child like my daughter sometimes can be a bit daunting.
Since the trip is about one thousand miles, just one way. It was not feasible for us to do a straight drive through. In all I think its about a nineteen hour drive. Too long of a time for her to be confined to her car seat. Given the fact that she is still in diapers. So we broke the trip into two days, with an overnight stay in Hagerstown, MD. We also made stops in route, for bathroom breaks, snacks, and of course lunch.
We had packed a cooler full of things for Baby Girl. Since she has the severe food allergies, getting her something in route is nearly difficult to do. So we had her yogurts, juice, and special formula packed in the cooler with ice. We did find out that McDonald's milkshakes, are fine for her. And so we were able to treat her to those.
The other thing we have to contend with is entertaining her. And since she's on the Autism spectrum, seeing her videos is what she loves. Even if its the same one over and over and over. Since we have a full size conversion van, which is equipped with its on video system and tv, this works out very well. However,all of her VeggieTales come on DVD only. So we obtained a case that straps on the back of the drivers seat to hold the portable DVD player, and were able to plug it into a Power Point. WOO HOO! To the person who invented portable DVD players, THANK YOU!
The other thing we packed was a queen size air bed. Since Baby Girl needs to sleep in a bed where she wont fall out. Our plan was to inflate the air bed, place it against the wall and have her sleep in the side closest to the wall. And I on the other side.
We left on a sunny and hot tuesday morning, and arrived on a chilly and dark wednesday night. Yes, up in Boston it was about 50 degrees at night. I couldn't believe it! Summer and it was 50 degrees. My blood has definitly thinned out!
We had a total of six days stay and in that time had many people to visit. On friday we went to Gloucester to visit friends there.And as soon as we got downtown, near the water we opened windows. I wanted to smell that salt air, and listen to the cawing of seagulls. Gosh it brought back so many memories. It seemed much busier and conjested than when we lived there though. Although Im sure it was just that way as well when we lived there, but I was so more accustomed to it.
On saturday we went to Nantasket Beach, and visited family there. It was good getting back to the place I grew up. And that too, had changed somewhat from what I remember. On sunday we made rounds in and around the South Shore visiting.Twice we traveled through Boston, and I have to admit that I don't know how I handled driving through Boston so many times when we lived there. Unfortunatly, Massachusetts drivers are still as crazy as they were. And don't get me started on those tolls!! Monday we stayed back up the North Shore where we were staying with my in laws. It was good to see them, and I know they enjoyed seeing us too. Tuesday we made the trip out to western Massachusetts, to visit hubby's cousin Tony. We hadn't seen them in a good six years and it was great seeing them as well. We stayed overnight there, and on wednesday morning we left for our trip back home.
That day was perhaps one of the longest, because for whatever reason, Baby Girl decided she was going to be in one of her grumpy moods. She moaned and groaned for six hours. Yes, six hours of her whining in an inclosed vehicle was enough to make one goonie. I passed the time by looking out the window and looking for critters along the highway. Hoping that when we arrived back in Hagerstown, MD for another over night stay, she would be happy. Afterall, it was a long drive and I think that for a child who is on the Autism spectrum. Such a drive is difficult for them to bear with.
Once we arrived, we all settled into the room. With no desire to leave it until the next morning. So we ordered out for pizza, and spent the evening relaxing and watching tv. Baby Girl got a nice relaxing bubble bath, and she enjoyed in immensly. To which she fell asleep sooner than later.
The next morning, thursday we packed our stuff up and loaded the van. Since we were so close to Antietam Battlefield in Sharpsburg, we decided to make the journey over there and play tourist for awhile. We are big into States War history (ya'll yankess call it Civil War) and toured a portion of the Battlefield. It was a beautiful day, but extremely hot. Which I noti ced as soon as we crossed the Mason-Dixon line, the weather improved when we got South.
We arrived home at 9:30 at night. Quite tired. But we did enjoy ourselves.
A few things I would recommend when traveling with a handicapped child:
Portable DVD player
Pack extra clothes
Make sure all medications are filled and you have enough for your trip
Pack some of thier favorite toys
Check ahead with a hotel for the accomodations. We usually get a room with a king size bed, and baby girl sleeps in the middle.
Wednesday, June 24, 2009
Where Has Summer Gone?
Im still getting use to the idea of kids getting out of school in May, and going back the first week of August. After spending thirty some years North, it was always the end of June they got out and back the first week of September. So, here I am seeing most family whose still occupy Northernland, talking about school being finally out. And we here down South have already been on vacation a month.
So, this morning we brought Stephanie to speech and physical therapy. Which is at her school. Because of the pediatric rehab center being overwhelmed with patients this summer, we had to make fast pace on getting her into the school program for pt over summer. I believe I already discussed this in a past post.
Anyway, today was the last day for physical therapy until school starts the first week of August. So my goal for today was to call the rehab center and see if there was yet an opening for an evaluation for Stephanie. Since she is on the waiting list.
Shortly after we got home, sure enough its the rehab center to make an appointment for us. Perfect!! We figured out a few dates that we could do pt and ot evaluation on the same day at the same day. But no good. So we decided that since physical therapy is more important at this point than the occupational, to stick with an appointment for pt. We got one this friday. Perhaps by the time they actually get her in for physical therapy school will have already started.
So, this morning we brought Stephanie to speech and physical therapy. Which is at her school. Because of the pediatric rehab center being overwhelmed with patients this summer, we had to make fast pace on getting her into the school program for pt over summer. I believe I already discussed this in a past post.
Anyway, today was the last day for physical therapy until school starts the first week of August. So my goal for today was to call the rehab center and see if there was yet an opening for an evaluation for Stephanie. Since she is on the waiting list.
Shortly after we got home, sure enough its the rehab center to make an appointment for us. Perfect!! We figured out a few dates that we could do pt and ot evaluation on the same day at the same day. But no good. So we decided that since physical therapy is more important at this point than the occupational, to stick with an appointment for pt. We got one this friday. Perhaps by the time they actually get her in for physical therapy school will have already started.
Monday, June 22, 2009
The Birth of Stephanie.....
There is only one time that I told the story of Stephanie's birth, and that was in my book Stephanie's Story: Love Knows No Handicaps. Which can be ordered through my publisher, Publish America. So, recently my sweet Couz, who happens to be a labor and delivery nurse asked me to post about my birth. So here goes....
I wonder if parents think that birthing a child with a disability somehow the mother may have encountered anything different from what most "normal" pregnancies encounter. In some way, yes, the pregnancy is a bit different. For me however, there was nothing much different. Or at least that I could tell. Stephanie was and is my only child, so I had no other pregnancies to compare her to. But one thing I did notice was that I did not experience alot of movement. There were only a few occasions that I actually could feel her move. And once I could actually say I saw her foot stretch out and move across my belly!
I was twelve days overdue, and at that point quite large in the belly. I even had a people ask me if I wasn't carrying twins. To which I reassured them that I wasn't. I was also convinced at twelve days overdue, that I was going to give birth to a toddler!
Several days before delivery, my doctor said that they were going to give me a medication that was suppose to help dilate me and go into labor. And if I didn't go on my own, that they would induce me. It was at this point they had figured out that the baby was going to be around somewhere of eight pounds. Eight pounds! Oh my! But on the eleventh day I joyfully went to the hospital for a scheduled visit for the medication. Which my midwife called it the "magic gel." Apparently it had worked wonders for many other expectant mothers. I don't know. But this is what she told me.
I remember it was about five in the evening, and as my dear hubby sat beside me and held my hand, the midwife administered the gel and told me of the "plan." I say "plan" because it really never does go according to the "plan" nor schedule of events. Then sent me home, and told me to get a good nights sleep and to come back in the morning. For I was scheduled to be induced.
We got home and we sat for awhile trying to relax. But within several hours I had severe contractions. I can't quite remember how far apart they were, but I remember calling the doctor's office and them telling me to take a warm bath. Which I did, but I don't ever recall it soothing away the pain. So finally at eleven o'clock my dearest hubby called the doctors office, and informed them that the contractions were consistent and frequent as every five minutes.
Needless to say, we were back at the hospital just before midnight. I waddled in through the emergency rooms door with hubby as calm as a cucumber. Which really isn't anything unusual anyway. He's pretty much calm by nature.
It wasn't long before they had me in a birthing room and giving me morphine. Why? I don't know why, except that they said they wanted to make sure I got some sleep because by morning they were going to induce labor.
By eight a.m. I was awaken, and the midwife was already there. They broke my water, and I felt that within a short period of time our baby girl would have arrived. Boy, was I wrong!! By four in the afternoon I was still in labor and no baby. And I felt like I couldn't bear it anymore. That's when they brought in the doctor for the epidural. At first I didn't want one. I thought I could tough it out and do it. But I wimped out and agreed to it. Honestly, it gave me a whole new perspective of the birthing thing after the epidural kicked in!
An hour later I only had dilated about two centimeters, and the staff had reassured hubby that it would still be awhile before I delivered. So he went home for awhile to check on things there, feed the cat, get fresh clothes, snacks, and check the mail. By the time he got back at seven, I was up to 7 centimeters dilated. At this point they started having me push. And I feel like I was pushing forever!!
Finally, by 9:30 pm I still had not delivered. I was the first expectant mother in Labor and Delivery that morning and still the only mother not to deliver. The doctor and midwife at that point brought me to an operating room, and said that they would probably have to do an emergency C-section. I didn't really want to go that route, but if it needed to be, then so be it.
At this point in time, the epidural also had worn off. And just after they got me into the operating room, Stephanie decided to come out. Head and feet at the same time!! The doctor now had to push her feet back in. Then preceded to use forceps to deliver her.
Stephanie was born at 9:59 at night, weighing in at 7 pounds 15 ounces, and 20 inches long. At that point, I was too excited to sleep even though I was exhausted. Our sweet daughter had finally arrived!!
I wonder if parents think that birthing a child with a disability somehow the mother may have encountered anything different from what most "normal" pregnancies encounter. In some way, yes, the pregnancy is a bit different. For me however, there was nothing much different. Or at least that I could tell. Stephanie was and is my only child, so I had no other pregnancies to compare her to. But one thing I did notice was that I did not experience alot of movement. There were only a few occasions that I actually could feel her move. And once I could actually say I saw her foot stretch out and move across my belly!
I was twelve days overdue, and at that point quite large in the belly. I even had a people ask me if I wasn't carrying twins. To which I reassured them that I wasn't. I was also convinced at twelve days overdue, that I was going to give birth to a toddler!
Several days before delivery, my doctor said that they were going to give me a medication that was suppose to help dilate me and go into labor. And if I didn't go on my own, that they would induce me. It was at this point they had figured out that the baby was going to be around somewhere of eight pounds. Eight pounds! Oh my! But on the eleventh day I joyfully went to the hospital for a scheduled visit for the medication. Which my midwife called it the "magic gel." Apparently it had worked wonders for many other expectant mothers. I don't know. But this is what she told me.
I remember it was about five in the evening, and as my dear hubby sat beside me and held my hand, the midwife administered the gel and told me of the "plan." I say "plan" because it really never does go according to the "plan" nor schedule of events. Then sent me home, and told me to get a good nights sleep and to come back in the morning. For I was scheduled to be induced.
We got home and we sat for awhile trying to relax. But within several hours I had severe contractions. I can't quite remember how far apart they were, but I remember calling the doctor's office and them telling me to take a warm bath. Which I did, but I don't ever recall it soothing away the pain. So finally at eleven o'clock my dearest hubby called the doctors office, and informed them that the contractions were consistent and frequent as every five minutes.
Needless to say, we were back at the hospital just before midnight. I waddled in through the emergency rooms door with hubby as calm as a cucumber. Which really isn't anything unusual anyway. He's pretty much calm by nature.
It wasn't long before they had me in a birthing room and giving me morphine. Why? I don't know why, except that they said they wanted to make sure I got some sleep because by morning they were going to induce labor.
By eight a.m. I was awaken, and the midwife was already there. They broke my water, and I felt that within a short period of time our baby girl would have arrived. Boy, was I wrong!! By four in the afternoon I was still in labor and no baby. And I felt like I couldn't bear it anymore. That's when they brought in the doctor for the epidural. At first I didn't want one. I thought I could tough it out and do it. But I wimped out and agreed to it. Honestly, it gave me a whole new perspective of the birthing thing after the epidural kicked in!
An hour later I only had dilated about two centimeters, and the staff had reassured hubby that it would still be awhile before I delivered. So he went home for awhile to check on things there, feed the cat, get fresh clothes, snacks, and check the mail. By the time he got back at seven, I was up to 7 centimeters dilated. At this point they started having me push. And I feel like I was pushing forever!!
Finally, by 9:30 pm I still had not delivered. I was the first expectant mother in Labor and Delivery that morning and still the only mother not to deliver. The doctor and midwife at that point brought me to an operating room, and said that they would probably have to do an emergency C-section. I didn't really want to go that route, but if it needed to be, then so be it.
At this point in time, the epidural also had worn off. And just after they got me into the operating room, Stephanie decided to come out. Head and feet at the same time!! The doctor now had to push her feet back in. Then preceded to use forceps to deliver her.
Stephanie was born at 9:59 at night, weighing in at 7 pounds 15 ounces, and 20 inches long. At that point, I was too excited to sleep even though I was exhausted. Our sweet daughter had finally arrived!!
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