Hello all!
I have added a new page titled, "Ben's Story". So if you were ever curious about how he was diagnosed or why, hopefully that'll answer some questions! If you have any others feel free to ask!
Saturday, June 23, 2012
Sunday, June 10, 2012
Welcome to Oklahoma City, Easley family.
Ben met his new SoonerStart team this past Thursday. They loved Ben and he seemed to do okay with them; but we'll officially start our sessions next week.
So far, everything is okay. Not great yet, but okay. We are still working out a new schedule that works for us here.
I think he's doing better with the change than I am.
Change is good.
Change is good.
Change SUCKS.
Sorry for the negativity there, we've had a really difficult couple of weeks. We moved in on the 25th. On the 29th, our cars received almost $13k worth of hail damage.
Also, our neighbors 2 floors up don't require sleep on the weekends. It is past 1:00 in the morning and they are still going strong. Curse this awesome hearing of mine! I'm never going to get a goodnights sleep again on Fridays/Saturdays.
Welcome to Oklahoma City, Easley family.
P.S. Ben is sleeping wonderfully. He won't sleep without some kind of noise, so it seems to be working for him.
So far, everything is okay. Not great yet, but okay. We are still working out a new schedule that works for us here.
I think he's doing better with the change than I am.
Change is good.
Change is good.
Change SUCKS.
Sorry for the negativity there, we've had a really difficult couple of weeks. We moved in on the 25th. On the 29th, our cars received almost $13k worth of hail damage.
Also, our neighbors 2 floors up don't require sleep on the weekends. It is past 1:00 in the morning and they are still going strong. Curse this awesome hearing of mine! I'm never going to get a goodnights sleep again on Fridays/Saturdays.
Welcome to Oklahoma City, Easley family.
P.S. Ben is sleeping wonderfully. He won't sleep without some kind of noise, so it seems to be working for him.
Thursday, May 10, 2012
A Brand New Adventure
Our life with Ben is about to change tremendously! For the better, we hope!
As some of you may or may not know, we live in a small town in southern Oklahoma. While it may be a good place to raise your children, it lacks the resources we need for a specially abled child such as Ben. So, we are spreading our wings and going north to a suburb of Oklahoma City. We will be closer to his neurologist and opthamologist. Plus, many other resources will be available to him! Please keep us in your thoughts and prayers (if that is your thing) while we make the move and that it is an easy transition for us.
We are letting our oldest finish school here, so we will not be moving until after that is all done.
I have pictures of Ben's new braces that he received from Shriner's at our last visit to Shreveport, LA. I will do my best to remember to post them within a day or two.
Please be patient with me over the next few weeks!
Thank you!
As some of you may or may not know, we live in a small town in southern Oklahoma. While it may be a good place to raise your children, it lacks the resources we need for a specially abled child such as Ben. So, we are spreading our wings and going north to a suburb of Oklahoma City. We will be closer to his neurologist and opthamologist. Plus, many other resources will be available to him! Please keep us in your thoughts and prayers (if that is your thing) while we make the move and that it is an easy transition for us.
We are letting our oldest finish school here, so we will not be moving until after that is all done.
I have pictures of Ben's new braces that he received from Shriner's at our last visit to Shreveport, LA. I will do my best to remember to post them within a day or two.
Please be patient with me over the next few weeks!
Thank you!
Wednesday, April 11, 2012
We're back!
Last week, we made the long trek down to Shriner's Childrens Hospital in Shreveport, LA. He is growing out of the braces for his feet so he was measured for some new ones that actually fit. We picked out Dallas Cowboy ones and we can't wait to go pick them up! What a blessing Shriner's is; without them I'm not sure how we'd be able to provide braces for our little man. They also talked to us about some new stretches for his arms and legs & gave us new braces for his hands as well. He will go back May 3rd for those new foot braces then we won't go back again until October 2012.
The day before we went to Shriner's we had an appointment with Ben's pediatric opthamologist and scheduled surgery for his eyes. If all goes well and we can manage to scrape the 20% for the surgery center and the surgeon, he will have the surgery this coming Friday. It will be one of two surgeries for the year. Three muscles will be corrected on one eye this go around and it should take about 1 1/2 hours. It will be outpatient, so he will go home that day.
We also received each piece of equipment that we ordered and his stroller is wonderful! It provides so much more support than the loaner we had, it's unbelievable how awesome it is for him. I would describe it as the cadillac of special strollers.
Now that you're all up-to-date, here are a couple of pictures from our trip to Shreveport and Easter. Enjoy!
The day before we went to Shriner's we had an appointment with Ben's pediatric opthamologist and scheduled surgery for his eyes. If all goes well and we can manage to scrape the 20% for the surgery center and the surgeon, he will have the surgery this coming Friday. It will be one of two surgeries for the year. Three muscles will be corrected on one eye this go around and it should take about 1 1/2 hours. It will be outpatient, so he will go home that day.
We also received each piece of equipment that we ordered and his stroller is wonderful! It provides so much more support than the loaner we had, it's unbelievable how awesome it is for him. I would describe it as the cadillac of special strollers.
Now that you're all up-to-date, here are a couple of pictures from our trip to Shreveport and Easter. Enjoy!
Wednesday, March 21, 2012
Spring Break.
I have been working on a another awareness post, but these past several days have been pretty bumpy. I promise I haven't disappeared completely. Once things clear up and everyone starts feeling "normal" again, I'll start writing more updates.
Have a great week!
Have a great week!
Thursday, March 15, 2012
Cerebral Palsy Awareness Month - Equipment
Benjamin has Spastic Cerebral Palsy, which is the most common form of Cerebral Palsy.
In Ben's case, he has the least common type of S.C.P. in which he is affected in all four of his limbs. He has high muscle tone in both his arms and his legs while also having low muscle tone in his trunk. All of this together makes it very difficult for him to sit or stand without support. He requires specific equipment to help him.
In Ben's case, he has the least common type of S.C.P. in which he is affected in all four of his limbs. He has high muscle tone in both his arms and his legs while also having low muscle tone in his trunk. All of this together makes it very difficult for him to sit or stand without support. He requires specific equipment to help him.
Below are the exact items we recently ordered for Ben:
The gait trainer helps with support so they can learn to bear weight on their feet and from there they can learn to take steps then eventually walk.
Since many children with C.P. cannot support themselves while sitting, they require much needed extra support that a regular stroller cannot provide. That's where this wheel chair comes into the picture. Notice the straps that will go over their chest so they do not fall forward and will be more likely to have better posture.
This chair is yet another way to support the child, but it is used to keep them safe during bath time.
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| Rifton Gait Trainer - Size Small |
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| Quantum Rehab - Manuel Wheelchair - Kids Fast |
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| Rifton Blue Wave Bath Chair - Size Small |
Luckily, we do have insurance so we were only set back the cost of our deductible. But if we were not so lucky, we would have owed upwards of $4000 out of pocket.
Educate yourself. Spread the word!
Educate yourself. Spread the word!
Tuesday, March 13, 2012
Monday, March 12, 2012
Pictures, Pictures, come see some Pictures! : )
Here are a few photos of Ben before and during his casts, in a stroller that has been loaned to us until we get his very own stroller/wheelchair, and also in a gait trainer. For some reason I don't have a photo of just his braces, but I try to find a photo where you can see his braces well enough.
These photos are taken with my phone, so I am sorry for the poor quality. I will try to add some better ones of Ben when I have better internet. : )
These photos are taken with my phone, so I am sorry for the poor quality. I will try to add some better ones of Ben when I have better internet. : )
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| Ben's feet BEFORE casts and braces. |
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| Ben's feet in his casts. |
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| Ben enjoying the loaner stroller from our local health department. |
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| Ben trying out and enjoying a gait trainer. |
Finally. An update!
It looks as though I have not posted since September of last year, so I will do my best to catch you up!
*Our first visit to Shriners was just really an evaluation. They wanted to see where Ben was developmentally and orthopedically. He was measured for casts and braces to help straighten his feet (pictures to be added later), we were given temporary braces for his feet/ankles along with several other things to help his hips and hands. An appointment was then scheduled for the following month to put the casts on his feet.
*In between the first and second visit, we saw a neurologist in Oklahoma City. This was also an evaluation type appointment to give the doctor an idea of where Ben is at developmentally and what our next step needs to be. He suggested an MRI to see where the damage to his brain is, but we couldn't afford it at the time so it is to be rescheduled when we can actually pay for the procedure. We also talked about a muscle relaxer for him, but the improvement rates were so low that we decided it would not be worth it since he is only mild - moderately affected.
*The second visit didn't go quite as planned. He was supposed to have casts put on that I could remove myself 6 weeks later, but the braces he was fitted for did not fit due to the muscles in his ankles being too tight. He needed to be put on a low dose muscle relaxer, which I had not done yet. So, he had regular casts put on and we scheduled an appointment to come in 6 weeks later to get the casts removed and the braces put on after he'd being on the muscle relaxer for a little bit.
*After a phone call to the nurse at his neurologist, Ben was put on Baclofen (the low dose muscle relaxer) to prepare him for his braces.
*Our third visit to Shriner's was our longest and most productive. His casts were removed and his braces actually fit this time (YAY!). He is to wear the braces 23 hours a day until we go back for our forth appointment in April of 2012 to upgrade his braces to a bigger size.
--Other exciting news--
A gait trainer, new stroller/wheelchair, and a bath chair have all been ordered and should be received within the next couple of weeks! We absolutely can't wait! Our insurance is a PPO and sometimes it's difficult to get a gait trainer approved if the child has not reached certain milestones. Luckily we were approved and the process was in fact long, but smooth! We can't wait for Ben to have his new equipment!
*Our first visit to Shriners was just really an evaluation. They wanted to see where Ben was developmentally and orthopedically. He was measured for casts and braces to help straighten his feet (pictures to be added later), we were given temporary braces for his feet/ankles along with several other things to help his hips and hands. An appointment was then scheduled for the following month to put the casts on his feet.
*In between the first and second visit, we saw a neurologist in Oklahoma City. This was also an evaluation type appointment to give the doctor an idea of where Ben is at developmentally and what our next step needs to be. He suggested an MRI to see where the damage to his brain is, but we couldn't afford it at the time so it is to be rescheduled when we can actually pay for the procedure. We also talked about a muscle relaxer for him, but the improvement rates were so low that we decided it would not be worth it since he is only mild - moderately affected.
*The second visit didn't go quite as planned. He was supposed to have casts put on that I could remove myself 6 weeks later, but the braces he was fitted for did not fit due to the muscles in his ankles being too tight. He needed to be put on a low dose muscle relaxer, which I had not done yet. So, he had regular casts put on and we scheduled an appointment to come in 6 weeks later to get the casts removed and the braces put on after he'd being on the muscle relaxer for a little bit.
*After a phone call to the nurse at his neurologist, Ben was put on Baclofen (the low dose muscle relaxer) to prepare him for his braces.
*Our third visit to Shriner's was our longest and most productive. His casts were removed and his braces actually fit this time (YAY!). He is to wear the braces 23 hours a day until we go back for our forth appointment in April of 2012 to upgrade his braces to a bigger size.
--Other exciting news--
A gait trainer, new stroller/wheelchair, and a bath chair have all been ordered and should be received within the next couple of weeks! We absolutely can't wait! Our insurance is a PPO and sometimes it's difficult to get a gait trainer approved if the child has not reached certain milestones. Luckily we were approved and the process was in fact long, but smooth! We can't wait for Ben to have his new equipment!
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