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!
Wednesday, March 21, 2012
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.
 |
| Rifton Gait Trainer - Size Small |
 |
| Quantum Rehab - Manuel Wheelchair - Kids Fast |
 |
| 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. : )
 |
| Ben's feet BEFORE casts and braces. |
 |
| Ben's feet in his casts. |
 |
| Ben enjoying the loaner stroller from our local health department. |
 |
| 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!
Thursday, September 29, 2011
So. Yeah.
Life is pretty much the same in the world of Ben. Although he has started jabbering more often and repeating more words. Last night he said 'Papa' back to us and we were so proud! He is getting to where he has more desire to communicate and I love it!
He is having to wear a patch each day over his eye. We have been seeing a Pediatric Opthomologist in OKC. Long drive, but totally worth it. In order to (hopefully) avoid surgery, we are alternating between the eyes each day to make them both stronger. Crossing our fingers for NO surgery! I will write more on that later.
Next week we will be in Shreveport, Louisiana to visit the Shriner's Hospital for Ben's first evaluation! Definitely an exciting time for us, but especially Ben. He will also see a Pediatric Neurologist in OKC on October 10th. This will be done as per request by the Shriner's. Plus, it's something we would have to do eventually. So might as well do it now!
Hope all is well in your part of the world.
Joy
- Posted using BlogPress from Joy's iPad
He is having to wear a patch each day over his eye. We have been seeing a Pediatric Opthomologist in OKC. Long drive, but totally worth it. In order to (hopefully) avoid surgery, we are alternating between the eyes each day to make them both stronger. Crossing our fingers for NO surgery! I will write more on that later.
Next week we will be in Shreveport, Louisiana to visit the Shriner's Hospital for Ben's first evaluation! Definitely an exciting time for us, but especially Ben. He will also see a Pediatric Neurologist in OKC on October 10th. This will be done as per request by the Shriner's. Plus, it's something we would have to do eventually. So might as well do it now!
Hope all is well in your part of the world.
Joy
- Posted using BlogPress from Joy's iPad
Saturday, September 17, 2011
A Glimmer of Hope
We have officially been approved by Shriner's to recieve care for Ben! Hopefully now we can get some braces for his feet/legs so we can start working on putting weight on them. The approval just happened on Thursday of last week, so I'm still not sure exactly how everything is going to happen. I do know we will be going the first week of October to the Shriner's in Shreveport, LA and I can't wait!
Our biggest obstacle right now is getting him a neurological exam. It is apparently harder to get one than I thought. Especially when you're dealing with a difficult front desk employee at your pediatrician, from whom you require a referral. UGH! Is it hard to hire people that are friendly and helpful? Or maybe just helpful? I would take helpful and not friendly because then something would be getting done. I guess all I can do is be patient. But it's so hard when the care of your child hangs in the balance!
I'll try to keep you updated on the progress through Shriner's.
Our biggest obstacle right now is getting him a neurological exam. It is apparently harder to get one than I thought. Especially when you're dealing with a difficult front desk employee at your pediatrician, from whom you require a referral. UGH! Is it hard to hire people that are friendly and helpful? Or maybe just helpful? I would take helpful and not friendly because then something would be getting done. I guess all I can do is be patient. But it's so hard when the care of your child hangs in the balance!
I'll try to keep you updated on the progress through Shriner's.
Subscribe to:
Posts (Atom)