hope is a word that has been somewhat overused as of late, but is not a word to be taken lightly. i started to think about hope after my friend laurie left me a message saying she had been outside the other night thinking of me and praying to see a shooting star so she could make a wish- as she has done many other nights before. as she was praying a star shot across the sky and she was so excited she almost forgot to say her wish- but she did. in her message to me she stated that she could not tell me what her wish was (as we all know, it would not come true), but she wanted to let me know that this had happened. while listening to her message i started to cry as her voice was so full of hope and in turn it filled me with hope. her hope is that her wish comes true. my hope is that her wish comes true.
Wednesday, December 17, 2008
Wednesday, August 27, 2008
August Update
It is difficult to believe that August is almost over and that we leave for Baltimore and Kennedy Krieger in 10 days! August has been full of visitors, trials and triumphs. Michael, my main therapist with whom I work with 6 hours a week, was away for 3 weeks. Although I still had a few PT sessions at the hospital with my therapist, Sonja and did some therapies at home with mom and Trevor, my body and mind really missed the extra hours of physical activity. Needless to say, Michael is back and I am thrilled. I had my first pool session in a month yesterday and showed much improvement by standing for longer periods of time and walking for longer distances. I'm also getting a lot of core strength back, which is more difficult to quantify, at least for me. I mostly take Michael's word for it.
A significant triumph is that I've been able to move my left leg without any assistance while using the lite gait walking machine.
On another note, the Pereyra family has two new additions to the clan, Asher Caden and Conor Thomas- congrats to Ken and Lori, Tom and Julie!!
A significant triumph is that I've been able to move my left leg without any assistance while using the lite gait walking machine.
On another note, the Pereyra family has two new additions to the clan, Asher Caden and Conor Thomas- congrats to Ken and Lori, Tom and Julie!!
Wednesday, July 30, 2008
Update July 29
It's been awhile since the last update, so I will concentrate on the highlights of the last few months since the last update.
Friends and family have been working hard organizing fundraisers to help us with medical expenses. These events have been amazingly successful and Trevor and I are in constant awe at the generous outpouring of time and money. The inspiration this has given me to push myself to recover is incalculable. I feel like I have all these investors!
Triumphs:
-We have returned the hospital bed!! I am so thrilled about this. I now can sleep in my own bed with no issues.
-I am now able to do my own transfers in and out of a car using a special transfer board. Another step towards independence and less work for Trevor.
-My overall strength continues to improve, especially my core strength, essential for standing and walking.
-I am now walking 25 minutes with lite gait machine and three therapists and have taken a few steps in the pool with minimal assistance.
-I have an actual triceps muscle in my left arm! Also, the left hand continues to show improvement. The right hand and arm continue to lag behind, but I am confident they will catch up.
We are planning our second trip to the International Spinal Cord Center at Kennedy Krieger in September.
We will be there for three weeks and are very excited for the outcomes.
Both my mom and Trevor's sister-in-law, Samantha Noonan, are visiting separately in August. We look forward to seeing them and also to have the extra help to give Trevor some much needed respite.
It's obvious I am the tortoise, not the hare, in this race. But, we all know the moral of that story!
Friends and family have been working hard organizing fundraisers to help us with medical expenses. These events have been amazingly successful and Trevor and I are in constant awe at the generous outpouring of time and money. The inspiration this has given me to push myself to recover is incalculable. I feel like I have all these investors!
Triumphs:
-We have returned the hospital bed!! I am so thrilled about this. I now can sleep in my own bed with no issues.
-I am now able to do my own transfers in and out of a car using a special transfer board. Another step towards independence and less work for Trevor.
-My overall strength continues to improve, especially my core strength, essential for standing and walking.
-I am now walking 25 minutes with lite gait machine and three therapists and have taken a few steps in the pool with minimal assistance.
-I have an actual triceps muscle in my left arm! Also, the left hand continues to show improvement. The right hand and arm continue to lag behind, but I am confident they will catch up.
We are planning our second trip to the International Spinal Cord Center at Kennedy Krieger in September.
We will be there for three weeks and are very excited for the outcomes.
Both my mom and Trevor's sister-in-law, Samantha Noonan, are visiting separately in August. We look forward to seeing them and also to have the extra help to give Trevor some much needed respite.
It's obvious I am the tortoise, not the hare, in this race. But, we all know the moral of that story!
Thursday, May 15, 2008
Update from Cynthia May 15
Hello- Just wanted to post the latest news on what is going on.
Triumphs:
I am now able to transfer myself from the chair to the bed and back with a slideboard 100% on my own! This means , among other things, that Trevor does not need to be here when I schedule acupuncture, massage and cranial sacral therapy appointments. I can also transfer myself to the sofa w/o a slideboard and am working on the return- it is uphill so more of a challenge.
I am now able to basically do my own dressing, everything except my supertight stockings and anything with hooks and snaps elude my not so nimble fingers. But the rest, the rest I can do!
Working with my at home therapist, Michael, three times a week now (bi-weekly at the pool). One of the goals we have been working on is getting myself up from the floor to the sofa and then to the chair. I'm hoping I will have this goal met in 4-6 weeks. We bought a big floor mat so that the floor work is easier and more fun. Hard wood floors aren't very therapeutic. :-) At the pool I have been able to paddle around on my back wearing a flotation device and using my arms and left leg (right leg still a bit slow to the game). The fact that I can hold myself up demonstrates a lot of core strength.
In my out atient therapy appointments we have begun using the lite gait machine over a treadmill- very exciting. Of course we started this and then insurance ran out... BUT
Finally heard back from insurance and... they approved 24 more therapy appoinments to be used within the next twelve weeks at CPMC (where I currently go for outpatient therapy). This is a great start, but I am hoping for more because...
We booked our next trip to Kennedy Krieger in Baltimore starting Sept. 8th for 3 weeks! A big trip for us in many ways. KK is really one of THE best spinal cord injury rehab facilities and we truly believe that 3 weeks of therapy there is equal to 3 months of therapy elsewhere. We will be going regardless of insurance approval.
With this in mind, my dear friends on the east coast have been starting to work on fundraising ideas. Dana and Laurie have some great ideas and would love to share them with other east coasters. If you would like to hear more about what they are doing, please email Dana at danauhler@yahoo.com.
Trevor's doing well- still being the super husband! I did hire someone to come in once a week to help around the house. A handyman/housekeeper, etc... who is just a wonderful, sweet guy. This should help.
I'll end with a "This can only happen in a wheelchair" story. Trevor and I were on our way to a therapy appointment a few weeks ago. Since we had the time, we decided to take public transportation, even though it requires two different buses. We get on the first bus-it's a brand new bus and we discover that we can lock my new wheelchair wheels in much easier than the old buses- isn't this great. Our stop comes up and since this is a new type of lock, Trevor is unsure how to release it. "press down on the lever" the driver advises. Trevor does, it doesn't work. So he does it again and then the steps on it- SNAP! - the lever breaks. Now we are stuck on the bus with the wheel lock broken. All the other passengers have to get off and the driver calls the fire dept. Oy vey! The fire dept. arrives in about 10min (not too bad) and pries the lock open- I'm free!! AND we still make the appt. Oh, we find out to release the wheel, one needs to lift UP on the lever. Well, now we know.
Love you all! Couldn't do this without you!
Cynthia
Triumphs:
I am now able to transfer myself from the chair to the bed and back with a slideboard 100% on my own! This means , among other things, that Trevor does not need to be here when I schedule acupuncture, massage and cranial sacral therapy appointments. I can also transfer myself to the sofa w/o a slideboard and am working on the return- it is uphill so more of a challenge.
I am now able to basically do my own dressing, everything except my supertight stockings and anything with hooks and snaps elude my not so nimble fingers. But the rest, the rest I can do!
Working with my at home therapist, Michael, three times a week now (bi-weekly at the pool). One of the goals we have been working on is getting myself up from the floor to the sofa and then to the chair. I'm hoping I will have this goal met in 4-6 weeks. We bought a big floor mat so that the floor work is easier and more fun. Hard wood floors aren't very therapeutic. :-) At the pool I have been able to paddle around on my back wearing a flotation device and using my arms and left leg (right leg still a bit slow to the game). The fact that I can hold myself up demonstrates a lot of core strength.
In my out atient therapy appointments we have begun using the lite gait machine over a treadmill- very exciting. Of course we started this and then insurance ran out... BUT
Finally heard back from insurance and... they approved 24 more therapy appoinments to be used within the next twelve weeks at CPMC (where I currently go for outpatient therapy). This is a great start, but I am hoping for more because...
We booked our next trip to Kennedy Krieger in Baltimore starting Sept. 8th for 3 weeks! A big trip for us in many ways. KK is really one of THE best spinal cord injury rehab facilities and we truly believe that 3 weeks of therapy there is equal to 3 months of therapy elsewhere. We will be going regardless of insurance approval.
With this in mind, my dear friends on the east coast have been starting to work on fundraising ideas. Dana and Laurie have some great ideas and would love to share them with other east coasters. If you would like to hear more about what they are doing, please email Dana at danauhler@yahoo.com.
Trevor's doing well- still being the super husband! I did hire someone to come in once a week to help around the house. A handyman/housekeeper, etc... who is just a wonderful, sweet guy. This should help.
I'll end with a "This can only happen in a wheelchair" story. Trevor and I were on our way to a therapy appointment a few weeks ago. Since we had the time, we decided to take public transportation, even though it requires two different buses. We get on the first bus-it's a brand new bus and we discover that we can lock my new wheelchair wheels in much easier than the old buses- isn't this great. Our stop comes up and since this is a new type of lock, Trevor is unsure how to release it. "press down on the lever" the driver advises. Trevor does, it doesn't work. So he does it again and then the steps on it- SNAP! - the lever breaks. Now we are stuck on the bus with the wheel lock broken. All the other passengers have to get off and the driver calls the fire dept. Oy vey! The fire dept. arrives in about 10min (not too bad) and pries the lock open- I'm free!! AND we still make the appt. Oh, we find out to release the wheel, one needs to lift UP on the lever. Well, now we know.
Love you all! Couldn't do this without you!
Cynthia
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