tag:blogger.com,1999:blog-37144170986737392692024-03-14T03:58:28.266-05:00Hold On Tight!The story of one boy's adoption journey from a Ukrainian orphanage to his "forever family" in the United States, and his ongoing journey with spastic cerebral palsy. By sharing a little of Alex's story, we hope to promote the adoption of other disabled or special needs children from orphanages; to provide a source of information and support to families raising a child with cerebral palsy and/or a child adopted from an orphanage; and to spread the joy and inspiration that Alex has been to us all.Unknownnoreply@blogger.comBlogger162125tag:blogger.com,1999:blog-3714417098673739269.post-69881129932559382332014-05-15T19:55:00.003-05:002014-05-15T19:55:30.428-05:00The Gospel According to Alex<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="http://1.bp.blogspot.com/-S4Sp4qEihlY/U3VhxoQWR6I/AAAAAAAAAek/COeJPK4qzL4/s1600/001.JPG" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="http://1.bp.blogspot.com/-S4Sp4qEihlY/U3VhxoQWR6I/AAAAAAAAAek/COeJPK4qzL4/s1600/001.JPG" height="240" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Playing with Matthew, taking a break from preaching the Word. :)</td></tr>
</tbody></table>
<span style="background-color: white; color: #141823; font-family: Helvetica, Arial, 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 14px; line-height: 19.31999969482422px;">Alex wanted to "read" the gospel of the day in bed, before sleeping. I give him a book and say go ahead and g'nite. </span><br />
<span style="background-color: white; color: #141823; font-family: Helvetica, Arial, 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 14px; line-height: 19.31999969482422px;"><br /></span>
<span style="background-color: white; color: #141823; font-family: Helvetica, Arial, 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 14px; line-height: 19.31999969482422px;">A few minutes later I'm in the next room and I hear: "and Jesus said, no more monkeys jumping on the bed. The gospel of the Lord."</span>Anonymousnoreply@blogger.com3tag:blogger.com,1999:blog-3714417098673739269.post-25677764939337380062014-04-11T21:10:00.000-05:002014-04-11T21:10:37.513-05:00Alex's new best friend . . . Carter the therapy dog!<div dir="ltr" style="text-align: left;" trbidi="on">
Alex's teacher trains therapy dogs, and today one of them, Carter, came for a visit. Alex was scared of him at first (his normal reaction around dogs), but quickly warmed up, thanks to the expert help of his teacher and EA. Here is the note that his teacher sent with the video: "Here is the video of Alex and Carter. I am amazed at how quickly Alex
became comfortable with him. I loved watching Alex handle the leash.
Too bad I don't have video of him walking Carter."<br />
<br />
Apparently Alex "walked the dog" during recess by holding onto the leash. I put that in quotes because Alex came home talking about walking the dog, but in reality it sounds like the dog walked him, pulling him all over the playground! Anyway, here is the video of Alex petting the dog in the classroom:<br />
<br /></div>
<iframe width="853" height="480" src="//www.youtube.com/embed/LzQHuu0xZxE" frameborder="0" allowfullscreen></iframe>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-3714417098673739269.post-77952979388377359832014-04-07T09:02:00.001-05:002014-04-07T09:02:56.864-05:00'Thank you for your assistance': Orphanage elevators working again<div dir="ltr" style="text-align: left;" trbidi="on">
Well, Alex is home sick today (actually he looks completely fine, but he was hot in the middle of the night, so he is staying home as a precaution -- loving playing video games and being waited on by Dad, lol).<br />
<br />
But I wanted to get online and let you know that we got an e-mail from the orphanage today, thanking us for the $600, which they used to fix the elevators (!):<br />
<br />
<div style="text-align: center;">
<span style="font-family: "times new roman",times; font-size: large;">Дорогие Джеральд и Сьюзен!</span></div>
<div>
<span style="font-family: "times new roman",times; font-size: large;">
Спасибо огромное Вам за оказание помощи это дало нам возможность
отремонтировать лифты, на которых подымают деток на колясках на второй
этаж.</span></div>
<div>
<span style="font-family: "times new roman",times; font-size: large;"> Мы рады, что Саша приобрел семью, счастье и любовь в Вашей семье.</span></div>
<div>
<span style="font-family: "times new roman",times; font-size: large;"> Вышлите на e-mail Ваше семейное фото.</span></div>
<div>
<span style="font-family: "times new roman",times; font-size: large;"> С уважением Татьяна Ивановна, дети, сотрудники.</span></div>
<br /> Here is the same message as translated by Google (assuming you don't read Russian!):<br />
<br />
<div class="ii gt undefined" id=":1dk">
<div class="a3s" dir="ltr" id=":1ge" style="overflow: hidden;">
<div style="text-align: center;">
<span style="font-family: "times new roman",times; font-size: large;">Dear Gerald and Susan!</span> </div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhC5R0-i0FRa7lDbQYAecIa7xfkzfAstq8MGzIm7qJLlyQbuC6x78wkznKf3pacKXsUHUdWzklQu1d6XPAHksszi7fC7sqNNanuYutDdQ6hVpjQpvbbenlFOMks54lV-SPaB8YnesMwdwzs/s1600/photo+1.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhC5R0-i0FRa7lDbQYAecIa7xfkzfAstq8MGzIm7qJLlyQbuC6x78wkznKf3pacKXsUHUdWzklQu1d6XPAHksszi7fC7sqNNanuYutDdQ6hVpjQpvbbenlFOMks54lV-SPaB8YnesMwdwzs/s1600/photo+1.JPG" height="640" width="480" /></a></div>
<div>
<span style="font-family: "times new roman",times; font-size: large;">Thank
you very much for your assistance it gave us the opportunity to repair
the elevators, which are raising kids in wheelchairs on the second
floor.</span> </div>
<div>
<span style="font-family: "times new roman",times; font-size: large;">We are delighted that Alex has acquired family, happiness and love in your family.</span> </div>
<div>
<span style="font-family: "times new roman",times; font-size: large;">Send e-mail to your family photos.</span> </div>
<div>
<span style="font-family: "times new roman",times; font-size: large;">Yours Tatiana, children, employees.</span> </div>
</div>
</div>
<br />
Amazing to think that $600 would help them get the elevators fixed, but wow, what an important contribution -- so much safer than going up and down all those stairs! Thank you to all who contributed to the cause. We will be continuing to look for opportunities to help them out again, and will post here when we do so.<br />
<br />
<br />
<br /> <br />
<br /> <br />
<br /> <br />
<br /> <br />
<br /> </div>
Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-3714417098673739269.post-53158519690632670952014-04-01T10:24:00.000-05:002014-04-01T10:24:45.869-05:00A;ex at school<div dir="ltr" style="text-align: left;" trbidi="on">
<div dir="ltr" style="text-align: left;" trbidi="on">
Here is some video of Alex at school...a few short clips of him at work, followed by a couple of longer, low-quality clips of him singing very enthusiastically in the school musical.<br />
<br />
<br /></div>
<iframe allowfullscreen="" frameborder="0" height="480" src="//www.youtube.com/embed/dLZ84kJ5Yn0" width="853"></iframe></div>
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgYm5orIJs0bfWAKfp0c_O2MVNI3JignNvQB_5TQTEfuUc7hch2NWKQW27KJJkFLXDmDv5yQeMB8pef9METOkI37Br0h6xUBgWE2cBPi5-D0teu1whJbxLwMwKnd51zDG0bOti0sF7VlUrJ/s1600/photo+5.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgYm5orIJs0bfWAKfp0c_O2MVNI3JignNvQB_5TQTEfuUc7hch2NWKQW27KJJkFLXDmDv5yQeMB8pef9METOkI37Br0h6xUBgWE2cBPi5-D0teu1whJbxLwMwKnd51zDG0bOti0sF7VlUrJ/s400/photo+5.JPG" /></a></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgvcqT4uHNrI_xIN2_FWVJgftj3CMKTOdOOFF9r7nd0EFbQt3Ec0JuVY4l4pPNu_1FU1xWboegNrbFiKRu9CVVhOABFyJ6q60OPG6SWT1Zn4Dmf1i6aK3YInnGrWS5ScfbTsHX4lkWbPKGi/s1600/photo+2.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgvcqT4uHNrI_xIN2_FWVJgftj3CMKTOdOOFF9r7nd0EFbQt3Ec0JuVY4l4pPNu_1FU1xWboegNrbFiKRu9CVVhOABFyJ6q60OPG6SWT1Zn4Dmf1i6aK3YInnGrWS5ScfbTsHX4lkWbPKGi/s400/photo+2.jpg" /></a></div>
Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-3714417098673739269.post-62024859572277492772014-03-27T11:25:00.000-05:002014-03-27T11:25:02.134-05:00Selective dorsal rhizotomy update<div dir="ltr" style="text-align: left;" trbidi="on">
Well, we finally got a decision on Alex’s selective dorsal
rhizotomy. The Mayo team has decided not to proceed with the SDR at this
time. An SDR will remain “on the table” as an option to consider over
the next year or two, but only if we see significant improvement in the
strength and control of Alex’s torso and head.<br />
<br />Here’s what we understand about the no-SDR decision. Right now, the
Mayo team is observing significant weakness in Alex’s torso and neck;
they also note that he fatigues very rapidly when he is walking. By
relaxing the muscles in his legs and lower torso, an SDR would make it
even more difficult for him to maintain an upright posture. He would
definitely recover some strength and control over the year following an
SDR, but the concern is whether he would be able to recover enough
strength and control to be functional. In the words of his doctor, Dr.
Brandenburg, his physical medicine and rehabilitation (PM&R) doctor:
“The concern is that if we take away the tone in his legs and we don’t
have the tone in his head or trunk, he won’t be able to stand in his
walker.” In order to be more comfortable that he would function better,
not worse, after an SDR, the Mayo team wants to see a higher baseline of
torso and neck strength prior to giving an SDR a green light.<br />
<br />Will he ever have an SDR? Maybe; the option will remain on the table
over the next year or two, but it is definitely not a sure thing. The
feeling is that he would have to demonstrate a lot of improvement.
Toward that end, his doctor is suggesting that we really focus on seeing
how much stronger he can get in the next year, and especially over the
summer. She notes that most kids have more than a year and a half of
therapy to build up their strength prior to an SDR; Alex hasn’t had
that, nor has he had the benefit of being active when he was younger, so
it is possible that with continued intensive therapy over the next
year, we will continue to see good improvement. But again, it doesn’t
seem “likely” at this point.<br />
<br />Will he ever walk? Based on what we’re seeing from the gait lab
analysis, it seems unlikely that he will ever walk without a walker.
Even an SDR or other intervention would probably just improve his
function in a walker, not get him out of it. Moreover, especially as he
gains weight, Alex’s preference is probably going to be to use a
wheelchair. As Dr. Brandenburg said, for him, walking uses the same
amount of energy as running does for us. (We’re also aware that
improvements in robotic prosthesis technology over the next couple of
decades will probably see him walking at some point down the road; <a href="https://www.sciencenews.org/blog/scicurious/future-robotic-leg" target="_blank">see this article</a> for where that technology is at now.)<br />
<br />What’s next? The short version is that we will be zeroing in on
strengthening the torso and neck muscles. We’re also going to be having
conversations with Dr. Brandenburg and his school and Winona Health
medical team about how to move forward to improve Alex’s daily
functioning, so that he can be “the best Alex he can be,” as his doctor
put it. He is going to get back on Botox and phenol (he will probably go
for that on May 8), and over the summer we will be ramping up his
baclofen. We will be looking at his equipment needs, too. Down the road,
we will revisit the possibility of an SDR; other options that Mayo is
interested in considering include a tendon release (cutting tendons to
reduce scissoring) and a baclofen pump (implanting a pump to deliver
baclofen directly to the affected muscles).<br />
<br />I want to say that Susan and I are not disappointed by this outcome.
We have known from the beginning that walking independently was not a
sure thing for Alex, so this doesn’t come as a surprise. Our goal has
always been to help Alex realize his full potential: to participate in
the life of community as much as possible, to contribute his gifts to
the world, to love and to be loved. That is our focus, and the
particular way that happens is less important. One of the chapters in
Susan’s new book looks at the theology of disability, the upshot being
that even disability can be used by God to disclose the divine. Not that
God wants Alex to be disabled, necessarily, but his plan is to take
that disability and turn it upside down and inside out, so that
something good comes out of it. We are privileged to be able to
participate in that plan, and to witness all the “good fruit” coming
from Alex’s life.</div>
Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-3714417098673739269.post-91770423391456957412014-03-07T21:42:00.000-06:002014-03-07T22:03:27.247-06:00Gait analysis clinic<div dir="ltr" style="text-align: left;" trbidi="on">
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjzaQKkBZd2Z38TBrH6GE4wC-FTcwNdEM8gZx28B259B7YVrGjI6-bWajL2xO3KD06RiDfnHELYZn86wPuSZyfxc3y-I355r3Vf5gnDyP9cCXU8ISq1y8INRUssIveO8x6g36vAWvbd08pv/s1600/003.JPG" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjzaQKkBZd2Z38TBrH6GE4wC-FTcwNdEM8gZx28B259B7YVrGjI6-bWajL2xO3KD06RiDfnHELYZn86wPuSZyfxc3y-I355r3Vf5gnDyP9cCXU8ISq1y8INRUssIveO8x6g36vAWvbd08pv/s1600/003.JPG" height="320" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">"This is not as fun as it looks."</td></tr>
</tbody></table>
Earlier this week Alex went to Mayo for a gait analysis clinic. It was a LONG day. "LOTS of appointments," he kept saying.<br />
<br />
The big one was the actual gait lab, which involved four adults (not including me) working to make Alex the bionic boy for a few minutes. After taking lots of measurements where he tried to stretch, extend, and bend as far as he could, they began attaching microphones to his legs and little silver balls all over his body, but especially his legs. Cords were attached to the microphones, and when he moved a leg, the computer registered the strength of the movement in a variety of muscles.
By the time has was all "hooked up," they picked him up and asked him to walk (with support on each side). He would walk two second, then one of the silver balls would pop off (because he is scissoring so badly all this electronic gear is getting bumped). They would redo, set him up to walk, and we'd get two-four seconds, and boom--stop, lost a ball, or lost the signal on this microphone, etc.. I honestly thought it was a bit touch and go, because Alex was getting tired, and they were having a hard time getting the readings they needed. In the end, they said they didn't get everything they wanted, but they got what they needed. Then they took bionic gear off Alex, and asked him to walk (with one person support) for videotape. He did better on that. So, two hours after we started there, we were off....<br />
<br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhIW_oSHTFeQuDXu8dX8YGn_4HKSNJsZUBe9VXlK1MFmene6sSrYWDkcYHVPIFIWwN0Q-oaR7Uc4yJ_AWj1107Xje0mBZFOrheMwj3S0mwVVAz_eV2BIgW5etcQd5ubPF8IGXhBLH_R31Mj/s1600/005.JPG" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhIW_oSHTFeQuDXu8dX8YGn_4HKSNJsZUBe9VXlK1MFmene6sSrYWDkcYHVPIFIWwN0Q-oaR7Uc4yJ_AWj1107Xje0mBZFOrheMwj3S0mwVVAz_eV2BIgW5etcQd5ubPF8IGXhBLH_R31Mj/s1600/005.JPG" height="320" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Reattaching electrogear in the walking....</td></tr>
</tbody></table>
After lunch, we went to "Mayo 16 East" for appointments with the social worker, his PM&R doctor, and an assessing PT. Oh, and a pelvic xray. The xray was short, but the appointments were all an hour long. Alex tends to be very good at these appts, but he was really flaming out by the end of this day.<br />
<br />
Anyway, our PM&R doctor spoke to us more about the selective dorsal rhizotomy, and if I get anything wrong here, blame me, not her. The way it is done at Mayo is that these surgeries occur on Fridays, and total going into surgery and back in recovery time is about 4-5 hours. The surgery involves going into the spine and isolating nerves that send messages to legs. They want to cut the nervelets that send the spastic messages. They also cur sensory nerves, not motor (?) nerves. They test each nervelet as they do this. They do not cut more than 70% of the nervelets--and in general, as few as they can. But even if an area has 100% spasticity, they only cut 70%. After that point, it is very hard for a person to recover strength. You can read about <a href="http://www.stlouischildrens.org/our-services/center-cerebral-palsy-spasticity/about-selective-dorsal-rhizotomy-sdr" target="_blank">selective dorsal rhizotomy </a>in great detail at the St. Louis Children's Hospital -- pictures and everything.<br />
<br />
She said he would initially seem much worse--kids who have this done are very "floppy." The initial recovery is to mend the spine, but she said they do light physical therapy the day after surgery (very light). And epidural is helping a lot Saturday and Sunday. Monday, barring complications, we go into a 3 HOURS OF REHAB routine 5 days a week for two weeks. Weekends are off. Then we get busted loose and we continue 5 days a week PT at home through Winona rehab services...although 45 minute sessions then. She said the daily PT (except weekends) is to be expected for the first three months, and the full effect of the rhizotomy would not be seen for a year.<br />
<br />
In terms of surgery recovery, this is shorter than the rhizotomy that is done at Gillette (6 week in hospital recovery). She explained why and the pros and cons of each procedure, and I could see a great debate among medical professionals about which to do (she explained them very objectively, I must say). We asked if she was confident with the results she sees at Mayo, and she said absolutely.<br />
<br />
They have not decided to do this yet. March 20, the doctors there meet to discuss whether he is a candidate for the procedure. (Basically, if he is too dystonic--that is, he has too much mixed tone--this will not help and will make things worse.) The assessing PT was friendly but concerned that he has very low tone in his trunk. She volunteered that she was seeing him at the end of a long day, never a good time to make assessments, and said she would check the video that the gait lab produced. We also talked about how this has been an issue since we adopted him, but despite appearances, he has made real improvements.
So on March 20, the PM&R doctor said she would call us and let us know what the medical staff decided. And then would ask us whether we wanted to proceed. If we say yes, we get to visit Mayo A LOT in the next few weeks for pre-op procedures and another MRI. Surgery would be on a Friday in May; we would hope for May 2, but we are not guaranteed that date, as these things are difficult to schedule. After the surgery, one of us will stay with Alex in Rochester for 2.5 weeks.<br />
<br />
They are all talking like it will be worth it in the long run. The advantages of this surgery for Alex is that it will help prevent (more) muscle contractures, decrease spasticity pain, and give him a better shot at walking well in a walker (when Jerry raised walking with crutches/canes, she said she didn't really see that in his future, which doesn't surprise me).
And so, we wait. We're depending on the doctors here to make a good decision about whether this works for Alex or not. If he is not a candidate, we're back to Botox injections and maybe a baclofen pump (a move they and we are not thrilled about perusing).<br />
<br />
If you want to see more of the gait lab, see the video below.<br />
--Susan<br />
<br />
<br />
<iframe allowfullscreen="" frameborder="0" height="315" src="//www.youtube.com/embed/S3R6DsJOblk" width="560"></iframe>
</div>
Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-3714417098673739269.post-5592372692819830492014-02-14T21:08:00.001-06:002014-02-14T21:09:28.897-06:00Alex "reads" Biscuit Goes to School<div dir="ltr" style="text-align: left;" trbidi="on">
<iframe allowfullscreen="" frameborder="0" height="315" src="//www.youtube.com/embed/9ahe93zIhbQ" width="560"></iframe>
<br />
<div dir="ltr" style="text-align: left;" trbidi="on">
<br />
Alex has loved books ever since we first introduced him to them at the orphanage -- he loves just flipping through them, for starters; it kept him occupied for maybe six hours on the long tip back to the United States from Ukraine. Once he was home, flipping through a big book was one of his favorite things to do to relax. The bigger the book, the better! Our pastor even noted it at his baptism.<br />
<br />
In the past few months, he has also begun to show some good indicators of pre-literacy, such as:<br />
<ul style="text-align: left;">
<li>Asking what words say</li>
<li>Identifying certain letters of the alphabet and the sound they make</li>
<li>Following narratives in stories</li>
<li>Pretending to read by reciting narratives from memory, using pictures as cues</li>
</ul>
The video shows an example of this last accomplishment -- although really, it wasn't his best performance. He may have been distracted by the audience (video camera plus a visiting friend).<br />
<br />
Alex's desire to read is great, and we have no doubt he will get there, someday -- but his progress is doing to be slow. One thing that the doctors at the Mayo Clinic recently figured out is that he has a visual processing disorder that prevents him from putting the parts of a picture into a whole -- so for instance, distinguishing the difference between the capital letter I and a T is challenging for him. His occupational therapist has started working with him to identify the tops and bottoms of letters and numbers, and to break individual letters down into their constituent parts, e.g., to look for the individual strokes that distinguish letters from one another.<br />
<br />
In the meantime, we're enjoying watching his enthusiasm for books!<br />
<br />
<br /></div>
</div>
Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-3714417098673739269.post-5996442841868017612014-02-14T20:37:00.000-06:002014-02-14T20:37:02.439-06:00$600 on its way to Ukraine orphans<div dir="ltr" style="text-align: left;" trbidi="on">
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjZcQiVFXrrBuTjnMEahBvuprVJAjvGBGr3lRTBx3n3qx4dA_VsjLRo9TNIe9azB_R-KovicOBbSWsHN0omj4hm4O1Y7lwTtUYmo08nfyzw2Ez6d2DujxZOcL7gFbBDUaDqJbCnQ2IQJXF3/s1600/photo+4.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjZcQiVFXrrBuTjnMEahBvuprVJAjvGBGr3lRTBx3n3qx4dA_VsjLRo9TNIe9azB_R-KovicOBbSWsHN0omj4hm4O1Y7lwTtUYmo08nfyzw2Ez6d2DujxZOcL7gFbBDUaDqJbCnQ2IQJXF3/s1600/photo+4.JPG" height="640" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Photo collage by Adrienne, Alex's PCA</td></tr>
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As I write this, our friend (and fellow graduate of the Ukrainian adoption families class of '12) is winging her way to Ukraine--for the third time, mind you. While she's there, she and her husband will be adopting four children, including one from Alex's institution. And when she visits the institution, she will bring along the $600 we raised, with many generous contributions.<br />
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Please pray for "Renee" and her family. The next couple of months are going to be challenging, even if all goes well. It's a good thing they have a spirit of adventure and a deep faith.<br />
<br />
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We'll keep you posted when we learn more about how the money is used; in the meantime, you can follow her blog at <a href="http://butbygraceitcouldbeme.blogspot.com/" target="_blank">But By Grace....</a></div>
Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-3714417098673739269.post-81520125962180085572014-01-19T09:02:00.000-06:002014-01-19T09:05:08.104-06:00A gift for the children of Alex's institution<div dir="ltr" style="text-align: left;" trbidi="on">
Hello, everyone. We have an opportunity and ask for your help.<br />
<br />
We
have a friend who is going to Ukraine in one month, and will be in the
town Alex's institution is in. She has agreed to carry over money from
us (and our friends) and hand it to the director of the institution as a
gift for the children there.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhdMr-m5ZME3MZA6wy1dzr9bc1R0MSDlj1VYthMnls1FQLdrzHoY34UZlEQPGtVlkjRjcmSJSiMBdLFLD0ZRhgKYpJtP44aga8_jq9L2DJ1Iz0LZLXJxXv0wulk_wpNDCl0DQAChOB1m2d3/s1600/Adoption+078.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhdMr-m5ZME3MZA6wy1dzr9bc1R0MSDlj1VYthMnls1FQLdrzHoY34UZlEQPGtVlkjRjcmSJSiMBdLFLD0ZRhgKYpJtP44aga8_jq9L2DJ1Iz0LZLXJxXv0wulk_wpNDCl0DQAChOB1m2d3/s1600/Adoption+078.JPG" height="400" width="300" /></a></div>
When we took Alex home, we left behind more than one hundred children, ages 4-16 (mostly), all with severe disabilities. Some are
available for adoption (interested? talk to us!), but many, most, are
not. The director is a very responsible woman who is trying her best to
provide care for all these young people, and has done a lot to transform the institution (e.g., adding electricity, planting extensive gardens and orchards, adding playground equipment). But
Ukraine does not fund these institutions well, so there is a lot of
making do on very low funds--the diet is the diet of the poor, the
windows need replacing but that is expensive, any "extras" in that
orphanage are usually donated rather than acquired. We donated Alex's
care-giving funds (they came from the state with our adoption) to the
institution, and the director said she was going to buy meat with it. Meat is rare in the diet of these kids, which is one reason Alex was "morbidly iron-deficient" when we brought him home. The director was very interested in us seeing the receipt,
offered that we could come and observe the purchase, etc. This is all
to say that the money is needed, it is well spent, and she spends it on
the children.<br />
<br />
Wiring money to this small town in the middle of nowhere is a lot more difficult than you might imagine (we've done it before). So this is a great opportunity.<br />
<br />
We need to get the money to
our friend as soon as possible. We will be making a small donation of our own; if you are interested in joining us, you can send donations via the Paypal button on the sidebar or mail it to us at 664 Winona Street, Winona, Minnesota, 55987. We will accept
donations until <span class="aBn" data-term="goog_17663923" tabindex="0"><span class="aQJ">Jan. 24</span></span>, and then send the money on its way through our friend.<br />
<br />
Thanks for even considering this, folks. I'm afraid this
isn't the sort of donation you can write off on your taxes, but you can
make children in a very difficult situation a little more comfortable
and happy. Pass the word if you know someone else who wishes to help.<br />
<br />
God bless, <br />
Susan and Jerry<br />
<br />
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Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-3714417098673739269.post-75869409708306482042014-01-06T22:11:00.000-06:002014-01-06T22:11:22.750-06:00Alex gets a new Tripp Trapp high chair<div dir="ltr" style="text-align: left;" trbidi="on">
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</xml><![endif]--><a href="https://www.blogger.com/null"></a>About a month ago, Alex got a new Stokke Tripp Trapp chair to better position him at the table. The design is ingeniously simple, as you can see from this video (which comes with an extra helping of Alex/teddy bear cuteness on the side):<br />
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<br />
Previously, Alex was sitting in a Wenzelite Seat2Go strapped into a regular kitchen chair. It was bulky to move, and because there was no foot rest, every time his spasticity made him straighten out his body (which happens every time he gets excited), his butt would scooch forward a little, which would leave him in a slouched position. It also forced him into a reclining position, and was difficult to clean because it was made of fabric. The Tripp Trapp chair is light, gets him right up to the table in a good position, and is easy to clean.<br />
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<tr><td class="tr-caption" style="text-align: center;">Contents of the box</td></tr>
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<span style="font-family: "Georgia","serif";">It’s relatively
easy to assemble; I figured it out in about 45 minutes. You can <a href="http://www.amazon.com/s/?_encoding=UTF8&camp=1789&creative=390957&field-keywords=stokke%20tripp%20trapp&linkCode=ur2&sprefix=tripp%20tr%2Caps%2C300&tag=creativehoney-20&url=search-alias%3Daps" target="_blank">price them at Amazon</a><img alt="" border="0" height="1" src="https://ir-na.amazon-adsystem.com/e/ir?t=creativehoney-20&l=ur2&o=1" style="border: none !important; margin: 0px !important;" width="1" />, although you might find them cheaper elsewhere. Thanks to Alex's godparents for once again stepping in to help out!</span></div>
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Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-3714417098673739269.post-91063460603187171252013-12-31T21:44:00.001-06:002013-12-31T21:44:23.945-06:00I love you...SO much!<div dir="ltr" style="text-align: left;" trbidi="on">
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<br />
Susan posted this to Facebook, so you might have already seen it there, but it seemed worth cross-posting here as well:<br />
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<blockquote class="tr_bq">
<span class="userContent" data-ft="{"tn":"K"}">A
recent Alex moment: Alex got a big bang on his head (accident) while we
were visiting relatives, and began to cry (very unusual for him, he does
not cry--so he was hurt!). My other kids ran to get me, and I came out
and took care of him (ended up holding him for an hour, although he was
calm after a few minutes). He's been processing this for days now,
although the bump doesn't seem to hurt hi<span class="text_exposed_show">m. <br /> <br /> Alex: Mom, why you go outside for me?<br /> Me: Why do you think, Alex?<br /> Alex (whispers): Because I was crying.<br /> Me: Yes, you were crying because you were hurt, right?<br /> Alex: Yes. But why you come?<br /> Me: Because you are my little boy and I want to take care of you. Because I love you.<br /> Alex (smiling big): SO much.<br /> <br />
I think he is processing this because he likes hearing me say that: I
want to take care of you. I love you. (and he always adds "SO much.") </span></span></blockquote>
</div>
Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-3714417098673739269.post-52232181993547530142013-12-17T22:10:00.000-06:002013-12-17T22:10:44.041-06:00Alex trains for the U.S. Winter Olympics luge team<div dir="ltr" style="text-align: left;" trbidi="on">
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Big announcement! Drumroll, please! After witnessing Alex’s stunning performance on the sledding hill on Sunday in -20 degree Fahrenheit (windchill factor) weather, we have decided to allow Alex to fulfill his aspiration to join the U.S. Winter Olympics luge team! As you can see from the attached video, he’s a natural. Not even a major wipeout could keep him down! No, he was ready to “do it again” right away!<br />
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Seriously, Alex did enjoy sledding a lot more this year than last year. For the most part he went down with one of his siblings or alone, backwards (facing uphill). As long as he was sent down straight, he did fine. (At one point you will see me advising him to go down straight to avoid flipping; of course, in retrospect, that was a dumb thing to say!)<br />
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Coming up soon, we’ll be posting Alex’s newest adaptive seating solution—a Tripp Trapp chair.<br />
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Now for the highlights reel:<br />
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And finally, the hot chocolate:
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Unknownnoreply@blogger.com3tag:blogger.com,1999:blog-3714417098673739269.post-64055098468894100552013-12-08T22:00:00.000-06:002013-12-08T22:30:25.945-06:00A Sweet Moment<div dir="ltr" style="text-align: left;" trbidi="on">
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I put Alex to bed tonight and he said (as he always does) "You going to work now?" (He means work on the computer in my room.) I said "A little, but I want to go to bed soon because I don't feel good. I am sick." Deep concern. "Oh no, Mom. Where do you hurt?" "My head hurts and my tummy hurts. I'll be OK, I just feel sick." He reached out his hand to touch my forehead (like the sign of the cross--we do thatwith our kids before they go to sleep). I asked, "do you want to pray for me tonight?" He said "Yes..." Then he folded his hands and said:<br />
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"God, please help. Mom sick, help her get better. Better in head and in tummy. Amen."<br />
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I gave him a big hug. Not only was it a heartfelt prayer, it was a pretty extended train of thoughts expressed at once for him.</div>
Anonymousnoreply@blogger.com1tag:blogger.com,1999:blog-3714417098673739269.post-78492017415413633992013-12-06T21:52:00.000-06:002013-12-08T22:31:14.136-06:00The Great Modular Wheelchair Ramp Saga<div dir="ltr" style="text-align: left;" trbidi="on">
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After sixteen months of bumping Alex up and down our front steps (while holding the storm door open) every time he needed to get to the school bus or our car, we finally installed a wheelchair ramp—yay!<br />
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I didn’t find much online when I went to research what it would take to get a wheelchair ramp on the front of our house, so forgive the detail of this rather long post—a lot of it is provided for others who might be looking for similar information and who might benefit from our experience.<br />
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I suppose there’s another reason for going into detail about what it took to get Alex his wheelchair ramp. What we’ve learned over the past eighteen months is that people with physical disabilities live in a parallel world—one in which everything is about ten times harder to accomplish than it would normally be.<br />
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Heck, getting a wheelchair ramp—just to be able to get in and out of the house safely—proved to be an epic saga, full of ups and downs. (Sorry, couldn’t resist.) <br />
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Two Challenges: Making a Plan and Finding Funding</h3>
We’d been considering this for a while, but as we’ve been triaging Alex’s many needs, it didn’t quite rise to the top of the priority list, especially considering the challenges involved. First, how would we squeeze a safe ramp into our cramped front yard? State building code requires a 20:1 slope (that’s 20 units of run for every one unit of rise), and accessibility experts warn that a ramp steeper than 12:1 could be dangerous. Our front door sits 28 inches off the ground; doing the math, that’s at least 28 feet of ramp, not including landings!<br />
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Our second concern was how to pay for it. At the time, we figured a ramp would cost about $3,000, not including labor. Neither we nor anyone we knew had that kind of money. So we sat on it.<br />
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Then, back in July, one of Alex’s PCAs took the initiative to get the ball rolling (she must have been getting tired of those steps, too) by contacting a carpenter she knew from church. He was the first of three friends-of-a-friend with some kind of construction/carpentry experience to come by and scope out our situation. One of them even came up with a rough sketch of how we might squeeze 28 feet of ramp into our front yard using a switchback system.<br />
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So, once we had a plan for our wheelchair ramp, we set to work finding funding. We started by checking into grants. The logical place to start asking was with Alex’s PCA agency, the Southeastern Minnesota Center for Independent Living, where we were told there really weren’t any grants out there. Surprise, surprise. (Leave a comment if you know of grants we missed!) We checked with our local Habitat for Humanity chapter; it turns out they will build a ramp at the cost of materials. That would be helpful, but still wouldn’t touch the $3,000 or so required for cement and treated lumber for a conventional wooden ramp.<br />
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Then we contacted our county social worker, who right away determined that Alex qualified for a “CADI waiver.” CADI stands for Community Alternatives for Disabled Individuals; it’s designed to help disabled people on Medical Assistance stay in their homes. (Three cheers for the generosity of Minnesota taxpayers! Although, it should be said, the program is designed to save the state money by avoiding more expensive institutionalization costs. You can check the details at the <a href="http://www.dhs.state.mn.us/main/idcplg?IdcService=GET_DYNAMIC_CONVERSION&RevisionSelectionMethod=LatestReleased&dDocName=id_003905)" target="_blank">CADI waiver web page</a>.) Within a week, we had the paperwork filled out and were ready to start finding contractors. <br />
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Finding a contractor and drafting a plan</h3>
Heh, heh. This turns out to be a lot more difficult than you might think. The local CADI waiver team at the county required at least two bids to ensure the cost-effectiveness of the project, and let me tell you, getting those two bids was like pulling hens’ teeth.<br />
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The main problem was that this was a small, short job—too small for most of our busy builders and contractors to even bother with. Long story short, it took nearly a month before we finally got bids from three contractors, two of whom were acquaintances who did so as a favor; the third was the friend of a friend who may have also submitted the bid as a favor.<br />
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Before we could get the bids, though, we needed to provide specifications—the builders needed the details of the project they were bidding on, right? In short, we needed a plan or a blueprint for the ramp.<br />
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Like a fool, I had thought the bidding contractors would come out and make measurements and consult building codes and draw up plans. That isn’t what happened. Over the course of the month we spent trying to get bids, it slowly dawned on me that I was going to have to provide the detailed plans because, once again, the job was too small (see above) to warrant the work of drawing up plans—and there’s even less incentive when you’re bidding on a project that you might not win.<br />
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Now, I am not an architect or even versed in something as basic as Google’s SketchUp, which is really what you’d want to use to do it right, but I took a photo of the building site from above (by crawling onto the roof) and then slapped that into Microsoft Publisher and kind of roughed out plans that way. Along the way I consulted our local building inspector, e-mailing him two different versions of the plan and talking to him on the phone no less than three times in some detail.<br />
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You might think, “It’s a darned ramp, what’s the big deal?” And in reply I would forward you to The Ramp Project, and more specifically to their 64-page manual,<a href="http://www.accessnorth.net/cilnm/ramp.pdf" target="_blank"> “How to Build a Wheelchair Ramp for Home Accessibility.”</a> (The Ramp Project website, which usually lives at wheelchairramp.org, was down at the time of this writing.) It turns out that there are multiple considerations to take into account when building a safe, functional ramp.<br />
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The most important consideration is slope; a gentler slope makes for a safer, more accessible ramp. As I explained above, though, a gentler slope requires a longer run, which in our case necessitated a switchback design with a landing halfway down. Even with a switchback design, though, the ramp layout had to allow for sufficient setback from the property line and the public sidewalk as required by state building code.<br />
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Fortunately, we have a sane building inspector here, and he gave us the okay for a slope that was less than the 20:1 required by state code (which the code allows him to do for private residences), and he also gave us a pass on the setback from the public sidewalk.<br />
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Another consideration I hadn’t thought of before the building inspector pointed it out was that you need a flat landing at the top for the wheelchair to rest while the door is being opened. Duh, right? But that meant adding a landing to the top of the ramp—over our existing stairs, which was another complication to figure out. (We opted to make it flush with the top step.)<br />
<br />
When all was said and done, we ended up with plans for a wheelchair ramp that required:<br />
<ul style="text-align: left;">
<li>a top landing (5 x 8 feet)</li>
<li>a 16-foot section of ramp</li>
<li>a turn-around landing at the switchback (5 x 8 feet)</li>
<li>a 14-foot section of ramp</li>
<li>a concrete pad to get the wheelchair from the end of the ramp to the public sidewalk</li>
<li>stairs off the top landing so able-bodied people wouldn’t have to traverse the entire ramp to get to the front door </li>
</ul>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhAKzTr2-hvepI7my1aSuP3wPMYjrqYhJbMuJ5szf6vVosA_xrpteINYn8J-YFpiLPMCDLEWR2aD6ZjPoaqUAT1oKvAKxGU1ptQcVy5iQMg9sfARGDWdUQ2N4HCkD5ewMUgt4pSM624I_J5/s1600/RAMP+DESIGN.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="242" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhAKzTr2-hvepI7my1aSuP3wPMYjrqYhJbMuJ5szf6vVosA_xrpteINYn8J-YFpiLPMCDLEWR2aD6ZjPoaqUAT1oKvAKxGU1ptQcVy5iQMg9sfARGDWdUQ2N4HCkD5ewMUgt4pSM624I_J5/s400/RAMP+DESIGN.jpg" width="400" /></a></div>
<br />
Once we had the plans in place, we had to decide whether to build a ramp from treated wood decking (the most traditional route) or purchase a modular wheelchair ramp (made of aluminum).<br />
<br />
Our building inspector, strangely enough, suggested plywood over treated decking. But as The Ramp Project (and a couple of our builders) point out, plywood makes for lousy ramps. Cheap, but not safe or durable. It gets slick when it’s wet, and the layers separate under exposure to the elements.<br />
<br />
After considering the costs and benefits of each option, we decided to order a modular ramp.<br />
<br />
<h3 style="text-align: left;">
Why we chose a modular wheelchair ramp</h3>
Like the name implies, modular ramps come in sections; they’re lightweight, and relatively easy to assemble and disassemble. (The key word here being “relatively.”) That meant lower labor costs. More importantly, the relative “portability” of the ramp means that if we decide to move, it can move with us—we don’t need to build another ramp from scratch. (Theoretically you could also disassemble and reassemble a wood ramp, but the cost would be prohibitive.) Plus, if we ever find ourselves in a position where we’re no longer using it, the ramp can be disassembled and donated back to the county or to someone else who might need it.<br />
<br />
Had a wood ramp cost less than a modular one, our decision might have gone the other way, but in our case, the costs were relatively similar. Here’s a side-by-side comparison of the labor and materials costs for a wooden vs. aluminum modular wheelchair ramp. These numbers are taken from the winning bid for our particular ramp plans; the cost of the modular ramp is what we actually ended up paying:<br />
<br />
<table border="1" cellpadding="0" cellspacing="0" class="MsoTableMediumGrid3Accent5" style="border-collapse: collapse; border: none;">
<tbody>
<tr>
<td style="background: #4BACC6; border-bottom: solid white 3.0pt; border: solid white 1.0pt; padding: 0in 5.4pt 0in 5.4pt; width: 159.6pt;" valign="top" width="319"><div class="MsoNormal">
<br /></div>
</td>
<td style="background: #4BACC6; border-bottom: solid white 3.0pt; border-left: none; border-right: solid white 1.0pt; border-top: solid white 1.0pt; padding: 0in 5.4pt 0in 5.4pt; width: 159.6pt;" valign="top" width="319"><div class="MsoNormal">
<b><span style="color: white; font-family: "Georgia","serif";">Wood
ramp (using treated deck lumber)</span></b></div>
</td>
<td style="background: #4BACC6; border-bottom: solid white 3.0pt; border-left: none; border-right: solid white 1.0pt; border-top: solid white 1.0pt; padding: 0in 5.4pt 0in 5.4pt; width: 159.6pt;" valign="top" width="319"><div class="MsoNormal">
<b><span style="color: white; font-family: "Georgia","serif";">Aluminum
modular ramp</span></b></div>
</td>
</tr>
<tr>
<td style="background: #4BACC6; border-bottom: none; border-left: solid white 1.0pt; border-right: solid white 3.0pt; border-top: none; padding: 0in 5.4pt 0in 5.4pt; width: 159.6pt;" valign="top" width="319"><div class="MsoNormal">
<b><span style="color: white; font-family: "Georgia","serif";">Materials</span></b></div>
</td>
<td style="background: #A5D5E2; border-bottom: solid white 1.0pt; border-left: none; border-right: solid white 1.0pt; border-top: none; padding: 0in 5.4pt 0in 5.4pt; width: 159.6pt;" valign="top" width="319"><div class="MsoNormal">
<span style="font-family: "Georgia","serif";">$3,885</span></div>
</td>
<td style="background: #A5D5E2; border-bottom: solid white 1.0pt; border-left: none; border-right: solid white 1.0pt; border-top: none; padding: 0in 5.4pt 0in 5.4pt; width: 159.6pt;" valign="top" width="319"><div class="MsoNormal">
<span style="font-family: "Georgia","serif";">$3,689</span></div>
</td>
</tr>
<tr>
<td style="background: #4BACC6; border-right: solid white 3.0pt; border: solid white 1.0pt; padding: 0in 5.4pt 0in 5.4pt; width: 159.6pt;" valign="top" width="319"><div class="MsoNormal">
<b><span style="color: white; font-family: "Georgia","serif";">Labor</span></b></div>
</td>
<td style="background: #D2EAF1; border-bottom: solid white 1.0pt; border-left: none; border-right: solid white 1.0pt; border-top: none; padding: 0in 5.4pt 0in 5.4pt; width: 159.6pt;" valign="top" width="319"><div class="MsoNormal">
<span style="font-family: "Georgia","serif";">88 hours |
$4,225</span></div>
</td>
<td style="background: #D2EAF1; border-bottom: solid white 1.0pt; border-left: none; border-right: solid white 1.0pt; border-top: none; padding: 0in 5.4pt 0in 5.4pt; width: 159.6pt;" valign="top" width="319"><div class="MsoNormal">
<span style="font-family: "Georgia","serif";">38 hours | $1,850</span></div>
</td>
</tr>
</tbody></table>
<br />
<br />
Two big caveats about these numbers. <br />
<br />
First, the labor costs in this case included the cost of pouring cement for the bottom landing and building new wood steps on the front of the house to replace the ones covered by the top ramp landing. Labor costs for a less complicated design would be significantly less; we estimate it took about a day—maybe eight to ten hours—for our contractor (him and a helper) to actually assemble the modular ramp.<br />
<br />
Second, we discovered that the cost of modular wheelchair ramps vary widely. <br />
<br />
<h3 style="text-align: left;">
Choosing a modular wheelchair ramp</h3>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhshBaXueQJqw4qVJoeitLOJ7bvOwLqBxV-iKwhy6rLcrziQMahS2Se-xTE7WSQyEGzVpaIZzTGK14gBNdYCMHLmQWJ17DGNV6NupwQyLm72PQQOzyouK33Xs8p8phfjlWU2iQa19GBtAeS/s1600/007.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhshBaXueQJqw4qVJoeitLOJ7bvOwLqBxV-iKwhy6rLcrziQMahS2Se-xTE7WSQyEGzVpaIZzTGK14gBNdYCMHLmQWJ17DGNV6NupwQyLm72PQQOzyouK33Xs8p8phfjlWU2iQa19GBtAeS/s400/007.JPG" width="300" /></a></div>
There are a few different types of modular ramps available: PATHWAY and Titan are made by <a href="http://ezaccess.com/products/products.asp" target="_blank">EZ Access</a>, while the Modular XP is made by <a href="http://www.pviramps.com/" target="_blank">Prairie View Industries</a>. Both are sold by local dealers, as well as by several online vendors.<br />
<br />
We compared prices for the two systems at <a href="http://www.discountramps.com/modular-ramp-pricing.htm">DiscountRamps.com</a> and <a href="http://www.emedramps.com/">eMedRamps.com</a>. At the time of this writing, DiscountRamps.com was listing the cost of an 8-foot section of the EZ Access ramp at $743 (without handrails or supports), while an 8-foot section of the PVI ramp was quoted at $600 (with handrails and supports). At eMedRamps.com, the price of an 8-foot section of the EZ Access ramp was $739 (with handrails), while the cost of an 8-foot section of the PVI ramp was $600.<br />
<br />
Both manufacturers will send you a list of local dealers on request. There’s a big advantage to going with a local dealer in that typically they will come out to your site and draw up plans for you and then help you order the right parts. The downside, of course, lies in the price tag.<br />
<br />
We contacted Prairie View Industries for a list of our local vendors, one of which turned out to be a chain hardware store with a location in our town. When we contacted the store, though, they seemed totally unfamiliar with the product (we had to tell the manager that they were listed by the manufacturer as a dealer), and they had to contact their corporate office for a price quote. The price they came back with for our 28 feet of ramp, plus two landings? $8,100. And that didn’t include on-site consultation or delivery to the building site.<br />
<br />
By contrast, eMedRamps.com shipped the same ramp to our builder for $3,689. (They were running a sale at the time, plus the cost per foot goes down as the length of the ramp increases.)<br />
<br />
As for the local vendor, I actually followed up with them twice to make sure their quote was accurate; apparently it was. I won’t mention what I think of a company that feels it needs to charge a $4,000 markup for what amounts to ordering a product they don’t have in their inventory and having it delivered to their store.<br />
<br />
We thought twice about going with the cheap option (would the quality or service be inferior?). We <i>were </i>a little nervous about getting the order right, but I called customer service at eMedRamps.com and they were good about answering all my questions. When the shipment came (a little more than a week after placing the order), it turned out we were missing some top railing pieces, and they offered to ship the missing pieces overnight. (The builder sensibly declined, since it would have cost eMedRamps.com hundreds to do so; we got it a few days later anyway.)<br />
<br />
<h3 style="text-align: left;">
Installing the ramp</h3>
It took our builder about 36 hours to complete the entire project; much of that time involved pouring the new sidewalk and building wooden steps on the front of the top landing, plus putting in wood rails and a small wood platform next to the top landing where there was a gap between the landing and the house.<br />
<br />
It looked like it took our builders about 8-10 hours to actually assemble the ramp; much of that time was taken up with leveling the ground and adjusting the legs so the slope would be right. Both manufacturers tout quick setup times, as do some local vendors (30 minutes, claims one!), and that might be the case for experienced professionals who are setting up the same system over and over again. Each of the three guys who bid on our project was extremely skeptical of those claims. If you’re setting up a modular ramp for the first time, keep in mind that it will take some time to familiarize yourself with the instructions and how everything goes together.<br />
<br />
You can get a sense for how these ramps assemble by watching each company’s assembly video:<br />
<br />
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<iframe allowfullscreen="" frameborder="0" height="360" src="//www.youtube.com/embed/B-KkVF_y6hA?rel=0" width="640"></iframe>
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<iframe allowfullscreen="" frameborder="0" height="360" src="//www.youtube.com/embed/cXIcn7vgW-M?rel=0" width="640"></iframe>
<br />
By October 31, the ramp was up and the concrete had been freshly poured (leading to worries about trick-or-treaters stepping in before it set up, which didn’t happen), and a few days later, Alex (and his siblings) were happily zooming up and down the new ramp. <br />
<br />
<div class="separator" style="clear: both; text-align: center;">
</div>
At about 13:1, the slope is still a little too steep for him to power up himself, but as he gains strength, it should become more manageable.<br />
<br />
And that is the conclusion of our Great Ramp Saga, which I hope we never have to go through again (I am already dreading how we’re going to disassemble it when we move someday). Many thanks to the Great Ramp Saga support group—Jim, Barbara, Laurie, our therapists (just kidding), and everyone who listened to me whine and complain about this ordeal.<br />
<br />
If you have additional or different information on installing a wheelchair ramp at home, leave a comment below and you, too, can become part of someone’s Ramp Saga support group.<br />
<br />
(P.S. ... our next ramp saga, getting over the bumpy thresholds at the entrances, should be much simpler thanks to <a href="http://www.amazon.com/gp/product/B001UP2UOS/ref=as_li_ss_tl?ie=UTF8&camp=1789&creative=390957&creativeASIN=B001UP2UOS&linkCode=as2&tag=creativehoney-20">this threshold ramp.</a><img alt="" border="0" height="1" src="http://ir-na.amazon-adsystem.com/e/ir?t=creativehoney-20&l=as2&o=1&a=B001UP2UOS" style="border: none !important; margin: 0px !important;" width="1" />
</div>
Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-3714417098673739269.post-12826380675640509842013-11-23T21:28:00.001-06:002013-11-23T21:28:42.563-06:00More practice standing against a wall! | CP Physical Therapy | Hold On Tight!<div dir="ltr" style="text-align: left;" trbidi="on">
Remember that video of Alex practicing standing against a wall a few weeks ago? Well, this has been one of his favorite PT activities at home ever since, and he has been getting better at it. Take a look:<br />
<br />
<br />
<iframe width="853" height="480" src="//www.youtube.com/embed/np6Q5dBzlwU?rel=0" frameborder="0" allowfullscreen></iframe>
<br />
By the way, the "big boots" he's referring to halfway through the video are the new boots that his sister got from the store--his mom was coming downstairs with them.<br />
<br />
The big question, of course, is whether this standing will eventually turn into walking. Maybe, maybe . . . there's a lot that goes into standing, and he's putting all the different pieces together. Besides being able to balance once he's up, he needs to learn how to move from a sitting or prone position into a standing position. We're trusting that the selective dorsal rhizotomy procedure that he will undergo this spring at Mayo will open the door for him to make big gains. Developing a sense of balance will be good preparation for the intensive work he will be doing next summer.</div>
Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-3714417098673739269.post-70581108800215175602013-11-15T20:32:00.002-06:002013-11-16T08:28:23.444-06:00Getting ready for the new wheelchair ramp by practicing with threshold obstacles | PT demonstration<div dir="ltr" style="text-align: left;" trbidi="on">
Once a month, Alex's school physical therapist does a home visit to teach us (parents and PCAs) different physical therapies. This month, she showed us how she's helping Alex "power over" threshold obstacles so he can get up ramps safely and efficiently -- a good thing, since we are installing our own ramp for him!<br />
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<iframe width="853" height="480" src="//www.youtube.com/embed/ZdvtV3yAyCw?rel=0" frameborder="0" allowfullscreen></iframe>
<br />
<br />
And here Alex is watching the workers assembling the modular aluminum wheelchair ramp in front of our house -- he jumped every time they used a power tool, which is why he's smiling!<br />
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<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg3X57dy5B7EQLhhQvudJ4wZkknwLx1NtmcFQzPNT1VFvgvTg9nrzIidCsQKUmRiiyAW4vs5OXiRgFJKDX7K2zE_xvwUD3PP8rCm7z7P17u3VuDMhMthsSvXAbUZmWdvejvbKjG6Nemj7IH/s1600/007.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg3X57dy5B7EQLhhQvudJ4wZkknwLx1NtmcFQzPNT1VFvgvTg9nrzIidCsQKUmRiiyAW4vs5OXiRgFJKDX7K2zE_xvwUD3PP8rCm7z7P17u3VuDMhMthsSvXAbUZmWdvejvbKjG6Nemj7IH/s640/007.JPG" width="480" /></a></div>
<br />
I'm working on a post and video about the construction and assembly of this wheelchair ramp. </div>
Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-3714417098673739269.post-16929614079805599972013-11-08T21:37:00.001-06:002013-11-08T21:38:09.727-06:00Adopting Alex is now Hold On Tight!<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjLSW4dQcfN3iViSxjgGq4nKYwnIAuW1ms1dN1-fSKOuaGmyQ3IUW_l9qc-lb-AG8eGZLr4NQNWdrSlAH_B114sSrVaI_rhq-HzSuSSXlbKvB5cbhmYAkYvhADUL-ZnAnCN-3igEzfm_Er8/s1600/002.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="480" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjLSW4dQcfN3iViSxjgGq4nKYwnIAuW1ms1dN1-fSKOuaGmyQ3IUW_l9qc-lb-AG8eGZLr4NQNWdrSlAH_B114sSrVaI_rhq-HzSuSSXlbKvB5cbhmYAkYvhADUL-ZnAnCN-3igEzfm_Er8/s640/002.JPG" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Alex wearing his "Hold On Tight" t-shirt, given to him by his bus driver (right).</td></tr>
</tbody></table>
Just a quick note to let you know that we're updating the Adopting Alex blog and Facebook page. A good eighteen months after actually adopting Alex, it seemed like it was time to move on.<br />
<br />
But as we contemplated how to do that, we realized that people are still interested in Alex's story -- the old friends who helped us adopt Alex in the first place, the new friends who have helped with his transition, and people we don't even know who have stumbled across his story online. So rather than delete the old Adopting Alex blog or let it go stale, we decided to give it a facelift.<br />
<br />
Besides giving the website a new look, it now has its own address: <a href="http://www.holdalex.com/">www.holdalex.com</a>. (Don't worry, all your old links will automatically redirect.) We've also started a dedicated <a href="https://www.youtube.com/channel/UCGt7NCa_9UYvtgI3eBumXAw" target="_blank">Hold On Tight! Youtube channel</a> for people who want to follow Alex's progress that way without being subjected to random video of our family birthday celebrations. <a href="https://www.youtube.com/channel/UCGt7NCa_9UYvtgI3eBumXAw" target="_blank">Visit the channel </a>to subscribe.<br />
<br />
Those few hardy souls who are braving the wilderness of Google Plus can subscribe to the <a href="https://plus.google.com/b/109282053936425476179/109282053936425476179/about" target="_blank">Hold On Tight! Google Plus page</a> to get updates from this blog.<br />
<br />
We'll try to update weekly for as long as people seem interested.<br />
<br />
Oh . . . wondering about the name change? Over the summer, Alex attended an extended academic year program through the public school system to help him catch up, academically and developmentally. Well, his bus driver during that month-long program was so tickled that Alex would shout "Hold on tight!" every time the bus went over a bump, he actually had a t-shirt custom-made for Alex with that phrase on it. It was an endearing gesture . . . and an apt description for the amazing journey Alex -- and our whole family -- has been on.<br />
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Hold on tight, folks -- here we go!<br />
<br />Unknownnoreply@blogger.com3tag:blogger.com,1999:blog-3714417098673739269.post-8229640080081134312013-11-06T21:29:00.003-06:002013-11-06T21:30:11.708-06:00PT demonstration | Standing tall with support from a wallOne of the highlights of today's physical therapy session was seeing Alex stand on his own, without any equipment--well, except for the support of a wall. Get his "Joe Cool" act!<br />
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<br /><iframe width="853" height="480" src="//www.youtube.com/embed/JvHuzJNkAl8" frameborder="0" allowfullscreen></iframe>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-3714417098673739269.post-24128928674145352862013-11-06T21:28:00.002-06:002013-11-06T21:30:27.093-06:00PT: Moving from a quadruped position to a tall kneeling positionAlex demonstrates moving from a quadruped (hands and knees) position to a tall kneeling position, with assistance. The purpose of this exercise is to develop the back extensors and greater trunk control.<br />
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<iframe allowfullscreen="" frameborder="0" height="480" src="//www.youtube.com/embed/WEBL2r53Y10" width="640"></iframe>
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Besides having "high tone" in his leg abductor muscles,Alex has <a href="http://www.mayoclinic.com/health/dystonia/DS00684" target="_blank">dystonia </a>in his trunk muscles--yet another consequence of his spastic cerebral palsy.<br />
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Notice how Alex is interested in dumping those pieces and cleaning them up again! His PT is right when she says he's a great cleaner-upper at home! Unknownnoreply@blogger.com3tag:blogger.com,1999:blog-3714417098673739269.post-89594814956167313372013-10-07T22:38:00.005-05:002013-10-07T23:00:10.816-05:00This was Alex 16 months agoYou know, after more than a year of having "Sasha" home, it's sometimes hard to remember how much progress Alex has made . . . until you go back and look at those orphanage videos. So, just take a few minutes to compare these to the videos in the last post (from his birthday):<br />
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<iframe allowfullscreen="" frameborder="0" height="360" src="//www.youtube.com/embed/WUGBjuwG87A" width="480"></iframe>
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<iframe allowfullscreen="" frameborder="0" height="360" src="//www.youtube.com/embed/Mue7mw2Cscs" width="480"></iframe>
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It's simply amazing what sixteen months have done to transform this boy. Notice how very childlike he seems -- especially notice the fascination with dropping the wand in the first video, a sort of infantile developmental task. Notice his environment -- very nonverbal. He's spoken to, but rarely speaks; when he did, his Russian was almost always deemed unintelligible by Russian speakers both in country and back here. It's amazing to compare this practically nonverbal child of sixteen months ago to the kid who chats up a storm with anyone who will listen today.<br />
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If anyone ever doubts the importance of giving kids the right environment in early childhood, they should take a look at these videos and then compare them to the kid we have today -- the kid who has emerged thanks to the dedication of an amazing team of professionals in the ISD 861 school district, his amazing PCAs, and the loving influence of his siblings.Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-3714417098673739269.post-5861962001209383812013-09-25T20:56:00.000-05:002013-09-25T20:56:41.597-05:00Celebrating Alex's seventh birthday with four videosIn celebration of Alex's seventh birthday, four videos of the birthday boy in full thrall.<br />
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To start off, here he is in bed in the morning, in a good mood:<br />
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<iframe width="640" height="360" src="//www.youtube.com/embed/1R-JrRVMuXo" frameborder="0" allowfullscreen></iframe><br />
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And then getting off the bus, with a birthday hat from school, and with two of his PCAs to greet him, along with a new babysitter and family members -- a regular old party down on the curb (I just love these helpers of his, by the way!):<br />
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<iframe width="640" height="360" src="//www.youtube.com/embed/KFCnZm6F9bc" frameborder="0" allowfullscreen></iframe><br />
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And singing the birthday song:<br />
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<iframe width="640" height="360" src="//www.youtube.com/embed/vVDXOihRWyc" frameborder="0" allowfullscreen></iframe><br />
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And finally, a video from earlier -- him practicing his colors. He is learning to count and to identify letters as well:<br />
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<iframe width="640" height="360" src="//www.youtube.com/embed/jKtvzdfVVCM" frameborder="0" allowfullscreen></iframe> <br />
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<br />Unknownnoreply@blogger.com5tag:blogger.com,1999:blog-3714417098673739269.post-47934549632688245542013-08-08T22:45:00.002-05:002013-08-08T22:48:35.556-05:00Medical updatesHi everyone, Susan here.<br />
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We wanted to update people on a number of medical realities for Alex.
We decided mid-summer to switch Alex's care from Gillette to the Mayo Clinic. Alex's PM&R doctor was leaving Gillette, we were burned a few too many times by their bureaucracy, and the length of the trip was wearing us out. We investigated Mayo with some caution, because even though Mayo has a deserved international reputation for excellence, that doesn't mean they are the best at everything (shh, don't tell them :-) ). We were bracing to stick it out with Gillette if it was better for Alex. But we needed to explore Mayo as a possibility.<br />
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Well, short version is we're really pleased. We were set up with a neurologist, Dr. Bodensteiner, and he has referred us to other physicians within Mayo. Appointments were set up very quickly, and they have a tentative plan for Alex going forward.<br />
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1. First, Alex had an MRI...something that would have been in his future soon at Gillette as well. The idea was to look at the brain damage (CP assumes that) and try to measure his possibilities for improvement. He has significant brain damage in the area that controls mobility, and he said that's not surprising, because that part of the brain is developing at 30-34 weeks gestation and Alex has born at 31 weeks. It points to some kind of traumatic premature birth and a lack of oxygen and/or blood flow for a time. The mild surprise was that Alex has no cognitive brain damage, at least none visible through an MRI. As the doctor said, that is very encouraging for his future development. The other surprise was that Alex has some brain damage in an area called the pons...which controls movements of the mouth (speaking, chewing, swallowing, etc.). He said it was consistent with being severely dehydrated and then too quickly rehydrated after birth. It's an after birth sort of injury, not related to CP. It doesn't seem to effect him much if at all, which is good.<br />
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2. The Mayo PM&R team want to move Alex toward a possible rhizotomy, probably in June 2014. They are not sure he is a candidate for it, but they think it is the best possible way to address his spasticity issues, since the Phenol and botox are not having the effects any of the docs (at Mayo or Gillette) would like. He's also on Baclofen now, and its questionable how much of an impact it is making. Everyone there is resisting the idea of a Baclofen pump, which is fine by me. But he needs to go through a few assessments before the decision to do the rhizotomy is cast in stone. Basically, they want to see that he isn't too dystonic, because the surgery doesn't address that.<br />
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The way I understand it, the surgery isolates the nerves that deliver the faulty brain message to go spastic in certain places, and those nerves are cut. It's all day major surgery, and the rehab time at Mayo is three week in hospital/rehab center. You basically relearn everything from the waist down. You can see it isn't something done lightly. But beyond Alex not making progress walking, the spasticity is such that it could really harm his hips--he already has some dysplasia from the spasticity.<br />
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Also, I'm no expert, but I have heard there is a window for this surgery, and Alex is in it now. So while it would be great to delay this until he is considerably older, that won't work.<br />
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We're very happy with the way Mayo is listening to us but also taking initiative and offering a plan and how to get there. We always liked and appreciated the doctors at Gillette, but everything has been so much easier to get in place here at Mayo...and we've been very impressed with the doctors here too.<br />
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Did I mention our PM&R doctor adopted a child from Russia? :)<br />
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So: sometime in the next 4-6 weeks Alex will get Phenol and Botox again to do a gait analysis with his tone "quieted down," to see if he is a candidate for a rhizotomy. The decision will be made after a big pow wow of doctors across disciplines examine Alex (a spasticity clinic).<br />
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A lot of serious things going on, but all mixed with hope.
Unknownnoreply@blogger.com4tag:blogger.com,1999:blog-3714417098673739269.post-34198512887817265622013-07-15T21:26:00.001-05:002013-07-15T21:26:18.617-05:00Alex hits a new milestoneWell, Alex has been with us a little more than a year now. We just returned from a two-week long trip to Alabama (by car, five kids, you can imagine), and he has definitely gone through another one of those "developmental leaps." We came back and all the people who usually see him were just remarking on how much he had changed. In particular, we're noticing that his vocabulary is much expanded, and he is much more conversational now than previously. Also, his fine motor skills have improved greatly. When he first came to us, he didn't know what to do with a LEGO block -- he'd throw it, but he couldn't make one stick. Now he loves playing LEGOs as much as possible. Take a peek:<br />
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<iframe width="480" height="360" src="//www.youtube.com/embed/0mTY1FkjsRY" frameborder="0" allowfullscreen></iframe>Unknownnoreply@blogger.com4tag:blogger.com,1999:blog-3714417098673739269.post-19349047218215184422013-04-16T22:26:00.003-05:002013-04-16T22:26:59.704-05:00Alex riding his new bike!Alex received a new adaptive tricycle this week...an AmTryke Proseries 1512, to be exact. Two generous donors helped us with the expense. Alex has been very excited to ride it every day, no matter what the weather is (spring having decided to not show up this year, apparently). And as you can hear in the video, it is "excellent" physical therapy for him. (We were lucky to have his school physical therapist on hand for the inaugural ride, along with Julie, one of his personal care attendants.) Plus, with the help of his awesome personal care attendants, he has been taking it all over the neighborhood, which is tremendously empowering for him. Here's a video of the inaugural ride:<br />
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<br /><iframe width="480" height="360" src="http://www.youtube.com/embed/ur-dyL3o27A" frameborder="0" allowfullscreen></iframe>Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-3714417098673739269.post-83121126123794921522013-03-24T23:03:00.004-05:002013-03-25T08:23:30.213-05:00Alex is going to Madison....You want to know what has been going on the in world of Alex the past three weeks?<br />
<ul>
<li>potty training, off and on (mostly off) </li>
<li>acquiring a wheelchair </li>
<li>acquiring a walker </li>
<li>trying out canes for standing/walking </li>
<li>getting appts for minor surgery June 7th </li>
<li>casting for new braces since he grew out of the old ones </li>
<li>a new OT </li>
<li>hiring new PCAs to cover summer hours </li>
<li>figuring out if we can buy/fundraise an adaptive trike </li>
<li>buying earphones and an MP3 player that doesn't blast little ears out
and ...</li>
</ul>
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...the one I'll mention briefly tonight, that Alex is going to Madison Elementary School. You local people know all our kids go to a charter school that does Montessori method, a great little PreK-8 school named Bluffview. We assumed all along Alex would go there. Our hope is that in time he will go there. We really went back and forth on this...Madison is the school in town set up for special education (which Alex is still going to need, at least for many more months, if not forever) and all the physical therapy/ occupational therapy/speech therapy that occurs in Winona area public schools is really rooted at that school. At Bluffview, the school would have to bring new PTs and OTs and STs in, and because they have a different arrangement (Winona district hires their own therapists and places them in the schools, while the charters in town have to hire therapists out of a program that works for the regional area), it wasn't clear how easily Alex's pretty darn significant needs would be met. What we were certain of was that Bluffview would try, and try hard. But they are dealing with realities they can't entirely control either. So Jerry visited Madison, a small older school about one mile or less from our house. It's where our kids would have gone if not Bluffview (or the Catholic schools). The special ed teachers are very nice and have been working at Madison a very long time. The therapists would be the same ones he sees now, and they're GREAT. The kindergarten teachers both seem very nice and welcomed Alex at last week's "round up" with "we've heard a lot about you, Alex!" Alex, I must say, was polite but nonplussed. He liked the gym.:)<br />
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I think and hope Alex will like it there. Honestly, there are no real red flags, and it is clear they are the best set-up for Alex's needs (sort of one stop shopping for special needs kids in our town). Everyone we have talked to there has been very supportive, and that goes a long way. But it's also hard because 1) It feels a little weird to have four kids in one elementary school, and the fifth in another--like Alex is living in a parallel universe (again?) 2) We've never had a school other than Bluffview, which we know like the back of our hand now. I looked at the Madison classrooms and couldn't help thinking "<i>Really</i> not Montessori." But the things that Montessori does so well--sensory learning, self-initiative, etc.--are likely not to be Alex's strengths. I mean, we're not sure he will be able to write well ever, but he seems to have enough control to type...or at least dictate through a voice recognition program. He is likely to be more technology enabled than Montessori encourages. Not that they wouldn't allow that--but if Montessori's strengths are not Alex's, at least in lower elementary, well, what's the point?<br />
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This is all to say that Madison has a reputation as a very good elementary school here, and we've met good people. I think Alex will do OK, although I still have a hard time seeing him in kindergarten. But I'm still a little sad about it. In any case, if it doesn't work, we'll go to Bluffview and see what we can work out.<br />
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--SusanUnknownnoreply@blogger.com2