Hereditary Spastic Paraplegia

Done at last! Done at last! Thank God Almighty! It is done at last!!!
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Looks like my post below, from this morning, worked like washing your car before it rains! I posted that he'll never call with the test results, and he calls! Yay!
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The blood tests for the last two things he was checking for did, in fact, come back negative today. That was the last of the tests. My doctor told me just now that I am now diagnosed with Hereditary Spastic Paraplegia (HSP).
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I know it's odd to be celebrating receiving a diagnosis of a degenerative uncurable cripping disease, but I've already had really serious symptoms of the degenerative uncurable cripping disease for a year and a half. I've already adapted to the knowledge that I have such a disease, so it's a celebratory thing now to actually have a name for it! Yay!
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I'd like to thank the Academy, I'd like to thank God, and I'd like to thank my friends and family all over the country and world who have been there for me, and have prayed that I would someday get diagnosed. Thank you!!
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It's so nice to know what I have. I was pretty darn sure that these last blood tests would be negative, so I joined some national HSP clubs and email lists like a month ago, and have met lots of other people online who have this disease too. It's nice to have a disease with a home. I just can't go on anymore telling people that I don't know why I can't walk. It's a pretty big thing, and to not know why, was also pretty big. I thank God that that part of my life is over. :-)
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Hereditary Spastic Paraplegia isn't really one disease, it's a category of similar diseases. We'll never know which version I have. There are many, and there’s no way to test for them all with current medical technology. So, one person with HSP can have symptoms a little different from another, because of the variety of the types of HSP.
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The condition is genetic, which means it’s simply in my DNA. There was nothing anyone did that could have or did cause it. I was just born to be a paraplegic. Isn’t that a weird thing? I never used to know that could happen to a person.
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If you want to research it more, this is a good page of information:http://www.sp-foundation.org/hsp.htm.

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There is also a brief description here: http://www.ninds.nih.gov/disorders/hereditary_spastic_paraplegia/hereditary_spastic_paraplegia.htm

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The thing that is going wrong, in technical terms, is: "axonal degeneration in the corticospinal tract". This is permanent nerve breakdown in the portion of the brain and brainstem (and spine in some people) that control voluntary movement. Everyone has genes which make the proteins needed to keep nerves and axons between the nerves functioning. My genes were programmed to stop providing some of those proteins as I age. Therefore, some of the nerve signals to move can’t get through.
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There is no treatment or cure for HSP. All I can do is take anti-spasm medication, which I'm already on, and get mobility equipment, which I took care of a long time ago. That's it. Just get used to it and get on with life.
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I got worse three times last year, which was fast. That’s why I went from walking to wheeling in less than six months. Then it was stable for a long time. Over the month of July just now, I've gotten worse again. This will keep happening the rest of my life, though it used to happen more slowly (less often) when I was younger, and will probably slow down again in the future. Apparently it’s normal for the disease to really manifest itself when people are in their 20’s, 30’s, or 40’s. I’m 35, now, and it’s been really affecting my life for about 7 years now, so I’d say that’s right on.
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Now, my torso is as effected as my legs are. I can't sit up without support for more than a few seconds anymore. I used to be equivalent to like a T10 paraplegic, but now I’m like a T1 paraplegic. Incomplete, of course. I can still feel everything, and there’s plenty of moving I can still do. I even take a few steps every morning. I've ordered some taller back posts for my chair, and we've adjusted how my wheelchair gets into my car, and I use my scooter more around the house now. Basically, I've adapted again. :-)
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Nothing Yet

Well, I don't know what's going on with the doctor now.

The blood test should have taken 1-2 weeks. Today marks 3 weeks since I gave the blood for it.

Monday I called my doctor, and he said he checked Friday and that day, Monday, for results, but they were not there yet. He promised he would call me back Tuesday or Wednesday and let me know if he had received results yet.

By Wednesday afternoon, he had still not called. I called the lab that my bloodwork was sent to. They weren't able to tell me the results, but they were able to tell me that they faxed the results to my doctor on Monday, two days prior.

Then I called my doctor again, to make sure he knew that I knew he'd had the results for 2 days now. He got mad, said he was very busy, and that the lab where he picks up results already closed at 12:30 that day, so he'd get them tomorrow. He promised to call me Thursday with results.

Now, it's afternoon on Thursday. 3 weeks after blood was given. Over 3 days since the results were faxed to my doctor, and the third day that my doctor has "promised" to call me.

I kept not posting here to my blog because I figured that at any moment in the last 1.5 weeks I would have that damn test result. But alas, I do not. So, I thought I'd just update you anyway.

It has been almost a year since I first went to a doctor to try to get diagnosed. It was too much for me after a while, I was at my doctor limit, like I am now, so I took a break. Not including that break in between doctors, I've been seeing doctors and getting tests and waiting for results for 179 days so far. That's 6 months! I've been a chair user for 14.5 months, so I'm already used to it and fully adapted, and I just want to get this darn diagnostic stage over with. Homeschool is starting up, I need to get on with my life. 6 months and still waiting! Could you imagine how it would be on nationalized medicine??!! I'd probably literally never get diagnosed.

I really want to get this over with. I have no more energy for this, it must end soon. Please hope with me that it ends really soon! Like that he calls me back this week!! It's not too much to ask, I don't think.

Thank you!! :-)

Fireworks

Here's a great video. You can't see him, but it's Sam with a sparkler in each hand, while spinning in circles! We had a fun 4th of July! :-)

Doctor Phone Call -- Good Progress

My doctor just called me. He found the amphysin blood test he was looking for, and how to get it processed, so he wants to send me for that. We talked about what else it could be, and what comes next. I pushed him to think of things other than Stiff Man Syndrome, this last test, because it's really looking like I don't have it, since the first and most common blood test for it was negative, and I want to know what we do next. So I asked him what else we're going to do.

We talked about Hereditary Spastic Paraplegia (HSP), and how those symptoms really match me better than anything else there is. It's a mostly untestable disease, so he wants to eliminate everything else. He does think I have HSP, though, especially because I have two major markers for it: 1) two people in my immediate family (sister & brother) have scoliosis, and 2) I have incredibly highly arched feet. Scoliosis genetically runs in the same families as HSP. And my podiatrist a few years ago said I had the most highly arched feet he had ever seen (and he looks at feet all day, every day!!!). Highly arched feet is a sign of HSP. So, those things, combined with the fact that my symptoms match it exactly, really got my doctor excited about HSP just now, and he said it is a very possible diagnosis.

His only hesitation before he declares that I have HSP is that we eliminate the one remaining blood test for Stiff Man Syndrome. Diagnosing HSP is all about eliminating everything else. And we've done that! Muscles, MRI for brain and full spine, all Autoimmune Tests, Peripheral Nerve tests, everything!! So, he's going to mail me the lab paperwork, and next week I'll go to the hospital to give blood for that last test. Approximately two weeks after that, he should have the results, and then we'll know.

Just to tell you why I'm so sure that test for Stiff Man will be negative, 1) the symptoms really don't match me, and 2), 85% of the people with stiff man test positive in the blood test I already took, and was negative on, and only about 1.7% of the people with stiff man test positive on this second blood test. So, the odds of me still having this disease are bottomed off the chart, they're so low.

This is why I so wanted to ask him what is next, because it's something we needed to get ready for. So, it was a great conversation. At least I won't have to get a babysitter next week for a doctor's appointment, that's nice. I can take the kids with me to the hospital, easy.

So, just to introduce HSP to you a little.... it isn't one disease, but it is a CATEGORY of diseases. Genetic diseases. Currently, there are over 30 varieties that gene tests can be done for. There are also a very large number of other varieties that can't be tested for. So, a person could test negative on the first 30, and still have one of the many other untestable forms of HSP. The other problem is that each of the genetic tests for the 30 known types run about $6,000 each, my doctor tells me. Unfortunately, I don't have the kind of insurance that will allow me to pursue that.

If you want to research it, this is a good page of information: http://www.sp-foundation.org/. Some pages that describe it, I've found, describe me exactly, and other webpages are not quite on. This is because, again, it's a category, and there are slight variations in the different diseases.

The thing that is going wrong, the techincal terms, are: "axonal degeneration in the corticospinal tract". This is permanent nerve breakdown in the portion of the brain stem that controls voluntary movement.

There is no treatment or cure for HSP. All I can do is take anti-spasm medication, which I'm already on. That's it. Just get used to it and get on with life.

Hereditary Spastic Paraplegia is genetic, passed down from my family, but appears to be very rare in my family even, since so one we know of has anything like it. So, that's really good news, meaning it most likely won't get passed down to my kids or grandkids. It'll probably just be recessive for many, many generations, or maybe Brian's genes will knock it out of the gene pool completely. :-) Either way, no worries there. Big relief.

It's an incredibly rare disease. Because it's so rare, there isn't any research being done on HSP. There are a few tiny groups trying to raise money, but it's the more common diseases that get all the research money. So, maybe I was right, maybe I am like FDR, and have a disease that will be diagnosed someday, just not in my lifetime. I'm amazed right now, actually, with how accurate that analogy is turning out to be. Must have been inspiration from God, to help me understand everything! :-) Thank you!

So, this is excellent news, really! It means we're down to only two possible diseases. One more test, and then it'll only be one possible diagnosis. Yaaayyyy!!! Back in April, I prayed that I really wanted this done by the end of July, because we start homeschool every year on the first week of August! Wow, it looks like it's going to happen! It's a miracle!!

Well, that's it for now. It'll be about three weeks, I estimate, until that last test result comes in, but I gotta tell ya, it's such a relief to know that testing is almost coming to an end!!! I did the math, and with appointments, testing, and waiting, I've been actively pursuing this for 5 months now! I look forward to a break. :-)

I can really feel the help of all of your prayers and thoughts for me. I'm so happy we're at this point, and that we're almost done. And I'll actually know what's wrong with me. Thank you, again, to everyone!! I'll keep you updated as more happens. :-)

What Do We Do Next?

It's been a week since my doctor called me with "I just want to do one more blood test, I'll call you and we'll set it up." I haven't heard from him. Lab tests are usually quite simple, and can be ordered like a prescription -- just write it on a piece of paper, then I go do all the legwork, like finding a lab, etc.

I think what's happening is that he can't find the test. I don't think it exists. I can't decide, as I watch from the outside and guess, whether he's lost the name of the thing he's testing for in translation (he's from South America and has a strong accent), so maybe he's just saying the name of the test wrong for English or something -- or, if the thing he wants to test for just isn't something people test for anymore (he's also really old), maybe that test was eliminated in favor of a more accurate test or something.

Anyway, that my pure speculation, as I wait. So, I called the office today and requested an appointment. I'm actually hoping he forgets about this blood test and moves on. I say this because I don't think the test exists. I've looked it up on the internet, with his spelling and other spelling variations, and can't find it!! Seriously, how many things exist and are no where on the internet. I've found some things that are similar in word, but are pronounced completely differently. Those things merely test for Stiff Man Syndrome, which he already tested for and got a negative result.

So, since we seem stalled here, my goal is to go see him face to face (where he can't cut off my questions abruptly on the phone like he did last week -- not his fault, he just has no social skills), and ask him if we should get that last test, if it's even possible, or it if really is redundant, or what. And then I can ask what we're doing next.

I don't think there are any more things to test, so I really want to ask him what we do next. We've covered spinal, autoimmune, and brain. That leaves the untestable, and there are a few of those that we'll look into next. The nurse says I may get an appointment with him next week. I'll let you know how it goes, of course! :-)

One More Thought

So, I was thinking last night and this morning. Seeing as how my doctor has now gone through every testable thing that even somewhat describes my symptoms, I was feeling at a loss, and not knowing where we would go next. It will be weeks before I can see my doctor again and ask him what comes next. I was wondering, what if he has no ideas? Should I get ideas for him?

Then I remembered that many months ago my doctor and I talked about how it could be Hereditary Spastic Paraplegia. This is a disease that you can't test for, you merely eliminate everything else. So, we just had to wait and run the tests. I had forgotten about it. However, now that we've eliminated everything else? hmmm. :-)

I looked up the condition again today, to remind myself about it, and was shocked at how exact the symptoms are to mine! Of all of these autoimmune and spinal cord diseases we've been testing for, none of them described me exactly, and most didn't even describe me much at all. It was quite a relief to read something again that really did describe me.

So, I called up my doctor's nurse, in attempt to get a message through to my doctor. I asked her to please remind him that we once talked about HSP, and to ask him to see if he thinks it describes me now that we've run all these tests.

Who knows if the message will actually get through, or what my real diagnosis really is. Time for more waiting. Someday, I'll get another appointment, and then I'll get to see what he thinks of all of this. :-)

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Thanks to all of my great friends and family for hanging in there with me through all of this! I couldn't do it without you and your support and your prayers!! Thank you so much. Lots of love back at ya!! :-)

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Oh --- and bonus points to anyone who knows where this picture (above) was taken! :-) I didn't take it, I found it on the internet.

My Doctor Called

Ok, my doctor called while we were at the pool today, so it was kind of an unexpected time for his phone call. He said the tests for the GAD antibodies and for the Voltage-Gate Potassium Channels (VGKC) antibodies both came back negative. So, good. More diseases we've eliminated. The problem is that he ordered a third test, for Amphysine antibodies. That test got lost in the runaround because no one knew where to send it to. Apparently even the Mayo Clinic doesn't do that test. So now my doctor and his staff are trying to find someone in the country who can do that test, then I'll go give them more blood again. Another 4 hours checking into the hospital just for a blood draw, and another at least two weeks waiting for test results.

The worst part is that I really don't think this one will be positive either. From what I've read on the internet, it looks like that test is for some disease in which you get stronger the more you try to move a muscle. I'm the opposite, getting weaker the longer I use a muscle. So, I don't think we're going down a very good path here. But what other paths are there? Are there any other paths? Maybe I should just get used to no diagnosis.

I've been thinking about FDR. He thought he had polio, but scientists now are looking at his symptoms and think he probably had Guillan-Barre' syndrome instead. There are a few differences, but his life was the same either way, with polio or with GB. There was no test when he was alive to identify what he had. When I first heard about this, I was shocked, thinking: "How could he go through his whole life thinking he had some disease he didn't have?" But now I'm thinking: "Maybe it doesn't matter what it's called. Having a more accurate diagnosis wouldn't have changed his life at all. Neither was treatable during his lifetime."

For me, maybe it won't matter what my diagnosis is either. Nothing that it could possibly be has any treatment or cure. So knowing probably won't change anything. Except maybe it would help when people ask "What happened to you?" Right now I keep getting tempted to answer: "Nothing. Nothing happened to me. I'm just living my life day by day, and I don't know why I can't walk." Of course, I'm sorry to all of my sweet friends and loving family when I don't have an answer for you. I've tried. I've taken many tests, and have been patient waiting for weeks between each of them. And I'm still taking them. But maybe there won't be an answer that we can find. Maybe whatever's wrong with me won't be discovered and diagnosable for another 100 years.

Doctor Update

Just writing to let you know that my doctor's office just called me. We sent my blood to the Mayo Clinic 2 weeks ago today to test for antibodies for rare neurological autoimmune diseases. We expected to get the results back by last week at the latest. However, they were calling to let me know that my doctor has not yet received my test results. He will call me when he receives them.

Sunday Night Family Bike Ride

A video I took while we were on our bike/scooter ride.

Stopping to let cars pass. The boys are on their bikes, and I'm on my scooter. I love that I can join them on their bike rides now! It's hard to tell, but Sam just got a new bike Saturday. Not only had he outgrown his old bike, but it was falling apart. The brakes weren't great, and always had a time-delay on them; and the chain came off at least once a day. Now, one day into using his new, bigger and fully functional, bike, he's riding like a pro again!

Oh, and Brian and the boys made a great house of cards yesterday, too. They used every card in the deck by the time they were done! What a great Father's Day! :-)


Sam and Brian.

Alexander.

Lots of natural sunflowers and great pillowy clouds decorated our evening!

Georgeous man!!

Videos -- Sam Being Sam

This is such a fun video. He was doing this naturally, so I started the camera rolling!

Sam playing piano. He plays it a lot faster in the second half of the video, lots of fun!

Time for School Pictures & Alex at Scout Camp

Here they are, the official school pictures for 2009-2010. I know you were waiting for them!

We do this every year, partially to have annual school pictures, like they would've had in public school. That's fun, because you can see them grow year by year. Also the pictures are for their Homeschool IDs, from homeschoolid.com.

Alexander

Sam

The boys together.

and, of course, the crazy picture!

Here's a great video Brian took of Sam going down a water slide at Cub Scout Day Camp two weeks ago.

Scouter Alexander!!

He earned belt loops in: Ultimate Frisbee

BB Gun Shooting

and Archery!

Scooter Thank You Letter

I just wrote my thank you letter to the people from whom I won the scooter in Dallas. I'm not trying to show off that I wrote a thank you letter or anything, I did it because I really wanted to. But I thought you guys might like to read it too, because it describes all of the new things I can do with my scooter, and I wanted to share with you how wonderful that is! :-)

Oh, also, it was a good chance to remind my kids of the Bible story about the 10 lepers, and how the one said thank you. Trying to be a good example for my kids 'n all. :-) I hope it worked. :-)


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A few weeks ago, my family and I attended Turning Point’s 2009 Dallas Extravaganza. At that event, I won the Pride Celebrity X electric scooter in the raffle! I am so incredibly happy that I went to this event, and that I won your scooter. I love it, and it is really raising my quality of life! I wanted to take the opportunity to fully express my gratitude that this item was available in the raffle.

I didn’t even know I needed a scooter, but now, after only two weeks, I don’t think I could live without it! I was the type who pushed my wheelchair hard, even over very rough terrain and extreme hills, and my shoulder was suffering for it. Now, I am able to use the scooter to get around outside without over-exerting myself!

I’m so happy it’s the outdoor type scooter. I even love the blue color! They are exactly what I would have chosen. Having a scooter to use outdoors is exactly what I needed. The two things I really miss since I became a wheelchair user a little over a year ago are gardening and long walks and bike rides. Your scooter has given them back to me!! Now I can move all around my hilly, bumpy lawn quickly and with ease, and I can access all of it to water my lawn! Last year all the grass died because I couldn’t access most of it. I love lawn watering, it was a fun hobby of mine, and I’m so thrilled to be able to do it again! I can also access all of my potted plants all over the property easily. Looks like I may have to really start gardening again. :-)

The other joy that has returned to me is long walks and bike rides. My husband and kids ride bikes around the neighborhood and on trails quite a bit. I was considering buying a handcycle, because I desperately want to join them, and I can’t push my manual wheelchair fast enough to keep up with them. However, I couldn’t afford a handcycle. Even if I could, I was concerned I’d hurt my shoulder more. Now I am going with them on all of their biking tours! I love it, I love getting out, and I love feeling like I’m part of the family again!

When my kids used to go bike riding without my husband, I had to have to follow them in my car in order to watch over them. That was just wrong! My kids and I are so happy that I’m “with them” now when they ride bikes! I’ve been heartbroken this past year thinking of all the things I will miss doing with my children. I don’t worry about those things anymore! I now chase my 9-year-old and 7-year-old sons around my yard and around my neighborhood! I feel like a mom again! We have been having so much fun playing together now that I can move around better. I love it!! I also look forward to taking my kids to grassy and rocky parks and trails around town. I’ve missed all of these things so much! Now I feel so free to be able to go almost anywhere I want to go outside, no matter the terrain, the incline, or the distance. Thank you so much for giving that back to me!!

I’m very impressed with this scooter and its technology. It’s very sturdy, and well made. I like that it’s rugged, and I’m very happy that I won an outdoor scooter, since that is mostly how I will use it. I also use it in my kitchen sometimes, such as when I am tired, and when I have to go back and forth carrying lots of items as I cook and clean. I can carry so much more with my new scooter. That basket is a lifesaver!

I am also impressed with how slow it can go. When I’m making tight turns in my kitchen and living room, it’s comforting to know I can take my time and get the turn right. It really helps me to not run into things too often. Very slow, or as I call it, Full Turtle Mode, is a very great invention. Don’t get me wrong, I use full rabbit mode as well. Many evenings I can be caught joyriding in my scooter at full speed up and down the street in front of my house! Whee!!! Sometimes, a wheelchair-bound person just needs a little speed!

Also, and this may seem like less of a big deal, but I’ve found it to be really wonderful: it’s nice to be able to move around in something other than my wheelchair from time to time! It’s such a freeing feeling to know that I have more than one set of wheels that I can use to get myself from place to place. And it’s all mine! Just knowing that makes me feel more mobile!
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As you know, that first year in a wheelchair is the toughest. I completed my first year only a month ago. Winning this wonderful scooter has also changed my life because, for the first time since that awful year began, something really good happened to me!! I can’t express how much that means to me, or how much I needed it! You have done a wonderful thing by donating this scooter, and I will never forget it!

Thank you so much for this great gift, and for the great sporting opportunities you have now provided for me and my family. We had a great time! I know you probably hand out many donations, but for me, this gift changed my life! I thank God for your kindness in offering this scooter to someone like me. Please know that your compassion and your thoughtfulness are fully appreciated!!

Sincerely,
Brooke

First Scooter Ride

Yes, I know, I really need to name this thing! I think I'm just going to wait, though, until the perfect name comes to me. Until then, we're just playing around and calling it whatever: Matilda, Josie, Denise, Shelly, whatever. It'll take time.

We still haven't completely worked out the seating, but it's already much better. But I couldn't wait anymore, I went on a fun scooter ride around the neighborhood last night!

I'm at the park, and I'm not exhausted! That's a first!!!

We've had some really beautiful sunsets lately.

Sunset at the lake behind the neighborhood. I haven't been able to get back here in 3 years!! I've missed it.

The scooter back home in my living room. You can kind of see the changes we're making to the seating and backing.

Oh, mom, I talked to my tax guy, and he told me what we'll need to do next year to claim it. It's all taken care of.

Sam's Piano Recital

Sam had his first piano recital last Sunday. He's been playing for six months now, and he's having a great time! Here is the video of the song he played for the recital....

Sam and his instructor, Tricia.

All of Tricia's students who performed that day. She teaches both children and adults.

Doctor's Appointment Today

Hey everyone. My doctor's appointment was today. Here's what happened, and what he told me.

He said the MRI results don't show anything. That the variances on it are just normal variety, like if someone's ears are different sizes on each side, it's normal, and doesn't mean anything.

He reperformed my EMG test. I had this done 8 months ago, but he didn't trust the results, which showed that my muscles were fine. He did it again, in MUCH greater detail. We were in his office over 2.5 hours, mostly doing the test. Result: yep, it's true, my muscles are still perfectly fine.

He said it's good to know. We have a lot of eliminating to go through, and that was one more thing we eliminated. He said I'm an interesting case, though he's sure I don't want to be interesting. :-)

The test stressed out my muscles and nerves a lot. It involves electric shocks and needles stuck into muscles, so it was painful. My leg was in full spasm mode by the end, even more than I've ever seen it before! So, now I'm tired and sore, but it's all necessary if we want to finish this.

Next, he wants to test my blood for very rare things. So rare, that I had to wait in the office for 1.5 hours while they called around town to find out which hospital could take the blood for these tests. We finally found one, so next, I went there.

I checked into the hospital, another hour. Then to the lab. They took I think it was 8 vials of blood. The trick is not the taking of blood, but that it then has to be sent to the Mayo Clinic to be processed. So, I guess that would be the on in Phoenix. The tests are that rare!

So, we've eliminated central nervous system, brain, and muscles. These new blood tests are testing for antibodies for autoimmune diseases that attack nerves.

The good news today is that I was able to get the doctor to give me a prescription for an anti-spasm medication, which I needed. I was on a weak over the counter version, so this should be nice.

So, that's it for now. I'm tired. I was at various doctors, hospitals, and pharmacies, and driving, from 9am to 5:20pm straight. It was a long day of diagnosing.

Appointment

For those of you who've been waiting with me -- and I know there are many of you -- I have a doctor's appointment! It's in a little more than a week, so I won't be able to tell you how it went until after that time. But, rest assured, I'll post here as soon as I get home from that appointment, and let you know how it goes.

The appointment will probably consist of him reading my test results, thinking out loud, asking me if everything's still the same, which it is, and then him ordering more tests. So, then, over the next few weeks, I'll take more tests at various locations, and then I'll wait for another appointment with him to review those results, maybe another month or so in the future.

Thanks for everyone's support and love.

Waiting is a killer...

Maybe the nurse shouldn't have told me that the doctor would be in on Tuesday. That's today. Probably only the 2nd day he's been in the office all month. Please, please, call me! She said she couldn't make an appointment with me until he was in the office --that's today!! I'm dying here, I can't walk, this is urgent. Call me and let me get a #$%#$n appointment!

No doctor's appointment yet

Just wanted to keep everyone informed. I called my doctor's office Tuesday, to see when they were going to finally let me make an appointment.

They called back today, and said "we'll call you when we're ready". Apparently this guy is doing something else with the rest of his time, like maybe teaching. Sometimes he only comes into the office once a month.

She said he'll be in next Tuesday, at which time she can ask him when to next schedule me. I hope it's not a month away.

One Year Today!! I made it! :-)

Zoe the wheelchair today, with new tires, rims, and wheels. Much better looking, and much easier to use!! :-)

Zoe last year, when new, with grey tires, spokes, and handrims.

I wanted to tell everyone that I'm celebrating my 1st anniversary as a wheelchair user today! I know celebrating might seem a funny way to look at it. I'm not celebrating that I have to use it, rather I'm celebrating how much I've been through this past year, and that I made it a whole year! I'm quite proud of myself! Yay!


At the grocery store today, as I was thinking about the "whole year", I realized that I'm no longer uncomfortable in the chair. I don't feel odd or unusual around standing people when I'm sitting. That's so wonderful to me. At first, I didn't even care what other people thought, because I was too busy feeling really uncomfortable myself, knowing it was so unusual, and such a big change. Now, it feels completely normal to me to be at this height, and to move around as I do, and I am very happy about being me again! So, it's been a good day!

Also, yesterday I got new wheels, which I've wanted for the whole year. It was finally time, financially, to get them. They are very lightweight, all black, black spokes -- only 12 spokes per wheel instead of 36 on my old wheels --, they roll a lot easier, easier to push, I have anti-marking black tires which I've also always wanted, and vinyl coated handrims, which are actually a medical necessity for me. My hands don't work well enough for me to grip the slippery aluminum handrims that I used to have. I got the aluminum last time because it was cheaper, so I hoped it would work, I've learned my lesson. I had to use gloves and wrap the rim in tape half the time, and all of the time I had to push while grabbing the rough, dirty tires. Yesterday is the first time ever I actually crossed a room without touching a tire! I'm so happy, my hands are finally being taken care of. It's so much better on my arms and my hands with these new wheels, tires, and rims.

Plus, look how pretty Zoe is now!! I've always wanted her to be all black with the purple accent. Now, she's all black, sleek, and looks great. Before, those wheels, tires, and handrims were all different shades of gray, how boring! I didn't like it.

Life is very good.

For the last 4-6 months (we've lost track) Sam has had night coughs. Evening, while sleeping, and morning. Strange, huh? Not productive, no congestion in chest or nose. They are dry coughs, and they are causing everyone in our house except Alexander (who can sleep through anything) to lose lots of sleep. No signs of illness or allergies. We tried cough medicine, cough drops, allergy medicines, and humidifiers. Nothing helped. Sometimes he coughed so much it led to vomiting.

Anyway... Brian did some online research on it last week and found out that one thing that can cause night coughs is a mild form of asthma, especially if it's in the family! I was excited. We tried my inhaler on him that night, and it worked! But, it made his chest hurt, it was too much medicine for a kid. So, I knew right then he needed to go to the doctor. Of course, we ended up taking Alexander to the doctor last week instead, so Sam had to wait till this week. We went in today, explained what he's been going through, and that I had asthma as a child, and that the inhaler worked.

She checked him out, and says he has what's called cough-variant asthma. It means it's a mild version, where the only symptom is dry coughing. Yep, that's him! So, we got prescriptions for Singulair, which should work long term, and an inhaler for acute situations. Our whole family is really happy that this will be getting better in the next week. We're tired! Especially Sam, who has been lethargic half of every day for the past few months. We're hoping to get our energetic, happy Sam back! :-)

Alexander didn't need stitches!

Ok, so the boys were playing a "friendly" game of baseball in the backyard, and for some reason Sam threw the bat, and warned Alex to move, but not in time. It's a rubbery kind of bat, but with a hard plastic tube at its core, which is currently exposed because some of the rubber is missing at the top. So, the hard plastic tube hit his head pretty hard. I didn't know if it needed stitches or not, I don't have a lot of experience with that, so I took him to urgent care, just to be safe. They super cleaned it out (much better than I would have, so that's good), and they said since he's a mature boy, they can trust him to keep it dry, not to pick at it, not wash his hair for 3 days, and wear this pressure bandage on it for the next 3 days. With all of those things, he doesn't need stitches. If he were a little kid, it probably would've gone the other way. I never would have known to not wash his hair, or to wrap up his head for 3 days, so it's a good thing we went. Alexander was such a great trooper in all of it, and was so brave, especially during the harsh cleaning of it. I was very proud of him. The doctor even said he was "very articulate" when he was describing what happened. :-) Of course, it was all a little traumatic, so Brian's picking up chinese food for dinner, and we're going to go rest now. Love you all!