Riding off into the sunset.

Today was a hard day. After 2.5 years I finally donated Maggie's wheelchair today. 

It was time. But it is hard.

When Maggie was here, I would have gone to the mat with anyone who said Maggie's chair defined her. She was so much more than that stupid hunk of metal.  But after she died I could not part with it because it was part of her. It was her transportation. It went wherever she went and actually allowed her to get there, so it was also her freedom.  It was the only way she could really access her talker, so it was central to her communication. It was like a weird member of the family always in a prominent place in the house. (Had to be prominent, the thing was so big.)  When Maggie passed away the empty wheelchair was on the altar at her funeral. That was all we needed for people to feel her presence. 

So I guess if I'm being honest the wheelchair did kind of define her.

It's been sitting in our garage since February 2014 just off in a corner. Though I wasn't ready to part with it, I hated seeing it there. It made me feel guilty because that chair is full of bits and pieces that so many other kids can use. 

Now my father in law is moving in and has many special needs of his own. We need all the space we can get, so coupling that with my guilt over hoarding coveted parts of chairs, I decided to pull the trigger and called CCS (California Children's Services) and they were happy to take it.  I did ask that someone remove the cover with her name on it and give it to us and I'm sure they will. 

Since I sold the van I didn't have anyway to transport the chair, so they made arrangements to pick it up. As I wheeled it into their van I could feel the emotion welling up. I asked him to wait while I took a picture and held it together until he drove away. 

Just as the guy pulled away, my kind neighbor was coming down his stairs and greeted me warmly and was very surprised to see me in tears. The poor guy moved here after Maggie passed away and never knew her;  he had no way of knowing how significant that was, if he even saw any of it.  He just gave me a big hug and offered whatever help he could. But there's nothing he can do. It just is what it is. 

I know someone or several someones will get a lot of use out of all parts of that chair and that is how it should be.  It is sitting over at the CCS Medical Therapy Unit where Maggie spent so much time going to therapy and Girls ROck camp and Art Tech Camp. That unit is at 25th and Quintara Streets in the heart of the Sunset District of San Francisco. So the drama was complete.  It actually did ride off into the sunset.

And that made me smile. 

Duct Tape Free Zone

Maggie finally got her new wheelchair seat cover yesterday.  It is a little piece of neoprene or whatever the heck that stuff is made of.We have been waiting for it for months. MONTHS. There is absolutely no reason it should have taken so long, but that's just the way it is in Maggie's world. I think you can refer to the concept of supply and demand. Not a ton of demand, so not a lot of suppliers. You take what you get and you are supposed to smile pretty.

The new seat cover presents a new challenge for Maggie and I have no doubt she will meet that challenge head on.. She moves so much that she wear through these things at vulnerable spots. The front of the seat takes the brunt of her movement and that's where it wears out first. Of course once Maggie actually tears it, she starts ripping it with her hands because ...well, because she CAN.

When the tear was small I covered it with some leopard skin duct tape. That worked for a while, but Maggie wore out a little more and then pulled on that. I added more leopard skin duct tape. And then again, but I was out of leopard skin and went with zebra. As that wore through we left the jungle theme and went with good old industrial duct tape (which is the strongest of all). Maggie has been cruising in this seat for the last several months.

With the new cover, she is now in a Duct Tape Free Zone. You will note, however, that the cover for the foot box also needs replacing. There's no duct tape, but it is worn through. We'll get that by summer. Of course by then the seat cover will be ripped again. Any wonder I feel like I'm on a hamter wheel?

Purty, ain't it? Any bets on how long it stays intact?

I give it until April 1. Plenty of time to stock up on themed tape.

Technical difficulties of the third kind

This is a new computer and I am constantly surprised when I press a button and something unexpected happens. I was just about done with a post yesterday when it disappeared from my screen. It was quite frustrating, and I had to just walk away.  Hopefully the computer did not decide the post was too dull and did a self edit. I am in big trouble if that happened.

I awoke early this morning and took a shower before coming downstairs, which is unusual for me.  Generally the mornings are so jam packed that I have to wait to shower. It was leisurely and nice and I arrived downstairs refreshed and ready to face the day. it didn't last long.

 As always I went straight to Maggie's room where I found Lucy the nurse struggling to hold a broken trach tube in place and get a new one ready. I hopped into action. It is very difficult to change a broken trach tube alone. You have to hold the old one in place and then switch it for the new one and then hold that in place while you thread the ties through. Basically you need three hands. Plus, this is all done on Maggie who cannot stay still. The trach change doesn't hurt her and she is very cooperative, but her movements are involuntary.  I took over while Lucy held the tube in place and Maggie was all squared away with a nice new breathing tube.

Then I had a cup of coffee, though the caffeine jolt was unnecessary

This is the second heart rate raising incident in two days, though the other was just for a moment. On Labor Day Maggie and i went downtown to shop. We didn't buy anything, but we wandered around Union Square and hit both the San Francisco Center and Westfield mall on busy Market Street. It is a shopping mecca and Maggie loves it.

Market Street is the main artery in downtown San Francisco. it is an incredibly busy place with street cars and buses everywhere in addition to taxicabs and regular cars braving the madness.

As we wandered back toward our car, we had to cross Market. No problem, there are plenty of signals and it's pedestrian friendly. We crossed at this very intersection shown in the picture and for the first time ever, the front wheel of Maggie's wheelchair got stuck in the streetcar track. I pulled and tugged but nothing happened. Buses and streetcars were waiting for the green light to proceed.  I could see the pedestrian light counting down and could feel some adrenaline starting to pump. Maggie was oblivious to this of course. She thought it was hilarious that I kept yanking on her chair I yanked again with that mom strength and out it popped. We got to the other side of the street and I saw a man and a woman with their eyes popping out watching us. The guy just said "good job there." I nodded but just kept walking, not trusting my voice yet. 

 There wouldn't have been any real danger, of course, Maggie was clearly visible and she would not have been hit or anything. But Maggie and I would have shut down Market street while we got her unstuck.  That alone was getting my heart racing.  

As we drove home, I told Maggie she was Nell and I was Dudley Doright. She was unimpressed. I think she puts me in more of a Snidley Whiplash category. After all, I'm the one who got her stuck on the tracks. 

That's three very different types of technical difficulties in three days. Of the three, I'll take the computer problems. they are aggravating, but not scary. 

Here's to a calmer remainder of the week. 

Oh my aching back.

My back hurts.

Not in the laid out, "Oh my God, I need Valium right now!" way. I've been there and that is no fun at all. This is more of an "Oh my God I am a thousand years old and really really tired" way.  It's the nagging backache up one sometimes has in the morning, but it sticks round all day long. I am so worn out from all the lifting of Maggie  and maneuvering of her wheelchair that my body is on strike.

I have spent the past several weeks living my life in two hour segments. How much can I get done before I have to help the nurse lift Maggie for a procedure or before the nurse goes home? It is exhausting and very difficult to get anything accomplished besides simple errands.

On Wednesday afternoon I had 30 minutes to go to the bank and Safeway before I had to be home to help Maggie. As I sat in the bank waiting for the woman to copy some papers, I was thinking about how much more I needed to get done in a short amount of time and how much my back hurt. It was 4PM and I'm sure I looked exhausted.The bank manager decided to strike up a conversation with me, saying "are you done for the day?" I just looked at him and gave him a thin smile and said, "I am never done for the day."

The good news is that there is a cure for this particular ailment. it's called THE BEGINNING OF THE SCHOOL YEAR and its only 72 hours away. I have to keep Maggie entertained for the next three days and then she goes back to school. That's at least six lifts and four loading/unloading of the wheelchair onto a vehicle each day that will be done by someone other than me. My vertebrae and the connecting tissue are all looking forward to that.

The last few days will be tough, though, because Steve is fishing in Canada and Tim is house/cat sitting in Marin. That means I can't ask them to help with any lifting. The nurse will be here 8 hours a day and then again overnight, so I really have only 24 of the 72 hours that fall to me. That means I am down to the final 20 or so lifts. Not that I'm counting or anything.

Funny, I used to dread the end of summer.

How times change when we reach 1000 years old.

Mini adventures

One more full week until school starts! Both Maggie and I are ready for that because we both need the structure that the school year brings. To be honest, I need it more than Maggie does. I have had a very difficult time getting anything accomplished in the past month because I don't have my required stretches of uninterrupted time.

I spend a lot more time caring for and entertaining Maggie, both of which can be quite exhausting. To make matters worse, I get a lot less sleep. I can never sneak off to bed early because there is no nurse here in the evening. They come in the morning on the days I work and in the early afternoon on the days I don't. That leaves anywhere from 3 to 6 hours in the evening for me and Maggie to further bond.  I have deal with Maggie's needs, suctioning, feeding etc until the night nurse arrives. Maggie absolutely refuses to stay in her bed even with me in the room if Dad is in the front room.(or visa versa) Often all three of us Maggie, Steve and I, are sound asleep in various chairs in the front room when the night nurse gets there. By the time I give her report and get upstairs into bed I am wide awake from the interruption. Oh well, 10 more days. We can make it.

We are trying to continue our adventures though they are limited to a few days a week now. It's just too much to try to do more than that. Two days a week is plenty for her and more than plenty for me. We are limited to short jaunts because of Maggie's constant needs but we do live in a tourist mecca, so there is no shortage of things to do.

This week we went right into the belly of the beast and headed for Union Square to go shopping. We didn't buy anything - we almost ever do - but it is fun for Maggie to be part of the action. We went through several floors of Macys and other stores and then went over to watch the cable cars go by. Maggie thought those were hilarious.

 Thursday our friend Anne Marie was visiting (of the prom dress fame!) We headed to the Asian Art museum in Civic Center. I searched for an accessible parking spot for a while, but finally gave up and went underground to the Civic Center Garage. We went down two levels to find parking, unloaded Maggie, attached her pole and her dynavox and hooked up the switches. We put her shoes back on (she kicks them off constantly) and made out way to the elevator. There for the first tie we saw the sign that read "Elevators Closed. Please use stairs. Sorry for the inconvenience."

It took a minute to compute even though an overly helpful man was offering to help with the stairs. (absolutely impossible to carry Maggie and her wheelchair full of equipment up two flights of stairs. It's well over 200 lbs) I declined his kind offer and his request/demand for $5. We drove up one  level to ask for instructions on what to do.

I told the guy at the kiosk that I had a wheelchair and he said gruffly, well there's plenty of handicapped parking. Right, say I, but how do I get her out of the lot with the elevators out of order. "Take the stairs like everyone else." Really? again, we have a wheelchair. Why don't we just walk up the car ramp "No ma'am pedestrians are not allowed on the ramp." well dude, it's either the elevator or the ramp so you are just going to have to let us. (note this whole thing took at least 20 minutes for which I had to PAY) He relented.



I pushed her up the hill to the street level, but of course there was no cut out for the wheelchair and getting her onto the very high curb wasn't going to happen. We had to walk in traffic behind a line of parked cars to reach the corner where we could get back on the sidewalk.  I was exhausted by the time we reached the museum, which is visible behind us in the picture above.

 The girls enjoyed themselves and the museum was lovely and soothing and almost made it all worthwhile.

Almost.

Throughout the visit I was worrying about getting her back DOWN the hill. Up is not nearly as bad as down. Down is scary.  We made it without incident, though.

It really is too bad we only get to do these things twice a week.

Wheelchair Parking. Not for the feint of heart.

Maggie wanted to go to the mall on Saturday. Nothing new there. We go to the mall often, though not necessarily to buy anything. Maggie is a teenager and just loves to watch the people. Because of both the nurses schedule and the parking issue, we generally hit the mall in the morning when it's less crowded. (Note this is not optimal cool teenager time, but Maggie doesn't care). This is an outing Maggie and I can do together before the nurse gets to our house and Maggie can just hang with mom.

That is, IF we can find a parking place for the van with space to unload the wheelchair.

Believe me, I know where every single handicapped spot is in that mall. There are some in front of Macy's, downstairs in the back behind Macy's, there are a couple by the Williams Sonoma and several over by Nordstrom. In addition there are probably 5 or six in the underground parking. Of those maybe 20 spots, only 5 or so have the designated space to unload a wheelchair.  And those 5 spots are almost always taken by a vehicle that could not possibly hold a wheelchair.

There is, of course, no distinction between the wheelchair accessible spaces and the regular "blue" spaces designated for the disabled. Anyone with a placard can use any blue spot, wheelchair accessible or not.  That makes sense, there really aren't that many wheelchair vehicles cruising around. And while most wheelchair ramps come out the passenger side, some have the ramp coming out the back of the vehicle. So not even every wheelchair van needs the space on the side.

Still, it's maddening for those of us who actually DO have to unload a wheelchair out the side of the car to see a Honda Civic or some other small car in the wheelchair spot while another blue zone sits empty.

Perfectly legal. Perfectly reasonable. Absolutely maddening.

Saturday as I approached I saw one spot big enough and figured we were in business. There were three other blue spots, none of which would work for me - but I only needed one. There was one car in front of me - a sedan of some sort.

OF COURSE, OF COURSE, he took the one spot I needed. Not only that, I watched as his wife, who did not seem to have any disability at all, jumped out of the car and sprinted to Macy's. He stayed in the car and waited for her. Really? And you have to take up a wheelchair spot to do that?  I did not see any placard, and I have no idea if he or she were even entitled to use that spot, but why oh why couldn't they have taken one not meant for a wheelchair.

Now I know you are thinking, why didn't you say something? If he realized he would have happily moved ... and you may be right. But how do I know that? No one likes to be corrected by a stranger. He could be a wacko. I can't play cop or even hall monitor in addition to all my other roles. Further, as a practical matter, I would never get out of the car and leave Maggie sitting there unattended. For one thing, it's dangerous and for another, any cop who happened by would be far more interested in my neglect than in the (possibly) legal if thoughtless parking of the other guy.

So I will use this blog to start an education plan.

 If you are not disabled, don't park in disabled spots. Just don't. The ticket is enormous and the karma is even worse.

If you do have a legitimate disabled parking placard, and you are the using it correctly, please don't take the wheelchair space unless there is no other blue zone available.

There are no fines or karma to worry about here, but you would certainly make my life just a little bit easier.

 Thank you.

I would love to know the story here.....

Addendum - I've now heard from at least three wheelchair users who do not use a van, so I feel better about seeing the cars that don't seem to be wheelchair users in those spaces. But let's face it, there are an awful lot of non wheelchair users taking them and an awful lot of non-disabled using all types of handicapped spots. If you are using a placard legally and need the space -go for it, that's why it's there. If you don't need the extra space and there's another space, take it. if you are disabled and staying in the car while your wife shops, don't hog a space. If you are parking in a blue zone illegally, I have nothing but disdain for you.

Grate day.

We survived the first week of summer. And that's no small feat. It takes a lot of logistics to make that happen. I forget how tiring it is to care for Maggie when she's not in school. Oh we have fun together, but I do a ton more lifting and car transfers when she's on vacation from school and it is physically exhausting. Especially if you go out too fast. It's a marathon and you have to pace yourself.

I overdid it on Day 1 with about four separate stops, meaning four different transfers etc, and we did progressively less and less as the week went on. Rookie mistake. I should know better. But it takes a few days to get the logistics just right.

There are logistics in every thing I do. I have to think about the entire day, and be as efficient as possible with outings, parking etc. Once that's done I have to carefully plan my attack or getting into a place and being able to use the suction machine and find things in my purse all at the same time. Every move needs to be considered in advance. Sometimes even then things go awry.

On Thursday morning,  I was bound and determined to get some packages mailed that have been sitting here forever. Maggie was greatly entertained as I taped them shut, one with a LOT of tape as it was in a box just a wee bit to small for its contents. Feeling accomplished we headed for the post office on our way down to the main library at Civic Center.

There is no place to park the van at our post office. It is on a  very busy corner. There are several spaces on the hill on the side of the building, but 1) they are on a hill which is very difficult for unloading and 2) none of them have sufficient space for the ramp. The few spaces in front are flat, but they are reserved for postal vehicles in the morning. There was room just across the street.

I parked the van, unloaded Maggie, put my two packages under my arm and felt very pleased with myself. Funny how satisfying it is to get things in the mail, even when as here, I had delayed it for several weeks.  I held the wheelchair with one hand and carried the two packages with the other hand.

Sadly, the curb cutout for the wheelchair at that particular corner is too steep. Generally they wouldn't be a huge problem as I would have two hands on the chair. But this time it was. I had to be very careful or Maggie would shoot onto Geary Street with its six lanes of traffic whooshing by. I carefully and slowly went down the too steep ramp without losing control of the chair. Excellent. Unfortunately, a container of her food fell out of the bag onto the street. I had to pick it up, but both hands were full. I carefully placed Maggie's wheel against the curb. God forbid I actually put down the packages.

As I bent down to get the food, balancing the packages all the while, Maggie rolled just a couple of inches. No problem. She was against the curb, she couldn't go far and could not possibly go into traffic. She was just slowly moving along the edge of the curb. Out of the corner of my eye I saw her front wheel heading for the sewer grate. I tried to stop it, but too late. The wheel fit perfectly into the grate. I tried to tilt her chair back and the new rocker back we finally got did just that - rocked. Maggie was laughing her head off. I put the packages on the curb, stood on the sewer grate and lifted the front of her chair with all my might.

Free at Last, Free at Last.

I saw a woman sitting in her car watching this whole thing unfold with a look of horror/pity on her face. She was sitting at the traffic light waiting for it to change and I had to cross right in front of her. I tried to look as self satisfied as I felt 5 minutes earlier with my packages under one arm and pushing the wheelchair with the other, but the veneer had peeled away and I was exposed for the fraud that I am. I didn't want to see her pitying look, so I stared straight ahead.

Maggie of course  gave her the homecoming queen wave as we passed, though. She was having a ball.

We did head down to civic center after that.  I wanted to go into City Hall and talk to someone about that curb cut, but I just didn't have the energy. I settled for  a picture of Maggie with the magnificent City Hall behind her.

Stunt Double!

Maggie is going to graduate next Wednesday. I won't belabor how amazing that is.

But it is. Amazing, that is.

The pomp and circumstance of graduation does not happen in a vacuum. If you want 200+ excited teenagers to go through graduation you have to practice practice practice.

Wednesday they spent most of the day learning to process in.

Thursday they spent the day learning to get up to the stage, process across, get their diplomas and sit down. Whew! that was a particularly tough day.

Friday they learned how to get off the stage and presumably how to process out. Good thing too. If they didn't learn that they would all have to spend the summer in the Mission High auditorium.

The problem is Maggie does not have the stamina to spend hours ANYWHERE, let alone in an environment of very excited seniors with blasting speakers etc. Graduation or no, Maggie still needs her procedures done every few minutes and when she needs the big ones every few hours, she's gone for 15-20 minutes at a time.

Can they get along without one of the graduates for 15-20 minutes? certainly. Are they beyond accommodating to Maggie? Absolutely.

But Maggie has an important role. No, she is not the valedictorian or salutatorian or any such thing. But she is the only one ins a wheelchair in the graduation and there are logistical issues that must be addressed in making all of these transitions. There has to be a seamless way to get the bulky wheelchair into the auditorium and on and off the stage. She will also be the only one with two adults accompanying her throughout the ceremony. They have to have chairs that are off to the side a bit but still readily accessible to Maggie if she needs help.

 If they want this to go smoothly, they need Maggie's there. Or they need her chair. Or they need someones chair. What to do? What to do?

Bring in the stunt double!

Since Maggie does not have the stamina for the required practices she went back upstairs when she was worn out. Her new beau Robert went down in his chair so they could be sure that all the kinks were worked out.

What a gentleman Robert is! But more than that, I think it's Robert's daring as a stunt double that attracts Maggie to him.

Get OFF My Lawn

There's nothing quite like scaring the crap out of two grown men first thing in the morning.

They are doing a massive remodel to the house next door to us. Work started a month ago and  will continue for another five months. The neighbors had to move out and the house is completely gutted at this point. The demolition was particularly noisy and as I write this, there is some heavy equipment running. They are pouring concrete and a tractor type thing doing God knows what. But, like anything else, you get used to the noise and it fades into the background. The contractors are nice guys. There are a slew of workers over there and the two boss types are both Irishmen. It's always a pleasure to listen to that accent and they are very friendly and accommodating to us.

I've mentioned before that I live in a row house. There is zero space between the properties. Before the work started I told the neighbors and the contractors that we would be fine with whatever they had to do, but they had to be mindful of wheelchair access. Our elevator is in the backyard and we take Maggie out through the garage.  That area abuts part of the remodel. A week or so ago they took part of the fence down between the properties. They told me they might be in our yard, and I said that's fine, but remember the wheelchair issue, and they assured me they would. They did what they had to do and there was no problem.

Yesterday they poured the concrete for the new foundation. I traded pleasantries with the foreman as the truck got into place. I walked to the store, came back, waved at the guy again and went inside.  They never mentioned that they were using part of my yard to brace the foundation. If they had asked  I would have said yes, of course, but once again I would have reminded them about the wheelchair access. Steve was moving something at 11:00 PM last night (don't ask) and couldn't get through because the forms were blocking the path.  

They arrived at 7:00AM. I called over there from the back deck, but they didn't hear me. I went out in front and the two boss types were standing in the driveway. The looked up and smiled. I just said, "Hey, I am happy to cooperate with you, but you have to move those forms so I can get the wheelchair out to the bus in the next 15 minutes. And If you are doing something in my yard ASK ME or at least tell me. I am going to say yes, but I do NOT like surprises."

Jaysus! They hopped to! That stuff was gone in a flash.

I took Maggie out to the bus with no problem and the big boss was falling all over himself apologizing. I said "it's ok, but you have to understand we have emergencies all the time and I cannot have something in the way that I don't know about. Even yesterday I had to leave early because of a problem with her feeding tube. And that doesn't really qualify as an emergency around here."

 He looked sheepish and genuinely contrite. I don't expect there will be any more issues like that. Or at least no surprises. I put the fear of God into them. Or at least the fear of the crazy lady next door. It was only a matter of time until they discovered the real me.  Steve just said, "ah, the poor lads" in his best Irish brogue.

Poor lads, indeed.

It's nice to know I still have it.

Bobblehead

This should not be this difficult.

After repeated attempts to repair the headrest on Maggie's wheelchair, we finally gave up and ordered a new one. That was in the early part of June. It arrived just before school started at the end of August. It broke the next day. We did a patch job until the guy could get to us a day or so later. He fixed it up and it worked for a week or so. We called again. We tightened the screws every 20 minutes or so. This went on for several days but we knew it was a matter of time. I called the place three times on September 19 leaving messages telling them it was going to break off. No one called back. It broke completely the next day and Maggie was trapped at school because she could not be transported safely with a bare pole sticking up where he head should go. The bus wouldn't take her and I had no way to transport her in the car. I called again. They agreed to come out the next day. I panicked thinking Maggie would have to sleep at Mission High. I went to school and retrieved the broken headrest which I took to a hardware store where a kind clerk took pity on me and helped me find a set up that would hold it together so we could get her home. I brought it back to school and Mr. David, one of the aides in Maggie's class, helped me put it back together. The wheelchair people came September 21 and worked on the chair for a long time. just the headrest. The other parts are not as important (though we've been waiting for those since June). He did some magic and came up with a new set up telling me that if this didn't work he had nothing else to offer. I looked at it and knew immediately that it would only last a short while. Today, 11 days post repair, it is in tatters and I've already tightened it twice this morning. It will hold maybe another few days. They are coming back today with the manufacturer of the headrest. It is October 2 and we've been messing with this for five months. .Maggie is very strong and throws her head back extending her body and putting a lot of force on the mechanism. Naturally, they think it's all her fault. But she is not the incredible hulk, she weighs less than 80lbs. I'm thinking maybe we should stop blaming her.

This should not be so difficult.

Ahhhh, Monday

No one ever says "Yay! It's Monday. 

Except perhaps for mothers sending their children back to school after a wild weekend.

I do look forward to Monday morning because when Maggie gets on that bus I can restore some order to my day. When she is home, whether the nurse is here or not, I am constantly on call and have one ear perked for the way she coughs, etc in case something is amiss. I honestly look forward to the mental and physical break. 

Of course I didn't get it today because Maggie is sick. She has a fever, which would ordinarily freak me out a little bit, but not this time. Tim had a fever and slept all weekend and Steve doesn't feel well either, so Maggie is just catching the virus that is making the loop around this house. So far, the only one untouched by fever is me, but I stayed in all day yesterday with a stomach issue. Don't know if that was my version of the same thing or not. Hope so, because I already feel better. 


The weekend would have been terrible if not for the kindness and generosity of Maggie's bus driver. Maggie arrived a bit late on Friday  like 3:50 instead of 3:30. She was tired but happy. I waited for her to get home to run some errands and because of the delay I left as soon as the nurse took her upstairs. I returned home right around 5:00. When I came in the nurse asked me where Maggie's tray was. I hadn't even noticed that she didn't have it when she got off the bus. The tray is essential because she cannot "talk" without it. The switches for her talker are on the tray. Now it's 5PM on Friday and we don't have a tray. The weekend was looking mighty bleak. 

I frantically called the bus company but they said they didn't have it. I texted the nurse who apologetically told me she slipped it right behind the bus drivers seat. I called again and told the bus company that and said tell me where to go to get it. I will drive to wherever he is to get it. The bus yard is across town, but I didn't care. We HAVE to have that tray. Just tell me where to meet him and I will go.  She called back a few minutes later and said, "Carlos said it's on the bus and he is bringing it to your house, he just left the yard." 

I was floored. He did NOT have to do that but at the end of his work week he drove that bus all the way across town to deliver that tray to Maggie. That was probably an extra 45 minutes at the end of a Friday afternoon. Talk about going above and beyond! I was quite impressed and let him know that. Carlos just shrugged it off because he is such a nice guy. 

It was a great start to a weekend. Now if we could just get this week going.

The Ferrari of Wheelchairs.

I used to say Maggie's wheelchair was like a Cadillac because of all the bells and whistles. Now I think a better comparison is a Ferrari. It's sleek and pretty, but CONSTANTLY in the shop.

Day 3 of school.. Day 6 of the long awaited wheelchair repairs. Day 1 of me going to school to meet with the wheelchair guy about the problems with the new equipment, which now has its first piece of duct tape..

Ahhh. I'm back in the saddle again.

The duct tape is not to cover something that's ripped, but to prevent Maggie from unzipping the cover to the yoke on the headrest. She discovered the zipper about ten minutes after the new piece was installed and pulls it down. Then she starts clawing at the material underneath which is something like a hard foam. I didn't realize that at first until I saw something black on the edge of the opening on her trach. I shrieked and jumped up thinking there was a bug about to crawl into her lungs and quickly swished it away. It wasn't a bug, but there was the same material in her hands. Then I saw the claw marks in the material exposed because Maggie unzipped  it. Out popped the duct tape lickety split.

Protecting Maggie from herself and her unzipping fetish is easy, however. The bigger problem is that the new headrest does not work for Maggie at all. Sad but true. We waited months for it and it's not right. It's not broken - YET, but it is unworkable and needs constant tightening.

The guy said he thought the "set screws" weren't properly tightened, but I know it's not that simple. This is a case of Maggie's big heavy head, that is constantly moving and generally extending back, overpowering this overly intricate set up. We need something with less moving parts that will provide her stability. It needs adjusting constantly (like every 10 minutes)  and several times I  have to take it completely apart to make the adjustments.Yesterday I thought perhaps she doesn't even need the long yoke piece and simply removing it would fix the problem. Nope. As I did the temporary repairs her head kept falling to one side. I could not fix the chair and hold her head at the same time and had to call Steve from upstairs to lend a hand. It's craziness.

 In addition the yoke is dangerously close to her trach. If Maggie turns her head quickly, it could knock the tracheostomy tube right out of her neck. And that is completely unacceptable.

The other end also presents potential dangers.  The new foot box came as a split - that is separate pieces for each foot. That is just an error. It should be one solid box which provides fewer spaces to get her foot wedged.  I spoke with the guy on the phone and he remembered we did it separately for a specific reason. I said no. The appointment came just AFTER we had to call the fire department to rescue Maggie after getting her foot wedged into the chair. (Maggie World: 911. What's your emergency?)

Hopefully it won't be months to get the right parts.

Meanwhile, I going to look at a fancy red Ferrari for me. Why should Maggie have all the fun?  

Fin d'ete

Summer is drawing to a close. We have been trying to pack a lot of fun in to the last week or so to finish summer off with a bang.

Maggie and I are headed to the museum this morning to meet our friends Lori and Lily. We will have a quick look at the Man Ray Lee Miller exhibit. A little dose of surrealism is perfect for our particular foursome. We are two moms, two teenage girls, two wheelchairs.

Lori and I had the best of intentions as the dreaded summer vacation started. We were going to get together with our girls and see the town. Maggie and I have been over there to visit and we did grab a quick lunch at City Hall one day but this is our first actual outing together. Everyone is so busy or has various windows of available time that do not coincide. We are all girls on the go and getting together has not been easy.*

The DeYoung Museum is a regular stop for us. We live just a few blocks away and are in and out of there all the time. Last Saturday we went with my old friend Clare and her teenage daughter Anne Marie. Maggie loved that, especially because Anne Marie actually did most of the wheelchair driving. Maggie needs a break in the routine and having another driver, who was a cool teenager was excellent. (Anne Marie is the lovely young woman who outfitted Maggie for both her 18th birthday party and the prom.) We went to the Jean Paul Gaultier exhibit of outrageous fashion designs. I pointed out a few suggestions to Anne Marie for dresses she should get and hand down to Maggie. She wasn't biting.

The museum was not our only outing in the last week, though. I wrote about our trip to the playground on my last post which was great. We also had a  great time at the zoo with Maggie's friend and school mate Patrick and his mom, Carla. Here are Patrick and Maggie with their tall giraffe friend.

Carla and I also had lofty plans to do various outings with the kids, but we didn't get it together until last week. Getting the kids together is important for them and having another parent to talk to who really "gets it" is a bonus. After our zoo outing we got together for a long walk in the park and picked the only day the sun was out all week.

Another stop in the last week has been the Dahlia Garden in Golden Gate Park. We went with Clare and Anne Marie, with Patrick and Carla and even took Steve over there separately. This time of year the flowers are all in bloom and it is a spectacular display of color on these foggy gray days.

So we are off this morning for another dose of culture and fun.  We have to grab our culture quick and head home because the long awaited wheelchair repairs are happening today!! The guy is supposed to arrive in the early afternoon and will do the repairs at our house.

 Huzzah!

This will likely be our last outing with friends as school resumes Monday.

Huzzah!! Huzzah!!

* not any easier today either as I thought the exhibit was at the DeYoung when it was actually at the Palace of the Legion of Honor. A text from Lori sent me scurrying to the right museum. Great way to start a surrealist exhibit. We were a little late and then when we got there Lily was not there. She didn't feel well and begged off. We will try again on one of the several furlough days during the school year.

Wheelchair repairs

School starts on August 20 and unless there is a miracle, Maggie will start school just as she ended it, with a broken wheelchair. This is the ripped and duct taped footbox and bolt and her duct taped headrest (leopard print tape)

Two months ago Maggie's foot got stuck behind the footbox on her wheelchair and we had to call 911 for help to get her freed. In order to extricate her, the firemen had to break the footbox.  (Maggie World: 911. What's your emergency?) Steve did a bailing wire and duct tape repair which are not beautiful, but effective.
The jerry-rigged footbox joined the duct tape over the cracked tray, and the ripped headrest. Things are barely holding together. In fact, the headrest is so broken Maggie looks like a bobblehead most of the time. You can see it cocked to one side in the picture.

 Her chair is the equivalent of the car up on blocks in your next door neighbors driveway. Unsightly and in need of repair.

Wheelchair repairs are not easily done. Maggie's chair is very specialized. It has a million moving parts and is designed specially for her. It is not simply a matter of getting new parts and slapping them on. Things have to be carefully considered and measured. Once that's done, the process of getting things approved takes weeks. It's crazy. There are several steps and each one is prone to delay.

 First it goes through our insurance that turns it down and then it goes through California Childrens' Services.(CCS). The parts cannot be ordered until they are approved by CCS. CCS cannot do anything until the insurance turns it down. The insurance cannot turn it down until it is fully submitted. It cannot be fully submitted until we meet with the vendor and determine the precise parts needed. The vendor cannot be easily scheduled because there is such high demand and so few vendors who will work with CCS or Medi-cal.

We met with the vendor in early June. The insurance (eventually) turned it down, CCS approved it, the parts were ordered but they are STILL waiting for the last parts to be shipped. I called to see where we were and learned the last part will be in next week.  YAY! Just in time for school. BUT our guy is on vacation.

OMG.

BUT! The other guy in the office has it on his list. YAY! According to the woman I spoke with, however, it is his plan to come here, pick up Maggie's chair and bring it up to Santa Rose to do the repairs and then bring the chair back.

OMG! OMG!

I told her that will not work because Maggie does not have anything else to use and she cannot lay in bed for 24 hours. We do have a loaner power chair that Maggie uses occasionally, but it is way too small for her and she can't sit in it for more than an hour or so.  Besides, I am really really concerned about letting that chair out of my sight. If another delay happens and they have the chair, we are both screwed. Moreover if its not done next week and they insist on taking the chair, she will miss school.

If they do insist on taking the chair, I'm going with it. I will just bring my crossword puzzle and my Kindle Fire and amuse myself in their workshop. That will prevent any delays. People tend to want to get me OUT of places.

Should that concern me?  

Right tool for the job

When we invited folks to Maggie's big 18th birthday fandango we asked for no gifts. The idea was that the party was to thank all those invited who helped Maggie in some way. Most complied. A few thought that was nonsense and gave her gifts anyway. Maggie did well and had a great time.

One of those gifts was this tool set from Barb, Maggie's Physical Therapist. She thought every girl should have her own tools set, including the cool tool bag. The fact that it was puce and pink was just a bonus. There is a matching hammer, screwdriver (flat and philips), wrench, needle nose pliers, tape measure and a level as well as two sets of allen wrenches. 


Though we have not yet had a use for the level, I believe we have used every other tool multiple times.  


There are a hundred different places on the chair that need help and we always have the right tool to fix it, though sometimes that's not enough. For instance, when Maggie's foot was stuck in the wheelchair a couple of weeks ago, I ripped into the allen wrenches until I found the right size and tried with all my might to get that box off. I had the tools, but not the strength and had to call the fire department for help. (They had the strength, but didn't stop to use the tools and just snapped the bolt - and I'm still fine with that.) 


Maggie's talker has been very temperamental the last few days. I had to keep resetting it and then it would work for a while but stop scanning again. Finally I realized one of the two switches was bad. It was probably failing over the past few days and I was blaming the computer instead of the switch. Once it stopped completely, light finally dawned. I have a few spares, so changing the switch was easy enough.  All I needed was a phillips head screw driver, which is included in the handy dandy pink and puce tool bag.

I figured it was time for Maggie to lend a hand. This was her voice we were working with. It was her switch on her tray and her tools.  I told her she had to give me a hand and she just looked at me incredulously. Me? help YOU? That is not how this set up works.

Maggie would have no part of taking the old one off but became quite fascinated when I unscrewed the old one.She decided it was worth her effort to help me put the new one on. 

She was quite proud of herself when she was finished. I'm sure she's looking for more projects.


 If I come home and she's remodeled the bathroom, I will be delighted. 
. 

911. What's your emergency?

Let me start this by saying Maggie is fine.

But we had a helluva afternoon. I think it is safe to say that the boredom of mom camp was shattered.

Yes that is a picture of the San Francisco Fire Department in my dining room looking at Maggie’s medical background for their paperwork.

Maggie was home with the nurse and I was running errands like a crazy woman, trying to get back in time for her next procedure. I knew I was going to be late, but she is ok for another 30 minutes or so and I just had to get some groceries. I was standing in line to pay when my phone rang and it was Maggie’s nurse, Fely. I answered and without waiting for her to speak said, “I’m almost done and I’ll be home in 20 minutes.” She said, Sally, something is wrong. Maggie is very upset and she is turning blue. WHAT!?!? Is she ok? She is now, but she is crying uncontorllably. Is she blue now? No. The trach was plugged and I cleared it.  I am giving her oxygen. Ok. 

Lest you think I'm inattentive, this does happen with Maggie. It's never good, but once it's over it's over. Still I wanted to get home to see for myself. 

Of course it took FOREVER to get checked out and for the first time in about 1 year I was shopping at a different store, not my neighborhood Safeway. I was at least 15 minutes from home but I had to get out of the store. As I loaded the groceries into the car Fely called again. She sounded more worried. I said, “I’m coming now. DO you need 911?” She said no. She was giving Maggie O2 but she seemed to be in pain.

I drove as safely as I could while fighting panic. Tim was at work in Marin. I called my neighbor who is an RN to see if she could pop in and do an assessment. No answer. I called Steve to see if he was almost home. He was still in his office. He said he would leave right away, but I know I would get home before he did.

When I arrived, Maggie was in distress. Fely was giving o2 and her respiratory numbers were fine – but her heart rate was in the stratosphere.  I made sure the trach was clear. I was perplexed, for sure and said, let’s get her in bed. As I tried to get her out of the chair, I saw it. Her foot was completely wedged in behind the foot box on her wheelchair.  I could not move her and I could not free her foot.

I grabbed the tools and tried to loosen the box but I was fumbling around like an idiot. I finally found the right sized wrench but I couldn’t budge the bolts.  I was freaking out. I needed help and I called 911.

In a way, this is like a normal kid problem, right. Granted, it involved a wheelchair, but she needed to be freed. She could have been up a tree or locked in a closet or something like that, right? This could happen to anyone, right?   As I kept giving information to the 911 dispatcher, I realized maybe it wasn’t so normal. 

“San Francisco 911 what’s your emergency”

My daughter has her foot wedged in behind a piece of her wheelchair and I cannot free it.

Is she injured?

She is definitely in pain, but I can’t tell if it’s injured or broken or just stuck (note – I was not calm)

How old is your daughter? 18.

How did she get her foot in there?

 I don’t know?  She has CP and gets herself into some strange positions, I have never seen her foot back there before.

Oh. I see. What does she say happened? Can she tell you how she did it?

No. She’s non verbal.

Oh. I see. How long has she been stuck?

At least 25 minutes I’m trying to get the foot box off, but I’m not strong enough to move it (shrieking a bit)

Ok ma’am. Take a breath. [When he said that I realized I hadn’t taken a breath in several sentences] The Fire Department and paramedics are en route.

It took about 4 minutes. That is a very quick response, but it is a very long time to wait.  I did have the presence of mind to put the dog outside so he didn’t bother the firemen when they arrived and to call Steve and tell him what was happening. I did not want him to have a heart attack when he saw the Fire trucks and paramedics in front of the house.

First came the firemen – about 5 of them. They surrounded Maggie. I couldn’t even get into Maggie room. I heard a “crack” and knew the chair was broken. I  Did Not Care.  More rescuers arrived.  They just kept coming. There were at least 10 guys in my house. The firemen left when the paramedics took over. We were down to five guys and then three. At some point Steve arrived too. The paramedics  determined her foot was bruised, but likely not broken. They were concerned about Maggie’s breathing and I assured them her weird breathing was her norm. When she started grinning at the firemen and doing her own version of flirting, I knew she was really ok. She pretty much owned every guy in the room.  She was stressed, but fine.

 I was just stressed.

A huge thank you to the very kind firefighters, emt’s and paramedics and everyone else who was here. We 

do not need help very often, but we did today. It is sure nice to know help is there when we need it. 

Changing her spots

Maggie discovered some loose fabric on her headrest and started pulling. In a matter of moments the thing was in tatters. Big brother Tim decided to fix it up. My friend Kathleen sent some wild duct tape the last time we had to cobble her chair back together and it was just the ticket for this problem.

She's a bit peaked today, but even with that, she looks a little tougher, don't you think?

Aftermath

I learned more about Maggie's wheelchair falling over when she came home from school. Apparently it wasn't such a slow fall*, but a crash and she landed a little to her side. The driver stopped the bus on the hill in the middle of traffic to fix things. Her nurse said Maggie was shaking with fear, but physically unhurt.

I called the classroom to check on her before I went to the dentist because I knew I would be out of touch for a while. The teacher said she was working and happy so I didn't worry. I knew, though that there would be more when she came home. And there was.

Her physical therapist comes on Tuesdays to work with Maggie in the walker. This is very difficult for Maggie. She is never upright and it's a bit scary.  I'm sure you can figure out what happened. As soon as we put her in the walker she started to melt down. This has happened before, but this time it was different. Maggie was inconsolable. We immediately took her out and put her in the chair, but she could not stop crying. After a few minutes I took her out of the chair and sat with her on the couch while she just cried out all her fear.

It would have broken your heart. She was so sad and so frightened and all the hugs and kisses and reassurance could not make it go away. It was the exact same reaction she had when her wheelchair fell over in middle school. She waited until she got home to mom and then completely fell apart. She finally recovered after about 45 minutes of solid crying. By then she was exhausted. So was I.

When her bus arrived this morning her regular driver was back (that was a sub yesterday.) He knew what happened and took no offense when I said, Please use the tie downs.

They got to school without incident.

--------------
*no one told me it went over slowly, I think I just saw it that way in my mind and wanted to believe it.

Great start to a Tuesday

Maggie is out the door and onto the bus and I come back inside to begin my routine of ignoring everything I need to do so I can read the paper, check facebook, etc.

About 10 minutes after they leave I get  phone call from the nurse. Maggie's wheelchair tipped over backwards on the bus as it was chugging up Fulton Street.  Maggie stayed in the chair as it went over. She has seven buckles keeping her in that chair and all were secure. Seems the substitute driver didn't completely secure the tie downs.

Maggie is fine and safe, though a bit frightened.

 I, however, have an incredible stomach ache.

Roll on the Wild Side

My friend Kathleen came by over the weekend. She had something she wanted to drop off, something she figured we could use around here especially after reading last week's posts: Decorative duct tape.

There is a swirly blue and purple one, a leopard print and a zebra print. Maggie can tear and snap parts of her chair with reckless abandon and we can put them back together with a tape that reflects Maggie's persona du jour.

Interestingly, Kathleen did not know that Maggie has a jacket in both a leopard and zebra print. Here's a picture of each with the matching duct tape sticking out of the pocket. 

. 

The possibilities are endless. If we do things just right and tape things up completely, Maggie may just look like a rolling jungle animal.