Showers with a chance of Baseball

First real rain of the season started lat night and continued through the night. Rain on the windows and roof is such a wonderful sound to hear when you are snuggled up in bed. But then you have to get up and get Maggie to the bus in the elevator that is open to the elements.

The elevator is slow - it takes about 90 seconds to go from the deck outside Maggie's room down to the backyard. Most days it's a pleasant minute and a half that Maggie and I are cut off from the world. We joke and laugh and have a great time during our ride to the ground level. We really don't notice how slow the lift is going because we have so much fun. When it's pouring down rain, the focus is centered on the very s l o w ride down. 90 seconds in one place during a downpour is a very very long time indeed.

I did grab an umbrella to shield us from the worst of it but it is difficult to hold the umbrella and hold the button to make the elevator go at one time. Also I have to keep shifting the umbrella to avoid getting it caught on the shaft as we descend. And there is no way to cover everything, so Maggie had a dry head and wet knees. We made it down in one piece, but Maggie was less than amused.

It didn't help that I didn't get a chance to feed her. Her nighttime feeds are turned off around 6 and I always give her a feeding in the morning before she goes to school. My plan was to feed her when we got downstairs but the bus was already there waiting for us. The school nurse promised to feed her as soon as they arrived at school, so she would only be about 30 minutes late.

Now the rain has stopped. It is supposed to shower all day today and with our luck those showers will hit just as she comes home and has to come back up the elevator.  But she will survive this indignity with her usual grace and aplomb.

We just need the rain to be gone by game time. The Giants play the Cardinals in Game 7 of the NCLS today and I don't think any of us can tolerate a rain delay.

Maggie will be ready:

(Lest you think I'm neglectful, this picture was not taken this morning. She does not wear shorts when it's raining. This is from a sunny day in September.) 

Go Giants! 

Sneaking around downtown

The school bus was a welcome sight this morning. Maggie has been home for five days and we both need a little change in the routine. She will have fun with others and I can get some stuff done around here.

The weekend was great but busy. We had family over Thursday and Friday and part of Saturday. We all consumed Turkey in various forms. Yesterday everyone was gone. We headed downtown early for our annual stop at the Hyatt Regency to view the Christmas decorations and ride the glass elevators. Maggie loves those elevators.  They overlook the beautiful atrium lobby which is 17 stories high and adorned with lights hanging down several stories from the top.

We have done this for several years now and Maggie starts laughing as soon as we enter the building. Imagine our disappointment, then, when we discovered the Hyatt had installed security measures to keep out the riff raff (us). Now you had to have a room key to access the elevators.

We considered asking the concierge for permission because people rarely deny reasonable requests for Maggie.  Of course if he said no, then where would we be. Being the criminal masterminds we are, we just waited for a guest with a key. That took all of about 30 seconds. A family arrived and were happy to oblige. Sadly they were only going to the 6th floor. However another couple boarded on the 3rd floor. They were a bit grumpy and didn't appreciate the crowded elevator. We just gave a smile and tried to look like we belonged. They put their key in for the 16th floor. SCORE!

Maggie got her elevator fix and was delighted.

We left there and checked out the Holiday Ice Rink in Justin Herman Plaza

Then we walked past the Occupy SF encampment and saw this Barbie Dream House tent.

We figured this must be the high rent district or the encampment - even the 99% has a 1%.

Maggie just wants to know if it has glass elevators.

Going Up?

This is one of those situations that is sort of embarrassing to complain about. But you know that won't stop me.

We are very fortunate to have equipment that allows us to get Maggie into and out of the house and the van. Without our outdoor lift or van adapted for her wheelchair, we would very likely not be able to keep her at home. Every day I thank my lucky stars that we put in that lift and that the van is in our lives. We press buttons and control these magic machines that give some quality to Maggie's life and ours.  Sometimes, though, the magic machines control us. Today is one of those days. Really, it's been one of those weeks.

           
















As I write this the guy is here doing the semi annual maintenance to the lift. It actually works great and has been very dependable since we got it about 5 years ago. Lately the lift seems to groan as we ascend and I had to nudge the company to get out here and check it out. It's getting old. I can relate. I groan as I ascend too.  We made this appointment last week and I expect he will be done within the hour. That's a good thing, because the lift on the van is broken and I have to get it back to Berkeley as soon as this guy is done.

The van lift was acting strangely for the past month of so, but it was manageable. Once the lift fell to the ground hitting me in the back of the legs I decided we had to get it fixed, but I wanted to wait for Maggie to go back to school. I cannot be without the car when she's home all the time. As soon as she went back I called for an appointment to find out what was wrong. On my first trip they determined it needed a new motor, which came at a very hefty price (of course).They had to order the part so another trip was required. I asked that they fix the companion seat at the same time because they installed it  far too low. Whoever sits in that seat cannot even see out the window. It is also terribly uncomfortable because the seat is so low your knees are up around your ears. I scheduled another appointment for the work and brought it in Tuesday.

Taking a car across the bay for repairs is a pain in the rear. I drove it over there, left it, walked 1.5 miles to the BART station, came back to the city and hopped on a bus to get home. The schlep on public transit, including the walk to the station is about 90 minutes. I called Wednesday at noon to see if it was ready. Indeed it was. I had some stuff to do and had to make the long trek back and arrived there around three.  Motor is changed, seat has not been touched. One cannot help but wonder why they told me it was ready three hours earlier?

The guy removes the seat, gives me some excuse for why it wasn't done (they clearly forgot) and tells me they will call when it's ready. I am less than pleased. I drive home with my van minus one seat. Now I have to go back again to get it. As it turns out, however, another trip was going to be needed anyway. They did indeed put a new motor in, but apparently neglected to reattach the lift to one side of the mount. As I pressed the button today I noticed it was coming down at a very strange angle and reached the car in time prevent it from getting jammed into the door and wrestled it back into place. We were headed out to an appointment so I raised and lowered the lift manually to load, unload, load and unload Maggie. Let me tell you, that is one heavy sucker. My shoulder is killing me.

So I will finish this tome and head east over the San Francisco Bay Bridge, back to the flats of Berkeley and deal with all of this again for the third time this week. This time I'm not coming back into the City. I will forego the long walk to the train, the ride under the Bay and into the city and the lurching bus ride home. In stead I will sit in their greasy little waiting room with my book and make sure it is all done correctly.

At this point I feel like I am something of an elevator expert, but I really just want to get back to the place where I push a button and the magic machines do what they are supposed to do.. 

Going down?

 Everything Maggie needs she needs for her day is loaded on the back of her wheelchair. Loading it is an art form unto itself. In order to push the chair comfortably, or even to fit in the elevator, things have to be placed in the proper order. Today I was not attentive enough and we had trouble getting the elevator door closed. I need to go to grocery bagging school to improve my technique.

The back of Maggie’s wheelchair is a crowded place. Two bags are always on there. One has the emergency resuscitation bag, which has to be kept close at hand. (There is another hanging off her bed). Fortunately, we have never had to use that, but it will always be there because as soon as I remove it, she will get into trouble. The second small bag contains a spare trach and all the necessary supplies should we need an emergency trach change. That one we have used several times. You just never know when she will pull out her trach or break the ties, so we are at the ready on that one.

The next three things are big. There is the communication device, which is a bit larger and heavier than a laptop. That goes in the briefcase like bag. Every morning we have to fill the portable oxygen tank and that goes on next. The strap on that tank is a little too short and it sometimes sticks out at a strange angle. If it’s don’t right, the O2 tank will fit in the space just above the briefcase bag which has a longer strap and hangs down lower. Finally, the suction machine goes on last because we need that every two minutes. It is easily accessible because it is open to the person pushing the chair and doing the suctioning. Fortunately, there are anti tip wheels because without them, the weight of her supplies would pull the chair over backwards.

The force was not with me this morning and I was struggling to get the elevator door closed with all the equipment sticking out at various angles. You can swee in the picture (from a differen day) how tight the space is in the elevator. I get in first and pulled Maggie in behind me. By standing on my tiptoes and twisting my body just so, the door clicked shut. I held the down button for the 90-second ride down feeling as if I was in a game of twister.

As we were slowly descending, I looked up the open shaft to the rapidly darkening sky and said, 'you know what is going to happen, don’t you Maggie. There will be a downpour and this elevator will stop and I will be stuck in this position forever." She thought that was hilarious. I did not.

I did not have my phone with me and Steve was upstairs in the front of the house. He would never hear us yelling. In all likelihood, the neighbors would hear, but they would not be able to see us in the shaft and presume everything was all right.

For once, the worst did NOT happen. We made it to the bottom. The downpour started the second Maggie loaded onto the bus. I was soaked in about 30 seconds. She was looking out the window of the bus laughing at my dripping jacket and hair. I’m glad she had SOME entertainment before her school day.

Stuck in the Rain

Land is scarce in this town; and from the beginning, it was built vertically, not horizontally. Our house is a typical San Francisco house, tall and skinny. It is 25 ft wide and two stories above the ground. There is approximately 1 inch between our house and that of the neighbors on either side. There are blocks and blocks of these row houses. Inside they are loaded with character, but outside, they look similar. In addition to the outer appearance, all have one other thing in common. They are terrible for anyone in a wheelchair.

The design of this house makes in unfeasible to have Maggie upstairs in the bedrooms. That means two flights of stairs from the ground to the bedrooms. Maggie’s room is on that first level. She sleeps in what was originally designed to be the breakfast room. We added a shower to the half bath and moved some doorways around and it looks like a bedroom. There is no closet, but in general, it is working for us. Even getting her to the first level was difficult. To combat this, we had an elevator installed about 6 years ago. It is nothing fancy. It is outside, open to the elements, and goes from the back yard to the deck off the first level of the house. The deck did not exist until we got the elevator but it makes a nice addition to the house.

Maggie cannot be in the elevator alone. It is a slow trip, like 90 seconds, and she often needs suctioning or something. Moreover, the emergency stop button is bright red and within easy reach for her. Maggie would be hugely entertained if she could make the thing stop, start the alarm and watch me panic all at the same time. Therefore, someone is always in there with her. Of course, her chair is large and just fits on the platform lift. Hence, the extra person has to wedge him or herself in for the ride. If you do not position it correctly at the beginning, you end up on tiptoes standing at a strange angle all the way down (or up).

99% of the time, this arrangement works fine. It is not perfect by any means, but we are making it work. We live in California, the land of no weather. It is foggy in San Francisco, but who cares. Today, however, the remnant of a typhoon is slamming into San Francisco. Going down the elevator today was quite an adventure. It was pouring and we had to get downstairs for the bus. (Her night nurse wanted me to keep her home, but it is just rain and they do have a roof on her school.)

She was decked out in rain boots and a jacket with a hood. I had on a pullover waterproof jacket with a hood. I positioned myself so I could lean over her to shield her as much as possible. I had to hold the elevator button at the same time, so I could not move from my position. Our faces were pretty close together and Maggie thought that was hilarious. She had me and she knew it. First, she put her hand in my mouth and tried to pull my teeth out with her extremely strong grasp, but I shook her off. That made her laugh. Then she pulled the strings on my jacket so my hood tightened around my face. We were both laughing them. I just kept my finger on the lever to keep us going down. At the bottom I was so wedged in it took another 30 seconds to untangle myself to get back behind the chair so we could get out. We were both soaked, but it was a fun ride and my positioning did keep the water out of her trach at least.

My jacket has been handing in the shower for 90 minutes since she left. Now I have to put it back on to go to my physical therapy appointment. Brrr. Oh well, at least I can take the stairs.

Ingress and Egress

Getting Maggie into the house used to be a multi step process. Once we arrived home we had to do the following: undo the seven buckles on the straps that hold her into the wheelchair, lift her out, carry her up a flight of stairs, lay her on the floor of the living room, go back downstairs, carry the chair up the stairs, pick Maggie up off the floor and strap her back into the chair. That all changed about four or five years ago, when we had the lift installed in the back yard. That thing saved our back and our sanity.

When we installed the lift Maggie was about 10 and weighed approximately 35 lbs. Her wheelchair weighed more than she did. She was not heavy, but the constant lifting was getting a bit more difficult. We were lifting both her and her wheelchair numerous times each day. When we looked ahead, we knew we could not keep it up. Good thing, now she weighs over 60lbs and her wheel chair is well over 70. Without that lift, we would likely not still be in this house.

The lift is nothing fancy. It is a platform lift like you might see in a department store or church. The door on one level locks behind you and the door on the other level will not open until the platform fully arrives. It goes slowly, but it is perfectly fine. It is outside and open to the elements. That’s not too much of a concern because we live in sunny California. Oh wait, that doesn’t apply to San Francisco. Even with the rain and the fog there are very few times we can’t brave the elements for a few minutes. A huge downpour is a drag and I have at times sent the empty chair down the lift and then carried Maggie down the garage steps. Folks have suggested a cover for the top, and we have considered it; but I resist it because the only light we get is from the front and back of the house and I do not want anything to interfere with that.

This week has been wild weather wise. There have been downpours, sudden hailstorms and very cold temperatures for San Francisco. I’m not trying to compare to what many of you have to deal with weather wise, but remember we only have clothing to fit where we live and it has been insufficient this week. The cold temperatures have been wrecking havoc with things designed for a more temperate climate. Turns out the lift might be one of those things.

We returned from an outing the other evening. It was 6PM, very cold and of course very dark. It had been raining all day, but it stopped on our way home. There was just time to get up the elevator and stay dry, but the clouds threatened above. Maggie and her nurse Fely were in the lift and I brought the rest of her equipment upstairs. I remembered then that the lift had been a bit sluggish the day before and went on the back deck to see how they were doing. It was moving slower than usual. They were about 5 feet from the top and it stopped dead. This was not good timing. Rain and hail were looming. I tried all my usual tricks, which is nothing more than turning it off and on again. Nothing. Maggie was laughing and the nurse was getting a little panicky. I could almost reach Maggie and I tried to get the top door to unlatch so I could grab her, but there was no way to open it with the platform below the landing. I looked at the threatening clouds and considered how long it would take the elevator company to arrive. I considered 911, but….really? I tried again and the platform moved about an inch. It took several more minutes, starts, and stops, but the platform finally reached the top and they were free.

Maggie was still laughing and Fely was visibly relieved. Thankfully, it did not rain until we were back in the house. If it had, I would probably be looking for a new nurse about now.

So, I am home today waiting for the elevator guy. I can’t go out until I know Maggie can get back in.