Treading water and making space

Day 33. Lately I feel like I'm swimming. I can't find the bottom of the lake so my feet are moving to keep me afloat. It's progress, though. For the first few weeks I was under water. Not in a gasping for air way but everything was distorted and the sounds were sort of muffled. I think my head is above water now, hopefully to stay. It will as long as I can tread water. And anyone who knew me as a kid knows I can tread water and hold my breath for a very long time. (I used to freak people out with my ability to swim underwater for a length or two of a pool.)

Meanwhile, there is visible progress being made in the basement. As I mentioned before my first order of business has been to deal with the supplies and equipment. The company came to take the oxygen tank and the mist machine. I sent the giant pulmo vest machine back to the company to be refurbished for someone else. We donated a ton of supplies to a non profit and I gave some food and other stuff to UCSF. I have a bag of brand new trach supplies to take up there today. Yesterday I brought a giant case of diapers and other supplies to the school so other kids can use them. And before Steve left for work he loaded the walker and the bath seat into the van so I can take those and other things to California Children's services and they can give it to a family who needs it. We have also made a number of trips to The Salvation Army with donations of other things.

If nothing else, that has freed up a LOT of room downstairs. So much so, in fact, there is a distinct possibility that we will be able to park a car in there by the end of the weekend. That hasn't happened in well over 10 years. This shelf is a good indicator of how things have changed. Even the plastic bins in the after picture are empty.

          

Of course, the biggest piece of equipment is the van. I have to sell it. Actually I WANT to sell it. it runs perfectly. Steve floated the idea of keeping it to use for transporting his dad around. But I said no. We can manage with his dad in a regular vehicle and put his wheelchair in the back. His dad can transfer in and out of a car pretty well with assistance and we don't transport him very often. But the main reason for saying no is this: The wheelchair space is so large when there is no chair in there, there is an actual hole in the van where Maggie is supposed to me. That is too much for me to bear.  Steve agreed and the van is going on craigslist just as soon as I use it to move this equipment.

If anyone out there is interested in the van, let me know. I put this on facebook yesterday and actually generated some interest. Initially, it seemed folks thought I was giving it away and were praising my generosity. I quickly corrected that notion. Make no mistake, it is for sale.  It is a great car that served us very well and will make a huge difference for another family for many years to come.

It will be hard when it actually goes, but I will just have to tread water a little faster.

Sounds of Silence

It will be four weeks on Saturday. How can that be? It seems like a moment. The numbness of the first week or so has given way to immense sadness. I miss Maggie. I have dreams in which I am searching for her and cannot find her. I feel sad all the time. Not crying and weeping, just sad.

I don't feel like I've accomplished much of anything in those 4 weeks. Oh, I've been plenty busy, but I couldn't really tell you what I've done. There are so so so many things that have to be done. I can think of about 10 ongoing projects that are all related to Maggie. I've started about 5 of them, but have completed zero.

There are so many supplies and equipment to deal with. I've been trying to find homes for a lot of stuff. If you know of anyone who needs medical equipment or supplies, let me know. There is the van, the walker, the bed, and so much more. I have ideas for some and will sell some other things, but I really do not want to throw stuff away. I did toss anything that had been used, but I have boxes and boxes of sterile supplies.  We have already donated some stuff to a non profit that has a clinic in Central America, but they couldn't use the more specialized things. In an excellent reminder of how lucky we are, the woman said to me,

"we are mostly sewing up machete wounds, we can't use the trach stuff.

 In fact, I'm not sure anyone in the entire country even has a trach."  

I can assure you there are plenty of people in any country who may need a trach, but without the ability to care for the patients, they don't get it and simply don't survive.

Maggie never would have had a chance if she wasn't born so close to excellent medical care. She would not have survived 24 hours in that Central American country or many others in the world. She would not have survived in many parts of the United States.   But she was lucky and she was born in a major city with a level three medical center close by. I can't imagine anyone reading this needs to be reminded, but I'm going to do it anyway. Maggie didn't just survive. She thrived.For close to 20 years, she laughed, she loved, she learned, she ruled the roost. She was the heart and soul of this family and she is missed every minute.

It is so so quiet in this house without her. I can hear the clock ticking and a dog barking somewhere in the neighbors back yard. The other day I listened to church bells from St. Ignatius. I could never hear those things because of the cacophony of sound to which we had grown accustomed. But now the suction machine isn't going, the nurse isn't laughing with Maggie, Maggie isn't bossing us around and the Maggie Mix isn't playing.

The silence is deafening.

Little House on the Prairie Day

Today is what my mother used to refer to as a "Little House on the Prairie Day."   Though we didn't have a barn that needed mucking or a fence that needed repairing in the lower 40, her Little House on the Prairie Day meant she was going to tend to things that needed attention around the house. And that's what I will do today. It's not that I am so driven, because I'm not, but a series of events gives me no choice.  I am stuck at home because my car is in the shop. and deliverymen and wheelchair repair men are expected at various time today. I guess this is more of a 21st century, urban  life with a disabled person version of Little House on the Prairie. Almost the same 

October, for all of its World Series glory was a tough month for us, equipment wise. The car locking system suddenly decided to stop working, the oven went crazy just as a guest was arriving for dinner one night and . Maggie's wheelchair continues to be problematic. 

The wheelchair repair guy is coming today. We await a headrest that will work better but he won't fix that today because there is a more immediate problem. The chair has tipped over twice this week with Maggie in it. Something is amiss and Maggie is able to recline the seat when she gets excited. If all the equipment is hanging on the back when that happens the chair falls over backwards. Not good. Both times her nurse has been right behind her to break the fall, but that won't always be the case. When I described the situation in an email the guy said he thinks he knows what the problem is. I hope so.  Maggie arrives at 2:00 today, He is coming here at 3:00PM.

Of course, he may arrive just as the new stove is delivered, because they are coming sometime between 2:30 and 6:30. I have been without an oven since October 17 when it decided to go completely crazy just as our friend Austin was arriving for dinner.It is old and it is the one mismatched appliance in the kitchen. I think the electronic panel is what broke, but we are replacing it.  We have been waiting for it to go, but blowing out when it did was not great. (We barbecued, it worked out fine.) Steve had to turn off the circuit breaker just so we could turn the oven off. I've been lighting the gas burners with a match ever since.  Probably 75% of my cooking is on top of the stove anyway, but it will certainly be nice to get an oven and broiler back again. 

Now the car. Last Monday I arrived home in the blinding rain and noticed the automatic door lock didn't make a noise when I pressed it. I presumed the doors were already locked and thought nothing of it. When I came out in the morning the car was unlocked. The whole system just wouldn't work. Not on my key or in the car. Weird. I figured it must have shorted out in the rain, but I never noticed anything happening. I checked my car manual but there is no fuse for that system. Weird. There was a way to enable and disable the system and I figured somehow it was disabled. I followed the instructions and heard all the right beeps, but the locks still won't work. Weird. I lived with it for 10 days. It is a pain to deal with it manually, but not the end of the world. Still, with winter rains coming I need it fixed. I cannot open the door and lower the ramp to load Maggie unless the door will unlock and I can't have her sitting in the rain while I do it manually. 

I took the car in the morning and Steve picked me up. I may have to wait until the morning to get it because I have to wait for the wheelchair and oven guys. 

Sure they had bitter cold coming through cracks in the walls and just squeaked by in a hardscrabble life, but Laura Ingalls Wilder never had to deal with a state of the art oven and wheelchair and an automatic locking system that won't work. 

So I'm stuck here and going to deal with thing in the house. Right now I'm off to attack Maggie' room and get rid of some of the stuff in there. Tim is going to paint it and this is my chance to purge!! Little House in the City will be slightly less crammed if I get this done. 

Anyone need a judges' bench that fits over a wheelchair tray? 

Nothing sadder than a leftover Halloween Costume

  

Chamber of Secrets, alright

When Maggie is cooperative, Steve reads to her. She is very picky about reading material though. He has read her the Harry Potter books - or at least some of them. It's a slow process because she will only tolerate a few pages at a time.

I came across the book sitting on a chair in the living room and had to take this picture. Who else in the world uses a catheter wrapper as a bookmark?

Nothing goes to waste in this house.

March Madness

No, not basketball: equipment.

This month has been a giant fail for Maggie's various equipment needs. Some of that is my fault, some bad luck some design problems and some chronic failures. No matter what the reason, the problems have been annoying and inconvenient to say the least.

 On March 1, I cracked up the van which is an extremely important piece of equipment for Maggie. That was in the shop all  last week and we were car less. But they did get it back to me last Friday afternoon which was twice as fast as the other place would have had it. It was expensive to fix, but I have insurance and my outlay was limited to my deductible.  It is shiny and new looking and I'm really looking when I merge so I can keep it that way.

But the car was only the beginning. Even thought the car was back Friday, in time for Spring Break, we were only able to use it on Saturday for an outing. We haven't gone anywhere in it this week  because her wheelchair broke Sunday morning. Steve did an excellent job of stabilizing it temporarily, but it wasn't really safe enough to go in the car. Her physical therapist found some replacement tubing we could use. A repair guy from National Seating and Mobility CAME TO MY HOUSE yesterday and repaired it. That is excellent service. We can finally hit the road today.

In addition to our mobility woes, we have been dealing with Maggie's new dynavox, which arrived on March 6th and set up a few day later. The excitement of that was tapered by the glitchiness of the program and some design flaws that make it difficult to work with the wheelchair. Apparently there is a "fix" for the software problems but we just have to live with the design problems. You can imagine how pleased that makes me. I spent a week trying to get someone to acknowledge the problem - which they seem to think I was making up. I repeated the issue a dozen times saying it seems like it was not designed for someone in a wheelchair. After telling me it was my imagination and there was no problem, I hear, "Oh, this particular device  was designed for an ambulatory user". Uhhhhh. Isn't that the same thing as NOT being designed for someone in a wheelchair.  Once they "got it"  they basically said it's too bad for us. Man, for the amount of money they charge, you think they might be a bit more accommodating.

The lift system we have in the house has never worked right and while I can't attribute that to the month of March, it is another fail. I spent a few hundred bucks to fix it, and it only lasted a few weeks. I'm not sure what to do about that. I don't want to throw good money after bad, but I have to do something. It is getting more and more difficult to lift Maggie in and out of bed.

Now March is drawing to a close and the car and chair are working and we will get the software issue fixed for the dynavox and, because we don't have a choice, will learn to live with the other problems. The lift remains a conundrum, but it is on my list for April.

April is a month for Spring flowers and chirping birds.We can certainly deal with a busted lift.

Here are the lovely Spring Flowers I received last night for participating in a parent panel at UCSF. How can April not be better?

 

Shouldering the Responsibility

It may surprise you to learn that I have developed significant upper body strength. Maggie weighs just under 80 lbs of constantly moving parts and I lift her at least a dozen times a day. When she is in her 105 lb wheelchair with an additional 30 lbs of equipment, I am constantly wrestling it into place, pushing it up hills, ramps etc. It is a constant workout, but the benefit is limited.   I am out of shape, overweight and strong as a horse.

I do not even realize it until I spend time with someone who marvels at my strength. My friend Grace Young, aka my favorite Chinese Cookbook author or the wok evangelist, (check out her books here) did just that the other day.  

Maggie and I accompanied Grace to the huge Alemany Farmers Market on Saturday morning.  Grace always posts the most beautiful pictures of fresh food on her facebook page and I told her next time she came to San Francisco we had to make a trip there. Maggie loves going there too. There is a trendier and fancier farmers market at the Ferry Building, but it cannot compare to this one.  It is a huge farmers market with an unbelievable selection and absolutely no frills.

One “frill” that I would love to see there are curb cuts for the wheelchair. You don’t know how much easier those little ramps make life for wheelchair users and the people who push them.  A low curb is not too difficult. I just use geometry and physics; tilt, push, and the lift is minimal.  When a curb is too high for this it becomes more problematic. The bolt that secures the chair into the van sticks out from the middle of the bottom of the chair. I cannot tilt that chair back far enough to clear bolt on the high curbs. I have to dead lift twice, first the front and then the back. There were several like that at the farmers market. At the worst one, I could not do it by myself. Grace kindly offered to help.

She took the back of the chair as I manually lifted the front. That was perfect There has to be someone back there so that the chair does not tip over backwards.  I secured the front of the chair, raced to the back, and lifted the 200 lbs the necessary 7 or 8 inches. Grace was amazed. Apparently, she had been trying to do just that and could not even budge it.  Grace, though a heavyweight in the world of food and wok cooking, is a 98 lb weakling. (Here she is trying to convert Maggie to the Magic of wok cooking.)

I just laughed and told her this came from years of practice but that at our advanced age (we went to high school together so we are the same age) it comes at a price. My shoulders are shot. In fact, after several months of increasing pain in my right shoulder I was heading to the orthopedist.

In March 2010, I had surgery on my left shoulder for damage directly attributable to all the lifting I do. That is now doing fine, but my RIGHT shoulder has become increasingly uncomfortable over the past several months. I stopped reaching for things with that hand and tried exercises, but I needed something else. I went to the doctor yesterday and confirmed what I already knew; it is the exact problem I had on the left side.  As he gave me cortisone shot in my shoulder (OW!) he told me I could take comfort in knowing my body was symmetrical.

I could not be happier. 

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.. 

Laying in supplies

First week of school and so much to do. I do enjoy the free hours while Maggie is in school, those were in very short supply all summer. However, I am trying to gt myself back into the morning routine. Still lots to do before she gets out of here every morning and I haven't found my rhythm yet. In fact as I started to write this I realized I didn't give Maggie a supplemental feeding this morning. Sheesh! I sent my kid to school without breakfast.

The schedule is different this year. The bus is coming later in the morning and returning a bit later in the afternoon. I never fed her before school before because the night feeds were just turned off. Now with the extra 30 minutes, there is too long of a time between the end of the night feeding and her first feeding at school. Uhhhh. No wonder she looked a little blah this morning. She was hungry. There goes mother of the year. Slipped through my fingers in August!

The first day was all about gathering the supplies she needed for school. This is like the opposite of a squirrel storing up for the winter. Instead of a little bit everyday, we had to get all her supplies set up so that the nurse at school has everything she needs. I'm not talking pencils and notebooks either. I had to gather a stash of her food, tubes, diapers and all pertinent accoutrement for those, braces, equipment etc. Maggie sat in the driveway and laughed as I carried out bag after bag of things to send to school.

For every morning the rest of the week I ran up and down the stairs getting this or that  supply that we left out on day 1. Now that it's Friday I think everything is at school where it belongs.

Maybe now I will remember to feed her.

Forest, meet trees.

Exile Day 1

WOW.  I did not know my body could be quite so tired. Getting out of the house with all the necessary supplies and cleaning out the entire downstairs of the house was not easy.  As we stood in the empty house waiting for the floor contractor, I silently fretted that he would not show up. I had no reason to think that other than fear.  Can you imagine? We would have been up the proverbial creek.  He did show up, right on time, and started filling my house with his equipment.

Maggie, Steve, Brisco (the dog) and I headed to the east bay to stay at a friends’ vacant, but furnished (!) house.  We drove downtown in separate cars so Steve could leave his at his office and drive across the bridge with us. I have to have another person in the car with me if we are driving very far because Maggie needs assistance.  We arrived, unloaded the car and then took Steve to the BART station so he could commute back to the City to go to work. We did not even bring Maggie into the house at first. 

Getting Maggie into this house was not as easy as I imagined it would be. There are only five steps, and then it is all one level. I knew I could not get her up five steps in the chair. I thought once I took her out of the chair getting the chair up those steps would not be a problem. Wrong. I could not get it up the stairs by myself. Steve laid out these two planks to roll the chair up. Classy, right?  I am sure my new neighbors are quite impressed with the new kids in town. 

Note -- this would NOT be done with Maggie in the chair, which would be extremely unsafe and probably impossible.  

Even using the planks, I could not do it. It was too steep of a pitch and the planks were too narrow. Finally, I took all the equipment off the back and pulled chair up backwards.  That worked but it was a very physical endeavor.  I had to  carry Maggie in (76lbs), pull all the equipment off and carry that in (50 lbs) and then hoist the chair up (105 lbs) backwards  Very hard on my decrepit shoulders. I did it twice on Monday and will likely have to do it twice every day. Maybe not, though. Once we are out, we could stay out or at least keep the chair out until dinner. We can bring Maggie in for her treatments and meds and leave the chair in the back yard.

Speaking of the back yard – it is fantastic. Amazing. Yesterday we sat under a tree near the pool and I dozed in the chair. The yard is big enough and nice enough to hold a wedding. That is where you will find me every afternoon this week. It is a bit overcast in the morning but yesterday the sun was out by noon and it was a perfect afternoon, probably high 70’s with just a hint of a breeze.

Mercifully, nurses for both shifts showed up so I got some sleep last night. If I can do that another couple of nights I will recover, and then we can move back into our house.   That might start the exhaustion all over again, but not necessarily.  Other than the basic furniture, there is no rush to get everything back together.  We can do that leisurely.

And I am into leisure.  

Making a list and checking it twice

 The great floor adventure 2011 looms ever closer. I have been cleaning out shelves and closets preparing to move everything upstairs to the bedrooms or downstairs to the basement while we get the floors sanded and refinished in the living room, dining room, hallway, stairs and upstairs hall. (The bedrooms will have to be done another time.)

This is something we should have done at least 5 years ago, probably more like 10. I believe it's been 20 years since we did it and the floors are in terrible shape. This picture gives a good illustration. I pulled the rug back to show the amount of wear on the floors. Even under the rug the floors are dull but not worn out. When we return they will be gleaming

It's not the expense that made us put this off, it's the hassle.  When we did this 20 years ago we had too little boys. Maggie wasn't even born. We packed a bag and stayed at my parents house while the work was done. Now, we have Maggie and grandma's house is out because of the number of steps she has. I cannot carry Maggie up the stairs and would be completely unable to get her wheelchair in and out. We are going to stay in a friend's house across the Bay. There are three or four steps into the house, but then it's all one level.

We are lucky to get this offer. It's a fully furnished house, but no one is living there, so we won't be imposing on their lives.

And believe me we would be an imposition on the most generous family. These days it's not as simple as "packing a bag". We have to bring all Maggie's supplies. In addition to cleaning things out I have been gathering supplies we will need for our four days out of the house.  The more things I put in, the more I think of.

Finally I decided it was safer to make a list which I've pasted in below. The ones with x's are already in the box, so I have dozens of things to add, but I can't do most until the last minute. Note this list does not include clothes for Maggie (there is one word that says "clothes") and does not include anything at all for Steve and I.

Can you imagine seeing house guest pull up and start unloading all this stuff to stay in your house?
I think I would pull the curtains shut and bolt the door and hide. I kind of want to anyway.

Time to repeat my mantra - it will all be worth it.
_______________________________________________________________________________

Equipment

Wheelchair

Tray

Dynavox and charger

pole

Feeding 1.5 cases Vivonex, feeding tubes and syringes

 Meds

pulmicort

 Albuterol

atravent, twice a day,

 pulmizyme – in fridge

tobi – in fridge

flonase

 prevacid

detrol

 80mg aspirin

calcium carbonate

Phospha Neutra

Claritin

trinessa 

 zinc oxide

nystatin

triamcinolone

 elidel

saline bullets  XXXX

Machines

SAT monitor (plus sensor)

Compressor (plus tubing)

Nebulizer (plus tubing and nebs)

Suction machines (plus canisters, tubes, little suckers, and catheters)  

Feeding pump – don’t bring feed manually

Vest machine – don’t bring – do manual chest pt

Oxygen – order concentrator from CHME

Supplies

Diapers (3 packs)

Chucks (3 packs)

Catheters (I box)  XXXX

Gloves (I box)   XXX

Wipes    XXXXXX

Qtips

Trach masks

Trach sponges  XXXX

Extra trach XXXX

Extra g-tube XXXX

Big bottle of soap

sanitizer

Vinegar

Masks (for tobi)

Roll of garbage bags

Skin creams

10cc syringes

Power strip

10-12 scarves XXXX

Music – IPOD and Player

Clothes

books.

Floored

After five  years of ignoring the need, we are getting our hardwood floors sanded and refinished. It will look amazing and I will be absolutely delighted when it is done. I have to keep telling myself that  because getting from here to there will be a challenge. The very thought of the preparation for this is exhausting.

 Any type of home repair or improvement  is very difficult to accomplish with Maggie in the house. We operate with very little room for deviation and the noise and disruption of construction or repair are too much. We let things go far longer than we should to avoid upsetting the delicate balance of our little eco system.  However, when you reach the point of no return, you just have to bite the bullet and do it. That’s where we are with the floors.

Hardwood floors fun throughout the entire house, with the exception of the kitchen and bathrooms. In order to get them refinished, we have to completely move out, lock stock and spice rack. Everything.  The furniture, the rugs, stuff in the closets, everything.  We decided not to do the bedrooms this time because we have to have someplace to store everything. We can do those another time and simply vacate the upstairs without disrupting everything.  We are also leaving the carpet in Maggie’s room so we don’t have to move things out of there.  Now we can put the biggest pieces of furniture in the kitchen and in Maggie’s room, a bit in the basement and all the chairs and boxes of things in the bedrooms upstairs.   Four days later we will put it all back and reclaim our house with its gleaming wooden floors. (Refrain) I will be delighted when it's done..

As daunting as all of that sounds, it is only the beginning. We also have to figure out WHERE to go that can accommodate Maggie’s access needs and handle all the equipment and things we will need , including nurses coming and going at all hours. In addition to Maggie’s clothes and wheelchair, we have the oxygen (and tubing), the compressor (and tubes), the feeding pump (and bags), the suction machines (and tubes), the nebulizer (and tubes), the dynavox, the pole, 13 different medications and syringes, trach masks, catheters (two kinds) , extra trach tube and extra  gastrostomy tube, two cases of food, feeding tubes, diapers, chucks, wipes, and of course the IPOD full of Lady Gaga tunes with the player.  (Note, list is not exhaustive, that’s just off the top of my head).

We considered going to my mom’s house, but the flight of stairs into the house means carrying Maggie more than I can safely handle. We planned to go to my father in law’s house, where we can get Maggie onto one level easily, but it is an hour away and I wouldn’t have any nursing help.  Plus there would be no way to monitor what’s happening at the house and if we forgot anything it would be too difficult.  I considered a hotel but the cost is outrageous.  My brother Pat offered to let us stay at his house in the City. He will be out of town that week and his house has a bedroom and bath on the ground level.  We can have the nurses there and we can run back and forth to our house to deal with the contractor and to retrieve any forgotten supplies. As of this moment,  that is the plan. It is the best possible option and I appreciate it tremendously.

Still,  I am not looking forward to all the work and hassle of this. I just keep telling myself it will be worth it. And we won’t have to do it again for 15 years. It will need it in 10, but we will ignore it for 5 years. 

(Refrain) I will be delighted when it's done.

Walker Texas Ranger

After an inordinate amount of time thinking about and trying things out, it looks like they've finally found a walker for Maggie. I went to school today to see her in it. I actually thought this was hers, but discovered it still hasn't even been ordered. This is a loaner.

Maggie has some ability to move it around already and you can see the determination in her eyes as she tried to get where she's going. She will figure it out, I'm sure, but she has to actually GET it first so she can use it more often.  She lasted a little more than 20 minutes and then she was exhausted, but she can build up stamina as she gets more used to it.

Where we will put this giant thing is another question entirely. It will be at school most of the time, but on breaks and long weekends, it will be great to sue in the back yard or even at the park.

Have a Seat

Finally checking back in after several days of feelin’ poorly and not posting. Friday I snuck off to Monterey with two of my sisters, despite feeling less than 100%. That was fun, but I overdid it and felt worse when I returned.  It was totally worth it.We spent the day laughing our heads off, driving to beautiful Monterey and visiting my niece Bridget. It was a real day off for me. I was gone for 11 hours and it felt like a week’s vacation.  Nurse Josephine was here to meet Maggie’s bus when she arrived from school. Those two have a great time together so Maggie was not even mad at me when I returned. (If I am gone for a change of shift, Maggie really gets “mad” at me.)  I had to go to bed not long after arriving, though because I was exhausted, so she spent the rest of the evening with Steve.

On Saturday, I decided not to be sick anymore and just went about my day. That caught up with me by the end of the day.  We need a new chair for the nurses to use in Maggie’s room. The one that‘s in there is shot. This is not an easy task. It is difficult to find the right chair because it has to fill so many requirements at once. It has to be sturdy and comfortable but it cannot be too big because space is at a premium.  This chair will be in use 16 hours a day with people of various shapes and sizes getting up and down constantly. Because of the configuration of the room, this chair will have to be able to sustain numerous hits from the wheelchair, which means it should be upholstered, not wooden so the dings will not show. Finally, the night nurses need to be able to put their feet up and relax a bit when Maggie is snoozing, but there is no room for an ottoman. We have had a slim recliner in there for years; that seems to be the only thing that fits the bill. They wear out, though and need replacing every few years.  

 I saw an ad for a sale at the lazy boy store and went for a ride to South City to check it out. South San Francisco is not very far away but it takes a long time to get there from here. There are lots of signals and slow going, but eventually I arrived and started testing chairs.

Let me give you some advice. When you are physically worn out and pretending not to be sick, do not go test recliners. Every single one of them is so comfortable; it was all I could do not to fall asleep.   I decided that was like grocery shopping when hungry and left the store without making a purchase.

It's a good thing I didn't see this one, though. In addition to whatever physical bug I'm fighting, I'm still not over World Series Fever.

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November Thankfuls

November 5 – for my sisters, for the beautiful California coastline and for clam chowder

November 6 - for recliner stores, afternoon naps and for young enthusiastic nurses who want to care for Maggie

November 7 – that Tim arrived home safely at midnight and will be here until tomorrow.

Jeepers Creepers, where'd ya get those peepers?

Maggie has an appointment with a new ophthalmologist today. She has not seen an ophthalmologist in many years.  The school district advised me that they need a report or they will cut her vision services. Fair enough. I need the prodding. If something is a static issue for Maggie, such as vision, I will not follow up unless someone pushes me.  Maggie is visually impaired.  It is difficult to assess this impairment because it is so much less dramatic than her other physical issues. It is more subtle, but the impairment is significant.

Can Maggie see? Yes. Absolutely. She may need some assistance in the form of glasses, but her vision, per se, isn’t too bad.  She has cortical visual impairment meaning the problem is with her brain as opposed to her eyes.  It slowly gets better as the child ages. Maggie’s vision has improved, or more likely, she has adapted to the impairment. Maggie is smart and she has figured out ways to compensate for her inability to use her vision. For one thing, she has a phenomenal memory, which helps her maneuver her talker with ease. There are technical tools as well. Her talker has an audio scanning device that allows her to listen to the choices before she makes a selection; but she only depends on that for the stuff she does not already remember.  

Though there is improvement, Maggie’s vision problem does not fall into the “normal” cortical visual impairment scenario.  In many cases, the vision itself is impaired and gets better. In Maggie’s case, her vision is not that bad, but the visual impairment comes from her inability to use the vision she has. Maggie cannot watch television because she cannot handle the movement of what she sees.  Her visual issues are motor based; she has ocular motor issues in addition to all the other motor issues. Those of us with normal vision move our eyes all over to take in a full field of vision.  Maggie cannot do that. When something she is looking at is moving, like television or movies, she simply cannot process what she sees. She turns her head away.

Today we will see a new doctor. The old one retired. I loved that guy, even though I only met him a couple of times. I learned more about Maggie’s neurological issues from him in five minutes than I did from other doctors in two years.  Once I saw him, I understood things so much better. Now we have to see someone else, but I hear great things about him.

It will be interesting to see if he prescribes glasses. Maggie wore them when she was little, but she just ripped them off her face constantly.  As soon as she figured out how to grab them, they were often flying across the room. I can tell you this, for someone who cannot see movement very well, she sure thought that sight was funny. 

Here she is in her hot pink glasses as a little girl.

Bobble Head

The weekend started off with a bang.  Actually, it was more like a snap. At 5:30PM on Friday, Maggie’s headrest snapped off her wheelchair again.  You may remember this repair was done a few months ago and the Wheelchair tech pronounced is “Maggie proof”. I doubted him then and told him never to say anything like that out loud. Just goes to show you…

Maggie cannot use the chair without the headrest and I thought we were facing a long weekend of laying in bed or lying on the floor, but we forgot that Dad is a mad scientist/genius. He put some brackets on it to hold it together until we can get it fixed today. It is very wobbly sided to side, and Maggie looks a bit like a bobble head, but it’s usable. Dad saved the weekend!!

Good thing, too, because Maggie had some plans. On Saturday we were hobnobbing.  Maggie and I  attended the campaign kickoff for Margaret Brodkin’s run for the San Francisco School Board.  Anyone who has raised a child in San Francisco in the past 30 years knows who Margaret Brodkin is; or they have benefitted from some program she created even if they don’t know her name.  She has been a tireless advocate for children, and has made a few political enemies in this town because she doesn’t compromise her devotion to children. If you want more info on Margaret Brodkin and her campaign, check her out here or on Facebook. If you go to her facebook page you will see this picture of Maggie and I with our friends Lily and Lori.  (you can see Maggie looks less than comfortable because her headrest is loose.)

 Lori is one of those moms I talked about a couple of weeks ago. We connected when our girls were very young and have been a source of support for each other ever since. Lily, who just started high school, is on the Youth Commission for San Francisco.  Margaret Brodkin acknowledged Lily and another member of that commission in her speech. Maggie and I just basked in her fame.    

Sunday Maggie and Steve and I headed up to the Marin Farmers’ Market. It was lovely and I thought Maggie would really enjoy the nice weather, the colors and the aromas of the market. Meh.  She was less than enthralled. I don’t think it’s very comfortable for her to have that thing moving about and she has to concentrate too hard on her to relax and enjoy herself.  I liked it though and we had a delicious dinner with the bounty from the market.

 I sent her to school this morning in that wobbly chair. The first appointment I could get for a repair is at 2:00 PM. I will just pick Maggie up at school at 1:30 and we will head down there together. Maggie and I will hang out on the mat while the chair is repaired. I will caution Chris, the wheelchair tech, against making any proclamations about the chair being Maggie proof.

If she hears that, it becomes a direct challenge.   

A Game of Inches

Welcome to those of you here from the Disability Blog Carnival!

I have often written about strangers and the things they say or do when they encounter Maggie in her wheelchair.  Often those encounters are strange, but sometimes they  are quite pleasant.  The other day a woman watched as I loaded Maggie and her wheelchair into the van and she said, “Wow, she is a lucky girl.” I smiled. That’s not something I hear very often.  The woman was referring to Maggies’ ability to be out in the community thanks to the adapted van. And she was right, Maggie and I are both lucky to have it. It’s good to be reminded of that sometimes.

 It was funny, though, because as this woman marveled at the automatic ramp starting to lower itself, I was swearing under my breath. Someone had parked partially obstructing the wheelchair area next to the handicapped zone and I knew there wasn’t going to be enough room to load Maggie without moving the car.  It was only a matter of inches, but it makes all the difference in the world.

The ramp on Maggie’s van is 52inches long. The chair, with Maggie in it is another twenty four inches. There 

needs to be enough room to lower the ramp and then clear the chair off  the end of it.  That means we need a minimum of 76 inches, or 6’4” of space to get in and out of the van.  If someone parks  even a few inches into that space I cannot get her out. If it’s close, I can get her all the way to the end of the ramp and pick up her chair and lift it  just an inch or two over the lip at the end of the ramp.  Maggie is little, but with the chair and the equipment this is  about 200 lbs. Since my shoulder injury and subsequent surgery, I decided this is not a smart thing to do.

An additional 6 ft is space is hard to come by in San Francisco.  It seems every inch of this city has something on it. When parking at the curb, we have to make certain there isn’t a tree, a pole or a newspaper rack blocking the ramp. (see picture).There is nothing more exciting than finding a great parking place  and nothing more deflating than realizing it won’t work because you can’t get the lift open.

 Sometimes there is plenty of room, but some unseen and very small obstruction interferes with the proper operation of the ramp. Bricks and sidewalk breaks are the biggest issues. The ramp gets stuck on the edge of a brick and fails to open completely as in the second picture.  My husband was marveling at the damage to the front of my leather shoes. He couldn’t figure out what I was doing until he saw my remedy for fixing the ramp when its stuck on something. Rather than bend over and lift the heavy ramp, I simply put my foot under the ramp where it’s stuck on the bricks or cement and flip it open over the tiny obstruction. Wreaks havoc with the shoes, but saves the shoulder.  

Though she doesn’t have independence,(and I sincerely wish she did)  Maggie is luckier than many others who require the use of an adapted vehicle because she has someone to deal with things like this. I can hop in and back up the van a few feet, or kick the ramp loose from the bricks. A more independent wheelchair user could not do that.  If, for example,  someone is able enough to drive their own van, they have to be able to get in and out of it. If s/he can’t get into the car that small infraction or obstruction can be insurmountable.

A couple of inches can make the difference between total independence and total exclusion.   

Maggie's Request Line is Open

I posted the other day about Maggie making song requests. She has two song lyrics programmed into her computer. One is "All the single ladies put you hands up" which is Beyonce's Single ladies and the other is "I want to hold them like they do in Texas, Please" - which is Poker Face by Lady Gaga.

This morning she was not pleased with the music that was playing and kept slamming her hand down - which means NO! - and then started making her request. I got the camera to record it and she slowed waaay down because she thought the camera was funny. I did manage to capture her request and this short video (3 min) will give you a good idea how she works her talker. It's a bit tough to hear in the beginning because the music is on. You will note how pleased she is to get what she wants.

Thrill seeker

Often people comment on how difficult it must be to have a child in a wheelchair. While I certainly wish I did not have the experience to say this, like anything else in life, you just adapt to the circumstances. However, one thing that continues to drive us crazy is the wheelchair itself. Not the “thought of” having a child in a wheelchair, but the actual piece of equipment.  Maggie’s wheelchair is a pain.

That may be a bit unfair. Maggie’s chair is quite amazing.  Like a Timex watch it takes a licking and keeps on ticking. Maggie is hard on this chair. Her body never stops moving and she is generally extending her muscles against the head or foot rests. She snaps both off regularly. The last time Chris, the wheelchair tech, said he made the headrest “Maggie proof.”  She takes that as a direct challenge, so we will see how long this repair lasts. So far, the bolts have held, which is to say they havn'e snapped clean off like before (though she has worked the various tightening bolts and screws loose a few time).  

Making a chair work for Maggie is a difficult proposition. She does not have any trunk support and needs a fully supported seating system to keep her upright. The chair both reclines and tilts in space, which means you can angle the seat back without actually reclining the back. We use the tilt a lot. When Maggie is having any respiratory difficulty, we can tilt her back and the change in position helps her right away.  Though I originally thought we would use the reclining feature to change her in the chair, it turns out we rarely use it. It is too difficult, you need more than one person because all the straps loosen when the chair is reclined, so it really is not safe to use that feature.  

Despite all the bells and whistles on the chair, though, all the safety of the chair comes down to the straps. There is a harness across her chest, two straps on her hips and one across her waist. There are seven buckles holding the straps in place. The harness has four, hips have one each and the lap belt has one.

One of Maggie’s favorite things to do is to unhook all those belts. Maggie, it seems, is a thrill seeker.

She has been able to undo the bottom of the harness for a couple of years now. Every time you look over that thing is flapping in the wind, or occasionally she has lifted it over her head completely and it is hanging down behind the chair, useless. I refasten them if we are on the move, but she is safe in the chair without those on if she is staying in one position. The buckle on the lap belt used to have a lock on it, so Maggie could not open it, but Maggie broke that. Now we cover the latch with duct tape so Maggie will not undo it.   All the action is in the hip belt. If her hips are stable, the rest of her will be safe.  Of course, she figured out how to undo the hip belts this year.  That is not good

The first picture is the way it's supposed to look and the second one is the way is looks when she's "fiddling." (and then falls asleep from the hard work)

If her tray is on the chair, she generally will not bother with the buckles because she has to reach under the tray to get to them. Usually if the tray is attached, she is using her talker so she has plenty to do to keep her busy. She cannot have the tray on while riding in the car, though, and there is nothing worse than hearing that “click” of the buckle opening when we are driving.  I am driving in heavy traffic knowing the only thing holding her in the chair is a loose lap belt with the latch covered in duct tape.  This tends to make a mom a tad nervous.

Steve is working on a new configuration of the belts to make the “Maggie proof.”  I am sure she will take this on as a direct challenge too, and we will have to keep adapting to Maggie’s ever-evolving sense of adventure. 

Ground Control to Major Tom

One of the many treatments Maggie has to endure every day is “The Vest.” The vest was designed for people with pulmonary problems. The patient puts on the vest, which is hooked up to a machine that inflates the vest then shakes and vibrates the lungs. It shakes loose all the built up secretions that a person with healthy lungs clears on their own. My understanding is that the inventor of this machine had a couple of kids with cystic fibrosis (CF) and this machine is particularly helpful in that area. Maggie does not have CF, but many of her problems are similar to a patient who does. This machine has made a huge difference n the lives of many people. The treatment is not painful; in fact, it can even be fun. You just hook it up and it starts shaking your body.


We have actually had the machine for a long time. We used to use it all the time before Maggie got her trach. In fact, it probably delayed the need for the trach. Once Maggie adapted to the trach her respiratory status improved dramatically. The vest stopped working and I never got around to calling the company. (Really just the power cord needed replacing.) I meant to call and get a new one, but weeks and then months went by. However, Maggie was doing better and the machine made its way to the basement.

Maggie’s recent illness was quite scary. She was in the ICU with a respiratory flu. They had the vest going 4 times a day. Of course the machine in the hospital is newer and about 1/3 the size of the one we have. When we went home, I promised to contact the company and get our machine replaced or repaired so we could start using it again. I did not even have to worry about keeping that promise. The pulmonologists office called the Hill-Rom company who distributes the vest and they contacted me immediately. They sent out a new power cord, tubing and a vest via Fed Ex, so I had it the next day. That is incredible service. We are back in business.

The problem is there is so much equipment in Maggie’ room - oxygen tank, suction machine, pulse oximeter, feeding pump, tubes and other supplies for each and all the other medical supplies - we cannot fit anything else. I was secretly hoping the machine needed replacing so we could get the newer, smaller one, and maybe be able to squeeze it in behind the chair or something, but it was not to be. The vest machine now stays in the dining room when it is not in use. Since the treatment is only 20 minutes, that means it is in the dining room 23.5 hours a day. We need to do something. Steve is going to put it on wheels so we can move it easily, but I have a feeling it is a permanent part of my dining room décor for a while.

We were discussing the various treatments Maggie has to go through as well as our overflowing house.  I suggested Steve consider trying some of Maggie's treatments for his cold, which made a return appearance this week. He was standing in the dining room and indicating the vest machine said, “I was thinking of just strapping this on my back and heading to work. I will look like a Gemini astronaut.”

 He would look like that, and I'm sure it would be a big hit in the finanacial district.

 I do love a man in uniform and it would be out of my dining room! Win win!    

On the Edge of her Seat

Maggie is showing her teenage-ness in her own inimitable fashion. I have written before of her ability to unclip the belts holding her shoulder harness and seat belt on. Subsequently she progressed to unhooking the belt that straps her into the bus. It was only a matter of time before she figured out the groin straps. Those are the most important because they really secure her to the wheelchair. But only when they are fastened.

Not any more. Maggie unhooks them with reckless abandon and it's only a matter of time before she falls out of that chair. We are working on remedying the situation, but it is difficult because Maggie has a need/obsession to show us that she has figured it out.  I tried to explain just because you KNOW HOW to do something you don't have to do it all the time. For example, I KNOW HOW to throw you out the window, but I don't DO it. She just smiles and unhooks the buckles.  I guess its not different than another 16 year old acting out; she's living on the edge.

For now I just have to keep the tray on the chair so she can't get to the belts - or at least not easily. . We are also considering lengthening them so she cannot reach of even putting lockable clips on - but we have to balance the need to get her out of the chair quickly.

Generally I'm happy with behavior that is age and emotionally appropriate. This one, not so much. Oh well, other16 year old kids are getting driver's licenses. That's a whole different kind of seat belt issue.

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Today is the launch for the new cookbook Stir Frying to the Sky's Edge by my good friend Grace Young. check out a review  http://www.inmamaskitchen.com/Book_Reviews/international_cooking/Stir_Frying_YOUNG.html