Becky

 For reasons I cannot explain, I remembered this story today. Maggie was about 3. Mattel - the creator of Barbie came out with Barbie's friend "Becky" who used a wheelchair. It was sort of the "wheelchair Barbie", but it was NOT Barbie, per se. The perfect Barbie persona was unfettered by the stigma of disability.

Eddie was adamant that we had to buy that for Maggie. This was not a toy Maggie could enjoy then or now. It was sharp and angular and could hurt her. But Eddie, who was about 9 years old, was so insistent that she had to have it. He said Maggie was in a wheelchair and should have a doll that looked like her. He said he would pay for it himself and pulled out his (empty) wallet when we were in Toys R Us.. I just stared at him, floored. That was so sweet. I told him it wasn't necessary and I bought it for an incredibly inflated price.  I was so impressed with his thoughtfulness, the price didn't matter and  I forgot about the inappropriateness of the toy. I was proud of him; I figured the toy could sit on a shelf, a testament to her brother's concern for her.

As fate would have it, a couple of days after Becky joined our household, Maggie ended up in the hospital for an extended stay. The boys were shipped off to one of my sisters. (There were so many times I can't remember which sister stepped up when - but they all did). Maggie was in intensive care and Steve and I came home to sleep for a couple of hours. The house had been thoroughly cleaned just before Maggie got sick, and the boys were gone so it was still very neat when we came home. The only evidence that anyone lived there was the Becky toy in the middle of the living room.

I looked at it and started to laugh, despite the gravity of Maggie's illness. Becky the doll was tossed out of the wheelchair and was lying on the couch with her perfect hair hanging down across her face. Apparently, her wheelchair had been commandeered by the government. It was being used by one of Eddie's GI Joes, who had undoubtedly suffered an ugly injury relegating Becky to the couch.

It was one of those moments that pops into my head frequently. (In fact if I've written this before forgive me, I haven't slept in days) My pride in Eddie's generosity was not diminished in the least by this turn of events. He didn't plan this - it was just creative. But walking in and seeing this changed a very dark moment into a very light hearted one, for Steve and for me. In fact, just before writing this I started to tell Steve the story and he finished it for me. It affected both of us deeply and still cracks me up to remember.

Somehow I don't think the makers of the GI JOE guys would consider a wheelchair user. Too much reality for the buying public. But it could be a serious money maker.. At least they could be gentlemen and come and rescue Becky off the couch.

Hey! Another Saturday Night

When my head hit the pillow on Friday night I let out a long and satisfied sigh. There is nothing like sleeping in your own bed after several strenuous days elsewhere. There was so much going on over the past few days that sleep was in short supply. The  nurses all showed up while we were in the East bay, which was great. But I would get into bed at night and stare out the window unable to settle down. That changed when I got home. Last night as soon as the nurse arrived for the night shift I went to bed and slept like a rock. The sound of the alarm at 7AM interrupted the first solid sleep I've had in a couple of weeks.  It was wonderful, but not enough. I was tired all day today and need a few more nights like Friday to feel back to normal.

Tonight is not one of those nights, though. There is nothing worse than getting a phone call at 10:30 from the night nurse advising that she is unable to come to work tonight. It's too late to get a replacement so mom is on duty. Even if she had called earlier so I could get a couple of hours of sleep first... but nooooo. She has to wait until the last minute. I did head upstairs and sleep for an hour while Steve handled Maggie,. but that was just a teaser. Right now it's nearly 1:00AM and I am on duty until 7 when Steve will come back down to relieve me.

That means I will be completely useless tomorrow and Monday. There always seems to be a delay until I can recover from staying up all night. I couldn't even do it in college, so this many years later, fergedddaboutit. When you add in the sleep deficit from earlier this week, it's clear that I won't be right for days. If you run into me and I don't greet you, please understand.

So it's Maggie and me tonight. I connected the tubing to the compressor and attached the oxygen. I set out the supplies I will need for the night and will get to her meds next. the sat monitor is hooked to Maggie' finger,  I am not using the feeding pump tonight but have opted to feed her manually. I find it easier than wondering if the automatic feeding is leaking.all over the bed.  The suction machine is poised and ready to do its thing all night long. Maggie, who became very riled up with excitement when she realized mom was on duty,  is finally falling asleep. I try to tell myself  her being up so late means she will sleep harder longer, but I now from experience that 's not necessarily the case.

Staying awake is not difficult because there is so much that needs to be done. I have suctioned her three times since I started typing this. Preparing and delivering the meds takes at least two hours.  In between I have to feed and change her and do the catheterizations.

If there is down time, which is unlikely I can continue to unload boxes to get us moved back in.  But I probably won't. The move back into the house will be pushed back another day or so. C'est la vie. Right now my goal is to make it until 7AM when I can return to bed. There will be another contented sigh when I hit the sack in the morning, but it may be inaudible as I will likely be asleep before the head makes contact with the pillow..

.

Home again

Home again. Wow! The floors look fantastic. Everything is sooooo clean!! check out the before and after pictures of the same spot in the hall. This was a particularly bad spot near the  front door.

It was an arduous task from start to finish - and we're not finished yet. Tim and my nephew Matt moved the big furniture back into place but shelves and cabinets remain empty. But there is no deadline.  It's a good thing too, becausee we broke the giant china cabinent/sideboard in the dining room as we were putting it back. (that's the royal "we" I was in the next room. Nothing will be going back in there for a while.

Maggie is glad to be home. she enjoyed the adventure, but she was more than ready to return as we all were.

I want to sleep for a week.

Exile Day 2 - 2.5

Wednesday morning. We are half way through our adventure.  We really are getting the hang of things here. This house is fully equipped with all the staples, supplies, washing machine and everything else we could need.  There is no hot water this morning, but I will put Steve on that case when he wakes up. The cold shower certainly woke me up, though! (update – Steve fixed it)

We do not have internet access or television. I don’t care about the television but I do miss the internet. I can get and send email and post pictures to facebook on my phone, but nothing else.  Yesterday Maggie and I rode all over the place looking for a Starbucks so I could get some documents sent.  I did see a restaurant with free wi-fi, but I did not know what I would be walking into and Maggie is often a lot for people to handle. If one is sitting down to a full breakfast, they might not want the suction machine next to them. Starbucks is a known commodity; people are coming and going and generally not eating.  After searching for a Starbucks to the west and north, we finally found one about a mile South of here. Of course, when I told Steve he said there is one about 6 blocks to the east.  Go figure.  Today will be faster.

The mornings start cool and overcast but this sun comes out before noon. Yesterday seemed a little hotter, maybe mid 80s so we delayed heading into our backyard paradise. Even though we had Maggie in the shade on Monday, her arms and face were a little red. I did not want her in the sun too long because she’s such a delicate flower. We probably headed back there around 4:00, but we did not come back in until 7:30 or so. Maggie had specifically asked to go swimming but we needed to wait for Steve to come home. I just do not feel confident getting her in and out of the pool by myself. We have to keep her trach above the water level so a little slip could be disastrous.   She was only in the pool for a few minutes, but she had a fantastic time.

We stayed in the yard and barbecued steak that I purchased at a local butcher.  It was amazing.  As the guy was ringing up the steak, I spied some fresh Portuguese sweet bread and bought it for Steve. We also had fresh zucchini from the amazing vegetable garden in the yard. We were told to help ourselves to the veggies and we took that seriously. I told our friends/hosts that we have to come back next month because the tomatoes are not yet ripe.

Today my sister is coming to visit and we will likely have a largely repeat performance of yesterday.  Somehow, we will muddle through this horror. 

Steve stopped by our house Monday night to check on the work on the floors. The sanding is complete and the first coat applied. We asked for three coats, which should be done by tomorrow morning. They will be dry enough for us to return on Friday morning. Then I will have internet and TV, but I will have to leave the sunshine, swimming pool and vegetable garden here. Hmmmmmm.

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.  

Swiss Misses

Steve took Maggie to the park and I'm supposed to be working on getting more things put away. I was doing just that when I received a call from Steve's cell. It wasn't him, though. It seems he dropped his phone in Golden Gate Park and four beautiful Swiss girls found it. They called the last missed call on it, which was from home. They told me where they were and I ran over to get it. I left the house so fast I didn't even think to bring a reward, but they would not hear of waiting for me to go get one. I told them the Swiss were heroes and they liked that quite a bit. Lovely young women and I am very grateful to them.

I'm sure Steve doesn't even know it's gone yet, because he would be completely freaked out and would have started retracing his steps immediately. It would be very very bad if he lost this phone, that's for sure.

Of course he will still have to answer to me for not picking up my call.

And I will insist on a reward.

Friday follies

Our outing was delayed today by the death of our car battery. If that had to happen, I'm glad it was right in front of the house. I called AAA and they were here in 10 minutes. The battery was toast and he replaced it right on the spot. Maggie was amused by the whole thing for a while, but she was anxious to get going too. I gave her the AAA card and told her she was in charge. That helped a bit.

Our outing today was called "Women at the Hardware Store." We went to Home Depot to get the supplies to seal off the parts of the house where the floors are not being touched. We bought plastic sheeting, which Maggie carried on the back of her chair.   I have to say this is the first time I've been to Home Depot when it wasn't full of families and DIYers. It seemed to be all contractors today, so Maggie and I stood out like a sore thumb. That was fine, everyone was very ready to help us and offered to carry things to the car. I declined, because the purpose of the  Women At the Hardware store lesson is to be self sufficient. I headed back to the car pushing Maggie's chair with five packing boxes under one arm. The plastic sheeting and tape were on the back of Maggie's chair.

We are really getting there with the packing up. The additional boxes are for those last glass thigns that need to be wrapped. The wine boxes with the dividers were perfect for the individual glasses etc, but many things are too wide for those slots, so we are wrapping things in newspapers. We are having a little bit of fun as various things we never use are coming off shelves. This Franciscan friar wine decanter took advantage of his liberation from the bookshelf to catch up on some news from the Archdiocese.

come to think of it, the dead battery may be payback for this picture....

Have a great weekend everyone. We will be wrapping things up here and may be off line quite a bit next week. I'm not sure how much internet access I will have. Don't go away, though, we will check in whenever we can.

Moving things around

This week has been like living on a Chinese checkers game board. I just keep moving things around but don't really seem to get anywhere. We are working feverishly to get ready for the floor resanding. Things have to be completely moved off the first floor. Every time I walk upstairs I bring an armload of books or a box of framed photos from the dining room or something.

By 7:30 this morning I had all the fine china packed into those little plastic cases you can by and I have a service for 12 right here in my office now. I still have to do the glasses and that will take more time. All the breakables are going in the office. The pictures and books etc are going in the other bedroom and all the small furniture (dining room chairs, side tables, lamps) will go in our room. The biggest furniture will go in the kitchen or in Maggies room (because those floors are not being done) but some will have to go down to the basement. Tim and my nephew Matt will be moving the big stuff on Sunday.

The pictures are off the walls, the books are off the shelves and last night Steve pulled up the rug that goes from the downstairs hallway up the stairs and through the upstairs hallway. I wish we could keep in uncovered because the wood is so beautiful, but between the dog and our shoes, its probably not a good idea. Besides, it is really noisy when you walk around a 90 year old house without rugs.  Creeeak. (Could be my bones, I suppose)

Finding a a place for all this stuff is a challenge.    All of those rooms and the basement are already full of crap. I cannot believe how many things we own! There has to be some semblance of order so that we can find things when it's time to put it all back. Of course I have made several piles of things that will NOT be coming back downstairs as well. Some are going to the Salvation Army, in fact I brought a whole van load there yesterday. Some will just get rotated upstairs.

In addition to all this I am working on my pile of things we need to bring with us, especially Maggie's supplies. I started a pile in the basement, but this morning I decided everything that's ready had to go in the van so I didn't add more clutter to the basement. Of course that meant I had to clean out the van first, but that was easy. I used the drivers seat for garbage and the passenger seat for things I needed to keep and put away. Done. I loaded up the far back of the van with some of the stuff and will just keep adding as I go.  I have to make sure I don't take another load to the Salvation Army, though. I might end up donating Maggie's supplies.

Maggie "helped" me clean out and load up the car this morning. Basically she sat in her chair nearby and laughed every time I went in or out of the car via the wheelchair entrance. (which comes in very handy when you are cleaning.) She kept saying "Mom, Car" and cracked herself up. I have to say, she made the work a lot more fun. On about my 10th trip in that wore off and she said "Mom. Upstairs, I want my cd." She had enough and wanted to listen to some tunes. That sounded like a great idea to me too.

I can get back to my checker game later.

Government in Action

Mom Camp2.0 began last Friday because summer school ended last Thursday. Once again, it is my mission to entertain Ms. Maggie outside of the house every day.  We went shopping on Friday, went to Golden Gate Park on Saturday, walked with Grandma on Sunday and spent yesterday at Mountain lake Park.  I suggested numerous things to Maggie this morning and she was not interested in any. Museum? NO! Zoo? NO! shopping? NO!  Fisherman’s’Wharf? NO! Then I said, DO you want to go to City Hall and find out if Ed Lee is going to run for mayor? Yes!

Maggie is very civic minded.

San Francisco City Hall is a fantastic building. If you are local make it a point to go in there periodically. It is extremely beautiful and full of life, and today was no exception.  There were groups of people milling about, couples getting married and city officials running about. We went in to the Board of Supervisors Transportation committee meeting. It was cool to see the formal meeting taking place in the impressive chamber. It wasn’t exactly exciting, though. We stayed near the door,  I didn’t think Maggie would last very long. That meant we were right in front of the speakers. Every noise was so loud that Maggie kept jumping. I figured we better high tail it out of there before she freaked out.

We walked over to the Mayor’s office. (We did not see Mayor Lee to get the definitive answer on whether he will run in November.)There were lots of people milling about. One group in particular was about 30 strong. They were all large men, I believe from some sort of labor union. They were very polite, in fact several greeted Maggie enthusiastically. That made me smile.  Suddenly as we were standing right there with them, their leader huddled everyone together and said,  “Who are we?”  Those 30 men started exercising their right to free speech right there and then in unison and at the top of their lungs. It was some sort of demonstration and we were right in the middle of it.  Everything was friendly, quiet and orderly and suddenly they were shouting some sort of chant in unison.  Maggie and I both jumped about a mile.

The elevator door opened and I quickly pushed Maggie inside. She was really frightened and trying hard not to cry. A man in the elevator asked what floor and I said “anywhere but here.” I comforted Maggie and told him that the sudden yelling had frightened her. He said, “Hey, it scared me and I was upstairs.” For some reason that made Maggie laugh.

 So the civics lesson today was very thorough. We enjoyed the beauty of the showplace, saw the pageantry and formality of the committee meeting but had to admit it was boring and then were treated to a front row seat at a free speech demonstration. Mom camp can be very educational.

Now Maggie is contemplating a run for mayor. 

Nursing dominoes

Our foray out of this house for four days is completely upsetting the nursing apple cart.

It is Monday through Thursday, which is generally the most stable part of the week for us nursing wise. We will be gone for four days, or eight shifts. If we were home we would have two nurses covering those eight shifts. Neither of them is really in a position to commute across the bridge, so I had to rearrange. That created a domino effect. Those 8 shifts required changing about 30 shifts. These two could cover some weekend shifts and the weekend nurses on both ends of the week, who are better able to make the commute will cover the weekdays.

I had to cajole and make concessions and agree to pick up people at the BART (Rapid transit) station., but as of this moment, I think every shift is covered. Of course I will believe it when everyone shows up, but for now I can relax.

Did I mention the house where we are staying is in a sunny area and comes equipped with a pool?  I guess I have to add sunblock to my long list. GREAT!

Swimming is dangerous for Maggie because we have to be certain her trach stays out of the water. That's easy enough to do if there is more than one person to get her in and out of the pool.

Oh. And I don't have a trach.

It will be worth it.

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.

Daddy's Little Girl

Every evening after the nurse goes home, Maggie and Steve hang out together. Generally the three of us are hanging out, but I'm doing dishes or across the room and it becomes more of a Maggie and Steve show. Maggie loves this time with her dad.

Either she is using her talker to ask him to read or she is just "talking" to him. Eventually she gets restless and he asks if she wants to get out of her chair and sit with him. that is always met with an enthusiastic YES. Within 5 minutes of being in the big chair with him she is sound asleep. She generally stays there until the night nurse comes in for her shift.  Maggie would not sleep if we put her in bed, but sitting with dad is quite relaxing. Steve doesn't seem to mind, so the two of them are pleased as punch.

Last night Steve was reading Harry Potte to Maggie. I was watching the news. I directed Steve's attention to the TV because there was a story I knew would interest him. He stood up to see the tv better. Maggie was dumbfounded. This was interfering with her "dad"time. She started working on her dynavox and came up with this sentence. ---->---->--->
If you can't read it it says " Dad I want to read dad dad sit in chair dad"

In other words, "Hey Buddy get back over here and read to me!

Steve cracked up and did her bidding. Maggie was quite proud of herself.

 After a while she started to fidget and he asked if she wanted to get in the big chair. Yes! She was just waiting for an offer. She was out cold  in about 2 minutes and stayed that way until the night nurse showed up. It is not only a relaxed position for Maggie, but it can be very relaxing to hold Maggie when she's asleep. When she's awake it's very difficult because she moves so much, but all that settles down when she's really out. You can feel your own body settle down with her as you no longer have to shift to keep from dropping her. And it's not unusual to see this:

This picture is not from last night, I believe I took if last week. Its the two of them sound asleep both holding the tv remote. They didn't even move when the camera flash went off. 

And just so you know, Maggie's shirt says "Don't mess with Texas", which is one of her favorite sayings. We're not sure why.

Dripping with goodies

Another drippy day in paradise. We are on that line between very heavy fog and actual rain. It doesn't really matter what you call it, you still get wet.

Maggie wants an explanation of this thing we call SUMMER when she's bundled up waiting for a SCHOOL BUS in the RAIN. But as you can see, it doesn't really bother her too much.

The drippy day improved when Nurse Janice arrived. She had stopped at a Chinese bakery en route to our house and bought a box of warm pork buns. She gave me one which I enjoyed with my coffee.  

I guess a rainy day could be worse.

The Devil you Know

Our"new" health insurance kicked in November 1. I have the "new" in quotes because, as luck would have it, it was the same carrier as the previous job. It's far from perfect but I know what to expect. I believe that's known as "The Devil you Know."

Lately I've been receiving calls from the insurance company touting various programs they have for which Maggie qualifies. These are always "benefits" of the plan that are "free" to Maggie. There is always one problem though. These "free" benefits are not helpful to us in anyway. These are programs for specific diagnoses without regard to any other issues Maggie might have. Certain medications or frequencies of codes trigger something in a computer program and I start getting calls from well meaning but completely clueless individuals. I know what they are going to say almost before they say it because I receive the same calls about once a year and always several months after the policy has any changes at all. This time it was the same coverage, but a different employer, and we were treated as brand new policyholders. Same child, same doctors, same monthly bills, same supplies, same suppliers and pharmacies and same coverage. But we have to start over with all the calls.

Last week it was Program X which could ease my mind and allow me to talk to a nurse once a month to answer questions I have about Mary Margaret's condition. (They didn't specify which one). In the past I would sign up to look cooperative. I would sit while a nurse came here spent a couple of hours taking a report and never show up or call again because Maggie's complexity freaked her out. Now if it doesn't work I don't take it. I don't want to waste anybody's time, but.I wish that went both ways.

I listened politely to the program and then sighed and said, "Thank you very much but i don't think that's something we are interested in. I have a number of treating professionals available to me quite easily." She chided me a bit, which is never a smart thing to do. These nurses will talk directly to you every month. Really lady. I have one downstairs now and another coming at 11PM. I talk to nurses  until I'm blue in the face. My daughter is total care and this program is not designed for her. Thanks you but we are not interested. Done.

Or so I thought.

This morning I got a call about Program Y. Here's the gist of the conversation

Him:Can I speak to the parent or guardian of Mary Margaret.
me: Speaking.
Him: Free program, blah blah blah for which you daughter is eligible.
Me (bored) : and which of her 57 problems triggered this program.
Him: Well I can't tell you until I know her date of birth.
Me: I don't want to give you her date of birth or any other information until I know what this is about.
Him (panicked,) Ma'am there' something called HIPAA.....
I stopped him right there
Me I am intimately familiar with HIPAA. Here's her date of birth (confirm other information)
.Him: This program will help you better control your daughter's illness because you can talk to a nurse once a mon ...
Me: STOP - I received this call last week and told them this wouldn't work for her.
HIM, NO, that was program X, this is program Y. It's specifically tailored to your daughter.
Me: OK, what is it
HIM. (very concerned): I believe your daughter has been diagnosed with (drops voice and fills it with dread asthma. Is that correct? (sounding sympathetic)
Me - (losing all neck control and dropping my head,) OK, You need to listen to me.  No, actually that is NOT correct. She takes many of the same medications that asthma sufferers do which is probably why this was triggered, but she does NOT have asthma per se. She has the bigger meaner cousin of asthma and requires round the clock care. Hence this program is likely NOT tailored specifically to her at all, is it? You have absolutely no idea whatsoever what goes on in this house or what we have to do to care for her. There are nurses here 16 hours a day. I do the other 8 hours. If she did have asthma in addition to the other 30 things wrong with her, it would rank about #27 on my priority list. Please take my name off of these lists because it is inappropriate for you to use medical information - especially INCORRECT medical information - about my daughter for any purpose.  I'm sure that's somewhere in your HIPAA regulations.

The last thing I heard was him stammering. Another call was coming in and I told him I had to take it.
 Fortunately it was my mother and not anyone else. She loves these stories. When I told her she just said, Oh, the poor guy, but she had the giggles going pretty strong. I'm not sure she really felt  sorry for him..

I'm not always so brusque, but when entities that are supposed to be there to help us make additional work, it is beyond irritating.  They need to go back to denying claims for equipment, that's what they're good at.

Google +

If anyone is interested I am on Google + as Sally McDonald. Feel free to add or follow or however this new system works. It seems like a more grown up version of facebook.

I believe it's still by invitation and I have them - leave a message if you want an invite.

Carrying the Load

A drippy foggy morning here in the City by the Bay. It was really wet when Maggie left on the bus this morning for day one of her last four days of summer school. I put on a hooded sweatshirt to go out and meet the bus and I  haven't take it off yet.

Our weekend as busy. We had friends over on Saturday. We went to the Academy of sciences, but Maggie's suction machine was acting wonky so she and I came home pretty quickly. We stopped at Safeway to buy stuff to make lunch when they all returned to our house. I try not to buy too much when I'm walking, especially with Maggie because it is very difficult to get the groceries home. I find if I use one of those hand baskets in the store I won't buy too much. If I can't carry the hand basket I won't be able to carry the groceries the four blocks home. It worked out, but the items I bought were rather bulky and steering the chair home with that big bag of groceries was a little difficult. I kept stopping and switching arms trying to find a comfortable way to carry the groceries and push Maggie's chair in a straight line. Finally I just put Maggie to work and balanced the groceries on the back of her handle.

Worked like a charm. And she was pretty happy about it.

Checking in to end the week

Quiet week for blogposts. I am trying to take advantage of this time that Maggie is in school to get a lot of things done. School is out next Thursday and then it will the Maggie and Mom show for four weeks until school starts again. It will be very difficult to get anything done then so I'm donig my best now.

The time approaches for our great floor sanding and refinishing extravaganza and I have been getting rid of things left and right in anticipation of our need to completely empty the first floor of the house. My office is completely out of the dining room and in a dedicated room upstairs. There is a bed in my office in case everyone is home at once, but it has officially been changed from a bedroom to an office.

This change was necessary because I am trying to do a little more (paid)  legal work and want to be up and running by the time Maggie goes back to school in Mid august.. I cannot run a practice from the dining room with Maggie and the nurse right there. I need some space.  It's nice because the room is really a sun room and it is full of light. Good thing it's so bright. I have yet to decorate. In fact the only thing on the wall is the card my husband gave me for our anniversary a few years ago. I love this picture. It's hanging just above my computer and it makes me laugh every time I look at it.

Kind of explains a lot, doesn't it.

I think Miss Maggie is ready for summer school to be over. She has been falling asleep every day. She still loves going to school, but I don't think there is enough to entertain her and she's bored. Maybe it was just too many changes with a new site and a new teacher. She adores "Mr. Kyle" but she can't seem to stay awake. And she's not sick.

I have to start planning Mom Camp II for the next four weeks. The week we spend at Uncle Pat's house will be a something very different, but it will be hard on all of us. Caring for Maggie anywhere else will be tricky but it's a great option because he has a bedroom on the ground floor and we can get Maggie in and out easily. Also it's very near the zoo, so Maggie and I can get acquainted with the apes and giraffes. She also has Girls Rock camp the first week of August, but I really have to go with her to that. I can send her nurse, but I will probably do it myself to make sure she really gets int here and takes part in everything. We will take in the Picasso exhibit at the DeYoung Museum and I'm certain have a few trips to the mall, Maggies' favorite outing in the world.

Hope everyone has a great weekend. No holidays or fireworks this weekend. But we will make our own fun.

4th of July Hugs

This is Maggie giving me a hug on the 4th of July at Crissy Field. Note her patriotic scarf. Maggie's hugs are great. It takes her a minute but she just throws her arm around my neck.

It was breezy there and Maggie was most unhappy unless we had the wind at her back. Makes sense, she can't protect herself and it's kind of freaky to have the wind blowing in your face. But keeping the win at our backs meant walking in a straight line to the east. Getting back to where we started still had to happen but Steve used the crowds to shelter Maggie from the wind.

Let me put it this way...

While I do wish Maggie could speak I am constantly blown away by her ever increasing ability to communicate with her dynavox. The progress on this device seems to come in steep inclines followed by a plateau and then another steep incline. Maggie is definitely on an incline now. She is using her device for more and more things. She stops and thinks about what she is going to say and how to get the message across. That is something I have yet to learn. Here are a couple of examples.

One past weekend, Maggie wanted to go out. Our plan was to head to the park, but it was 7AM and I intended to drink some coffee, read the paper and get dressed first. She kept saying “mom I go to park” and I would absent-mindedly respond, Yes Maggie after a while.  She kept it up. Finally, I started listing off the things that had to happen before we could go. Well, Maggie I need to feed you and change you and then I need to get dressed.  

There was a pause as she formulated her plan. Then she started.  “Mom, I am hungry.”  No response from me.  “Mom I am hungry, mom water please.”  I looked at her and she gave me a wicked grin.  Ok, I know you are starving to death.  As I am feeding her she says, “Mom, I am wet.” (meaning diaper). I said, now you are just lying, but I will change you as soon as I am done feeding you.  She laughed and said, “Mom. Pants.”  I laughed and said, “Right. I will get dressed too.”  She knew what had to happen to get what she wanted and just started listing them off. We were in the park by 8AM that day.

She has developed other tricks too. The other day I turned on the television to watch something. Generally she just says, “I don’t like TV” in an attempt to get us to turn it off.  This time she said something new. She does not have the verb “watch” on her dynavox (or if she does, neither she nor I know where it is). She thought for a moment and then said, “wash TV.”  She found a word that SOUNDS like watch to convey her message.  That is really amazing. I looked at her and said YOU are a SMARTY MARTY. She just grinned and said, “Mom I am smart.”

She is also able to let me know that there are things a teenage girl just has to do.  This past Saturday she was not interested in the park at all. She told us on Friday night, “I want to go to mall tomorrow.”  I was impressed that she found the word mall, because I had not heard that before. Maggie made sure the message was not lost in the new vocabulary though. As soon as I hooked up her dynavox on Saturday morning she said, “Mom I go to Mall” and then quickly added a please to the end. I had to take a picture.

 I laughed and said and how are you going to get there. She pointed to me. Then she thought about it for a minute.  She smiled and went to work on her talker and said  “mom you are pretty.” We both started laughing.   She has definitely learned how to use language to get what she wants, and in this case, flattery will get her everywhere.  At least as far as the mall.

  

May the 4th be with You

Happy 4th of July. We make a quick Sunday trip to the Marin County Fair. It was HOT up there and we spent most of the time in the air conditioned exhibit hall where we ran into these guys.