Wednesday, January 29, 2014

Bumper cars

We have had a crazy few months around here. Crazy. And almost none of the craziness involves Maggie. Every since Thanksgiving Steve's dad has been in and out of the hospital or care facilities. Now he's healthy again, but it was time to make a move. As of last Saturday, he's been living in an assisted living facility here in San Francisco.

Choosing the right type of facility for an individual is very difficult. You have to match the needs of the individual to the place. We had a few options from which to choose, some were cheaper, some were more expensive, some had different models. After much teeth gnashing and hand wringing, Steve and his siblings made a good choice and we moved him in.

Because his phone could not be connected for a few days, we bought grandpa a "go phone" and programmed the speed dial so he could reach any of his kids or their spouses with one button. He tried it out and decided that was great. The only problem - he doesn't answer the phone when we call him. Hence, Sunday morning he didn't answer our call to see how the first night went. We were headed out to see him anyway, but we were concerned that all his needs had been met. It was important for everyone that he get off to a good start.

Maggie and I headed out in one car and Steve went separately. Maggie and I could only stay a little while but Steve wanted to stay longer. An assisted living facility is completely accessible because nearly everyone in the place uses a wheelchair, a scooter or a walker. It will be a breeze to take Maggie to see Grandpa now! Bonus.

When we arrived I was purposefully making my way to his room, praying that he wasn't laying in bed awaiting assistance. (He wasn't). I suppose I was a little too focused on getting there. I didn't even slow down when I said hello to the lady sitting in the chair with her walker next to her and a pleasant "good Morning" to another resident sitting in her wheelchair in the hallway. Both barely had time to look up because I just kept going.

I should have slowed down.
But I didn't.

Turns out the sweet elderly lady in the chair was farther into the hallway than I realized and I clipped her back wheel with Maggie's wheel. All of a sudden she spun around 180 degrees.  She didn't fall out of the chair or anything, but I don't think you have ever seen a more surprised look on a woman's face. My heart dropped and my knees buckled a little bit  and I started spitting out apologies as fast as I could. "Oh Ma'am I am so so sorry" I thought there was room to pass and i didn't mean to hit your chair. Are you ok?" etc etc. She was shocked and looked at me and then at Maggie, who I realized only then was laughing uproariously. Keep in mind, Maggie doesn't really make much sound when she laughs, but once you see her face you know how hard she's laughing. The lady looked back at me and just started to laugh because it was hard not to when you saw how funny Maggie though it was. She said, "that's ok dear."

I felt like a heel. And Steve was right behind me saying, "Uh, maybe you need to take it a little easy here. We want Dad to make friends, not enemies."

Maggie was still trying to catch her breath because that was just about the most fun she has had in weeks.

I wonder if we can find any accessible Bumper Cars ride. Maggie and her new friend would really enjoy that, especially if they let me drive.


Monday, January 27, 2014

Just Say NO



My friend Sharon gave me a little present the other day. It is a pre-programmed button that says NO. In fact it says NO about ten different way.

No!

NO NO NO!

Did you hear me? I said NO!

It's hilarious and probably something everyone should have handy. Mom can I take the car? NO NO NO! Another volunteer opportunity? NO WAY! solicitors at the door or on the phone. "Did you hear me? I said no." Aren't you making dinner? Absolutely NOT.

In this house I could think of a certain someone who will really make excellent use of it. Maggie has a very clear sign for no. She just slams her hand down on her tray. She does it so hard there is a lump on her wrist where she hits.  This button gives her some options and intonation. She can't be sure which "NO" will come up, but it doesn't matter because they are all pretty funny.

She was practicing last night and could not stop laughing.


I have never seen Maggie adapt to something so quickly. I showed her once and she was clamoring to have that thing on her tray. This is a powerful little tool for her. Her favorite line is "Absolutely not" but every single one of them made her laugh. 

Sharon tells me there is also a "yes" and a "maybe" button. Maggie doesn't really have a way to say maybe so that might be worth a try, but what's funny about maybe? Besides, her tray will get a little crowded with all these options. Obviously her dynavox has yes no and maybe on them, but Maggie needs something quicker and with more intonation. 

If there's only room for one, I think Maggie has made her choice. 

 JUST SAY NO!
  


Thursday, January 23, 2014

Duct Tape Free Zone

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

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

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



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


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

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



Monday, January 20, 2014

Will they ever return?

It's Monday morning. It's a holiday for some - Maggie for one - but it still feels like Monday. There is a malaise in the air which is due in part to the sad finish to the 49ers season yesterday. We will marshall on. It's what we do.

We had an extremely busy weekend mostly dealing with issues involving Steve's Dad. Lots of logistics at play there. Last weekend was the same and though I promised Maggie a trip to the mall, it never materialized. That meant we HAD to go this weekend. Maggie really doesn't ask for much in the way of outings, so it's the least I can do. Saturday afternoon we were going to be moving my father in law's stuff, Sunday was the game (I didn't realize it started so late). If we were going to get a mall visit in, it had to be Saturday morning. One problem. Steve was using the van to take his dad out. We cannot fit two wheelchairs in the van. What to do?

I know. Easy peasy. We will take the bus. Steve could drop us off downtown on his way to get his dad. Maggie and I could hit the fancy malls downtown and take the bus home. The San Francisco Municipal Railway (Muni) is handicapped accessible. We have done it several times on the metro (trains) but had never tried the bus. I've seen others in chairs on the bus and know many of the buses are equipped with lifts. We can take any of four bus lines from downtown to here and have only a two block walk.  If one bus isn't accessible, the next one will be. We can do it! It will be an adventure.

It was.

We waited at a stop serviced by 3 of the 4 possible lines. (5, 21 and 31). I hoped for a 31 because it was not an electric trolley. Those trolley's are kind to the planet but are very jerky for the riders. First bus to appear was the 31. Wish granted! And it had a lift for the chair. This was going to be easy. As a bonus we had the nicest, most accommodating driver in the City. We're off!

Sort of.

The lift takes a few minutes to do and we were taking a while to get settled. I maneuvered past another wheelchair on the bus. That man was giving me directions on fitting past him. No problem. The driver had readied a spot for the chair, flipping up a seat to reveal a place to lock in. I got her chair into place and realized only then that the left brake was broken on her chair. Not GOOD. I tried to hold it in place with only one wheel locked but could not maneuver the straps. A kind passenger from the back of the bus came up and put a seat belt around her chair. I decided I would have to just stand behind her and hold the chair in place while holding on to keep from falling myself. Not good. And also not terribly effective. She wasn't rolling around the bus or anything. One wheel was locked and there was a seat belt, but she was pivoting around on the unlocked wheel with me trying to hold it steady. My wrist still hurts from that.

The driver stopped the bus and came back to lock her chair in better. I feared the broken brake would put us on the streets, but that was not a problem. There were giant tie downs, but I could not get them to move. Neither could the driver. Again, I thought we were out of luck.  Another passenger, a lady with two different shoes on, started giving the driver directions. Push that BUTTON, right THERE! He listened to her and voila! the tie downs unlocked and Maggie was secure. I thanked the driver and the lady and the man in the back and I sat down wiping sweat from my brow. Now we could have the regular adventure of riding a bus across the city, which is more than enough, believe me.



The man who originally helped me got up to disembark. He was getting off the back of the bus and the driver yelled at him to come up there. I watched warily. I thought if that guy didn't pay his fare or something I was going to do it for him. If he was going to get in trouble I was going to intervene. Not to worry. I heard the driver say "Thanks for your help before" and hand him something. I don't know if it was a pass for another bus ride or what.  As the guy walked past me I said "Thanks again" and he just nodded.  Nice moment.

I thanked the lady with the mismatched shoes as she left too. She just waved it off. Nice people on the sometimes rough 31 Balboa on Saturday at noon.

Maggie rides buses all the time and was non plussed by the entire thing. In fact she fell asleep while I sat on the edge of my chair for the entire 20 minute ride - made 30 minutes because of us.

Finally we arrived at our stop and I could not undo the tie downs. The driver said, "this is your stop." I said "I know, but she's stuck." I thought we were going to be like Charlie on the MTA and never return. (Listen to this great song below.) The driver readied the lift and then came back to help. At first he couldn't do it either. I longed for the mismatched shoe lady, but she was long gone. Suddenly the driver got it and Maggie was free.

 I went to get off, thanked everyone on the bus for their patience, thanked the driver and told him I needed a drink. He said, me too, but I can't for several hours yet. Fortunately, this is the store between the bus stop and our house. It's actually called "Drink Liquor." I didn't partake, but it's nice to know it's there.



I know I am spoiled having our van. I know there are hundreds of people who go through this every single and I am very very glad not to be one of them.

I am not used to relying on the kindness of strangers, but I had to on Saturday and the good people on Muni came through for me.

Here's Charlie and the MTA. I've been singing it all weekend.


Thursday, January 16, 2014

Give NOW before the 49ers eliminate the Seahawks!!!

The 49ers and the Seahawks have quite an intense rivalry on the football field. It's fairly new as rivalries go. Frankly we snotty San Francisco fans didn't really have the Seahawks on our radar but they have really come into their own in recent years. In fact, they actually had the nerve to beat the Niners early in the season. The 49ers responded with a win later in the season. This rivalry will be settled for this season on Sunday Afternoon then the two teams meet in the NFC Championship game.

Good natured rivalries are good things. People a little more pumped up and participants work just a little bit harder. Because of the good nature, everyone has fun too. Too often rivalries turn kind of nasty and then no one has fun. Sports fans assaulting those rooting for another team has become a real black eye for some sports rivalries. The 49er/Seahawks could have easily become that sort of thing, but because of a couple of decent and rabid football fans it is going in the opposite direction. It is a rivalry for good instead of evil.

The story starts with the Seahawks fan hiring an airplane to fly their 12th man banner over Candlestick Park during a game. It didn't sit right with some fans, but instead of getting nasty, they got creative. A 49er fan named Aasheesh Shravah decided to raise money to put up a billboard near the Seattle stadium showing all the Superbowl trophies. He needed to raise money to do that and received overwhelming support. He raised more than he needed and Shravah decided (with input from those 49er fans who made the donations) to donate the extra money to Seattle Children's Hospital. Win!

A Seattle fan named Christopher Hart responded in kind. He put up a website that will raise money for both Seattle Children's and UCSF Benioff Children's Hospital. Win win!  Now both an anonymous donor AND the San Francisco 49ers will match those donations to UCSF up to $100,000.  Win win win.

UCSF Benioff Childrens' hospital has a opportunity to raise three times the amount folks donate. That means  $300,000 if the overall donations reach the $100,000 mark. I don't have to tell you that $300K can buy a lot of medicine.

UCSF Benioff Children's Hospital is Maggie's home turf. She has spent far too much time in that place, but I know that because of the care she has received there, Maggie is here today living life to the fullest. If I could match the funds as well, I would. But I can't. We just don't have that kind of money. Still I know If I donate $20 it becomes $60 and if I get 100 friends to do the same is becomes $6000. That's something. I hope some of you will come through.

This is where the problem comes in for 49er fans. We plan to win this weekend and to win big. The website  http://www.gofundme.com/12thspirit will stay up and raise money only as long as the Seahawks are in the playoffs. That means the time to donate is NOW because they should be out by Sunday afternoon!

Root for your team. Support a rivalry that is doing some good in the world. Let these guys know this is the type of sports rivalry where everyone wins. Help kids in two cities.
Don't wait until we eliminate the Seahawks. That will be too late Go to the site now and give a donation of whatever you can. If you want to do it in honor of Maggie, she would love it. 


And, by the way Go Niners!

Also Kaepernicking is very difficult when you have cerebral palsy, but Maggie gave it her best. 


She will leave it to Colin. He knows what he's doing. 



Tuesday, January 14, 2014

. Miss Congeniality - Just ask her

It's so easy to point to Maggie and take note of the things and abilities she lacks. She cannot walk, she cannot talk, she cannot eat etc etc. It is harder for people to note her strengths. Enter mom and her blog.

Let me assure you all, Maggie has plenty of strengths. Among those is an overabundance of self esteem. She is her own biggest fan. It's hard not to agree with her because it is so hilarious.

By way of example, take this evening. Maggie was using her talker to say the nurse (Fely) is coming tomorrow. Generally she says "Fely is coming tomorrow on Wednesday to take care of Maggie"  Today she switched it around. She said, "Fely is coming tomorrow to take care of Miss.....".

And the sentence stopped. Maggie waited. The change made us all pay attentions - which was of course her intent. 

Fely Asked her, "Miss Third Avenue?"  Maggie slammed her hand down to say NO.
"Miss San Francisco?" Again, an emphatic NO
"Miss California?"  Yes. Yes, that's it. Miss California.

She inserted that into her sentence and was quite pleased with herself. 


She will undoubtedly crown herself Miss America and then Miss Universe, but she wants to get out of her teens first. No bathing suit competition. But she really does want World Peace. 

Saturday, January 11, 2014

Mom at Bedside, Appears Calm. (But she's not)

The other day my friend Dave, a physician, sent me this article from the New England Jersey of Medicine. It is an article wrtten by a mom remembering a period of serious medical problems for her son. Interestingly, though, this particular mom is a doctor and so is her husband, the father of the child. That status doesn't really help them though. They are frightened parents, just  like so many of us. It captures the fear and helplessess that so many of us feel when our kids are in the hospital..

It's worth a read. I am giving the link and copying the article below so you can read it either way.

My favorite line "admitteddischrgedadmitteddischargedadmitteddischarged"

Been there. Hated that.

http://www.nejm.org/doi/full/10.1056/NEJMp1312171?query=featured_home


____________________________________

Mom at Bedside, Appears Calm

Suzanne Koven, M.D.
N Engl J Med 2014; 370:104-105January 9, 2014DOI: 10.1056/NEJMp1312171
Article
We carry a nylon lunch bag everywhere we go, royal blue with purple trim, containing two plastic syringes, each preloaded with 5 mg of liquid Valium, plus packets of surgical lubricant and plastic gloves. At the first sign of blinking or twitching, we lay him on his left side, tug down the elastic waist of his pants, part his small buttocks, and insert the gooped-up tip. Within moments, the motion stops, as if an engine has been switched off. Then he falls into a deep sleep. When he relaxes, so do we.
He's 5 years old, the first time. Our babysitter takes him to a pizza place for lunch. He laughs mid-slice, blinks his eyes several times, slumps to the floor, and climbs back onto his chair. She hesitates — what was that? — and then calls 911. She pages me. I keep the message stored in my beeper, periodically daring myself to relive my first reading of it.
I meet them in the ER at the community hospital near our home, showily flashing my downtown hospital ID tag. Soon my husband rushes in, wearing the ID from his downtown hospital. All the tests are negative, they say. Bring him back if something else happens.
Something else happens. The next day, I skip work and keep him home from school. He sits happily in front of cartoons while I pace and polish, pace and fold. Maybe the babysitter overreacted, I reason. Maybe he's just a goofy kid. The moment I stop watching him, he cries, “Look, Mommy! Look what my hand can do!”
Downtown. No mistaking it this time. Grand mal, big and bad, right on the gurney. Lumbar puncture. MRI. All negative. Before we go home, the neurologist asks if we have further questions. “Just one,” I say. “What do we do if he does it again?” The neurologist seems surprised. His raised eyebrows silently ask, “Aren't you both doctors?” He hands us a pamphlet.
Dilantin. Chewable yellow triangles three times a day. Triangles to first grade and the beach and day camp and a sleepover. The other kid has cochlear implants. “Don't worry,” his mother says, accepting my baggie of pills. “My kid comes with instructions, too.” We become members of an exclusive club no one wants to join.
One day, almost exactly a year later, the school nurse calls. “It's been 10 minutes and it's not stopping,” she says. I'm home that day and I screech over in seconds, leaving one tire on the schoolyard curb. He's in the nurse's office, lying on the plastic divan reserved for kids with sore throats, bellyaches. Fakers. I know what this is called, this shaking that will not stop. I know how to treat this, in adults. But all I know now is how to hold him, jerking, foaming, soaked with urine.
In the ambulance, the foam turns bloody. I ask the ponytailed EMT whether he will die. She pretends not to hear, turns to adjust his oxygen. At the local ER, I bark instructions. “He has a neurologist downtown,” I say. “He needs to be transferred.” The ER attending, who has been bending over him with her lights and sticks, straightens. “I think,” she says, not unkindly, “Mom needs to wait outside.”
Tubed, taped, lined. Ready for transfer. There is one last thing. The ponytailed EMT hands me a specimen cup in which the source of the blood that had burst my heart open rattles. “Here, Mom,” she says, smiling. “For the tooth fairy.”
Back at home, 40 pills a day, crushed, on spoons of Breyers cookies-and-cream ice cream. Still he blinks and shakes, shakes and drops. The weeks go by like a slow and sickening descent, landing on the carpeted floor of the playroom in our basement. We spend most of the day there because it's the only place in the house where he can't fall down the stairs. At night we tuck him tightly into Star Wars sheets but still find him on the floor in wet pajamas. If the Valium fails, we call 911. A fire truck arrives with the ambulance, and the firefighters, with their giant boots and helmets, crowd along with the EMTs into the small bedroom our boys share, delighting our younger son.
He is admitted. He is discharged. He is admitted and discharged again. Admitted. Discharged. Admitted. Discharged. Admitteddischargedadmitteddischargedadmitteddischargedadmit-teddischarged. My husband, too tall for the fold-out-chair bed, takes the day shift. I pad in slippers through the hospital at night with the other parents. We buy one another coffee. We commiserate. I grow more at ease in this sleepless company than with anyone else — my family, my friends, my medical colleagues. I also cling to the nurses, Jen and Sarah and Kristen and “the other Jen,” as we call her. One leaves my son's chart in his room, and I sneak a look. “Mom at bedside,” a progress note reads. “Appears calm.”
Finally, a break. The sixth or seventh MRI shows a subtle irregularity in the right temporal lobe, possibly a tiny tumor, a focus. We love the very word “focus,” a raft of hope in a vague and endless sea of anxiety. Never have parents been so happy to learn their child might have a brain tumor.
The surgery works. The medications are discontinued. I don't ask to read the pathology report, the operative note. I am startled by my lack of medical curiosity. I wish to know nothing other than that my son no longer shakes. After the staples come out, we pile into the car and take a 9-hour drive — unthinkable during the previous months — to visit my in-laws. On the way home, my husband glances at the back seat through the rearview mirror and, returning his eyes to the road, says, “He's blinking again.”
A second surgery. A third. This time, we're lucky. “The luckiest unlucky parents ever,” I joke.
Years pass. We renovate our kitchen and find the lunch bag with two dried-up syringes of Valium in a cabinet about to be torn down. Our emaciated boy doubles in weight and then doubles again. He graduates from high school. He graduates from college. He moves away from home.
I do not know how much he remembers. He rarely speaks of those years, except to comment on whether a barber has done a good or not-so-good job of hiding the scars.
As for me, occasionally my terror will snap to life again, as if I've been holding it by a long and slack tether. It happens when I am walking through the peaceful, leafy streets of our town, pumping my arms, working my aging heart and muscles, quieting my busy mind. A siren sounds. An ambulance appears. Though I know from reading the log in our local paper that the emergency is rarely dire — a dog bite, an asthma attack — and I know that my son is nowhere near, I still stop to see which way the ambulance is heading.
People ask, “Is it easier or harder to have a sick child when both parents are doctors?” But this is the wrong question. There is no hard, no easy. Only fear and love, panic and relief, shaking and not shaking.
Disclosure forms provided by the author are available with the full text of this article at NEJM.org.

SOURCE INFORMATION

From Massachusetts General Hospital and Harvard Medical School — both in Boston.




Friday, January 10, 2014

A Disturbance in the Force

Maggie runs this house. Her schedule, her rules. You don't like it, too bad. She is large and in charge (well except for the large part)

Lately, different things have happened that take some of the focus off of Maggie. Steve's dad has been ill and we had to get him here to San Francisco to keep a better eye on his recovery. That took a lot of energy. Maggie tolerated that because it was grandpa and she adores grandpa. Plus having him in San Francisco means she will get to see him more often, so she still wins on that front.



The dog is aging rapidly and having some health issues and there has been lots of focus on him. That is not constant, though so it is also ok. Maggie notices, but allows it.

This morning there are other things afoot that are taking the focus off of Maggie. Steve has a medical procedure this morning and Tim started a new job. Either would have been ok, but both - no way. That put Maggie second to last in the attention getting department (just ahead of yours truly.)

Maggie decided enough was enough and  yanked out her trach tube. In fact she pulled on the ties so hard she broke the flange. Of course I quickly replaced the tube before I noticed it was busted, so I had to get another tube ready.

There is really nothing like an emergency trach change at 6:45AM. It gets all the juices flowing very quickly. Who needs caffeine?

The morning continued on with the new tube while I got everything else ready to go. I looked over and Maggie was yanking on the ties again and had it so loose that I had to stop and re-tie it again. I told her not to worry, everything would be back to normal by the time  she gets home from school.

She can resume her place as the center of the universe.




Tuesday, January 7, 2014

Concentrate on the Happy

The other day I ran to Safeway to get something for dinner. As I walked in a woman and I exchanged glances and then looked way. It took us both a minute to realize we knew each other an then hit us both at the same moment. We each greeted each other warmly and caught up right there in front of the supermarket.

Her name is Sherry and I knew her many years ago when Maggie was very little. Her twins are the same age as Maggie and we did a lot of the early intervention stuff together and went to all the same birthday parties and other social outings.

Sherry was a single mom, which is overwhelming, of twins, which is also overwhelming, and one of them had serious medical issues, which is incredibly overwhelming. Those early years were incredibly difficult for her.

By the time the kids were about four, we had already drifted apart as our lives took us in different directions. Her daughter's issues were medical, and she did not have the special education component that Maggie had. They went to different schools and life proceeded for all of us in different ways. Occasionally I would run into Sherry and we would catch up, but I think before last week, it had been about 10 years since I had seen her.

Of course I asked about her girls and was beyond delighted to hear that both are in college and that the one with the prior medical issues is now in nursing school. Really it took my breath away. I told Steve when he got home and he summed it up best. He said, simply, "That is outstanding."

When I think back on those early days it's very difficult to remember having any hope for the future. We were all so overwhelmed with the present, there simply wasn't time to think about the future. Keeping our kids alive was our first priority, and too many of my friends from those early days lost that basic battle.

When I arrived home I found myself very emotional, even a little teary. Initially, I wasn't really sure why and stopped to try to untangle all the different things I was feeling. I was so happy that things worked out so well for them, especially given the overwhelming start they all faced and I was sad for the kids who didn't make it. At the same time I felt extremely exhausted remembering those days and knowing I had been doing all of this for nearly 20 years. There were probably a hundred other things too, but those are the ones I could identify. I just kind of let things flow for a few minutes and then decided to concentrate on the happy.

Sometimes you just have to concentrate on the happy.

I am proud to have survived those early years and proud to know the people I met then and now in Maggie's World. We have all been tested in different ways and each of us has succeeded. Our kids have lived their lives - however short some were - in the best possible way and realized their potential. I just never knew then that potential was so high for some of them.

It is outstanding.




Friday, January 3, 2014

Wednesday, January 1, 2014

You are never too old for toys

especially when they make excellent noises



This was a gift for Maggie from our friends Mark and Vicki.  Needless to say, she likes it quite a bit.

 May the simple things in life bring you this much joy in 2014.

Happy New Year.