Sunday, February 27, 2011

Oscar night

Like the rest of America we watched the Academy awards tonight. Tim took Maggie out of her chair and sat with her, making predictions and asking her opinion. Here they are putting their heads together.

They were Social network people and we, the old folk, were King Speech people. They disagreed with the Best Director who advised all to "listen to your mother."

Friday, February 25, 2011

Born This Way

Quick check in from a very busy week. It's very cold here and they are talking snow in San Francisco for the first time in 30 years or something. Right now it's clear and cold but we will see what the night brings.
Maggie will stay inside in this weather. Her coughing sounds like a foghorn already, I don't think the cold temps will improve that sound at all.

Fortunately, we finished the Maggie Mix 2011, so she can listen to her new songs. This is year three of the Maggie Mix - a collection of pop tunes and other random hits. It's very popular with Maggie's crowd and we prepare one to give out at her birthday party. That's next Thursday! Of course it's just called the Maggie Mix, but each year the Mix has a title too.  We pick a title from the songs on the list, trying to make it work for Maggie. The first Maggie Mix in 2009 featured (among others) the Jonas Brothers and we used their song "That's Just The Way We Roll" as the name. That was too perfect for words since the first recipients were all in Wheelchairs. In 2010 it was Katy Perry's "California Gurls" which was has a good generic application to Maggie.  This year it's more specifically applicable.

As you all know, Maggie goes wild whenever she hears Lady Gaga, so it's only right she should get the recognition.  Lady Gaga, who is always a featured artist on the Maggie Mix was nice enough to name her hit song: "Born this Way." Obviously, that's the title for 2011. It's perfect for Maggie*.

"I'm on the right track, baby, I was born this way."

I think Lady Gaga would be wowed by Maggie too, don't you?


(And yes, I am aware that the lyrics may not be referring to physical disabilities, but it's certainly applicable)

Wednesday, February 23, 2011

Road Warrior

I received this email from Heather, who was Maggie's school nurse for a while. She loved my story from yesterday about Maggie telling me "this is bunk."   2009 was Heather's last summer working in the schools and Maggie was her patient. She is now a nurse practitioner. 

Two things for context:, 1. the school nurse rides on the bus with Maggie because she needs constant suctioning and there are some good hills on the ride and  2) Maggie says yes by bringing her hand up to her mouth. 

 I smiled so big after reading your blog. Did I tell you the story of one of our entertaining drives to school in the summer of 09? So Maggie and I had just left your house in the school bus. We were at the light getting ready to turn up the hill on Stanyan when Maggie started to cough. I flipped around, looked at her, and realized in was suction time. Well....just as I stood up, the bus driver hit the accelerator. I started to stumble, which Maggie thought was the funniest thing ever (it kinda was actually). I walked over and said, "Ay Ay Ay, that was a close one" as she kept laughing. I suctioned her and went back to my seat. As soon as I sat down she started hacking again. This time, I got up and as I was walking to the back of the bus, the bus driver hit the breaks. I stumbled again. She was hysterical. I started to laugh and said, "Maggie, are you just pretending to cough so that I get up and stumble all the way to the back of the bus?" Her emphatic (at least it seemed to be by the swipe of her hand), "YES!" Cracks me up to this day. What a great summer!
Maggie has always had excellent people working with her. It's good to be reminded of that. This is a very typical Maggie story because that girl loves to laugh. She's choking and laughing. Of course, who doesn't?.

Tuesday, February 22, 2011


Maggie has a whole new page of slang sayings on her dynavox. One of her fellow students, from the ranks of the typical students, helped develop this page. I heard about it and a couple of days last week Nurse Janice asked if Maggie used it at home. I  meant to go into the device and look at the page, but I kept forgetting.

Saturday morning, we were picking out songs for the "Maggie Mix 2011."  I was trying out different songs hoping to sneak in a few I like because I know I will be listening to this play list all year. I played a song and looked hopefully at Maggie. She turned to her dynavox and said:

"Mom. Seriously? This is bunk."

My mouth fell open in surprise. When I recovered I said in mock fury, "What did you say to me?" She laughed and hit the switch again to repeat the phrase. Then she hit L O L and laughed her head off.

 I was impressed. My non verbal child is mouthing off.

Funny, I don't remember being so pleased when the boys did that.

Monday, February 21, 2011

Bobble Head redux.

I hate being right all the time.

Maggie's wheelchair repair took place Friday. I dragged her down there in the rain because they told me  it was imperative that she be there. They didn't need her at all. Arrgh. Most of the pieces they ordered either weren't there or wouldn't work with the configuration of the chair. Arrgh. I sent a rather pointed email to the therapists and their supervisor.

Nothing was ordered regarding the ongoing problems with the headrest. I told the guy it was going to break and he said "no it's fine."  It was fine, for 48 hours. Guess what broke this morning? AAARRGH. Right now she is stuck. We cannot go anywhere with the chair like this. It is unsafe and extremely uncomfortable. Steve is going to try to cobble something together so Maggie can go out this morning or at least go to school tomorrow.

Other that that, though, the weekend was great.

Poor Brisco cannot get used to the cone on his head and is constantly knocking into things. He tried to fit between the front seats in the van while I was driving yesterday and changed the radio station with his cone. He also hasn't quite figured out that when he ear itches it doesn't do him any good to scratch. We have been awakened to the sound of his claw on the plastic cone scratching furiously. It's hilarious.

Maybe we should try that cone on Maggie. That way when the headrest snaps she won't get hurt.

I better watch out what I joke about - that will be the next suggestion.

Friday, February 18, 2011

No, Please, let ME do it.

Warning. This is a little snarly.

Today, after months of waiting, Maggie has an appointment to get her wheelchair repaired. I tried to schedule the appointment when Maggie would miss the least amount of school. I cancelled the bus for the day because she has to leave school early. I don't want the nurse to have to come all the way back here to get her car, so I had her meet us at school. I like to take the professionals into consideration when there is a change in the routine. I only wish that went both ways.

This is not like the emergency visits I've had to do for her headrest. This is more involved. Lots of parts will be replaced or switched out to accomodate her growth and resolve ongoing issues with the chair. I was not involved in ordering any of the parts. I let the professionals do their job. I'm not positive what all of the changes are, but I agreed to have Maggie there at 2PM for a two hour appointment.

We will be there at 2, as instructed. This is very difficult for both Maggie and me because we have to wait through all the changes and then sit Maggie in the chair to make sure it's correct. Of course I have no idea what is or is not correct because I didn't order any of it and have no idea how it's supposed to work. Her therapists did that, but now neither of them is available to come to the appointment. One doesn't work on Friday afternoons and the other is sick. This is the third rather important thing in a row that one therapist has missed, so I can't help but wonder.

While we are waiting, Maggie is without her chair. That means she cannot use her communication device. There is no place for Maggie to wait except to lie on a mat table in an office. There are no sides to this table so I have to stay right next to her the entire time to make sure she doesn't fall off. I cannot go to the restroom, I cannot do anything but sit in one place. Because someone else is usually with me, this can generally be accomodated.

But now we are on our own.

I can predict that without the professionals who are supposed to be there, something will be left out, or unavailable. Of course I won't know what it is and they will tell me to come back downtown on another day to finish the job.

I hope they will understand when I tell them I don't work on that day or I don't feel up to it.

Have a nice three day weekend. I will try to unsnarl.

Thursday, February 17, 2011


There are so many advantages to being part of a large family. Growing up one of seven kids with dozens of cousins was a blast. When I married Steve I added his siblings and large extended family. Now that we are middle aged (eek!), I get the added bonus of a gaggle of nieces and nephews. There are even a few in the next generation.

There is a down side, though. We attend a lot of funerals. In the past five years we've lost my dad and Steve's mom as well as three uncles and three aunts between us. I won't even get into losses for the extended family. All of these individuals lived wonderful lives, and most were over 80 years old, but a couple were shortchanged by 10 years or more.  That still hurts.

Today I'm going to the funeral for Steve's Uncle Tony, a very kind man who was devoted to his church and his family. There was a service last night as well. Though it's sad to lose another family member, I found great comfort seeing many of Steve's cousins and their families there. Family comes together at times like these and you can feel the support in the room for Tony's wife Pat, and his kids and grandkids. You can't help but smile.

Last year my brother spoke at my aunt's funeral. I have to admit I tuned out at first, thinking about a million different things as he spoke because I was the person in charge of the funeral. I heard him listing various family members sitting around a table bantering back and forth. I started to pay closer attention because I noticed he left out my mother and her brother Jack, who were both present in the church at the time. I hoped he would correct himself, but I slowly realized he was talking about all those who had passed away. The image of all those family members from  the two generations before me hanging out together in Heaven was wonderful and has stayed with me since that time.

Whatever you believe about the afterlife or God or anything else is entirely up to you. If there is something that comforts you, that's great.  Right now it gives me comfort to think about Tony reunited with parents his two sisters and brother who went before him as well as his first wife who died as a very young woman. I hope they are enjoying a nice Portuguese feast.

I also hope there is no more room at that table for awhile.

Wednesday, February 16, 2011


The logistics of my life and very involved. A simple thing requires many steps and considerations before it an happen. Today is a good example.

Poor Brisco, the wonder dog, is injured. We didn't know what was wrong but he started limping over the weekend and by Monday morning it was clear something was VERY wrong. Steve took him to the vet and she discovered a deep and infected puncture wound on his upper leg, wiht a large abcess. He is recovering now, but we have to medicate him and irrigate this nasty wound a couple of times a day. Brisco is relegate to the cone of shame while he recovers.

Today is his follow up appointment. They want to make sure it is healing correctly and, if not, they will have to put a drain in to clear out the infection.  I think it is doing well but I have to take him to make certain. I don't think I have the wherewithal to handle surgery for the DOG.

The appointment is at 1:30. Any other day that would be perfect timing. Maggie gets home around 3 and her nurse arrives just ahead of that to get everything prepared. Except Wednesday Maggie gets out of school early. She generally arrives just before 1:30 and her nurse gets her at 1:00. Except today I told the nurse to come at 2:00PM because I have to go to a wake tonight for Steve's Uncle Tony who passed away last week. I'm not positive I could be back here for the nurse to go home at 9:00 so I'm having her come 2:00 to 10:00.

Maggie could come with me to the vet. It's just a few blocks away. There's just one step up to the entrance and I could probably get the wheel chair in there with very little problem. Probably. But the office is set up in this strange configuration and one exits through a narrow hallway that would be problematic. Not insurmountable, but problematic.

I don't need problematic.

 It's supposed to rain all day, it was hailing a few minutes ago. There is no parking near the vet. If I don't take Maggie I can just walk down there in the rain, but I can't do that with her. I would have a hard time explaining to the pulmonologist that she's sick again because we went for a walk in a hailstorm.

I can make this easier.  I don't want to worry about anything else.  One call to the vet and the appointment is changed to 4:30. Maggie will be here with her nurse and I can dash out with the dog for 30 minutes.

Perfect.  It's so simple.

Monday, February 14, 2011

Anatomy of a "marriage:

I received the following email from Maggie's teacher about the Valentine's Day festivities at her school. The last picture made me laugh out loud.

So...they had a 'marriage booth' today in the cafeteria and after refusing both Tyre's and Patrick's hand in marriage, Maggie chose Juan as her main man.  There is a hard copy of the picture in the works but in the meantime, David took these on his phone.  We said that they represent the many facets of marriage.  They are pretty funny.

                                                          Settling in
                                                          The thrill is gone

Get your Heart a Pumpin'

Happy Valentine's Day all. Maggie brought a homemade valentine for everybody in her classroom along with a  box of store bought valentine cookies.  I went by the classroom this morning and they were enjoying themselves.

There was a reporter doing a story on the budget and how some of the proposed cuts will effect  people. As it currently stands, the funding for Maggie's dynavox could be in serious jeopardy. It is difficult to convey how important that piece of equipment is to Maggie's life and that of her classmates. And, of course, the only people who need them are generally the most disabled. All of the cuts disproportionately effect the disabled. It is so harsh.

I can't think about that any more. It's too upsetting. I wish there was a way to focus on the waste and the fraud - because there is plenty of both - and protect the services for those who really need them.

Friday there was a story about Governor Brown hopping on a Southwest flight from Sacramento to LA, refusing the business upgrade that cost additional money AND taking the senior discount. No entourage, apparently no security. Just a frugal man doing the state's business. The surprised passenger next to him said, "Hey, aren't you the governor, I'm a state employee, I work for you." Good for Jerry Brown. Leading by example.

That example needs to trickle down to the the rest of the government employees. Why do I get several letters every month from the various state agencies that deal with Maggie. Why does each letter contain throwaway information? Granted, it may be of interest to some, but why is it being mailed to all? Postage alone must cost a fortune. Why don't they email me? It's free.I know not everyone has access to email, but a lot do.

Why did I witness three Daly City firemen, shopping at Safeway in uniform telling the butchers and everyone else in earshot, that they were waiting for Lobster tails. LOBSTER TAILS? I was excited about the special on Italian sausage and they are buying Lobster Tail? Don't get me wrong, I have no problem with firemen being well fed, but I do have a problem with extravagance in this time of fiscal crises. Perhaps one of them was buying it personally, or maybe it was "buy one get one free" day on lobster tail. Somehow I don't think either is the case, though.

If firemen are eating lobster tail, I certainly hope Maggie will be able to keep her dynavox so she can tell everyone how wrong that is.

Ok, I'm done. I know Valentine's Day is a day of the heart, but I don't think the idea is to raise your blood pressure.

Happy Valentine's Day, everyone

Thursday, February 10, 2011

A Lot to Swallow

I linked a post from Nextcourse yesterday which featured Maggie and the program they sponsor at her school. I received a lot of comments from various sources asking questions and I need to set the record straight. The person writing the post is not the Chef in the classroom and has never actually met Maggie. Not surprisingly, then, the post wasn't 100% accurate but the errors did not matter for the purpose of her post. Maggie loves Chef M and that program, and the tastes of food she has experienced have been very positive experiences for her, but this is not her first taste of food.  I will also say in the spirit of full disclosure that there is NO WAY Maggie typed in that she wanted cinnamon, but she likely indicated "yes or no" when asked.

Maggie has had her feeding tube since the day she was born and with the exception of a trial period of about 1 month, has always received 100% of her nutrition through that tube. That doesn't mean we didn't try to get her to eat by mouth. We tried and tried and tried, but it was not to be. Swallowing is a very complex motor function,. We all do it automatically, but with Maggie there are no automatic motor movements. Everything is deliberate and comes with great concentration on her part. If you try to concentrate on your swallowing, you won't be able to do it.

Test that. Try to swallow five times in a row right now.

Many kids with Cerebral Palsy figure it out, some don't and need feeding tubes. People without cerebral palsy need feeding tubes for other reasons. In Maggies' case there was far more than her motor function to deal with. She was born with her esophagus in two pieces. That had to be surgically created and, while the surgery was amazing, the surgeon can never do as good a job as nature when it comes to function. When this problem was added to her multiple other gastrointestinal problems it just wasn't going to work. Maggie's body needs a TON of calories to function. She could never eat enough calories to sustain her needs.

But we did try. She could never do liquids, but she was able to eat pureed baby food. Applesauce and plums was her favorite. The first time I got her to eat I thought we were on our way. But she would get sick and forget that skill and we would start over. Eventually we gave up any effort at nutrition by mouth and went only for tastes. As her respiratory issues got worse, we stopped that too because she seemed to get overwhelmed by the saliva that food created. Besides, she was allergic to so much stuff, it was hard to find something interesting to try that was soft enough but didn't have dairy, eggs, peanuts etc. We always give her licks of candy canes, which she absolutely loved,

Now she is bigger and stronger and more body aware and I am delighted she has this opportunity to try new things, especially with all of her friends. Her nurse is with her and if she gets overwhelmed, Nurse Janice will stop it. But that doesn't happen because everyone is careful and aware of her allergies.

Also to clarify - Maggie does not miss eating. It is not cruel to have her in cooking classes when she cannot eat. She loves it. Remember, she does not have the pleasurable connotation with food that most people have. She experiences hunger and requests food. In fact she "eats" every two hours. She is satisfied after a feeding, but for her there is no connection to the oral act of eating. She cracks up when she sees the tube and the can of "medical food" because that is what satiates her.

It is difficult to remember, sometimes, that everything about Maggie's life is different. It's difficult not to overlay our own values and concerns to her situation. But it doesn't work like that. Maggie is not only marching to her own drummer, most of us cannot even hear the music.

For those seeing it for the first time. the picture above is her Chef Halloween costume from a couple of years ago. Steve made the stove to fit over her wheelchair.

Wednesday, February 9, 2011


Maggie is featured in a post in a blog at Nextcourse, the people who come into her class to cook. Maggie really adores Chef M.  It's a bit misleading to suggest Maggie was typing things into her talker, the person writing this has never met Maggie, but you will get the idea.

check it out here Nextcourse blog

Tuesday, February 8, 2011

Trigger (un)happy

There was an interesting article in the San Francisco Chronicle yesterday. It involved parents of kids who battle (or have battled) cancer. The study found many parents exhibited signs of post traumatic stress. (You can read the article here.)  Though the study in the article was focused on parent of children with cancer, a lot if it felt very appropriate for me. I would put money on the applicability of those findings to any recurrent childhood illness or condition. It somehow felt validating to see an official study confirming what I, and so many other parents, already know.

There was some good advice for parents in that article, which was a list of "Coping Tips for parents." These also apply both in and outside of the world of oncology and are all things I practice and suggest others do as well. Because I thought they were so helpful, I am listing them here. Those tips included:
 - focus on today and not the future, and on what you can control versus what you cannot
-- recognize depression triggers; anniversaries of a diagnosis, your child's birthday or doctor appointments.
--when seeking support, differentiate between those who give it and those who drain your energy
--reach out to other parents who have a child with a similar diagnosis
--get involved in an advocacy group for your child's disease
--set up a website, with an organization such as Caring, to that you can control information about your child's health

Interestingly I was sitting in pre-op at UCSF waiting for Maggie's procedure to begin while I was reading this article. The pre-op and recovery rooms are places that especially trigger anxiety in me. We've been there well over 100 times for all the surgeries and other procedures Maggie has gone through. Experience does not make it easier, though. In pre-op we are waiting for the surgery to begin and all of the awful possibilities dance through your head. In the recovery room, the relief that the procedure is over is palpable, but seeing your child in pain or experiencing the fear and pain in the other children is very difficult.

Yesterday things went as well as possible. They took Maggie into the procedure early and she recovered easily and without any pain. There was nothing remarkable found. We will undoubtedly have to do it again in a month or two. Hopefully it will go just as smoothly,

But I already know it won't be any easier. No matter how many times you experience it, the fear is there.

My only suggestion is that they find another term. It's not really POST traumatic stress when you have a child with chronic issues. It's never over, so it's just ongoing traumatic stress.

I think I'll go take a hot bath.

Sunday, February 6, 2011


We are heading up to UCSF bright and early Monday morning. Maggie has to have another broncoscopy. They will put a little camera down into Maggie's lungs and have a look see. She has to be under anesthesia for the exam, but it is painless for her. The anesthesia is the toughest part, but that is one thing with which Maggie has not had any problem. Still, it's no fun, that's for sure. No fun for her and no fun for me.

Maggie's lungs and condition is a source of great mystery to all involved in her care.She is an enigma. The trach, which undoubtedly saved her life, also creates its own set of problems. It's an irritant in an area of her body that can't really take it. We face a constant struggle to keep her healthy.

But it's no struggle at all to keep her happy.   She is the most joy filled person I have ever encountered. It is magical. I wish I could bottle and sell what she has, because people would line up to get it.

Maggie is an enigma. She's enigmagic.

Friday, February 4, 2011

Tax dollars

Maggie and I had a day about town today. We went to see Steve in his office and then went to see Tim at work at Mr. Pickle and bought a sandwich.  We came back, regrouped, took care of business, and then went for a walk in Golden Gate park. It was a beautiful day here, but its's a day Maggie should have been at school.

There was no school today because it was a furlough day. San Francisco schools are closed for a few days here and there this year to help meet the budget shortfalls. That means the school nurse did not arrive this morning, the bus driver did not pull up, there was no one at school to help kids off the buses, no teachers, no janitors and no administration. All those people had an unpaid day off and all the students missed school. I believe that is an example of your tax dollars NOT at work.

.  I am glad that it was the kind of day one could enjoy outside. If you're not getting educated, or being paid to educate, a walk in the park can be educational and it's always free.

Thursday, February 3, 2011


Maggie and I spent her day off of school heading to North Beach to get a haircut. Maggie LOVES going there. From the look of this picture, she seems pleased with the results, too.

Lucky Bunny

Maggie is off school today because it's Chinese New Year. Kung Hei Fat Choy! The Year of the Rabbit begins.We heard lots of fire crackers yesterday afternoon and last night. All is quiet today for the holiday but the celebration continues for a couple of weeks. The big parade is at the end or the celebration on the 19th.

 I have a Chinese Zodiac chart right here and according to this the Rabbit is the luckiest of all signs. It says "You are also talented and articulate. Affectionate, yet shy, you seek peace throughout your life. Marry a sheep or Boar. Your opposite is the Cock" So if you were born in 1939, 1951, 1963, 1975, 1987 1999 or 2011, This is your year.

Chinese Zodiac is based on the year of your birth, because it is thought that is the primary factor in determining personality traits, physical and mental attributes, and degree of success and happiness throughout your lifetime.  In this house we have a Boar,(Steve), a Monkey (me), a Dragon (Eddie) a Horse (Tim) and a dog (Maggie).

Do you know your sign?  Give me your birth year and I will tell you.

Maggie is a dog, which means "loyal and honest, you work well with others. Generous yet stubborn and often selfish. Look to the horse or tiger. Watch out for dragons" (Eddie)

In preparation for New Year, Maggie and her classmates used the fish print they make to make their own zodiac sign picture. Here's Maggies and I'm reposting the fish picture too. That fish is the background.

Enjoy your lucky year of the Rabbit!