Happy Thanksgiving from Maggie

Grazie for haircuts!

One of Maggie's favorite places to go is the hair salon where she gets her hair cut. It's in north beach and cable cars go right past as she's sitting in the chair. (note the cable car in the background in the picture).

Lisa, the Italian woman that cuts her hair tells Maggie she is bellissima and now she is no longer a "bambina" but a "bella signorella." Despite the Italian words Lisa really speaks Maggie's language. Who wouldn't want to go there?

Maggie laughs through the entire haircut but really recoils at the water spray. 

One problem with having a trach and getting a haircut is the constant concern about stray hairs getting into the trach tube. If we didn't catch it it would be a huge irritant in Maggie's airway or lungs which could present enormous problems We had to stop periodically and suction out stray hairs. When it came time to blow dry off the excess bits of hair I just held the scarf over her trach. Maggie even thought THAT was hilarious 

Maggie is now cleaned up and ready for the holidays. And she looks bellissima

Ciao tutti!

Swapping Recipes with a 6 year old

Is there anything better than a six year old view of the world? I don't think so. At six they are old enough to be smart and clever, but young enough to be innocent and sweet.

Maggie's school nurse has six year old twins, K & B, and they are such fun. They adore Maggie and love to ask her question to get her to say yes or no and marvel every time she does. The "no" sends them into peals of laughter, and Maggie laughs right along with them.

K & B are in the first grade and have discovered the wonders of Junie B. Jones, Maggie's favorite fictional heroine. B told his mom that he liked those books and she told him Maggie has the entire collection. I offered to let him use any he wanted and he neatly wrote out a list of five books he wanted to borrow. Maggie and I went through the collection, pulled out those five and several others. If Maggie had more than one copy of a book, she just gave the duplicates to K & B. Three of the five were duplicates and we had about five additional duplicates. We actually had three copies of Aloha-ha-ha so Maggie could give a copy each to K & B.

I sent those books home with Nurse Janice along with a recipe she requested for Apple Hill cake. B was delighted with the books but also fascinated by the recipe. He was amazed that his mom was going to make this cake that I told her about. He wrote a thank you note for the books and, unbeknownst to his mother,  copied a recipe for pumpkin bread that he brought home from school. She could not figure out why the note was taking him so long until he asked for help finishing it. It seems recipes have lots of words and fitting it all on the page in his six year old printing was difficult. Seems he never considered the photocopy option.

You may be able to tell from the scanned picture of the note where his mom took over.

I think my heart grew three sizes when I saw this note. 

I am going to try his Pumpkin bread tonight. How can I not?

______________________________

And here's the Apple Hill cake recipe. It is simple and delicious. (If you use sweeter apples like Fuji's (I do) cut the sugar a bit). 

2 cups sugar

1/2 cup oil
2 eggs
4 cups granny smith apples, peeled, cored and diced
2 cups flour 
1 teaspoon salt
2 teaspoons cinnamon
1 teaspoon nutmeg
2 teaspoons baking soda
Directions:
Combine: Sugar, oil, eggs and apples. Sift in flour, salt, cinnamon, nutmeg, baking soda. Mix until combined. Pour into a 9x13 greased pan and bake for 1 hour in a preheated 350 degree oven. Serve hot or cold with vanilla ice cream or whipped cream.

I left my heart in Union Square

Chronicling the circles

For the past several days I've been trying to undo a snafu with Maggie's state medi-cal insurance. We do have private insurance for her and the state stuff is secondary. Without this extra layer of protection we could never have kept Maggie at home and healthy.  According to the state websites, anyone with primary coverage is to be exempted from managed care because it won't work as a secondary layer; yet they have her enrolled in a managed care program.

Because it involves the state, I have to deal with a number of different agencies, each pointing to another as the problem. After getting the runaround for days I decided I'm writing to all of the agencies involved, county, state and Feds. (In fairness, this is not the fed problem, but the state is using Social Security in their blame game, so I have to include them in my letter.)

Don't be jealous of my life, but this is how my Friday started. And all it does is chronicle how I spent my Wednesday and Thursday.

__________________________________________________________

November 22, 2013

San Francisco Department of Human Services - Medi-cal

1440 Harrison Street

San Francisco, CA 94103             Medi-Cal ID# XXXXXXXXXXX

San Francisco Health Plan              Member id#XXXXXXXXXXXXX

201 Third Street

San Francisco, CA 94103

Social Security                                  SS# provided only on the Social Security Copy)

ANNEX 1ST FL 
90 7TH ST 
SAN FRANCISCO, CA 94103

RE:  Mary Margaret McDonald

        Disenrolling from Managed care

Please be advised that Mary Margaret McDonald continues to have private insurance and her medi-cal coverage is secondary. Accordingly, she should not be involved in a managed care program.

I have tried to contact each of the above agencies but find myself constantly being referred to one of the others. Both San Francisco Health Plan and Medi-cal advised me to contact Health Care Options. Health Care Options says the social security information does not include the underlying insurance. Social Security says the information is in fact on there and refers me back to medi-cal (note this is really not social security’s issue. It is a California problem.) 

Following each of the instructions was circular and I have not been successful in getting this information to the correct people. The worker at medi-cal arranged to have a supervisor from Health Care Options contact me. I was told to expect the call within 24 hours. It came at 8:30 this morning while I was in the shower. I returned it 15 minutes later and was advised I now have to wait until Monday for another supervisor to contact me. I’m sure you can imagine my frustration. 

I believe that Health Care Options needs to fix this but Mary Margaret need all of you to work together to make this right.  Mary Margaret McDonald should not be a member of the San Francisco Health Plan or any managed health care plan. Having primary insurance is a basis for exemption from managed care.

Her primary insurance is the same as it has been for the past several years. I am providing the information again

Anthem Blue Cross ID# XXXXXXXXXXXX

Member name: XXXXX XXXXXXX (her XXXXX)

Group # XXXXXX

A copy of the front and back of the insurance card is attached AGAIN. Please contact me to advise how to remedy this situation and to disenroll her from managed care

Sincerely,

Sara Coghlan McDonald

mother/conservator/designated payee

___________________________________

Don't you love all my titles? 

what did you do this morning?

Thank you. You're NOT welcome

Today I have so many things to share. There's the story of Batkid and how he saved San Francisco! There's Maggie' great visit to the zoo yesterday and the wild video we shot at the Grizzly Bear exhibit! There's Maggie baking with mom!  Lots of stories for a Monday.

I was trying to decide where to start when I saw something last night that made me switch gears completely. Barbara Park, author of the Junie B. Jones series of books passed away on Friday after a long battle with cancer. She was only 66 years old. I did not know Barbara Park, but I felt immediate sadness when I read that. Steve looked just as sad when I told him. I said, "That woman made our daughter's life so much richer." Steve said, "Without a doubt."

Maggie absolutely adored the Junie B Jones books. We own every single one of them and each was read aloud hundreds and hundreds of times. All of us read them to Maggie, but Steve really owned it. He had voices for each of the characters and Maggie would roar her approval.  Maggie's many lengthy hospitalizations were made more bearable because of Junie B. Jones and  Steve's voices became something of a legend in the Pediatric ICU. There is very little doubt in my mind that Maggie and Junie B. Jones share a personality and an irascible spirit.

Junie B. Jones has been featured in this blog quite often. Sometimes it's overt as in Maggie World: Manners/Greetings but mostly she's there in the attitude and sayings. Maggie has a few of them on her dynavox and uses them regularly. And responding to a Thank you with "You're NOT welcome" is done in this house quite often. It sends Maggie into peals of laughter every time.

We were talking about Barbara Park just this weekend because "Make A Wish" was in the news. Maggie's Make a Wish was in 2005 when Maggie was 11. She was not able to articulate what her wish would be, so it was up to us to come up with something. Eddie thought she would want a new bike and Tim thought season tickets to the Giants games were a good idea. We were trying to do right by Maggie when Steve came up with the idea of having her meet Barbara Park, the woman who had brought so much laughter to Maggie.  It was the perfect Maggie wish.

Sadly, that wish could not be granted because Ms. Park was ill. She was undergoing treatment for cancer. That was 8 years ago. I hate to think of anyone being ill for so long. I can only hope she had some of her books to get her through the roughest times. They are a wonderful tonic.

Rest well, Ms. Park. You have certainly earned it. You made an enormous difference in the lives of millions of children and you could never imagine what a difference you made in the life of Maggie.

Thank you.
(Insert response here)

Travels with Maggie

This is from the way back machine.  I was reminiscing about this story with my mom the other day and was sure I had already shared it, but if I did I cannot locate it.

When Maggie was three years old, she was invited to go to Lourdes, France with the Knights of Malta. The Knights of Malta is an organization of Catholic men and women (Dames) whose mission is to serve the poor and the sick.  Every year the Knight of Malta take people on a pilgrimage to Lourdes to bathe in the healing waters.

For those of you who aren't familiar with Lourdes, it is a very sacred place for the Catholic Church. It is where the Blessed Mother appeared to Saint Bernadette several times over the course of a few weeks. Bernadette was a young girl but she convinced the local Bishops of the apparition and they built a huge cathedral. The waters of Lourdes are believed to have healing powers. People travel from all over the world to bathe in the waters of Lourdes. There are many miracles of healing associated with those who have visited Lourdes.

One doesn't really turn down an invitation to Lourdes. I mean, really, why would you? A week in the south of France having a once in a lifetime experience with the possibility of a miracle cure. Why yes, yes we will go and thank you very much.

When Maggie was little and did not have the trach and all of its required care, it was much easier to travel with her. She had a wheelchair, but she was just a tiny little girl what we could easily carry around. She sat in a car seat on the airplane and didn't require suctioning or oxygen or anything. We had never actually gone anywhere, though so this was -- well, a leap of faith, if you will. Maggie was very fragile, to be sure, but it was under control. I don't know if this is true in all of the chapters of the Knights of Malta, but many of the Knights and Dames from the Western part of the U.S. were doctors and nurses. That certainly made the decision to go a bit easier.

Steve was going to hold down the fort at home, caring for the boys while Maggie and I jetted off to France with 40 other "malades" (those who needed healing) and probably 50 Knights and Dames of Malta and their spouses.  Maggie was not miraculously cured at Lourdes, but I think I attained a new level of acceptance, which is a miracle in its own right. And I can tell you this: it was a week of pageantry and beauty and I consider it one of the most amazing things I have ever done.

I know there are many who would scoff at the whole idea of this and that's your right. Faith comes in all different forms. It is as simple or as complex as an individual chooses to make it. Some believe unconditionally, others scoff at the tenets and beliefs relying on science. Many are somewhere in the middle.

The best example of this came from Tim, who was just six years old when Maggie and I took this trip. He knew the story of Lourdes but he had a lot of questions, as you might imagine. He wanted to make certain I was considering all angles of this matter. We sat down to talk about things before I left and we had this conversation:
 Hey mom, you know how you are going to Lourdes to get a miracle?".
 Yes.
And you know how Lourdes is in France?
Yes.
If Maggie gets a miracle and learns how to talk, will she only speak FRENCH? (Sub text - Maybe you should head to Cleveland for your miracle)

Really, an excellent question.

I just smiled and said, "Don't worry Tim, if that happens we will all learn French."

And really, we have all been speaking Maggie's language ever since.

C'est bon.

.

Maggie and I went shopping on Saturday, as we are wont to do. I am currently boycotting Stonestown mall because of an incident a few weeks ago involving a broken elevator and a security guard who found our predicament amusing. I wrote about that here and sent them a fax describing the situation, but not even the courtesy of a reply. We will go back, eventually, but I need to be completely over it first.

Maggie kept saying on her talker "Mom I go to the mall" and I would say,"well no, we are going to go downtown. No mall Macy's for us, Mag, - we are talking 9 floors of fun!" She switched gears and tried to make a sentence that said we are going downtown, but she could not make it happen. She kept saying "Mom we are going down" and I would say "right, downtown. Do you want me to help you spell town?" She slammed her fist down which is her response for NO! She kept trying. I kept offering and she kept rejecting me. Finally I said, "you know down and town rhyme." That seemed to make it click for her.  She cleared her sentence and went back to work. My husband entered the room and she made this sentence:
y

"Dad I will go to down down Dad"

I cracked up and said Way to go Maggie. That's close enough. She was very proud. Steve was a bit perplexed for a minute, but then he got it. From here forward, we will likely refer to it as Downdown"

As we shop - or do anything -  Maggie and i keep up a running commentary. She says "Mom. can I say something please," and i say "Please do" as we peruse the goods at Macys'. Then it becomes, "Mom I want to listen to music." and I say, "there's Music playing in the store, can you hear it.?" (makes sign for) Yes. "Do you like it?" NO! Usually it's "MOM MOM MOM MOM" and I say "what what what what?" This type of banter is non stop. Others look at us quizzically, but generally smile and move on. Once in a while I get "That is amazing" and I smile and say, "Isn't it? She's smart as a whip"

Perhaps because that is the norm, I was more than taken aback by a woman who chided me for not paying attention to Maggie. I was paying for some purchases and Maggie was saying MOM MOM MOM MOM. A woman was suddenly next to me saying, "Hey, She needs you. She is trying to get your attention." I glanced at Maggie and back at this very angry woman and said calmly, "I'm on it, thanks.  She was not to be deterred. She said, SHE NEEDS SOMETHING. I looked at Maggie again who was happy as a lark but a bit wary of this strange encounter, and said evenly but a little icily, "she's fine, Thank you."  This woman just GLARED at me and then looked over at a cop who was a few feet away. This cop had opened the door for us and we exchanged pleasantries when I entered. I thought. Go ahead, Lady. Make my day. I just looked at her disapproving face and said "You really just need to mind your own business, you have no idea what's happening here." She huffed and started to walk away. 

I finished my purchase and looked at Maggie. THe lady had frightened her a little bit because she was so angry. When she heard me tell her to mind her own business, Maggie started laughing her head off. The cop, who didn't seem to notice the exchange said, "Wow, she sure is happy isn't she." 

I smiled sweetly and said, She certainly is. Maggie laughed again.

And the cop opened the door so we could leave.
 

Multitasking to prevent madness

Multitasking is essential.

 I have learned to entertain myself while waiting on hold for supply companies, pharmacies, doctors offices, state agencies and, everyone else I have to deal with in Maggie's' World. To that end, I am writing this as I wait for Anthem Blue Cross to answer the phone.

Dealing with the insurance company is best handled early in the morning before the operators have had 100 irritated  customers swear at them and before other aggravations of the day take their toll on me. Everyone is fresh and eager in the morning. Right?

Maybe not.

Something preventing me from being fresh and eager this morning: this call is completely unnecessary and aggravating. One of Maggie's (several) supply companies, Byram Healthcare, refuses to send her supplies, diapers, catheters, under pads, etc, until they get a letter from the insurance company verifying these items are not covered by Anthem Blue Cross. Theses supplies were supposed to be shipped on Friday November 1 and I parsed out our dwindling stock carefully over the weekend anticipating a delivery on Monday. No delivery received. Instead at 5:30 PM I receive a call saying they need this letter before they will ship the supplies.

The supplies are paid through Medi-cal, and I understand Medi-cal only pays for things insurance doesn't. What I don't understand is why I have to run this down. Every other provider simply submits the bill and the insurance either pays it or denies it. That is efficient. Making me call is not. Also, holding Maggie's supplies which we desperately need,and informing me they need this after they were supposed to be shipped is just cruel.

Ranting aside, it has to be done. I called Anthem just after 8:00AM and went through the entire matrix of the automated phone system. It took at least 5 minutes Press 1 for member. Done. Say or enter the membership number or the social security number. Done.  Say or enter the subscriber's date of birth. Done. Sorry we don't have anyone with that birth date. I find that incredibly hard to believe but I don't argue with machines. I just enter same thing again. Done. If you want information on a claim press 1, information on pharmacy 2, etc etc etc. For more options say "More" MORE. another menu of choices before I can finally press zero only to hear:

You have reached us outside of normal business hours. We open at 8:30.

Deep breath. Serenity now.

8:31, I go through the same thing and eventually reach a kind, well rested eager human. Ahhh. He tells me. Oh, you've reached the wrong department, let me connect you to blah blah blah department.I hold my breath hoping I won't get another automated answering system while I wait and wait praying I won't be cut off. I'm not. I reach another well rested eager human. I repeat all of the information I already told the computer, but I do it without snarkiness and without complaint.  He is perplexed by my request because it is so out of the ordinary, even though I make this request every year. I tell him they sent one about this time last year, and I believe he found it because suddenly he understood and agreed they could fax the letter to me.

I started to hear a small choir of angels until he said "It takes up to seven business days to get the letter done." The music stopped.

Seven business days is two weeks in real time. That is a long time to go without diapers.

It's not the end of the world. I will take my credit card and head to the medical supply company to buy what she needs for the next two weeks. Of course there won't be any reimbursement for that, but I am going to take care of my daughter. I just wonder what happens to the Maggie's of the world who don't have families to step up to the plate when the system hits these ridiculous and unnecessary bumps.

Call completed Blog entry written.

What's next on the hit parade?

Addendum: Fax received from Blue Cross less than 90 minutes after my call. Huzzah.