Spring Break 2013

Spring Break is already half over and I haven't even complained yet! I must be losing my touch. Actually, we have been very busy girls, and that is the key to keeping Maggie happy.

Monday we took Brisco for a walk in the park. It was quite chilly but we marshaled on until Maggie started saying "Mom, I'm cold." We headed home via Safeway where Maggie lost a shoe.The right shoe. It's always the right shoe. It gets quite expensive, though I do have a lovely collection of left shoes The dog was outside barking incessantly for us as we retraced our steps looking for the errant shoe. I figured she dropped it in the park and gave up. I was halfway down the block when the security guard from Safeway came running after us waving the shoe. Excellent! I left it on the back of the chair where I could keep and eye on it and we walked home.

Tuesday we had our obligatory outing to the mall, and Maggie had a meltdown in the middle of the trip. Not sure what was going on there, but we sat down in the mall until she could collect herself. I think she was so worried we were going to leave, she anticipated being sad and lost out on half the "fun." We did get her some cool new clothes and she bought chocolate bunnies to send to Tim and to Eddie and Grace.



Yesterday we had appointments to get our haircut.  She was excited about it and on Tuesday night said so on her talker. She didn't have a word for beauty parlor and improvised and you know that always impresses me. It's difficult to read the entire thing. It says Dad dad dad I am excited because I will go to the place for my hair Mom mom mom













 Maggie has been needing a haircut for quite a while. We have been using headbands to keep Maggie's hair from hanging in her eyes. I took "this before" picture at the Post Office where we stopped on the way to the "place for my hair"

While she was looking forward to getting her hair out of her eyes, Maggie also loves loves loves the haircut itself. It's hard to cut her hair because she is laughing the entire time. 

When Maggie was done I got mine cut too. When she paid attention she thought that was hilarious, but she mostly checked out herself in the mirrors. Lisa, our cosmetologist, took a picture of the two of us with our new haircuts. 

If I can fill in today and tomorrow, we will have this Spring Break nailed. So w e are off to Clement Street to shop in various stores for various things. It's not the mall, but it will have to do.  

Back to School

Maggie's Spring Break is over and I'm not sure who was happpier, her or me. Probably her.

She didn't get to have much fun, that's for sure. Even though we were able to get the car back on time on Friday afternoon, her wheelchair broke on Sunday meaning we couldn't really go anywhere, my excellent duct tape repair notwithstanding. It was fixed by Tuesday and then the rain started. She also spent all of Thursday morning at UCSF for a scheduled pulmonology appointment and tests. Bleak.

We did manage a trip to Macy's Union Square on Wednesday. We need a new chair for the nurses. The last one was really cheap and it didn't last at all, so we bought a nicer chair. It will arrive on Thursday. Maggie thinks watching me try out chairs is just about the funniest thing in the world, so that was a high point. Also, it is the Spring floral show at Macy's and the first floor was beautiful.

We went to the mall on Saturday and Maggie helped me shop for Sees Candy. If you have never tried Sees Candy, I can tell you you are missing something wonderful. I put this picture on facebook and about 15 people responded mentioning their favorite Sees candy. Maggie can't eat it, of course, but she had fun looking at all the beautiful selections.


Sunday the sun was out and it was a perfect day to head to the park. It was a tad chilly when you were out of the sun, but in the sunshine it was juuuuuust right.

She isn't really smiling in any of these, but she gave a HUGE grin when she saw Nurse Janice this morning. She lives for school!

Only about 8 weeks of school left, then we have to come up with more diverse outings.

A break from Spring break

Maggie is off school this week. It is her spring break.We planned a fun outing at least once a day in the morning before the nurse arrived. We haven't done that well. We did go shopping on Monday, we went to grandpa's house on Saturday and had a trip to the park on Sunday. Monday was just one errand in the afternoon. Tuesday we did have fun doing some shopping for the opening of baseball season - including a walk around AT&T park in Maggie's panda hat.

 (For those of you NOT SF Giants fans 1) why not? and 2) "Panda" is 3rd baseman Pablo Sandoval's nickname.)

Today was supposed to be another trip to Fisherman's wharf. The weather is fantastic and we were going to hit the wharf early. But it was not to be.

Early was redefined.

Tim arrived home at 1:00AM and the nurse told him to wake me up to come and check on Maggie. She was needing increased oxygen. I hung out for a while evaluating and basically told the nurse to marshall on. Yes. It was concerning and I needed to check in with the doctor in the AM. The nurse may have wanted more, but Maggie just wasn't sick enough to justify a trip to the ER in the middle of the night. Basically they (read "I") would have monitored her all night and I had a private nurse to do that. I went back to bed and tossed and turned until 6:30.

In the morning, Maggie looked better. The nurse left and I was in charge. She was doing ok, but I had to report this. i called the nurse practitioner. The message said she was on vacation but the other NP would be checking messages and returning emergency calls. Were we an emergency? No, not at that point. I chatted with my sister on the phone and kept an eye on Maggie. By 10:30 she was looking pretty pale. I told her O2 sat and it was alarmingly low. I put the oxygen on and decided to page the pulmonologist. (First time I have used her direct pager since she gave it to me a couple of months ago.) I was hoping we could just get an order for a chest xray and whatever labs Maggie needed. Nope. We had to go through channels. She told us to go to urgent care.

Urgent care has punted Maggie to the ER too many times for my liking. They decide based on her description alone that Maggie has to go to the ER. Maggie is not sick enough to need the ER and it is a waste of time and money to go there. I called Dr. Aicardi, her private pediatrician. As usual, they were extremely accommodating and we could be seen there at 11:30. Perfect.

We were there for an hour. Maggie had (another) breathing treatment and her numbers improved dramatically. We took a prescription along with orders for blood work and a chest xray to use if she got worse instead of better.  It could go either way. We waited for the drugs for 45 minutes and then gave up and went home, arriving around 2:00PM. By 3:00 PM I talked to the doctor and they changed the antibiotic they had just ordered. I needed to go back to Walgreen's to get the new drug. ugh.

Tonight Maggie's numbers are a bit lower again. She is a little worse, but not terribly. Still, things are not gong in the right direction. It looks like our outing tomorrow will be to the lab for the blood work and xrays.

Too bad. We had much more enjoyable things planned.

Emmit's fix it shop

.Tomorrow is Maggie's the last day of school before Spring Break. The vacation is set for next week, but Friday is another furlough day in the San Francisco Unified School District. Furlough days for those of you who live in financially viable states, are days that have been cut because of budgetary problems. There are several this year. Teachers and staff are not paid, and students are not taught. It's a lose lose situation. But I digress.

When Maggie does not go to school it is up to me to entertain her. We go out somewhere every single day, even if it's only a shopping trip. She loves to go out and has a great time no matter what we do. When she's not out, she is using her dynavox to chat with everyone or to request what she wants. Her most frequent request if for me to play her music, which I happily do. That communication device is her life line.

And, just because she will be all mine to entertain, the device is acting up. Arrgh. It will be a loooong week without it. Maggie operates her dynavox by hitting two switches on her tray. The switches allow her to navigate around the device. Right now the receptors on the side where the switches plug in are very loose. The plugs won't stay in one place and the device won't respond when she hits her switch.

Hopefully Tammy,Maggie's AAC (adaptive and augmentative communication) guru, can work some magic tomorrow or even get us a loaner while this one is repaired. For now, however, we are using the low tech repair method - rubber bands. This very expensive machine is literally being help together (or at least the switches are being held on) with rubber bands.

I feel like Emmit from Mayberry RFD. He ran the local fix-it shop. Hmm, I wonder if he worked on communication devices.  Maybe we can stop by his shop for one of our outings next week. I better come up with something, that's for sure. We are going to have to find a whole new way to keep Maggie entertained.

Oh well, we will figure it out. After all, my name is Necessity and this is my daughter, Invention. 

The Dance of Joy

We are here; we are fine.

It has just been crazy busy around here.

Maggie went back to school today after a week of Spring break. Spring break here does not mean a trip to Disneyland of any other fun outing. It means mom has to fill the eight hours a day that the school generally does. Every day Maggie is home means probably thirty more transfers for me – thirty more times each day that I lift her from the floor to the wheel chair, or the wheelchair to the bed or whatever. I. am. Exhausted.

In addition to the physical strain, it is my job to make her time at home fun. This for a child who does not watch movies or TV. Fortunately, Maggie is the easiest person to please in the entire world. The iPod was playing the Maggie Mix all week. My friend Rose and I did the YMCA dance for her (not pretty) and I thought she would stop breathing from laughing so hard. A trip to Target is huge entertainment. Couple that with a trip to the assisted living center that my aunt just moved to and you have hit the jackpot. We had her friend over, we went to the park, we went shopping, and we did a power chair trip or two. We hit a couple of therapy appointments and filled the week nicely. She had fun.

I have a news flash. Mothers of disabled children welcome the first day back to school just as much as (if not more than) mothers of typically developing children. I was very happy to see that school bus this morning. When I closed the wheelchair door on the bus, I did the dance of joy – a secret dance that only parents of school age children know. Every parent does his or her own version. Personally I prefer to wait until the garage door closes and just go for the junior high cheer leader routine (a la Molly Shannon in “Superstar”)

The last few days have been particularly busy. Dealing with my lovely aunt as she adjusts to her assisted living arrangement, cooking for in-laws, taking Maggie to a crowded Easter Mass, making a ridiculous over amount of food for the Easter potluck, breaking my toe in a middle of the night encounter with the blanket chest, etc etc etc.

In addition, my sister’s dog Darby arrived to stay with us for a week. Darby is zero trouble. She spent the first day staring out the front door wondering when her “dad” was returning. We took her to Golden Gate Park a couple of times but she was nonplussed. After a walk at Crissy field today she decided we were “ok” and totally forgot about that other family that abandoned her for a week of fun and frolic sans canines. We sent this picture to my sister telling her Darby was on vacation too and who needs them anyway?

Of course, there’s no break yet. Today I finally tended to the things I ignored last week. I have meetings and appointments all week. There might be a few free minutes on Friday.

Don’t tell anyone.

Spring Break

Today is the last day of Maggie’s Spring Break. It has been a long week of going on outings and finding entertainment for each day. It does not have to be much, just SOMETHING to help pass the time. We went to visit my aunt a couple of times, went to Target (Maggie’s favorite place), had her friend over, went to the park a few times and yesterday Teacher Joe and Ivana came to visit and we went around the neighborhood in a power chair.

Maggie does a lot better in the power chair when Ivana comes to visit. Ivana works in the classroom one or two days a week. She has also uses a power chair and for the past few months has been joining in when Maggie practices in the power chair. Its great incentive, Maggie simply tries harder when Ivana is there. The other day it took about 30 minutes to go up the block and come back in the power chair. Yesterday, we went four times that distance in the same amount of time. When it is just Dad or me accompanying her, Maggie does not seem to be able to sustain her head in the position to make the chair go. When Ivana is here, Maggie goes like a son of a gun.

It would really be something if Maggie could emulate Ivana in other ways. I do not know all the details, but I know Ivana was instrumental in getting her living arrangements organized. She lives independently with assistance. Her attendant arrives in the morning and helps her get ready, fixes breakfast etc. Then Ivana is out and about on her own. We run into her everywhere, walking the dog at Crissy Field, the power soccer camp, shopping, at school, everywhere. She takes public transportation and arrives ready for action. Ivana is an independent woman who happens to have some significant disabilities, not a disabled woman who is able to get out occasionally.

I know Maggie will never achieve that level of independence. Her disabilities are too profound and her medical needs will always require one to one nursing support. However, having Ivana around now is helping Maggie get to the next level. We have always taken things one slow step at a time and enjoyed the progress when we see it.

For this last weekday of break, we need one more fun outing. I considered taking Maggie to the new Hannah Montana movie, but it turns out I am not that wonderful of a mother. I cannot handle opening day of a pre teen movie on Good Friday. We’ll just do another loop in the power chair before we have to send it back to school on Monday. Maybe after yesterday we can make it all the way around the block in an hour or so. Go Speed racer go!

Happy Easter, everyone. Don’t put all your eggs in one basket.