Ahhhh, Monday

No one ever says "Yay! It's Monday. 

Except perhaps for mothers sending their children back to school after a wild weekend.

I do look forward to Monday morning because when Maggie gets on that bus I can restore some order to my day. When she is home, whether the nurse is here or not, I am constantly on call and have one ear perked for the way she coughs, etc in case something is amiss. I honestly look forward to the mental and physical break. 

Of course I didn't get it today because Maggie is sick. She has a fever, which would ordinarily freak me out a little bit, but not this time. Tim had a fever and slept all weekend and Steve doesn't feel well either, so Maggie is just catching the virus that is making the loop around this house. So far, the only one untouched by fever is me, but I stayed in all day yesterday with a stomach issue. Don't know if that was my version of the same thing or not. Hope so, because I already feel better. 


The weekend would have been terrible if not for the kindness and generosity of Maggie's bus driver. Maggie arrived a bit late on Friday  like 3:50 instead of 3:30. She was tired but happy. I waited for her to get home to run some errands and because of the delay I left as soon as the nurse took her upstairs. I returned home right around 5:00. When I came in the nurse asked me where Maggie's tray was. I hadn't even noticed that she didn't have it when she got off the bus. The tray is essential because she cannot "talk" without it. The switches for her talker are on the tray. Now it's 5PM on Friday and we don't have a tray. The weekend was looking mighty bleak. 

I frantically called the bus company but they said they didn't have it. I texted the nurse who apologetically told me she slipped it right behind the bus drivers seat. I called again and told the bus company that and said tell me where to go to get it. I will drive to wherever he is to get it. The bus yard is across town, but I didn't care. We HAVE to have that tray. Just tell me where to meet him and I will go.  She called back a few minutes later and said, "Carlos said it's on the bus and he is bringing it to your house, he just left the yard." 

I was floored. He did NOT have to do that but at the end of his work week he drove that bus all the way across town to deliver that tray to Maggie. That was probably an extra 45 minutes at the end of a Friday afternoon. Talk about going above and beyond! I was quite impressed and let him know that. Carlos just shrugged it off because he is such a nice guy. 

It was a great start to a weekend. Now if we could just get this week going.

Right tool for the job

When we invited folks to Maggie's big 18th birthday fandango we asked for no gifts. The idea was that the party was to thank all those invited who helped Maggie in some way. Most complied. A few thought that was nonsense and gave her gifts anyway. Maggie did well and had a great time.

One of those gifts was this tool set from Barb, Maggie's Physical Therapist. She thought every girl should have her own tools set, including the cool tool bag. The fact that it was puce and pink was just a bonus. There is a matching hammer, screwdriver (flat and philips), wrench, needle nose pliers, tape measure and a level as well as two sets of allen wrenches. 


Though we have not yet had a use for the level, I believe we have used every other tool multiple times.  


There are a hundred different places on the chair that need help and we always have the right tool to fix it, though sometimes that's not enough. For instance, when Maggie's foot was stuck in the wheelchair a couple of weeks ago, I ripped into the allen wrenches until I found the right size and tried with all my might to get that box off. I had the tools, but not the strength and had to call the fire department for help. (They had the strength, but didn't stop to use the tools and just snapped the bolt - and I'm still fine with that.) 


Maggie's talker has been very temperamental the last few days. I had to keep resetting it and then it would work for a while but stop scanning again. Finally I realized one of the two switches was bad. It was probably failing over the past few days and I was blaming the computer instead of the switch. Once it stopped completely, light finally dawned. I have a few spares, so changing the switch was easy enough.  All I needed was a phillips head screw driver, which is included in the handy dandy pink and puce tool bag.

I figured it was time for Maggie to lend a hand. This was her voice we were working with. It was her switch on her tray and her tools.  I told her she had to give me a hand and she just looked at me incredulously. Me? help YOU? That is not how this set up works.

Maggie would have no part of taking the old one off but became quite fascinated when I unscrewed the old one.She decided it was worth her effort to help me put the new one on. 

She was quite proud of herself when she was finished. I'm sure she's looking for more projects.


 If I come home and she's remodeled the bathroom, I will be delighted. 
. 

Make it snappy!

Maggie sat patiently in her chair while Steve tried yet another repair of her headrest. If we can get it somewhat stable, Maggie and I can go out and have some fun. Being stuck in the house on Spring Break is no fun. I just received an email that a repair guy will come to US tomorrow! Yay!!!

Once Steve was done I knew Maggie had things she wanted to say but she also needed to eat. I asked "do you want your talker?" she signed "yes." I said, "Ok, do you want me to feed you first?" She slammed her hand down in an emphatic NO!  She wanted her talker so she could communicate. I laughed and started setting up the talker. That process takes a few minutes. I have to affix the tray and the pole and then the talker. She turns it on and it has to boot up, which takes another minute or two.

I finished and looked at her and said, I know exactly what you are going to say" She smiled wickedly and made this sentence

"Mom, breakfast now, I'm hungry." 

Food tastes so much better when it's ordered.

Steve also entertained Maggie by juggling oranges. if you're stuck in the house, it's good to have an entertaining Dad. (see I didn't even call him a Clown!)

           

Day of Rest?

Ahh Sunday. A day of relaxation and rest.

Not today.

We started out quietly enough. The nurse was delayed leaving because of a flat tire, which was a bummer for her. Maggie was nagging me to get her dressed so we could go out. I promised her we would go to the park if the rain stopped but I started the crossword in the Sunday paper. Maggie was getting increasingly impatient and for good reason; I was ignoring her.

By the time I really paid attention to what she was saying she had created a very lengthy sentence. She was asking me to get her dressed and telling me she wanted to go out. Here's a quick video of the effort

 She even added the dog, indicating he could come for a walk.

It was not to be, however. Her wheelchair broke again. If it's not one thing it's another.The headrest snapped off at a central weld. It's not safe for her to be transported. I did my best mom engineering to make it safe enough to sit in. It's known as Duck tape in some circles. She's not very happy about it. I can't even do my crossword because I have to keep my eye on that "fix" as there is the outside possibility that it won't hold.

Of course it's Spring Break and now she is stuck at home - but he would have been anyway because there is no way the bus would have taken the chair like this. I am waiting to hear where to take it and will do that  tomorrow as soon as the nurse comes.

It's going to be a long 24 hours. 

Wild thing, I think I love you

Maggie can be a wild girl at times. Yesterday was one of those times. I am never sure what sets her off, but once it starts you know you are in for a long afternoon/evening. She is not upset or anything. In fact, she thinks it is funny. It is not. She kicks, scratches and carries on when we are trying to change or feed her. Ignoring her means she will pull on her trach or, if she is lying in bed, start ripping her diaper apart. She wants attentions, but when you give it to her she scratches. It is a trying situation.

Generally, these outbursts are not directed at me. It has happened, certainly, but I do not put up with it. I just grab her hand, tell her not to scratch, finish whatever she needs and walk away. If she grabs her trach I simply hold her arm, but I do not talk to her. It is all business. She seems to respond or more likely, she just gives up because she is not eliciting the desired effect. That is not true 100% of the time, but it works a lot.

Maggie’s afternoon nurse takes a completely different tack, one that is far less successful, but rather entertaining. The nurse is in her 70’s and speaks perfect English with an accent. (She is a Filipina) She has been here since Maggie was a baby and these two love each other. This nurse is the most frequent target of this behavior. Perhaps because of the way she handles it.

I work just outside of Maggie’s room. I can hear everything that goes on in there but I do not get involved unless they need me or Maggie is actually calling me. I listen and I am aware, but I would get nothing done if I engaged with the two of them all afternoon. The nurse needs help lifting, diapering and handling Maggie, which I do. Yesterday Maggie arrived from school already worked up. In fact she was acting out at school too, something she never does.

The nurse, Fely, was scratched right away. I heard “Maggie why are you scratching me. I love you and I take care of you, it is not good behavior to scratch.” I can tell Maggie is laughing. Then, lots of kicking of the side of the bed followed by a high pitched, “Maggie, Maggie Maggie, why are you acting so. I want to take care of you but you are making this very difficult.” Maggie is still laughing.

Mom enters. “Maggie cut it out. And Fely, do not talk to her; she is playing a game with you. It is not a nice game.” Maggie is compliant for about 30 seconds. We put Maggie in the chair. Fely puts a bandage on the scratch (a bit overdramatic, but that’s cool). I sit back down. Maggie is kicking the footplates on her chair and trying to arch back, but she is laughing like crazy. I can see her from my desk. Fely starts in again. (and the accent makes it here) “Maggie I am your nurse and I want to care for you but you are having bad behavior.” Maggie reaches out to scratch her again, but fortunately hits the band aid Fely has just placed on her arm. Fely’s pitch gets even higher, “ Maggie Maggie Maggie, why are you scratching me?”

Maggie’s laugh gets louder. Mom’s patience grows thinner.

I said let’s set up her talker, She needs something to do and she will keep doing this as long as she is getting the attention she wants from it. We do that. The nurse continues the chatter. I roll my eyes. Maggie gets her talker set up and pushes several buttons to make a sentence.

“Fely, I am good”

I stifle a laugh. Fely, in her accent says “Baloney”

Maggie laughs her head off. Then “Fely I am good, Fely”

Fely: “good girls do not scratch their nurses.”

Maggie laughs again. I am not interfering but thinking “let it go, already”

Maggie clears her talker and makes a new sentence: “Fely is good.”

I look up and Maggie is beaming at Fely, who is also smiling and says. “Thank you Maggie.’

They worked it out on their own.