The Week in Review

We started with the new nurse this week. The jury is still out yet on if she'll fit with us. However, Emily was able to go to school this week and she had a good time. She learned about the lungs in Science class. Next week she is going to learn to make cookies in Home Ec.


Grace has been helping me put a puzzle together. Its a difficult one and we have fun looking for the pieces together. She's been helping me with laundry and dishes also this week. Nice to have a little help around the house.

On Wednesday I went to the state capitol to advocate for equal wages for private duty nurses caring for Medicaid clients. When I arrived in Olympia there was no parking where I was supposed to meet my group (the class I'm taking). So I drove around and around till I found parking on the street. What I didn't know was that I could only park there for 1 hour, and in that zone (neighborhood) only 1 time during the day. And boy, they enforce it. I got a ticket. It will cost $15 because I couldn't find a parking spot. In the afternoon I found another spot in a lot and paid only $1 for 2 hours. Go figure.....


In the days before I went to Olympia I made a poster and bookmarks to give to my representatives. I had appointments and was able to sit and talk with them for a few minutes about our nursing situation. When I got to the Senator's office I met her and then began to tell her about the nursing situation. She called her assistant (who also has a child with disabilities) in to the office. Her assistant took notes on what we needed, and what was important. I was immensely pleased, knowing that someone actually heard what I had to say. Advocating for something at the state capitol takes time, maybe even years. I know that we may not see the results this year but I'm hoping by next session (next year) maybe there will be more interest to get a bill moving through the house and senate for equal wages. Then more nurses will be interested in providing private duty nursing care for our kids who are on Medicaid.

Teen Age Girl in the House

Emily is still having a little trouble with her oxygen. She stayed home from school yesterday but did pretty good, only needing oxygen when she was asleep. While watching the Disney movie Snow White we discussed how pretty Snow White is and that Emily is as pretty as Snow White. Of course Emily smiled and blushed. I asked Emily if she wanted to wear some lip gloss like Snow White. Of course she wanted to! Her make-up box was buried in some of her stuff. After retrieving it I did my best to make her look like Snow White.


She was thrilled when I showed her what she looked like. Emily now says she wants to wear make-up like other girls when she goes to school. I told her that would be okay. Dad is a little more conservative but we convinced him that make-up is something 14-year-old girls do.

Valentines

Here are the Valentine girls-- Can you see what is the same in both pictures? Thanks Grandma!

Emily is off oxygen. She did great yesterday. After sitting in her chair and receiving Valentines from family she had a 25 minute seizure. That cut her day short. Once she gets the Valium she is very sleepy. So she slept till about dinnertime.

Grandma made the girls little Valentine heart bags. Grace wore hers around during the day and Emily put her's on Kanga and she let Roo sit in the bag. Roo loved his new pocket.

Looking at a Lift

I know its been over a week since I put an update here. Another new nurse is coming to meet us today. The office has told me how much experience she has and how wonderful she is. I hope they are right. Emily has been sick off and on this last week. She needed oxygen a couple of days ago and is still using it now. She is starting to do better during the day but when she goes to sleep her oxygen goes low and stays low.



Grace had a Valentine party at school yesterday. She came home so hyper! She acted as if he had no medication at school. It was awful, she was jumping all over the place and couldn't control herself. We don't eat much candy here because she tends to sneak it. So we just don't buy it, or if I do I hide it once I get it home. No school today. Hopefully Grace will be back to herself.


The new kitten is so cute! I am not generally a cat person, but this little guy has worked his way into my heart already. He kept following me around and wanting to be with me. That will do it every time!

I'm thinking about remodeling our house. The bathroom needs to be changed for Emily's roll-in shower. It is so terribly small and to try to get her into the shower is getting more difficult each day. We've asked Medicaid to approve a portable lift to be put in her bedroom. Everything with Medicaid is a fight. They want us to purchase a portable Hoyer, which rolls under the bed and is a little cheaper than the one we asked for.


However, there is no place to use it, or to store it if we had one. I sent a letter back to the state explaining that, showing pictures of the room around Emily's bed, and her room. There just isn't any room for it. We've asked for a Voyager lift which has portable poles to put around the bed.
The poles are put up and the lift is overhead. There will still be room for the wheel chair once the lift is in her room. Ideally we would love to have a regular ceiling track system, but this is even more expensive. I've just seen a wall mount lift which might work. I'll investigate that. It might work well in the bathroom.

The Great Gas Discount

Last week I got a terrific discount at the gas station, $1.54 a gallon (because of a discount from shopping at the local grocery store). However, as the gas flowed from the nozzle to the tank it came spilling out from underneath. Only $9.35 into the fill and the discount was over. Gas flooded the ground where I stood and I had to put the nozzle back on the pump. After I told the station manager about the environmental emergency I got in my van and drove away.

Did I say drive? Yes..... God was merciful and I didn't blow up and catch on fire. As I headed for the repair shop I thought of all the difficult things that could be wrong with the van. Hole in the gas tank was the worst I could think of.

My van is in the shop. We have an extra car that I can run around it, however it doesn't have capacity for Emily's wheel chair. How was I going to take Emily where she needed to go? Would I be able to pick her up from school if she needed me? What would I do without a wheel chair lift? After explaining the situation to the repair-man I was given a shuttle ride home.

In the afternoon the repair-man called to tell me that xxx was in need of replacing, and oh yes, YYY also was going bad and should it be replaced also? And then there were the battery cables that were in bad shape. (My van is a 2002, how can all this be bad?) I told the guy to call my husband....

It took all day but the van was repaired by evening I was able to pick it up. Wow, great. The hose from the nozzle to the tank was bad and needed to be replaced. There was no real part number for the hose since it had been an after market item to go with the lowered floor of the van, to go with the wheel chair lift. But they found a hose that would work and they put it on. $1275 later I drove my car home. Sounded like highway robbery to me.....

Things went well for a day, till I went to fill my van with gas again (this time no discount). Off in my own thoughts, and because it shouldn't happen twice, I hardly noticed the gas flooding the ground again...... This time a lady from the office came out and told me that my tank was leaking. UGGGGG

So the van is back in the shop again. I gritted my teeth and said, "This isn't going to cost me anything, is it?" The reply was, "Nope, you've already paid."

There were some recall parts that my van needed and they were ordered when it was in the shop the first time. They came in by the time I got the van back to the shop so they will be replaced also. I expected the van to be finished last night. They had it all day Friday and all day yesterday to work on it. Nope, not done.

In the mean time I can't take Emily anywhere. The shop knows this, and says they are doing the best they can. Since the hose is an after market item it is taking some time to find and replace it with the correct part. Great...... I think its time I do some research and find the correct part so my van can be repaired.

The sun is out and birds are singing. Its going to be a lovely day!