Are We Done Yet

Love this picture of Emma at church with us. This was not taken at our church as there are no pads in Catholic Churches that we have around here. I guess they want us attentive and uncomfortable ha ha. Aside from the green eyes, I think this is so cute. Normally she lays on that blanket she likes. But if it gets long she then puts her head up like that. I think saying okay I will be good but are we done yet?

A GOOD AND BAD DAY

I spent a good part of the day without Emma with us. Bummer. We were home most the morning though and then home to feed her and let her out at dinner time. Then off again but only for a few hours. She did just fine. Greg missed her also. I assure her she can be with me every minute tomorrow and in upcoming days as far as I can see anyway.

My elderly Aunt whom we are trying to take care of had to give up her car. I am overwhelmed with her generosity but instead of having my brother sell the car for her she gave the car to Greg and I. My other brothers in town and sister did not need a car. We have the van but this will give us better mileage. Greg will plan to use it to drive to work several time, when/if she is able to go out in the car with us we can take what she still feels is "her" car... Her car means a lot to her. She wanted it to have a good home rather than be sold to strangers.

So Greg drove her car today. She wanted us to when she invited us to visit her and go to lunch there with her. Though we already had the car, we needed her to sign the title, and she had extra keys to give to us too. She was so cute - we pulled it close so she could see it and she said it was in good hands. We had a nice lunch with her. She is a senior apartment still though she gets some nursing care and services there. It has a nice dinning area and we had a pleasant visit.

She likes Emma but are next stop was to get our grandchildren. There is not enough room for Emma and two granddaughters in the back of her car. Turns out their mommy who was working got sick and had to go to urgent care. We brought the girls home after an outing to Target. Due to needing to watch them longer we had to go home to feed Emma and more important to get her outside to go potty. There mom was done sooner than expected and Rosa was sound asleep in the small car. Since Emma was fine we did not change to the van to take her. This gave Rosa a longer nap.

We stopped briefly for supper because both of us had lower blood sugar and couldn't wait. Emma was just fine when we got home. I took her outside. It is good to know she can manage this long without us. But the only bad news was how much we missed her.

The Good NEWS - is with the help of pain pills on a regular basis but a lower dose I was able to get out of the house. We had the nicest time with my Aunt too. She was in much better shape than she has been for awhile.

I had a blast with the granddaughters at Target Super store. Sophia at age 11 cooks and needed items for supper. She was making spaghetti. We needed things too. We also had fun window shopping. I had a lot of patience and we looked at tons of things. It was cool and at that point we did not think there was time to take them to our house to play. Also there wasn't a movie at the right time. Also I couldn't play at their house in the same way due to the pain I did have...anyway it was fun.

We looked at books, and Sophia gave me lots of ideas on good books to read. We looked at toys and Rosa showed me all the cute dolls and both of them the games and things that they thought were fun. They never beg or anything. We just get ideas for birthdays etc. Don't tell but they found a gift for Sophia's Dad (her biological father) and for Rosa's Dad who loves them both like a father...so both girls were excited to do that. We split up for awhile with e alone with Sophia in the book dept and she picked them out. Rosa is a chatter box and fun. But when we go someplace like that sometimes we split up so Sophia gets one to one time with Grandpa or me and to look at things that interest her.

TESTS - so far tests still look okay and the cause of my pain is a mystery. The pain required pain pills today but not as high a dose and it gave me more relief so that was a good sign. I was not pain free but managed. They told me what symptoms to watch for and otherwise we will treat this as a unusual muscle strain and see if it doesnt gradually get better. I did have some new tests on Friday but they were all looking good. All that reassures us at least.

SUNDAY - I hope to get rest and at night go to church where Greg works. We know a young couple that is having a child baptized. Can't wait to meet there baby. That's why the picture of Emma under a pew caught my eye today. Some of the summer weeks Greg's Sun hours are not so long so I can handle going with him. We have a friend I have known since my first real job with ALS that is progressing slowly but he is getting more and more limited. Typically he and his wife are there so I treasure time with them too. He can still talk and really likes seeing us. We sit a long time before or after Mass and chat. I still have to be there about 4 hours though. That is a short day for him on Sunday.

It has been nice but cooler. Greg hopes to work in the yard tomorrow and I think it will be good to be outside with Emma. We will be sure to nap too. I bet I will nap late after a big day today.

Thanks for prayers and good wishes. If I don't write Sunday please don't worry. I still have some pictures on my camera from camp. I need Greg to help me down load them and I have more storeis to share.

The really neat thing about visiting my Aunt is she had us up to her apartment. Many times she wants us to stay in a main floor seating area or before to go places with her. Well it is so special as she has pictures, furniture and things that make me feel almost like I am at my Grandma's house again. She lived with my Grandma most of her adult life until my Grandma died. We looked at old pictures and had a good visit.

Hope you weekend goes well. Congratulations again from Emma to Katie Michurski on her graduation.....Mary and Emma

Hi Folks,

Weather is cooler. We are taking it one day at a time.
Just wanted to wish you a good day and good week.

Nurse Emma and Mary

Photo taken on 2004 vacation. Gosh it was fun. Thought you might like it.

Hot...102 here today.

Dear Folks,

Wish I could say this was a recent picture. It is from last summer.
It was so hot today 102 or higher.
We stayed in AC all day in the house except for essential potty breaks for me.

Don't worry but I am being nurse Emma for a few days at least.
Mary has some abdominal pain but the CT looks okay.
Might be abdominal inflamation or muscles pulled?

I don't think they know.
We are home after visiting the ER dept Monday.
Mary is taking this one day at a time as it really hurts.
But she is coping best she can.
We probably won't do much of anything for this week.
It is so hot it is not so bad being in.
Hot tomorrow but not as bad as this.

Are weathermen correct where you live?
We never know for sure nor do they.
Suppose to then get cooler in 70 I think.

Don't want you to worry
but don't want you to stop reading the blog or wonder.
We are taking good care of Mary.

Have a good day tomorrow and a good evening.

Nurse Emma

No picture today as i am not at home and using my ipad.

A great weekend! My granddaughters shared a good part of the day with us Sat. I treasue those days together.


Sunday i finally got it all right and used my cooling vest. Would have come in handy yesterday. You have to activate the packets that are then frozen. It was just great today. Was still cool after six houts! I got some weeding done, enjoyed outside with Emma and Greg. I even wore it in the house as i got more chores than normal done!!!

I even had stamina to get by with a shorter than normal nap. We were able to see my daughter Becky on our way to tne church where Greg works. Went to evening Mass there and am still there. He cant leave till after 10pm. Late for me normally but i am holding up just fine. I can take it easy Monday is i need to recover from the weekend.

cant say enough about how great the cooling vest is for me. Will be great especially to be outdoors with Emma and with the girls!!

i think you can find my type at stacool.com
I got it from a friend who never used it at a huge savings to me. My ms doctor has encouraged me to get this for a few years. He even wrote it on a Rx slip. I should not have waited though befote i could not have such a high quality type.

Have a good week. Emma sends a special congratulatons to Katie Michurski who graduated!! Emma spent almost three year with her family

Stay Cool

To our good friend Kathy,
whose bed I liked to nap on at camp.
Thanks for the cool card.
Stay cool.
We can't get the email to you to work.
We have not forgotten you.
Stay cool and have a good weekend.

To everyone else also stay cool.
Have a great weekend.

(Picture taken a few years ago. Mary is now grey haired and the group is bigger. Wish they let me in the pool!)

Emma

Have a good weekend. Slow day due to MS today. Will write more and include some camp pictures soon. In the meantime, I hope all is well with you. Trying out my new cooling vest for sure this weekend. Yeah I believe I will see Rosa and Sophia my granddaughters tomorrow. They are coming here. I hope to have some energy and feel better. They are the best medicine ever. Emma will enjoy having them here also.

Not sure if I already posted this photo or not. It was at camp at the end of an activity. I think Emma's eyes say "let's go take a nap". She has the most expressive eyes.

Mary and Emma

Memories From MS Resort (Camp) 2011

This is a photo of my granddaughter riding with a volunteer affectionately nicknamed "Sunny"!! Sunny has a busy life with her children but comes every year to camp. I think she has helped over 12 years. Yes I think I have gone there 12 years. Amazing.

This was taken as we arrived. My smile was probably as big as Rosa's when we arrived. They take items from the cars to the cabins using golf carts. Rosa was thrilled to ride along. Sometimes she is shy but she went eagerly. Emma walked and I scooted. Mike , her Daddy, and Greg came with too. She was the hit of the show. On this day that is much like the beginning of a family reunion it is fun to bring our families and of course show them off. Emma was so happy and has a bubbly personality.

That was day one. We arrived around 11:00 am. We unpacked just a bit and headed down to lunch. Rosa just barely fits on my scooter with me so she liked that. There is a seperate building that is the dinning hall that has a great view of the lake. It has a ramp for all up to the main floor. The bottom walk out floor is a big meeting room used for various activities. Both have great views.

The family is welcome to join us for a simple lunch. Rosa liked that. They has sandwich items and a salad etc. Rosa kept asking me which people were the people I knew? I know a lot of them but of course not all. I think there were over 110 participants and volunteers. I do not know the exact count of course. There is another camp in May but the guests as they call us with MS can only come once. Many volunteers come both full weeks. Imagine many of them if not most use their vacation time to come out to be with us. They tell us it is a joyful week for them though they work very hard.

I am was in one of the "independent" cabins. That means the individuals with MS there can manage there own self care and also cognitively manage independently. MS can impact people in cognitive ways. Most of us notice it in ourselves but it does impact some very significantly and that is sad. They live in the cabins with more volunteers. Those more physically disabled also need to have more care 24 hours a day. Every cabin has a nurse to help out. In our cabin she did not need to sleep there and could also be on call to help at other cabins as needed.

Rosa was not happy when it was time to leave. She told one of the staff that they should let the grandchildren stay to help their grandma's. She encouraged me to make new friends and have fun before she left. Greg had to work in the evening since it was a Sunday. She did insist on helping me unpack and lay out my sleeping bag on the bed. My son Michael was also great and my husband. It was so nice to have them there. I think everyone liked meeting them and they liked putting faces to the names of individuals I will talk about after camp.

That day of camp is slow moving and relaxing. An orientation meeting is held in the later afternoon to explain rules, procedutes and give an over view of the week. I notice the new comers and remember how nervous I was that first year. We all try to be so good to new comers we have to try not to overwhelm them. Also at camp there are a wide range of abilities. That first year seeing so many walkers, scooters, and wheel chairs can be scary. There are some people who have it so severely that it can really be tough to take the first time you come since you have the same disease.

Each year you note that some people are worse and some much worse indeed and that is sad. But as you get to know individuals especially over the years - you don't even notice the wheechairs or other aids. You can look at the faces and smiles and be so glad to spend the time in that beautiful place with such wonderful people - including the volunteers and MS staff.
Most the help is volunteer.

Emma was intrigued by the sights, and smells in this beautiful natural place. It is held at camp Courage.

We had a great time.

Mary and Emma