"It's Your Birthday But I Get the Gift"

It was Carol's birthday yesterday and she was able to spend some time at the beach and have some sushi and cake to celebrate.  She also spent some time on the Westjet site to look for tickets and pulled the plug and booked tickets.

When Carol told Tina that she was booked to go to Ontario later in September, Tina said, "It's your birthday but I got the gift."  I think Tina was pretty happy to get that news.

It will be nice for Carol and Tina to have some time together.

*****

Yesterday,  Jenn and Emma spent the day with Tina.  They got there a little later because of an appointment.  Tina had learned two things today:

1) she can ask google to set an alarm to get people to help her.

2) That Google does not understand her correctly when she has the bipap on.  She tried to call mom on google and ended up having to hang up on 5 different people before she got mom.  So if you are on Tina's contact list and got a hang up from an unknown number yesterday, that was Tina!

Tina said that she is trying to be a good girl and use the mask more to help with her breathing.

We are STEELE standing and one of us will be flying next month.

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Appointments, Announcements and More

Monday was a busy day.  Homecare came and got Tina ready for the day.  Mom and Dad were there before Respite came.  Tina had put in an order for some cookies and they thought they might as well make it at Tina's and Dad could be there to visit and perhaps sample a cookie or two.

The nurse came and checked out her vitals and to see how she is doing.  The Occupational Therapist came.  She is going to check with ALS Canada to see the status of the stair lift.  They are also going to look into funding for a Power Lift Chair.  Tina has one right now that was provided by ALS Canada but it is very uncomfortable.  She found one that feels so much better.  Hopefully, ALS will cover some of the funding and if she gets a prescription from her doctor she won't have to pay taxes.  

Scott brought pizza over for supper.

On Tuesday, the day started as usual and then Judy came to be with Tina.  They went for a drive and stopped at the Cavalier Room in Kingston for lunch.  We all feel Judy is pretty amazing to spend time with Tina and she told me that, "I enjoy it."

When they got back home, Tina went to a lawyer's appointment.

On Wednesday, mom and dad drove Tina to Kingston to meet Jenn.  Side note...it was Jenn's birthday.  Tina had an appointment with Dr. Melanson, the neurologist.  They walked/rolled into the appointment and were asked "why are you here today?"  Tina told them that the office had called and made the appointment.  Dr. Melanson was the doctor that had given Tina the ALS diagnosis back in January.  He schedules a follow up appointment to go over all of the same things.  He told them that most people can not retain all the information after they are told that they have ALS.

He told them that there was some progression of the disease but nothing drastic.  He wanted to have the occupational therapist order a brace for her hand.  He was concerned about the swelling and curving.

He also told them that a new drug, Albrioza had just been approved 2 days ago in Canada.  This is only the third treatment for ALS that has been approved in 20 YEARS!  The doctor will be looking into this drug to see if Tina is a candidate for it.  Many times people are disqualified for a drug due to them being further along in the disease that the pharmaceutical has stipulated.  They are, of course, looking for positive results and and don't want someone to take the drug if there is already too much progression.  As a family member of someone with ALS....let's try anything and everything!

This morning, Mom and Dad were with Tina and it was super warm and humid in Ontario.  Tina needed to go inside because the weather was bothering her breathing but before she hung up she wanted me to see her pedicure that her new Respite worker had done for her.  Tonight Nancy H was surprising Tina with a great sounding casserole with homemade buns and an apple pie for dessert!  It makes my supper plans look a little weak.

Before I go into the good news, we want to thank Freda for bringing a great dinner on the weekend.  It was really appreciated and ENJOYED!

Good News Announcements

In Carol's family....James and Jen have their daughter, Taylor and her good friend on the island for a visit.

The family got to get out and spend some fun time and they take their fun pretty seriously.

James and Jen are also taking possession of their new home.  Carol will be sad when they move out but at least they won't be too far away.  Congrats James and Jen...looking forward to visiting you sometime in your new home.

Dustin just flew home from Ethiopia.  His job takes him all over the world.  Carol is so excited that Dustin and Katie's daughter, Alexis and her boyfriend will be coming to the island to visit in July.

Carol went to Xarra's yesterday and her little grandchild waved at her.  Ultrasounds sure are a lot clearer than they were 30 years ago.

Hi Baby!

In my family....new jobs are turning up.

Jenn was offered two different positions and chose to take the Ward Clerk in Surgical Screening.  This is a permanent part time position that will be at least 3 days a week.  She will only work days with no weekends or holidays. I'm sure that her kids will be happy to have more evenings with her. Congratulations!

Our son is changing his uniform. I'm a little sad that they will be moving provinces but am excited for their new adventure.  He has a great partner to explore new places with.  Wishing you all the best!

And Tina's boys - they continue to help in whatever way they can.  They are very much appreciated by the fam.

Help us keep the good news going.  Please post what happy thing is happening in your life right now so that we can celebrate with you!

 

We are STEELE Standing and we can't wait to hear what is happening in your life.                                                        

Some Good News

I better not wait too long before posting my next blog.  We appreciate all those that show so much concern for us and want to make sure that we are STEELE Standing.

On Monday, Tina had a full day of activity.  Her Homecare worker came in the morning to get her ready for the day.  The nurse came to check in on Tina through the day.  She had Respite for the afternoon.

Vicki came for a visit.❤️

The girls had a nice visit as always.  Vicki brought flowers and chicken mac and cheese for dinner.

On Tuesday, the Homecare worker came in the morning and mom was there to spend the day.  Tina called a little later than usual because her and mom were outside.  Carol and I often wait until Tina calls us because she is the busiest one with all of her appointments.  Ron and I were on our way to Calgary when the call came in.  I had to have my four year follow up appointment for my thyroid cancer....all good!!😃

Tina went shopping with mom and Austin.  Mom had a bit of struggle getting Tina up the ramp and then ended up banging the wheelchair a little bit in the store....the good news is that Tina still has her feet....the bad news is that she now has to put both feet on the one foot rest.  Ooops!🤪

Tina and Mom figured out that even wheelchair bathrooms are not always wheelchair accessible.  We may never notice these things.  Mom and Tina went into the bathroom and the wheelchair accessible stall was right when you open the door.  While trying to maneuver Tina into the stall, they were blocking the door.  

Tina said that the shopping trip was successful.  She was looking for some new pants.  She said that it was a little tricky.  She needed comfy and also needed them easy for others to pull up.  Am I giving too much information?  This is the life of an ALS person.  They slowly give up their independence and not all people are so positive about it as Tina.  We are so thankful for her attitude.   The shopping consisted of Tina picking out pants that she liked.  If they passed her test then she would ask mom to have them pass hers.  Finally, the votes were in and new pants were purchased!👖

On Wednesday morning, mom was back with Tina for the day.  The schedule was a busy one.  She had physio scheduled and then Paramed was coming.  They are responsible for Respite which consists of a few hours each week.  They came to ask questions about how it was going.  What is Tina asking the person to do and is this enough hours for her?

I asked Tina how her mobility was.  We don't see her moving too much when we are doing our video chats and sometimes we only see the top of her head or the ceiling.  👀She said that since her hospital stint she has lost most of her arm movement.  She can move them a little more in the morning than later in the day.  Sometimes Tina has chips at night and she works hard to get them up to her mouth.  That is called incentive physiotherapy.  💪 Mom said that Tina can still walk with help.  We are hoping that this is a plateau and that it will last for years.  Of course, we really want to see it reversed altogether.🙏

Our morning chats usually consist of a little entertainment.  This morning this little ripper was playing with both a cat and a big dog.  Auggie is great amusement.  Carol has had so much sadness and this little guy is letting a little bit of sunshine back in.  He also gives her lots of work!

Carol also has some other exciting news to share.   Xarra, Carol’s only daughter, is expecting! 

A new little life is expected on or around November 9th.  It’s so refreshing to be able to share good news!

So April has been more than a tough month but we are ending it with something exciting to look forward to.

We are all STEELE Standing.  We are STEELE looking ahead and we STEELE appreciate all of you!