Hospital, Testimony, New Equipment and Borje Salming

 Wednesday is usually a Jenn day and so she was at the hospital with Tina.

She gave us reports through the day and the first one was that Tina ate all of her breakfast.  She hasn't been hungry for quite awhile and we all know that hospital food isn't the best and so it was great that she had enough of an appetite to finish her meal.

Her blood pressure was 124/80 which is great for this Baby Princess.

Physio came and it was good that they were able to get started back on the stretches.  She actually walked today during physio.

She ate her breakfast and lunch.  Vitals are good and she walked to the doors by the elevator.  Jenn wheeled her downstairs and she sat outside  for 1/2 hour waiting for Austin.

When he arrived it was time to go back up.  She walked to the washroom and relaxed waiting for lunch.  She is her bossy little self!"

Here is the link for Tina's testimony that she did at church and I am hoping that I can add it here so that you can all hear how strong Tina is.  Click on the link to listen.

Tina's testimony at church

Today, a retired Toronto Maple Leaf Player was diagnosed with ALS. 

Borje Salming Diagnosed with ALS

"I do not know how the days ahead will be, but I understand that there will be challenges greater than anything I have ever faced," Salming said in a statement.

They are still not giving a discharge date and we are all thankful that Tina is getting the care that she needs and is feeling so much better.  Some of you have asked if you could go in and sit with Tina while she is at the hospital.  We so appreciate these offers but unfortunately with the hospital restrictions, they will only allow the 4 people that were put on the visitation list.  Usually only 3 are allowed but they made an exception and let 4 people be named.

We are so happy that Tina is STEELE improving with the health care that she is receiving.  Thank you for STEELE reading.

Appointments, Visits, Corrections and Awareness

On Wednesday, the physiotherapist came and liked the new stretches that Judy had found.  Way to go Judy!  While Tina was doing her stretches, Carol and I were exploring Waterton.

On Thursday, Mom and Dad took Tina to Kingston and met Jenn there.  Jenn took Tina into her pulmonary function test.  They then had an appointment with Dr. Fitzpatrick to go over the results of the test.

There was very little difference from her last breathing test.  The doctor said that there was a slight decrease but they were not concerned about it at all.

The doctor did suggest a "cough assist." This is a machine that blows air into the lungs and pulls it out quickly to clear mucus.  A Respiratory Therapist from Home Care will come and set the machine up and explain it all to Tina and whoever might be there that day.

She is scheduled for a follow up appointment in 6 weeks.  They were a little concerned about her bruising around her eyes after her fall.

They all made a trip to Costco before they made their way home.  It was a full day.

Meanwhile in Alberta, Carol and I called Hart n Hart to order our STEELE Standing sweaters and shirts.  We need to make sure that they are ready for our cottage time.

On Friday, Carol left for home.  It was so nice to have her here.  She got my gardens looking better than they have ever been.  We did chat for a bit while she was driving and said hi to cousin George who was visiting Tina.

I need to make a correction from my last post.  I thought that Tina had fallen later on Saturday but it was actually in the morning.  So after Tina smashes her face, she went on a road trip with cousin, Tammy.  Now that's one tough girl.

******

I got filled in on some more meals that had been delivered.  Thank you to:

• Thelma (friend) a for bring salads, deviled eggs and more
• Judy (cousin) always plans some kind of lunch and this week she brought subs from a Butcher Shop
• Nancy H (home church connection) brought homemade soup.
• Casey (friend) brought a meal.  I think it might have been chicken tacos.
• Dawn & Bert (pastors) - meat dish in a jar and a dessert

Thank you to all and if we missed anyone, we apologize and thank you too!

What are the types of ALS?

The most common form of ALS is called sporadic ALS, meaning the disease can affect anyone regardless of gender, ethnicity or age—although it most often affects people between the ages of 40 and 60.

The other type of ALS is called familial ALS, which means it is capable of being passed from a parent to his or her child. Approximately 5 to 10% of ALS cases are familial.

Regardless of whether someone has sporadic or familial ALS, 30% of all people with the disease have a form referred to as Bulbar ALS. In the early stages of Bulbar ALS, the motor neurons in the corticobulbar area of the brainstem are the first to be affected. This means that the muscles of the head, face and neck become paralyzed before muscles in other parts of the body.

Tina was told that she doesn't have the familial type but not really what she does have.  All we know is that it is not nice but she is STEELE Standing and we are standing with her.  Thanks for standing with us.  

Words cannot express how much it means to us when family and friends are willing to spend the day with Tina.  

Thanks for STEELE Standing with us.  Thanks to those that have or are planning to spend time with Tina.  Thanks for the meals and treats.  Thanks for praying. 

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!

Physio and more

Earlier this week I said that it takes an army and it is amazing how this army just keeps adding new recruits.

Yesterday, the physiotherapist, Jennifer came to see Tina.  She showed Tina some exercises and helped her with some.  She thought Tina should be able to use a cane or a walker.  Tina's arms are very weak and not very mobile so it was hard to imagine how this would really work.  An occupational therapist is supposed to come some time and she may have different opinions.  Tina was left with a list of exercises and stretches to do.  On a very positive note, Tina keeps getting told that her legs are very strong.  She’s planning on keeping it that way so that she can be swimming in July!!

Jennifer will call next week and be back in two weeks to see how Tina is doing with everything.

A family friend stopped by with a generous meal card.  "Uncle" Ray as Tina calls him is one of the most kind, gentle and caring individual you will ever meet.  

Ray told them to let him know when that is used up and he will get them another one.  Sometimes you look at things happening in the world and you get a little mixed up and then an Uncle Ray steps in and you just know that there are a lot of good people letting their light shine and it just makes you smile.

Tina and Austin were treated to a lasagna dinner on Thursday night.  There is nothing better than a wonderful warm dinner delivered on a rainy day.  Thank you Kathleen for blessing Tina and her crew with a delicious meal.  Tina didn’t even know Kathleen…she is just a lady that wanted to help.  Now, that’s pretty amazing.  

I had an appointment on Friday morning during our usual morning chat time.  I decided that I didn’t want to miss it so I accepted the video chat when it came in.  Thankfully, I have an amazing hairstylist that enjoyed being a part of our chat!  Thanks Heather for being a good sport.

This morning chat thing has become a real habit…a good one.

Thank you to everyone who helped this week.  

We are STEELE Standing…thanks for standing with Tina!

Please keep praying! 🙏