Short and Kind of Sweet

I'm trying to keep you all informed with Tina's journey.  You have all shown so much love and compassion towards the Steele family and we are very appreciative.

Tina has been a little quiet the past while.  Her nerves are raw and she has a hard time doing the video chat so much of my information has been silenced because she hasn't felt like talking.  This morning I was excited when the Sister Three video rang in.  Ron answered and I quickly stole the call.  There was Tina on the chat.  She is trying to do short chats once in awhile and hoping to develop strength to do longer ones.

Yesterday, Judy was there for her committed Tuesday and they spent some time shopping for some warmer clothes for when the cooler days arrive.  Emma was busy trying to pack her pile of clothes to get ready for when she leaves.  Nadine came for a visit.

Mom was there today and Emma is putting in her few remaining days until she goes back home for school.

It was just really good to see Tina and have a short chat before she needed to go and I mean she needed to go!  TMI would be what the kids would say.

This morning was the first day of school in Alberta and Sarah started grade 8.  

We will keep you posted with any information that I receive.  If you have any news, please send me a message.  Tina wants her journey documented and we are working to do that for her.  I keep praying that one of my posts will be titled, "She's healed!"

Thanks for STEELE standing with us even in the silence.

"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.

We really appreciate all your comments either on facebook or on this blog.

Note:  If you leave a comment on the blog and you would like to have us know who you are, click on the down arrow beside anonymous and choose Name/URL and then enter your name.  You don't need to put anything in the URL.  We will then be able to put a name to the comment.

Happy Birthday Carol!

 Today is a special day in our Sister Three World.  Our oldest sister, Carol is celebrating her birthday.

Carol is a wonderful sister.  She was amazing at the cottage looking after Tina's needs.  She is a beautiful person and I always enjoy the times that we can spend together.  

She enjoys it when people stop in to her beautiful part of Canada. I am sure that her Prince Charming will do something to spoil her today because she deserves it.

She's got a great family that loves her as she opens her arms to her own children, Mike's kids and Tyler.  The house is often food and there is lots of love and food to go around.

This year has been very hard and Carol adopted a new little friend to give her love when she needs that unconditional love.

Happy Birthday Sister One....Carol, we love you!

******

News from Tina's world....

Janie, or Jane, as others call her stopped in and sent me this report:

"Hey FYI saw Tina quick today and I thought she looked great all things considered.  I even got to have a quick chat with Carol!  And your mom was there & Anthony....I didn't talk to Tina long as she was videoing with Carol."

Janie didn't come empty handed and I'm sure that they all enjoyed her visit and her goods!  She made sure that Dad was to get some for his belated birthday treat.

Carol and Tina were able to have a short video chat on Monday.  Carol said that it was so good to see her and hear her voice.  Unfortunately, I wasn't able to join in due to an appointment.

Last week, Jenn brought a hospital bed for Tina.

Tina is now set up in the back sunroom and Janie said that it seemed comfy out there.  She can now supervise all those that hang out clothes in the backyard.  

We talked to Emma and Jenn a couple of minutes ago and they are on their way to Tina's.  Casey and a PSW were there to help Tina with a shower.  It has now become a two person care for Tina.

Judy continues to do her Tuesdays and it is so appreciated.

I just talked to mom and dad today and they said that Donna B. was just there dropping off some Royal Coachman dinners and a homemade raspberry pie. She was on her way to visit Tina and drop something off there.  

I may have missed some of the people that have helped, visited or brought food as Tina doesn't feel like chatting as much these days.  Please feel free to send me a message if you visit, help, bring food in order to help us continue to document Tina's journey.

We want to say that we STEELE appreciate all of you.  This disease is moving fast and sometimes we find it hard to breathe when we hear the progression.   When I told Carol yesterday that I was having a hard time catching a breath, she said, "But we must.  We will get through this together."

So together we stand.  Thank you for STEELE standing with us.  We may be leaning a little harder on you these days.

Yard Sales and Napanee Connections

On Saturday, Howard H hosted a garage sale and all the proceeds went to Tina to help them.  Emma, Abby and Anthony did their part by running a lemonade stand.

They are pretty cute salespeople!

I was told that the day brought in just over $1000!  Tina was able to make it to the garage sale.  Hilda said that it was so nice to have a visit with them for a bit.

Thanks Howard and Hilda and all those that helped!

They were also able to get a ramp from the Gananoque church so that Tina can be wheeled into the bedroom instead of having to do the one step up.

Nursing has been changed to a daily visit instead of just twice a week.

Tina's beautiful blanket with the heart warming story behind
it a previous post.

There is still a struggle with the PSW and Respite times but this should be (hopefully) resolved within the next two weeks.  Saint Elizabeth has now got their Director involved to try and resolve the no shows or coming later than expected.

Tina continues to struggle with a lot of anxiety and panic attacks and so her medication has been increased.  Her anxiety is due to the workers not showing up and the progression of the disease.

With nursing coming daily, her care requirements will be reported more frequently and hopefully more care will be added.  A request was put in that the PSW time be changed from 1 1/2 hours a day to 2-4 hours and that Respite be increased to 4 days a week.

Today when I talked to Tina for a quick minute she said that she had gone to Dairy Queen for ice cream.  It's so good that she can still get out for these little treats.

.....

In Carol's world, Dustin (her second oldest boy) came for a week or so to visit on the island.  Carol got to have both of her boys around for a bit and it was good for the soul.

Ron and I drove north to a friend's birthday party.  It turned out to be a Napanee reunion.  There were lots of connections.  

The birthday was for Kevin, an OLD friend. 

Remember the Alberta boys in a previous post?

Kevin had recently been in Napanee to visit his mom, Thelma. Kevin's sister, Nancy has blessed Tina with meals and tarts.  I now have her recipe to try. Kevin had also stopped to see Tina a couple of times. Leanne, Kevin's wife, was friends with Tina when they were in their teens and apparently had a few experiences together that we laughed about.  I couldn't get a good picture of Leanne because she was busy hosting and looking after her little grandchildren.

Gary S. was also there.  He was quick to say that we were his Sunday School teachers way back when...

Ashley was there and the connection was two fold.  I don't think I had met her before but she is married to Kevin's nephew, Tyler.  Tyler's mom, Donna B just started following this blog.  Ashley's parents were youth pastors' in Belleville when we lived in Frankford, Ont.  

And then, in came friends of Kevin and Leanne's, Gord and Kendra.  We had never met them before but found out that Gord is a brother-in-law to Carolyn, another blog follower. They just moved from Napanee to retire in Alberta.

This may be all a little confusing to people that aren't connected to Napanee but I thought it was fun to share for the many that follow the blog that live or are from Napanee.

When we left Kevin and Leanne's, we went to stay overnight at Dustin and Katie's.  Dustin is our nephew and happens to be Kevin's 2nd cousin from the other side of the family.  Mind blown?  Let's just say "It's a small world."

We were thankful for some friend/family time in the west.  There were many questions about how Tina was doing.  Tina's journey continues to grow as people follow her story through these posts.

We have not been having our morning Sister Three chats and they are missed.  Mom and Dad told me that they continue to be amazed at how many people have poured out time, money, food and gifts to Tina.  

So we continue to STEELE Stand...sometimes we are lonely, sometimes we don't feel like talking but we are STEELE here.  We STEELE appreciate your thoughts, comments and especially your prayers.

Oh ...and one more thing, Howard (the garage sale host) was originally from Napanee!!!

She's a Motorin'

August started off with Tina not feeling well and ended up in Hospital requiring IV fluids twice.  Both times in Napanee on Wednesday and Thursday.  The nurse was not happy that she was not admitted and we ended up in KGH on Saturday.  After 3 1/2 hr wait in emergency she got a bed and meds.  She would be admitted and test showed she had a virus.  More meds and IV and released the following Friday doing wonderfully better.  On Wednesday last week she got her replacement lift chair and her lift.

Today she had her power wheelchair delivered.  After a test ride I had to do some adjustments to make it more comfortable for her to use and that took about 2 hours to disassemble and reassemble and no spare parts.

Homecare has been the norm no calls and no show Sat. Sun & Tues this week so far.

On Monday, respite was there for the day.  Tuesday, Judy came and spent her regular day with Tina. They took the chair out for a test drive.

Picture by Emma

Lynne M. stopped in for a visit.  Pastor Burt also dropped in to say hi.

Today, we got a video chat from Jenn who was spending the day with Tina.  Tina hardly would stop to say hello.  She was buzzing along in her electric chair and even doing circles in the road.  She looked pretty happy moving on her own.  Emma was running along beside and at one time sitting on Tina's lap.  Jenn finally gave up trying to video because Tina was getting too far ahead of her.  It was nice seeing Tina move on her own, giving her some independence.

We are glad that Tina finally got her wheels.  She's leaving people in the dust and doing donuts.  She had to take a driving test to handle the chair and she passed and now she is flying down the roads of Napanee.

You go, girl!  Do the donuts and the speeding.  Watch the curbs and don't do any wheelies!  You don't want to lose your license.  We loved seeing the smile and the sense of freedom in your eyes.

We are STEELE Standing and Tina is now wheeling.  Thanks for continuing to pray and visit and sending us your comments.

----

Thanks for all the birthday wishes to Dad!  I'll make sure and share them all with him.

Carol has been enjoying some time with Dustin.

We've been celebrating birthdays at our house.  Sarah turned 13 on the 6th and Ron turned 59 on the 12th.  One is a teenager and one has one more year to retirement.

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He's STEELE Standing

The patriarch of our family turns 86 today.  Dad is celebrating his special day in style....going to Denny's Restaurant.  

Dad retired from work 16 years ago after a long career with Dupont.  He said at that time that he wanted to get out of there to enjoy life after work and he did.  A number of years later, he suffered a couple of heart attacks but even that didn't seem to stop him.  He has slowed down the past few years with his legs giving him trouble.

Dad was called "Sparky" growing up.  He always had lots of energy.  In his younger years, he played hockey and mom was there to cheer him on.  I have heard lots of stories about the purses coming across the boards when dad would check someone close to where mom and her sister were sitting.  I think mom might be the reason that they put plexiglass around the rinks now.

When we were young, dad was the one that would organize a baseball game in the backyard for the neighbourhood kids.  I will always remember him shouting to one little guy on third base to run home and the boy took him literally and took off home (to his house).

On hot days, he would come home from work and tell us to get changed.  We would hurry to get our bathing suits on and head to the local quarry for a swim to cool off. 

In the winter, he would shovel some of our back yard and water it regularly so that we could have our own ice rink.  I remember once him even building an igloo.  He was always kind of a big kid.

He enjoyed travelling up to about 13 years ago.  They travelled by plane, car and motorcycle seeing Canada from coast to coast. 

He is now known as Papa to lots of grandkids and great grandkids.

Happy Birthday Dad from The Sister Three!

I was pleasantly surprised this morning when talking to dad that my ipad rang and it was Tina.  We haven't been able to do our regular chats because of Tina being sick.  

Carol didn't make it on this morning and the chat was very short.  Tina just wanted to let us know that her emotions are out of whack.  While she was sick, before going to the hospital, meds were overlooked and now she needs things to regulate.  She is doing better physically but emotionally is not doing well. 

Emma is back at her side to help out.  Today the homecare worker came in the morning and respite was soon to arrive.  The nurse was coming to check her vitals.

Please continue to pray for Tina.  This is a journey that no one wants to take.  

Tina is STEELE Standing....she just needs a little more support.  Thank you for supporting Tina and our family in your thoughts, prayers and generosity.

Note:  If you leave a comment on the blog and you would like to have us know who you are, click on the down arrow beside anonymous and choose Name/URL and then enter your name.  You don't need to put anything in the URL.  We will then be able to put a name to the comment.

Home!

Mom and Dad drove to Kingston today to pick Tina up from the hospital.  After getting her situated in the vehicle they drove further to pick up Emma.

They got back to Tina’s around 1:00 p.m. Tina was hungry when they got home, which is a good sign.  Mom made her potato soup and when I was chatting with Emma, Tina as enjoying an ice cream sandwich.

The bed use to be too high for Tina and now it is lowered and they are making it more comfortable for her with a wedge and pillows.  They got her settled in there and she was watching some old classics.

The nurse is coming tomorrow to check her vitals.  They put in a request to have homecare increased from 1.5 hours a day to 2 to 4 hours.  He has also asked that Respite be increased from 2 days to 4.  We are hoping that he gets this and more and that the positions that they already have get filled.

Tina is home, maybe not ready to party but hopefully she will continue to feel better.  

Drink, rest, stretch….repeat.

She’s STEELE Standing and STEELE has a smile.  Once again, we all take a deep breath.

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.

Update from Jenn

She is getting better and eating more softer foods mac & cheese, cottage cheese mixed with peaches for supper last night with vanilla pudding and brownie for dessert.

Legs are weak so limited standing.  Sitting up she is good for 1/2 hour then needs to lay down.

Vitals are much better took her bypap to her yesterday so she has that.

She has her tablet and good group of support but she's at the point she likes someone with her as comfort and assistance."

Carol sent us a little bit of serenity

Jenn sent this information about yesterday:

She had a decent day, we had a meeting with Melissa, Care Coordinator and she is going to reiterate to the agencies the importance of her being a priority, and any calls about no-show have to be called! Judy is going today.  She was tired out after the meeting with Melissa.  She did sit up in the wheelchair for about 25 minutes.  I'm not sure why.  The Charge Nurse had it down she had more mobility than what she does because he was confused when something was said about her being fed.

They are putting a request in for Physio to come work with her in the hospital which is good because she hasn't done anything in essentially a week.

From Carol's World

And what we would all like to be doing....wouldn't it be good to put life on pause and just go cruising!

Tina is STEELE improving from whatever took her down so low.  She STEELE needs lots of care and prayer.  We are incredibly thankful that she is at KGH getting the medical attention that she needs.

From Janice C

 Thank you for STEELE Standing with all of us!

Update from the hospital

I will keep this in real time as it seems easier to keep it straight in my head.

Sunday

11:52 a.m. - Jenn was working and popped in to check on Tina.  She sent this: “Aunt Tina has more colour.  She drank a good amount of water.  They are holding off on IV for now but have it ready if needed.  She is going to email Dr. Melanson to let him know she is here. And we got a call bell she can use!”

1:20 p.m. - “she has ate some ice cream and had a bite of a club sandwich.  This is her second glass of water.” - from Jenn

Carol told Jenn to tell Tina that her garden is looking great as she tries to work away anxiety.  I added, that my garden looks horrible and causes me anxiety.  

At 7:48 p.m., Carol asked, “How’s the bp?”  I thought for a while wondering what this short form was and then asked, “Does this stand for Baby Princess or Bad patient?”  When she responded with “blood pressure” I realized how badly my brain is currently working.

Jenn responded that Tina’s blood pressure is perfect!

Jenn’s final update of the evening was at 8:33 p.m., “fluid intake up, still gets nauseous and tired out after being up. Was able to have a conversation and was smiling today and giving orders.  She drank two glasses of water.”

9:31 p.m. -  Tina not good. She made several trips to the washroom with help and a wheelchair. At supper she ate all of her mac & cheese first good eat since Mon last.

Monday

9:57 a.m. - Jenn was working again and popped in .  Tina was being taken for a shower.

I received a message from Casey, a friend of Tina’s to see how she could help.  She was willing to go and sit at the hospital with Tina but unfortunately is not allowed.  We have been overwhelmed with the number of people who have reached out to help, pray and just offer words of encouragement and comfort.

*****

We are thankful that Tina STEELE has a voice and can STEELE give orders.  We are also happy that she is STEELE our “Baby Princess” and hopefully she isn’t a “bad patient.”  We will give an update later on her bp!!!

In Real Time

Tina was feeling so horrible yesterday.  She knew that she needed help.  She talked to Jenn and found out that she was working at KGH.  (Kingston General Hospital is located about 30 minutes from Tina.  It is a much bigger hospital.)  Tina said that she needed someone to fight for her to get attention.  Jenn accepted the challenge.

She went to the hospital around 1:00 p.m.  Jenn finished her shift at the hospital at 3:00 and went through triage with Tina.  Jenn went home and showered and ate supper.

7:28 p.m. (Ontario time) - Jenn got back to the hospital.  They had done an ECG and a CT Scan.  They got her hooked up on an IV.

7:32 p.m. - they decided to keep her over night.

8:58 p.m. - Jenn updated us with, "so the dr is AMAZING! They have started more Odanzetron.  They did CT and it looks good.  Going to have internal medicine come see her. Blood work is perfect."

Odanzetron is medication used to prevent nausea and vomiting.

10:52 p.m. - "Just saw internal medicine resident. They will be admitting her.  Wil be going to the floor sometime tonight.  I asked about being moved to an isolation room because there are so many coughing and stuff, they did.  So we are in a quiet room.  She is sleeping.  We are awaiting chest and abdominal x-ray.  The internal medicine resident has ordered more anti nausea meds as needed." - Jenn

11:15 p.m. - they took her to x-rays.

11:19 p.m. - Jenn's bed for the night

11:25 p.m. - Carol asked the question if Jenn needed to stay all night.  "Someone needs to, if she starts getting sick she needs help....and there are a bunch of doctors coming in."

Sunday at 12:01 a.m. - "they are admitting for more than a couple day." (this was after Jenn told them how much care Tina needs and how little they have available.)

12:05 a.m. - "he said we will admit and get fluids and start antibiotics incase it's a bit of a bug."

12:17 a.m. - "good night.  She's snoring.  And I'm close behind."

2:00 a.m. - Tina got moved to a room on the floor. 

Tina slept some and Jenn got about 1.5 hours.  Tina's blood pressure is elevated (198/103) but it came down some in the morning.  The neurologist that she has been seeing is on call tomorrow.

6:54 a.m. -  2.5 bags and feeling like dirt.  Blood pressure toooo high.

8:58 a.m. - "Breakfast here but she won't eat.  Been 4 days no food, just fluids." 

*Note - times may not be exact.  I was going from the update times.

Please STEELE continue to pray.  This is our baby sister!  

Surrounding Tina With Prayer

Mom called me this morning in tears.  She said that Tina wasn't feeling well.  She has had a very rough week with two trips to the hospital and still feeling horrible.  Tina asked for everyone to pray.  She asked that people come around her house and offer up their prayers.  

Mom continued to call people and I reached out by messaging people to pray.  I've got a busy day ahead of me with Sarah's 13th birthday but I felt that I really needed to send this post out to ask people to pray and to share some comments.

I won't mention any names but thank you for thinking of us and praying for Tina.  It takes an army.

"Oh Penny, I am so sorry!  You can count me in.  God has already placed you in my heart and I do pray for you and all that you shared with me."

"For sure I will my friend. I have been following your posts and praying for Tina.  ****'s brother has ALS so we feel your pain acutely.  May the peace and presence of Jesus surround you all in the days of this journey."

"Of course I will pray.  Are you doing OK?   I am praying for you too but if there is anything else I can do please let me know.?"

"Will definitely pray for Tina."

"Praying"   "Will be praying"   "Will be praying today"

"Awww I've been praying but will put out to our church group too."

"Absolutely praying for Tina.  Have lifted up up in prayer this week as I've seen the blog posts.  Thank you for keeping us updated. I'll be praying today for Tina and all of you."

"Awww shoot!  Such a sad and trying time for Tina and her loved ones.  Will do and will pass on prayer request for a miraculous healing, peace and His presence fully known."

"I'm on it Penny!"

"Called people, about 20 from our church praying."

"Hi Penny I've been thinking about Tina.  I'm praying for her and send my love.  I will put a post on my wall asking prayer for Tina.  

Calling on all those who believe in the power of prayer to pray for my friend Tina Steele Tina she has ALS and has been to the hospital twice this week very sick but her faith in God is strong let's pray and believe with her that God will bring strength and healing

6Leanne Smith Butcher and 5 others

3 Comments

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"Will certainly be praying for her."

"Will pray for sure.  Thanks for letting us know.  Best to you!"

"Believing with you for healing and peace for Tina.  Our God is able to keep those we commit to Him.  Let's see faith and hope rise up and healing flow."

Thank you for STEELE praying and STEELE standing with us.