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.
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| 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.
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