Article on Lizzy - Living with Spinal Muscular Atrophy Type 1

 https://www.pontiacdailyleader.com/story/news/2020/12/22/lizzie-huette-battles-sma-type-and-taking-new-drug/4015772001/

43 days on Home Lockdown/ Just to remember what we lived through /Living with Spinal Muscular Atrophy!

-Today is April 30,2020
We are (at average) at 43 days of social isolation. In the US alone, there are just over 1 million confirmed COVID-19 cases with 58,000+ deaths as of this morning.

- Schools have been out since March 13th in Illinois and will not reopen for the 2019-2020 school year.

- Only “essential” retail stores open are grocery stores, hardware stores, and pharmacies. Amazon delivery windows average 3 - 4 weeks when they used to be a maximum of 2 days. No gyms are open, and it’s almost impossible to find weights, exercise equipment, bikes, etc.

- All extracurricular/volunteer/business meetings and other gatherings are now on virtual meeting platforms i.e.(Zoom, House Party, Go to Meeting, Whats App, Webex, Google Duo). Hang in there, life will continue and eventually, all together, we will get to a new normal!

- There are lines / tape inside the stores on the floors to keep people 6 feet apart.

- Bars and restaurants are open only for takeout, home delivery & drive through.

- Playgrounds and sports fields are closed. Most beaches, parks and cemeteries are closed to the public. No visitors are allowed in hospitals.

- All major and minor league sports competitions have been canceled as well as kids' sports. The NFL draft was done virtually this week. It was special.

-American Idol was done virtually this week.

- All festivals and entertainment events have been banned.

- Weddings, family celebrations, and graduations have been canceled. Funerals limited to 10 people graveside.

- People are doing drive-by parades to celebrate birthdays.

- Young kids can’t understand why they can only see grandparents & other extended family and friends on a screen or thru a window if someone visits in person or on Facetime online.

-Visitors are prohibited at nursing homes and assisted living residences.

- Hugs and kisses are not exchanged.

- Places of worship are closed or online.

- We have to stay away from each other more than six feet.

- There is a shortage of disposable masks and gloves in hospitals.

- People are wearing masks, some places REQUIRE that you wear them to enter! People are even sewing their own cloth masks for sale or donation to medical facilities. Illinois announced that as of May 1st, face coverings are required in public over the age of 2 where social distancing cannot be maintained.

- Toilet paper, hand sanitizer, bleach, antibacterial wipes and anything Lysol or Clorox is in short supply and limited per person.... IF you can even find them! (This goes the same for flour and yeast).

- Stores are closing early to disinfect everything. (24 hour stores are even closing by 6, 8 or 9pm)

- Store check outs, pharmacies and even fast food drive thru windows have added plexiglass between the employee and the customer. Have to reach around or under to pay!

- You can't find isopropyl alcohol easily. .. the supply per person is limited.

- Australia, USA, Canada and Europe have closed their borders.

- Western Australia has been divided into 9 territories & an instant $1,500 fine issued for crossing the border without a valid reason. (Transport workers, Essential services etc)

- No one is traveling for leisure. Airports are empty. Tourism has the worst crisis in history.

- Wi-Fi and cell phone providers have extended their limits to provide connection to the Internet for people to continue to work from home and for students to learn from their teachers.

- Many public pool access, concerts and summer activities will not be allowed/take place.

- We don't know if baseball seasons will start, hockey season will continue/end or any summer camps, etc. will run. Lots of teen/college summer jobs are up in the air.

-Colleges have not made definite decisions about whether to take their classes online, in person, or open at all for the fall.

-K-12 has ended their school year and plans to open for the fall have so many unknowns, social distancing, new guidelines for keeping everyone safe. How will it be scheduled? Can sports and activities continue as they have?

- Society appears to be divided about whether or not we should continue to isolate or open back up and get the economy going. It's an election year and politics are messy and complicating this issue.

Why do I post this?

Next year & then every year after, this status will appear in my Facebook memories feed. And it will be an annual reminder that life is precious & that nothing should be taken for granted. We are where we are with what we have. Let's be grateful.

This text is not mine, but I copied from a friend because I want to remember it, too.

Living with Spinal Muscular Atrophy in a world with Covid-19

Lizzy and Kolton got a new puppy to deal with home-lock down that is in place.
I know I have NEVER been so scared in my life as I am these last few weeks! Covid-19 is killing healthy people! Lizzy and I have not left the house because of the flu every where since after Christmas. She has missed 3 appts for her Spinraza injections.
 It scares me so much with Lizzy let alone my husband has COPD , diabetes and 65 I have made sure we are prepared for not getting out for weeks. .I have frozen leftovers made eggs for dinner and really just making sure we have enough to get through 3 weeks. .
I have tried to keep stocked up on groceries and our needs. I pray for our nation and our world.

I lost my Uncle last week from Colorado from heart issues and my Aunt can not have a funeral till this summer and  she had to cremate him. How sad..... My heart goes out to her and my cousins.

We need to unite as American as humans and spread positive words on social media. Spread love and Hope!
We put hearts on doors to help others believe in Hope and Love!. My grand-daughter Caitlyn is supposed to graduate. No Prom.... Send her prayers and positive energy! Think about the elderly! Some people lost their jobs!  Call them. Reach out by calls or video chats!  People like us that are too much as risk to get groceries call and ask them if they need anything.  We are okay but, others like us may not be.!  Spread HOPE, LOVE and CARING!!

" We believe in miracles because, we live with one!" 

Hello February/ Living with Spinal Muscular Atrophy type 1

I am back to update! whoo hoo! 
We are expecting 3-4 inches of snow in the next few hours. Typical February.

Today, Its history being made for.the vote on acquittal on our president. This past 3 years has been the scariest of my life. I took Political Science in college but,it never prepared me for the past three years. I get physically ill when the president speaks. It started when he was running for president and worse after he won.. Maybe its way he hurts people and tries to ruin their reputations might be the reason. Maybe, the fact he is trying to mess with medicare or Affordable Care Act or just because he has lied over 16,000 times since he has been in office. Maybe, its because he tried to influence another country to help him with the 2020 election. I am afraid it hurt Joe Biden already. Maybe, its because of what he did to so many families over immigration. I don't know. I am very sensitive to people and their emotions. The voters will have their say in November. I am not a person that lives in a box I have always seen everything around me. I do not watch Fox news.I watch most other CBS NBC ABC etc. I am not brain washed easy. My family is divided over Trump. Its rather strange. Enough about this. Just brings the negative in and I try to stay positive. I just worry about my kids, grand kids and planet Earth.

Yep, Trump was just acquitted just now.  Like, we didn't know they would.  Scary, to think what he will do next. These senators will go down in history for their votes.

Lizzy has been sick with runny nose and sore throat. She is doing better. She has been on antibiotics and doing great. When she is sick now with a cold she works on getting the junk out of her trunk. Must be her Spinraza that has helped her. I am glad she is older and still able to talk. Over Christmas she had a strange illness and slept. She had no energy. She bounced back quickly after she recovered.

My diet started and doing much better. My colon getting a work out though those protein shakes. I had to stop drinking them yesterday. Taking a break for a day and then back on them.

We leave for Madison on the 17th. Lizzy's injection will be the 18th. Hope the flu will be better by then. Still wearing masks while we are there.

Hope you all are doing well. Pray, we have a great uneventful trip to Madison and pray hard for our country.

Feels like the longest January ever! / Living with Spinal Muscular Atrophy Type 1

Sorry, about so few updates these day! I will try to be better at this!
Boy, This has been a long month! They say it is because, we have not had much sun this month.

After, our stomach flu illness all is back to normal.

Lizzy is bored so bad! Netflix, Disney Plus, our dish network or all the 1000s of games she has downloaded from Itunes can NOT appease her boredom. We are on lock down to avoid winter viruses. She has her next Spinraza injection in a few weeks. We had to cancel the last one due to her and I had stomach flu.

Lizzy had her IEP this week and did really well. They even talked about her designing t-shirts! isnt that cool?  Only problem Lizzy needs updated Ipad and the school is not able to purchase her a new one. An old one but she has an old one. She just is not able to use some of the apps because her Ipad is too old. Need to figure that one out.

My diet has to start Monday! I don't get to walk anymore and the weight keeps piling. I feel like a wobbling penguin! I can not help I love food!  I have never been as heavy as I am now. I went back on my exercise bike yesterday. Now, to continue!! I need strength!

Believe in miracles!
Vote in the primaries!! Save our country!

www.our-sma-angels.com/elizabeth