Showing posts with label neuromuscular diseases. Show all posts
Showing posts with label neuromuscular diseases. Show all posts

Friday, April 14, 2023

 


We just got back from Madison. It was a great visit. Lizzy saw all her team from UW and wow it was one of our best visits. She has the best people watching over her.

She had 30ccs of blood work. One poke! They are the best! I have been getting her results back since Wed.  She is normal in everything! That is so great to hear, She is 19 and I have made changes on my own and was certainly worried, Phew! That was great to hear.

Lizzy's x-rays since her Spinal fusion have not changed! DR. H did a great job!  Thank goodness Lizzy had fusion while he was still there. 

Lizzy is a strong amazing young lady. I am so proud of her. 

Prayers for all the sick kids and the world! Spread Kindness! 

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

Wednesday, December 23, 2020

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/

Thursday, April 30, 2020

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.

Saturday, February 1, 2020

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

Thursday, February 13, 2014

Anticipation for Spring!! -Living with Spinal Muscular Atrophy






Hey, Spring we are desperately waiting your arrival.
Cabin Fever has ran into my plea "I NEED OUT OF HERE!" .  Lizzy and I have been stuck indoors since the first part of January. Well, with one trip to the dentist a few weeks ago. I mean come on just to the dentist. That doesn't count does it?
 Lizzy doing any home schooling with me is at a bare minimum right now. She has had a new teacher coming to the house since January, finally.  After, Lizzy's morning ritual that consists of her bath, stretching , face massage and treatments she is on her Ipad,on her computer or right behind me every second while in her power chair. She cracks me up. She told me the other day" Nina, you and I think a like, a lot. Which is okay but, why is every one else not like us?"  I was a bit shocked at this coming out of a 10 year old. I told her that we think a like mainly because, I explain to you why I think the way I do and you tell me why you think the way you do. We are around each other every day and that could be why. She said "Is that weird?" Trying to keep a straight face...... I said " I do not think its weird..... Its okay to agree with me and sometimes its okay to disagree with me if you have a good reason to." She said." Well, Nina.. you are right a lot of the time about things." Oh my I love that kid!!!  She is doing so well these days. I just love being around her. Lizzy is my inspiration.
The weather would not be so bad if it was not so darn cold and the FLU is EVERYWHERE!!
We go no where till we look up the CDC  on  http://www.cdc.gov/flu/weekly/index.htm#ISTE
No one comes in our house sick either. Its written on our doors with a big red STOP sign . If you ignore the sign and come in sick you are asked to leave. We have been basically illness free except Lizzy having a sinus infection a month ago.
Paul has been such a "Grump" being shut in. The truth of it is he gets out a few times a week and still a grump! I know he doesn't feel but, enough is enough!!  Some how I need to break his cranky cycle!!  Lizzy and I usually do well being in but... Not this year. I think its getting to me so hard is because not going any where I tend to drift into thoughts of losing my mom and my step mother. Nothing could of ever prepared me for the grief I have encountered this past year. My heart is having a hard time healing. I sit and cry almost every day. The two most important woman in my life since childhood are gone. I have been trying not to dwell on my grief but, dealing with "Mr  Crabby Pants" (My loving husband) just adds to my emotional state. He stays in his room a lot, is on the home pc for hours or he just complains constantly when he is down stairs. He is in a lot pof pain Lizzy and I agree " We need just to get away from him for awhile." We try to ignore him when he is like that but, sometimes its impossible...... UGH..... Spring, we need your presence so we can go on walks again! We do not need negativity in our lives!!
I have not done any craft things this year as I usually do during the winter. Just have not been able to get into them. It seems I just do not get a chance to do anything extra these days. Lizzy keeps me quite busy.

Many prayers to the families in the East Coast. Terrible Winter Storm hit many areas with bad power outages.
Borrowed this quote. It is so true.



"We believe in miracles because, we live with one!"
www.our-sma-angels.com/elizabeth