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!" 

Things will get better- Living with SMA

Lizzy has had the best summer of her life I think. She has not been far from home but she has been out almost every day enjoying the weather. We had a few hot days the week of my birthday but we still walked at night after it cooled down a bit. I believe in getting out-side as much as possible. Fall/winter will be here soon enough and we will be in our "Winter bubble" again.

Lizzy has been through a lot this year.  Her dad totally disappeared from her life in January this year and only called to harass or threaten Christen. Lizzy has adjusted well. Her anxiety levels have been so much better until she heard she might have to have visitation with her dad. For a week now she has been extremely upset. Lizzy is worried because of her dad's anger issues. We assured her one of us will be there with her but she just doesn't want to see him . I think God will get it all figured out for us as I have been saying huge prayers. I need to write a letter to the court but I am having a hard time focusing this past week. I have a break right now because I have Lizzy doing some school work online so I thought I needed to update. She usually will not do that. Christen has gotten a lawyer so we have Elizabeth's best interests seen to. I just pray that this next court date goes smoothly.

We have an office visit with muscle clinic and DR.Schroth the end of August.

This has been the roughest two years Paul and I  have ever had. Financially, its been impossible.My gosh I believe that we got through it with the grace of God. I can not even tell anyone how bad it truly has been. Like,I told a friend of mine 'They say God does not give you more than you can handle" but truth is that I feel I can not handle the stress of worrying constantly about everybody . I just feel like my brain is going to explode. Not complaining or whining just speaking facts. We will get through this like everything else we have encountered. My faith is strong and I was a very strong person and will be again and Lizzy is doing awesome. She is an amazing child and so glad she is in my life.

Lizzy is doing great physically !! She gaining weight and thriving. her local doctor  DR. Murphy told us that "No one can do the  great job we do with Lizzy. he  said  The care for SMA is still unknown in many parts of the country." We know her and her needs so well!!
Keep us in your prayers !!

Many blessings to all of you!!
"We believe in miracles because we live with one!!"
www.our-sma-angels.com/elizabeth

Help with Lizzy's van fund and medical fund

Direct Link to Christen's Party to order online:  (All orders will be processed simultaneously at 
the close of her party.)
  
http://www.myinitials-inc.com/shop/catalog.aspx?eventId=E91006&from=DIRECTLINK

LEARN MORE ABOUT LIZZY'S STORY AT: www.our-sma-angels.com/elizabeth

PLEASE DO NOT MISS THIS INCREDIBLE OPPORTUNITY TO HELP!!  :)

Shawnna Wendte

Initials, inc. - Independent Creative Partner

Phone - 309.224.9970

 

Winter Bubble, Sinus Infection and Flying to a Germ Free Island with Pixie Dust

Oh my goodness here it is  almost the middle of February and Lizzy has NOT left  the house since the first part of January. The CDC map says the flu is widespread STILL. Lizzy's teacher had strept last week and today thinks she has come down with stomach flu. UGH... So, glad we are NOT in public school. GERMS!! Lizzy said "We all need a Germ Free Island and fly there on Pixie Dust" I laughed. She is too funny. The imagination of kids. Love it!!

I ventured out last week and Paul and I did our taxes.  I went to a birthday party for Calib and Rachael yesterday. I felt like I had escaped! Lizzy stayed home with her mom since they do not have a ramp for her chair. She is in her chair every day and she feels she needs to take it with her every where. Love It!

Lizzy woke up about 5am needing suction today. Plugging, secretions galore, bloody nose and drainage. Yup, the dreaded SINUS INFECTION. UGH. Got her on antibiotic right away. She seems to be doing okay now besides the secretions and extra coughs. She is impatiently waiting for her Web-kinz Valentine Party that starts today at 4PM. Every 10 mins "Nina what time is it? " She is on treatments every 4 hours right now but if she needs to up them I will. I just hope she does not get any worse.

Lizzy's great grandma Hoffner passed away a week ago . Carolyn was a wonderful lady. She loved Lizzy and until she was not feeling well always made sure she checked on Lizzy. She helped Lizzy with a small benefit for our trips to California and Madison years back with the help from her friends. She had not been in touch much the past few years but, would send  Christen  or me a private message on facebook checking on Lizzy. She is the only family member on Lizzy's Dad's side that seemed to keep contact with us. Carolyn had went to holiday gatherings with our side several times. Very pleasant positive lady.  She was very honest in her opinions and I very much like that in people . She will be missed in our family.

Lizzy's mom Christen also had more things happen her this week. A good friend went in and got a cat scan and complications happened and she died at age 34.

Lizzy did the most amazing thing last Sunday during the Super bowl last week end she feed herself!!  The video above!!  We  were all STUNNED!! Wow! That girl never stops shocking us!!

Praying for a great year, Spring to hurry up getting here, all of our sick friends and Lizzy.
Please Keep Lizzy in your prayers!!
Please also forward her donation page to friends and family for a new van for Lizzy. She needs one really bad!!!
Changes are happening all around us.
"We believe in miracles because we live with one!"

www.our-sma-angels.com/elizabeth 

Living with Spinal Muscular Atrophy - "Life is good!"

Life is good. Every just think to yourself, " life is good?"Things are better? Then, take a big "sigh" and say "Oh yeah" this is what its all about.

Lizzy got her new Bipap/Vent. The Trilogy. She loves it!!! We switched to a wonderful respiratory care company out of Indiana . Mobile Medical Maintenance. They have RTs in Peoria. DR. Schroth hooked us up . No more dealing with denials from Apria !! Thank you DR.Schroth!!! Apria the company in general has been the biggest pain  in my hiney since we have started getting respiratory equipment for Elizabeth .Yeeeee Haw..... As, I said, Life is Good. They are also trying to get Lizzy a new suction machine and a few other things.
Elizabeth is actually wearing her hand splints , knee immobilizers every day now. She has been back in her stander also. Life is good.

We are searching for a new donor for breast milk for Elizabeth. Her current frequent donor is pregnant. So, happy for Dina and her family but going to miss her . She gave Lizzy her most precious gift  that only God can make.  Thank you Dina so much for helping Elizabeth.

Elizabeth is on her computer most of the time and has been for over a year. She finds so many games online she can play. She uses an online key board for the up /down buttons and uses it to type in where she wants to go. Its great to see her able to go any where she wants on the internet. (Yes, she is monitored). It makes her world so much better. Life is good

My handy husband finally replaced the down stairs light fixtures. Some that have been gathering dust since 2004. I bought some of them  myself when I was getting ready to redo my house. Things have not been the same around here since 2004 The carpet in the living-room was finally replaced . It has been in the dining room  rolled up  in a corner since before Christmas last year.
Life is good.


I got all my wood work washed ,my window seals clean and my curtains washed while every one was at the parade yesterday. Life is good.

We have been cooking up a storm around here. Christen has learned to make pie crust. She made a pecan pie and pumpkin pie last night and brownies tonight.  I am totally allergic. I break out in fat every where!!I have been good.  I am getting ready to make hair bows again for the holidays and for a few fundraisers. Its been hard with all we have to do all summer. We are so busy still but no big trips for awhile.

Lizzy fundraiser is October 23. We have a great committee and I think it will be a huge success!!

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

www.our-sma-angels.com/elizabeth