The saddest day of our life.

 

Elizabeth Huette Obituary

Elizabeth "Lizzy" LeeAnn Huette, 20, of Pontiac, unexpectedly passed away on Monday, November 6, 2023, at American Family Children's Hospital in Madison, Wisconsin due to complications involving her life long, courageous battle, with SMA (Spinal Muscular Atrophy).

You are welcome to join in celebration of her life this Friday, November 10th, from 2:00 to 4:30 with services being held from 4:30 to 5:00, at the United Methodist Church in Pontiac.

Lizzy was born in Pontiac, Illinois, on September 29th, 2003, and she spent her entire 20 years of life here. You might have seen her speeding by in her powerchair, as one of her favorite pastimes was strolling downtown with her family.

Lizzy was enrolled in Pontiac Township High School and would have graduated this coming May, to the thanks of her amazing teacher April Schneeman. She was not just stubborn in personality but also in her approach to life. No one or nothing was going to tell her what she could or could not do. Lizzy inspired many; she was the MDA (Muscular Dystrophy Association) ambassador of Central Illinois for three of her younger years. Diagnosed with SMA, type 1, she was initially given only two years to live. However, that didn't stop her from living two beautiful decades surrounded by loving friends and family. Lizzy was far more than just a survivor of SMA; she was the embodiment of spirit, sarcasm, and love.

Lizzy loved to travel, her favorite destinations including California, Wisconsin, and the Cure SMA conventions. Lizzy always wanted to be outdoors, she was adventurous and curious, wanting to see as much of the world as she could. In her later years, Lizzy enjoyed spending her time online, shopping, talking to her friends, and researching the world around her.

Lizzy's family include her mother Christen Huette, brother Kolton Huette, grandmother Jeanna Huette, grandfather Herbert "Paul" Huette, and great-grandmother Barbara Hurt. As well as her aunts and uncles, Dana (Caleb) Baxter, Dawn (Jeffrey) Cotter, Jessica (Tad) Dunlap, and her many cousins. Lizzy is joined in her journey through the afterlife by her great grandparents: Bobbie J. Hurt, Homer and Rosalind Reed, and Milfred and Janet Noel, and her beloved pets Pepper and Wrigley.

Published by The Pantagraph from Nov. 7 to Nov. 8, 2023.

To plant trees in memory, please visit the Sympathy Store.

Memorial Events
for Elizabeth Huette

NOV

10

Celebration of Life

2:00 p.m. - 4:30 p.m.

United Methodist Church

Pontiac, IL

NOV

10

Service

4:30 p.m. - 5:00 p.m.

United Methodist Church

Pontiac, IL

 

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!" 

                                                                   Happy SUMMER 2022

Pray for Urkraine!

 

The Ukraine president Volodymyr Oleksandrovych Zelenskyy is an heroic leader, History will reward him with his bravery and leadership.

He is trying to keep his people safe and free from an evil dictator and keep them free from Putin's rule!!

Why Ukraine matters to Putin - why he wants Ukraine:

For those who ask: “Why does Ukraine matter? “

This is why Ukraine matters.

It is the second largest country by area in Europe by area and has a population

of over 40 million - more than Poland.

Ukraine ranks:

1st in Europe in proven recoverable reserves of uranium ores;

2nd place in Europe and 10th place in the world in terms of titanium ore reserves;

2nd place in the world in terms of explored reserves of manganese ores (2.3 billion tons, or 12% of the world's reserves);

2nd largest iron ore reserves in the world (30 billion tons);

2nd place in Europe in terms of mercury ore reserves;

3rd place in Europe (13th place in the world) in shale gas reserves (22 trillion cubic meters)

4th in the world by the total value of natural resources;

7th place in the world in coal reserves (33.9 billion tons)

Ukraine is an important agricultural country:

1st in Europe in terms of arable land area;

3rd place in the world by the area of black soil (25% of world's volume);

1st place in the world in exports of sunflower and sunflower oil;

2nd place in the world in barley production and 4th place in barley exports;

3rd largest producer and 4th largest exporter of corn in the world;

4th largest producer of potatoes in the world;

5th largest rye producer in the world;

5th place in the world in bee production (75,000 tons);

8th place in the world in wheat exports;

9th place in the world in the production of chicken eggs;

16th place in the world in cheese exports.

Ukraine can meet the food needs of 600 million people.

Ukraine is an important industrialised country:

1st in Europe in ammonia production;

Europe's 2nd’s and the world’s 4th largest natural gas pipeline system;

3rd largest in Europe and 8th largest in the world in terms of installed capacity of nuclear power plants;

3rd place in Europe and 11th in the world in terms of rail network length (21,700 km);

3rd place in the world (after the U.S. and France) in production of locators and locating equipment;

3rd largest iron exporter in the world

4th largest exporter of turbines for nuclear power plants in the world;

4th world's largest manufacturer of rocket launchers;

4th place in the world in clay exports

4th place in the world in titanium exports

8th place in the world in exports of ores and concentrates;

9th place in the world in exports of defence industry products;

10th largest steel producer in the world (32.4 million tons).

Ukraine matters. That is why its independence is important to the rest of the world.

 Our Beautiful, spunky, intelligent ,sweet and rare young woman named Lizzy. #RareDiseaseDay

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

Sitting up ( with some help!)-'Living with SMA Type 1

Dosing 3 Spinraza - Anxiety with Living with SMA Type1

Just an update on Lizzy and issues we were dealing with.

Just want to step back a bit and discuss the last several months. Lizzy has had issues where just walking out of the room she has to have coughs before I walk out to even go into the other room for a second. She has been using getting coughs as a way to calm herself down. Its gotten so bad where her and I barely leave the house. Its been all summer and most of last summer.

We knew Lizzy had some Anxiety issues but, not to the point of it causing her blood pressure to get high. She would break out in patches several times a day right before the anxiety hits. We tried to get her on something to help that was non addictive. The local NP put her on a med that is for allergies but would calm her down a little. but its effects had warn off.  I tried Calm-EZ all natural for years but its effect did not work anymore either. It has made life hard for her and us. My health is not the best right now because, her and I do not leave the house very much blaming it on allergies for her. NOPE..... its anxiety. I feel so bad she has been having these issues and her quality of living had gotten worse by this not being addressed. We did not know how really bad it was.

The good news is that she is on a very light anxiety med and small dose blood pressure pill. She was given the meds yesterday. Going home from Madison this time was the best in two years. No coughs she was calm. Usually, we would have to take both cough machines with us because I would have to cough her almost the whole trip. Not  yesterday! We had Lizzy back!! She was sucking on  prime stick beef jerky flipping it with her tongue. No Anxiety!! She was laughing at her brother and making jokes again. We were so happy! That is 3 1/2 hour trip and NO COUGHS and barely any suction. It was so great!! Anxiety in kids needs to be addressed! She told us that the reason she wanted coughs all the time is because, she felt her throat close up and thought the cough would help. It breaks my heart she had to suffer this long with this issue. No one should have to go through these issues. I sat and cried my eyes out last night over this had how this has affected her life. Not even the health caregivers were concerned about this issue.

Her Blood work was perfect, her diet was perfect, her Echo was normal and her kidneys normal from scans on her kidneys.  We spent two full days at Madison having injection done , testing and clinic visits. Very long days.... and very stressful not knowing what was going on!
Spinraza is making her so much stronger and causing contractures too!

I just want others to know Anxiety can cause other medical issues if not addressed. Strokes, heart attacks etc.  Do not feel bad if you or your child has it ! Just get diagnosed and treated.Some parents think these anxiety issues are ANS related issues but, Lizzy never has had an "ANS Storm" .Not that others do NOT have "ANS Storms" I am not saying that by no means.
Lizzy has now for two days only had coughs during her treatments and very little suction. Life is good!!

Lizzy's quality of life improved 100% in one day with the new meds. I do believe in miracles because, I live with one!

We are home! _Living with Spinal Muscular Atrophy Type 1

 First Dose:
The trip to Madison was pretty horrific due to a lot of road construction from here to Madison. Kolton, loved the whole trip.

Lizzy had her dosing yesterday at 12;30pm . The staff at the hospital was so great!! They took Lizzy back and was done in less than 45 minutes.
After, a few days Lizzy started to smile with a half smile. This is so Great!  Exciting!! she can hold wider objects in her hand.

Second Dose:
It went as easily as the first dose.
Lizzy has more of a smile  and she is still working on that. Last Saturday her mom was doing her hair and Lizzy rolled over ! That has not happened in years.
Seeing improvements with every dose!

Keep Lizzy in your prayers!
I will update after next injection. 

New Journey- Spinraza Living with Spinal Muscular Atrophy Type 1

Lizzy has for her first Spinraza injection on Tuesday. We are excited, we are worried,  and we are in new a new phase in Lizzy's life. Anticipation, is the worst. for all of us!

Lizzy is a great kid and knows so much about life it scares me. We let her make her own decisions and basically she has since she had her spinal-fusion when she was 9 years old.

We have a terrible ride with the school system here. She can NOT attend with out a nurse ( I am her caregiver) . No one in this area has ever dealt with SMA Type 1 like Lizzy has. The past few years w the school years here have been full of illnesses. Not just one season anymore. We have has three great teachers but, they are limited on the time they can spend with Lizzy. Not even  2 hours a day. Sad, but Thank God Lizzy has picked up things easy from her last few teachers. No Skype, NO robot allowed here. Privacy issues. Really?

Its been pretty low key around here. We do not go many places anymore. Its hard because, Lizzy's brother has visitation 3 days a week and his dad does not like to compromise unless its him that is asking. Lizzy's brother is going to the Madison with us for the injections and to stay at The Ronald McDonald house. They both love staying there. This is the first time we are going since the reconstruction is done.

Wish us luck and send us prayers on our new journey for Lizzy. Any procedure is scary for Lizzy.

Blogging two days in a row! -Living with Spinal Muscular Atrophy Type 1

Look at me... whoo hoo two days in a row!
Its been raining off and on all week. We are in process of fixing out chimney and roof. Well, got the chimney about done but, with the rain I had severe leaking in my ceiling in my bedroom. Woke up to the sound of drip, drip and drip. Sounded like war drums!! . Me, over reacting as usual and thinking the worst, Lizzy and I were up at 4 am had to move into another room fast. I was afraid of her machines. I now have a ceiling to replace since its leaking . Lizzy and I have moved into another bedroom. It will work out but,will take time to get it done. Our room was the last room redone in our house. Now,trying to afford this and the roof and chimney costs oh my.  I am getting ready to move us down stairs in our dining room ( I have french doors) . So, Christen and I tried moving my queen size bed downstairs today. What a show that was. Two motivated determined women with a box springs stuck in curve the stairway. needless to say I did not work. To make it worse I had to pee! ugh....  Much easier with the California king size I had. That was two twin box springs and one huge mattress. So, I think I am going to try to find me another bed.
 Summer has been good but, as usual I have no time. Always, watching kids. Having 4 grand kids in a short time after thinking your kids were done having kids a few years back changes everything. My second daughter on baby#4 needs help a lot. Being a close family as we are I always say yes to helping out. Lizzy throws a major "Hissy Fit" with all the kids around. She loves watching them but if they start bothering her she gets so mad!  Oh..... just love teenagers and their attitudes.  I will be 60 years old this year! I think of my mom and dad being 60 when they were alive not me. I look in the mirror and I keep saying gesh I am looking more like my mom every day... I am heavier than I ever have been too. The internet research blames it on hormones. I blame it on not being active and holding babies for two years!  LOL  My knees are getting bad!
Enough of me.
Lizzy is doing well. She is getting to be so much an adult. I did not think we would make it this far 14 years ago. She has proved them all wrong and has done so well. She refuses to take the Spinraza. The drug that so many kids are using to help. Its cured some babies and made them stronger. She has face book and sees what other have said about side effects. Her anxiety about trying the injections is really bad. She has to rely on others to move her and take care of her so, she is in charge of her body and if she does not want to do something then that is her choice.
Just a short update but, I had a little time.
Pray for our country!
Enjoy the summer! 

Lizzy just entered a whole new world- Living with Spinal Muscular Atrophy

Lizzy has graduated Eighth grade! We are so excited!  She will attend high school in the fall. Hopefully, she will be able to go to the high school a few days a week until Flu season hits. Her mother will be accompanying her to school. Hopefully, she will be able to accessibility communications to help them hear her. We can hear her just fine but, sometimes people have a hard time with hearing her. We pray she gets approved for her new power chair. She has a out grown her current chair. She had a huge growth spurt this past year.
Lizzy is in love with her new cousin born May 25.

Its been a fast  last few years with all the babies we have in the family. Six babies in 2 years and 7 months in our family!
Lizzy has been doing well since she finally got to baseline from the RSV this past winter. We kept her at home. It took a lot of time and patience but, our girl and the fighter she is got her though it.
We worry every day about her insurance coverage. Scares us to death about our president and the way the government is changing.What has happened to truth and justice? The man in the white house is a liar everyday. How can respect someone that lies to the American people?
 On a good note its finally summer. We are enjoying it!

Lizzy is doing great. Few sinus infections here and there but, doing well. Sassy as ever! Her brother is growing so fast!
I am so busy these days so, I do not get to update very much!
We are losing DR.Schroth in about a month. So sad! We dont know what we will do with out her. We have gottem through the last 14 years with her just hope we can get through next 14 years and beyond with out her. She helped save Lizzy's life and many kids with SMA. She fought for these kids and now she is quitting her practice. A new chapter in our life starting Jan. 2018!  Pray we get through it with not many issues!!

Happy Thankgiving to you all!!

www.sma-angels.com/elizabeth 

Summer is finally here/ Living with SMA Type 1

Its finally beautiful out!

So, much has happened this last year. So, many babies in our family and we just had a new one this past week. Ava Jean Grace Huette born to my grandson and his wife Ali.

We have dealt with a lot but these things have made us stronger. We figured out who is important to our lives, 

Lizzy is doing good . We have an upcoming appointment that might help her! 

More to come to come stay tuned 

Losing a parent- Living with Spinal Muscular Atrophy Type 1

My dad passed this morning at age 81. I have been seeing him almost every night for a long time the last few years. I got to know this man so well. I will miss him so much. He was my last parent. I have lost 5 loved ones in 4 years.
Dad you are now at peace. No more pain and you are with the love of your life. I learned a lot about you these past years and I think I helped make some your days better on this earth.
Love you so much!

Update and Rare Disease Day February 29, 2016 / Living with Spinal Muscular Atrophy Type 1

Many times common symptoms hide underlying rare diseases, leading to misdiagnosis and improper treatment at a later stage

Almost half of rare diseases do not have a specific foundation funding or advocating for the disease.

Spreading awareness about rare diseases can help contribute to increased public knowledge, support for clinical trials and scientific research, and development of new diagnostic and treatment procedures.

80% of rare diseases have genetic origins

Rare diseases case 35% of deaths in the first year of life in infants

Those fighting rare diseases also face high cost of healthcare that requires visits to specialists and uncommon procedures that are not always covered by insurance.

95% of rare diseases have NO FDA approved drug treatment
Half of people diagnosed with rare diseases are children. 


Long over-due update -

Sorry, Its been so very long!!
Its been some rough times and been some great times this past year.
We have had some miracles and we have had some disappointments.
We have lost a great friend named Bernie that broke our hearts.
We had three births last year, Lizzy had a new baby brother and a new cousin born 6 days later.
We had a terrible flood in December and my son in law and his best friend almost lost theirlives trying to get my daughter Dawn and her family out of their flooded home after the levy broke on lake they live,
My dad had been very ill and a terrible time at one nursing home and got him into another.

Makes you wonder how we got through it all. The answer... faith and the love of family.

Just wonder sometimes what will happen to our family when I am gone. Who will fight for the the rights we deserve? I take it upon myself to make sure everything is okay.

Dealing with my dad has been the hardest. One day he is thankful for me being around and the next just a ripping on me for being involved. Does he want me there? Does he really mean those things he says yo me? Is he just in pain or does he really mean it. He gets Dementia when he is sick or in pain sometimes. That is so hard to watch.The hardest part is his incontinence. Is just plan sad. Is getting old a blessing? I am his caregiver too when I see him besides Lizzy's Its so hard at times and emotional.
 I want to be strong and able to function when I am his age. How do we ready ourselves for old age?

Lizzy doing well. Turning into a young woman. She has lost some strength but working on ways to help her get that back. Not bad just a few things causing her difficulty. She is too honest, too mouthy and one of my precious gifts. I need to be around to help her as long as I am able.
Just wish I could stop the age clock for all of us and just chill for a few years!! Need to get caught up with just daily things I have missed since so many things have went on this past year.

                                                             Lizzy and her new brother!!

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