Loss of a True Hero,Surgery Date Changed and Lizzy is Turning Nine! - Living with Spinal Muscular Atrophy

We lost a dear friend, hero, icon, inspiration, caring loving woman in the SMA world yesterday. Amy Marquez(video done on her) http://www.ric.org/aboutus/stories/amy-marquez/. She had SMA  like Lizzy and lived to be 41 years old. It broke my heart when I heard the news . She is leaving behind her husband and two daughters. She was a "no nonsense "kind of person and actually called me on the phone one evening after I had a bad confrontation with a president from a SMA support group. Amy was concerned on how badly I was treated and apologized to me even though it had nothing to do with her. She was upset   to what had encountered and said "she would make sure nothing like that would happens again. " That was some years back. She always invited us to cookouts at her home in IL and for reason or another we were never able to attend. Saw her  at the FSMA conferences every time we went except last year. There will be a void in the SMA world now where this woman fought for the rights of adults and kids with SMA My prayers and tears to her family.

Lizzy's surgery date was set to October 29th and was changed yesterday to November 12th. It was hard enough agreeing  for her to get the surgery but, now postponing it to a later date causes us great concern. Its like a week from Thanksgiving and what happens at holiday time? The Flu season begins... Not sure when it is going to happen NOW because we are trying to get an earlier date. Lizzy on the other hand was thrilled that she might be able to go trick or treating. LOL

Lizzy new power chair should be here any day. I wish it was already here. She could be up running around in her chair!!
No word on Paul for his appeal for Social Security as it yet. Paul is worse now than before. He is dizzy a lot and fatigue captures him every day. His sugar levels are better but some days are worse than others. We are back close again like we used to be. I think because of all we have been through the last few months has brought us back to the way we were. We are relying on my small income to cover us. Its been  a struggle but we have gotten through it. We have managed this far. I would not know what it just to go shopping at a mall!! I feel a chuckle coming on. SHOPPING??  .... something I have learn to live with out. This coming from a woman that used to shop every paycheck for clothes about 10 years ago. The money I blew... gives me chills.  I would feel very guilty to spend money on myself for anything that was not a necessity. I have programmed myself to watch every cent and do not pay for things we do not need.  Food and bills are my main concern. I do not use gas because I don't go any where. In the "whoppty van"( My mom's van that I have) there is still a half tank and that has been there since July!!  I do not go many places except for Lizzy. LOL It doesn't upset me. I always find things to do and Lizzy keeps me very busy. I am hoping to sell some bows I make to help with Lizzy's hospital stay but I have not been able to do that much since she has been sick ( getting better) and so much going on. I plan on working on quite a few this week. My carpal tunnel is better again with the stretching I do in my hands almost every day. Now,  since some of the drama has died down I can focus on getting some bows done at to the beauty shop that sells them for me.

I apologize if you have not heard from me. Its been a very ummm.. "eventful" summer and dealing with emotions this year kind of took me over. I had to deal with things I should of not had to deal with  but.. all is calm now.
Keep Lizzy in your prayers as she is getting over a illness and still has a stuffy nose.


Lizzy's birthday is Sept 29. She will be nine years old!!! I can not believe it!! She is having a zebra print cake with hot pink on her birthday for her party.

Thanks for caring and checking up on us!!
"We believe in miracles because we live with one!" 

Summer Is Coming to an End- Living with Spinal Muscular Atrophy

We have already lost 100 minutes of daylight.That means autumn is pushing its way in. Wow, Lizzy and I have not been outside a whole lot this year because it was so hot. Now. a break in the weather and summer has almost past us by.
What a summer it has been. Many things have happened. Lizzy had a wheel chair eval in May. My stepfather passed away in June, We sold the trailer for my mom. My sister Mindy was here in April and left the end of June to go back Kentucky. We traveled to Minnesota  for the FSMA conference and got to see many friends and meet new ones. We stayed with friends for a few days while there and had a great time . Lizzy got to meet the Viking Cheerleaders and Miss Minnesota.

Then, we got home and things did not seem right with Lizzy's Dad. He has not always been there for her and Christen  He had very little contact with her for two months. Its a very sad situation. Apparently, Christen and Lizzy's Dad had broke up and he had found a new life. I will not go into details but it was a bad time for Lizzy. Her dad would not answer her calls or see her for over two months. Watching Lizzy hurt was hard. I tried everything I could to keep her occupied and we had just moved on and  Christen was seeing someone. Lizzy's dad found out Christen was seeing some one else and "Poof" He was back in her life AGAIN. UGH... He will never understand or take responsibility for the huge hole in her heart that will never be patched. He’ll never understand the anger and tears that Lizzy experienced as she tried to comprehend a father that would vanish without sensible explanation. She no longer trusts him but she loves him. Its quite different now since he is back in their lives. Christen fell  hook line and sinker for him after everything that has happened. I am having issues with the situation. With out going into details my daughter has broken my heart. I do want her happy and to step up and to the plate and help out with Lizzy . I  have quit fighting with her and have shut-down. She wants a life with him and there is nothing I can do about it. He is manipulating her to make bad decisions and I am powerless. So, I am focusing totally on Lizzy and  blocking all the negativity out. I have spouts of crying because I am so hurt by Christen but I will get through this with God's intervention. I am seeking support groups and maybe even counseling to get through this.  I can do this alone. I have basically always have  took care of Lizzy myself.  I just need to understand that.  I have been praying so hard that Christen comes to her senses and makes the right decisions. Please, say a prayer for Christen that she makes the right decisions for her daughter and treats me with respect.

We went to UW and saw Lizzy's docs up there for muscle clinic. Her blood tests was great. We had Xrays done..... a great visit and... Lizzy has to have spinal fusion soon. UGH.... We knew it was getting close but never did we think it would happen this soon. Lizzy has had huge growth spurts and  her rib deformity has gotten worse. Please keep Lizzy in your prayers. Its an 8 hour surgery and its an 8 day hospital stay. Its being done in October. Hopefully, the end of the month. We did have lunch with the Pooles while in Madison and it was so great seeing them!! Love the Pooles!! Saw the Turnbulls at clinic. Love them too! Stella. so very sweet.

Good news finally after that last paragraph... Lizzy's new power chair has been approved!

Please, say some prayers for Brianna and for Jadon and hope the both get better soon. Please, keep Lizzy in your prayers too for a successful spinal fusion and good health.

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

August is SMA Awareness Month

Families !! Please!! if you have a child with SMA please visit your local fire dept and ambulance services. You need to introduce them to your child you and write daily resp protocol for healthy times and acute illness times. Let them know who you are and all about how your care for your child  with SMA . You need all this in place in case of an emergency situation and need their services. Make a scan disc of all vital info and carry it with you at all times and update it. Get acquainted with you community . No matter how old your child is 6months to adult you NEED to do this.!! You can NOT always do this at home. I also suggest having supplemental O2 at home. Please listen to me. This info can save your child's life. You can NOT always "just do it at home". Invite them to your home if your can not get out to meet with them


Please feel free to leave comments!!

Hot, Birthdays and Waiting - Living with Spinal Muscular Atrophy

It has been a very hot and dry month. Drought has hit our area and the crops are doing badly. Our tap water tastes so bad we have been buying gallons of drinking water. Our tap water tastes like "ewww mold".  Lizzy has always gotten bottled water. Say, some prayers for us to get some rain SOON. If I knew how to do a rain dance I would.  (Picture that one! LOL) We need rain so badly. My tomatoes are doing okay just not as well as they should  be. They are on my patio. We also have a family garden at Dawn and Jeff's too but it has not done so well either. You need rain to make things grow!!

Lizzy has not been outside too much this past month because of the very hot weather. Since last week I have been doing school work with to keep her from getting bored. Its almost August and school will be starting soon. She is loving she is so smart and remembers what she has learned and more. 

Tonight.. I caught her on a website with a dancing Hilary Clinton in PJS!! She was making Hilary dance!! She has no idea who Hilary is and was just having fun!! I laughed to hard!!  One time I caught her playing poker online a few years back.

I am glad Lizzy was able to make some memories by going to the FSMA conference this year and to stay in Minnesota with our great friends Drew and his family. At least she had those special things this summer to remember and seeing so much family( that we do not see too often) because of my stepfather's passing.

We had a family birthday party at Jeff and Dawn's on Saturday for Mom , Caitlyn and I.

 It was nice party  but my mom was not feeling well. I am sure it was due to the heat. I think she is also missing my sister Mindy spending so much time with her. Mom is wanting to move to a nursing home in Kentucky to be close to Mindy. Mindy was here taking care of her Dad for 2 months before he passed and her focus was her Dad and Mom spending time together. So, us seeing her a few times a week is a big change from every day. I think Mom is depressed lately because of losing her husband and missing the time she had with him. She was doing so well when Mindy was home. God's plan for me was is to take care for Lizzy and help as many families that ask for my help. I call her and make sure she gets what she needs but it seems it is not enough. I wish I could do more. So, I have I do not had a lot of time to spend with mom while its been so hot. Hopefully, its cools off soon so Lizzy and I can take the old van ( My moms) out to see her more often. It has no air conditioning so that is also a reason Lizzy and I have not gone out there in the van. We all tried to make mom have a good day on Saturday which was her birthday but... She wanted to go back to the nursing home early. Its okay .Christen took her shopping on Monday and mom was in Wal-mart for 3 hours having a great time. She takes off in that motorized wheel chair and has a great time.

Good news is that we are getting the shocks fixed on the van before we go to Madison next month! Yeah!!

We are WAITING to hear about Lizzy's new power chair. She will be getting( if its is approved) a M300 Permobil power chair. She will be so much more independent and be able to control her chair up,down  and it will lay back!! Her Koala power chair was great from age 3 until this past year. Her head bobbles back and forth because its extended so far because she is 4ft 3 inches. When she hits a bump she slows way down and still her head bobbles!!  She needs her new one sooooo badly!!Going down the ramp its really bad. I have to hold her head and pray she does not stop too quick and flip me like she did a few years ago on one of our visits to CA to see DR.Wang. I miss those days in CA but I don't miss Lizzy flipping me!! I miss the great weather and the people we would see.

Say, a few prayers for a little guy named Ben that just got trached. He is one of Lizzy's friends. 

 IMPORTANT diet info for SMA -  http://www.aadietinfo.com/

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

www.our-sma-angels.com/elizabeth

Here is a pic of our Lizzy this week! She will be 8 years old in Sept!! 

Loving life and Enjoying Summer - Living with Spinal Atrophy Type 1

Finally, things are getting back to normal around here. Well, as normal as they can be!
Its amazing how time flies during the summer. In about a month Lizzy will be back in school.
We had a great trip to Minnesota. Spending time with good friends and family is what summer is all about.
We are not doing everything we wanted to do this summer due to circumstances beyond our control.
We are trying to get our house back organized again. When you have a lot going on you do not realized how things get behind until one day you take a look and then you think how did I let this go?
Mom seems to be doing well these days. Doing well adjusting to my step father's passing. Hopefully, we will have the trailer sold soon. We have done a lot of cleaning and fixing to the trailer so I hope it sells quick to people that will take care of it. Its a steal for the price of $6,499.00. The handicapped bathtub was $7,000 alone. I just want to get it sold so one less thing to worry about. 
Our van needs work again. It needs new shocks etc. Its always something. Its getting close to 200,000 miles. So, that cut down on some trips we wanted to take this summer.
Paul is still out of work but we are getting by. Its surprising how quick I can decide what we need and what we can live with out. Lizzy never goes with out anything she needs. I always find a way to get her what she needs.
Lizzy is too funny. She does not miss a thing. When I say "OH NO" she always asks "Is it going to be okay?" From the weather to her health. She is very opinionated and just a great kid. Her strength keeps me going. She inspires me. I love her love of life. She still says " I love myself". She is always showing me something else she figured out to do. Her conversations on the phone cracks me up.

Here she is talking and sucking on bacon. No, I do not let her eat bacon often! LOL Her shirt says "That is how I roll" She has so much personality and the shirt she has on is really her attitude!!

It has been hard the last few years but with faith, love and help from friends we seem to get through it. We will get through with God's guidance. 

I would not know what it is like just to blow money!! I am thankful for what we have. That is what life is all about family and friends. Not,  what we have... its who we are and the people we have become. 

I go on Pinterest and dream that is how I get through!! LOL 

I know it seems I have lost some of my sense humor this past year but its still there just put on hold. I am not sure why I just seem more serious these days. 

My mom and Caitlyn will have a party on Saturday next week at Dawn and Jeff's . It will be good to get mom out. I hope its not hot. I know summer is for hot weather but I can live with out 90 and 100 degree weather!!! 

Hope you are having a great summer! We are trying to have a great one. Just take each day as it comes. Living life is what it is all about!! 

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

www.our-sma-angels.com/elizabeth 

Moving on - Living with Spinal Muscular Atrophy

My sister Mindy went back home on Saturday with her kids Ali and Adam. Mindy was here for a few months taking care of her Dad for his last days on Hospice. That was a great thing she did for him. It was her Dad and mom was not able to take care of him anymore. Mom has been in the nursing home for a over a year now. Mom is doing very well. Mindy would pick her up to stay at the trailer every other day.  She spoiled her. The last week before my step father passed mom stayed the whole week at the trailer because the flu was going around the nursing home. All my siblings made it home to see my stepfather before he passed.
My girls and I cleaned the trailer after Mindy left with the help from Ruby and Terry( Aunt and Uncle) Saturday night. Terry fixed some things while we all cleaned. Then, Jess and Christen went over there yesterday shampooed carpets and cleaned some more. Tomorrow,  Dana is going to paint the bathroom, back hallway and kitchen. I will go over again tonight and do piddly things and make sure it looks good. We think we have sold the trailer already. I mean $ 6,499.00 for a home with low utilities is great deal these days. Its not a bad home . All appliances stay. Stove, fridge and washer dryer.  Its a clean well maintained trailer court. The money from the sale of trailer goes on my step father's funeral cost. Sad, but it will help with those expenses.
We went to the FSMA conference in Minnesota and went to a friends house for three days after. We were gone a week. Caitlyn went with us. It was great to see so many families and talk to newly diagnosed families. Mary Bodzo and I tried with few other moms to explain what we do with diet with the nutritionists that deal with a lot of SMA. Mary Bodzo is so passionate about the AA diet and such a wonderful woman!!   I do not think they listened to us but....breast milk is on list for fats that kids with SMA that work well!! So.. maybe I did not get through to them at the conference but..helping families with diets and introducing breast milk had made a big impact with type 1s. Love seeing our great friends and meeting new ones.

Then we stayed with some great friends and had a fantastic time. We stayed with The Draz Family and Nana  Barb. We did all kinds of things and had a great time. Lizzy wants to move to Minnesota!! 

We made some great memories last week, got to see some great friends and spend quality time together.  I actually got to explain why I do what I do for Lizzy several times to many newly diagnosed. Christen learned how to adapt a toy. Lizzy got to see her friends and have a fantastic time. Caitlyn got to experience some wondeful things.  We were around some amazing people at the conference. Stayed with a great family friends after wards and did some really fun things. Then, we came home had to say our good byes to my sister and family. First time ,in two years we have been able to do things with friends. It was a much needed vacation after so much we have gone through the past few year.
A wonderful lady got us a handicapped van to rent when we thought our trip was not going to happen. We had caring wonderful friends help us with the whole trip. "Never under estimate the power of  friendship!"
I will never forget how we were able to do this for Lizzy . She had the best time ever. 
Thank you my friends for being in our lives!! 


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

Trying to understand and spending time with friends - Living with Spinal Muscular Atrophy

Its been a very emotional last few months. Watching my stepfather die right before my eyes was about the worst thing that has ever happened to me. I was the one that found him after he passed. My emotions have betrayed me. I am not sure why. I usually can control my emotions but I have been a emotional roller coaster for over a week.

He entered my life  the first time when I was in the second grade. He was my moms date. He dropped out of sight for a few years and then mom and him married when I was in the 5th grade . I am going to be 54yrs old next month. That is a long time to have someone in your life.

I got all my siblings home to see him before he passed away. He did want to see all of us before he died. It was one of his last requests.

So, as I write this update I have a shed a few tears thinking about not hearing his crazy laugh or hearing one of his stories any more.

The good news is we are going to Minnesota on Wed for the FSMA conference. Its just Christen, Lizzy and me. Caitlyn wants to go badly but I am not sure if she can go. We shall see. Packing lunches for the trip and taking a lot of food from home . Spending time with friends is what we are so looking forward to!! Lizzy is so excited she can barely sleep!!!

Please add us to your prayers to have a safe trip there and home!

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

Losing some one- Living with Spinal Muscular Atrophy

My stepfather passed way this past weekend. I was with him until his last dying breath.
I have never experienced HOSPICE ever. I have to say watching a person you have known get weaker week after week took a toll on all us. I was the one that found him and had to tell my mom. She had been staying at their home since last week. I am glad we had him do his own funeral arrangements.
I do not think I will ever choose HOSPICE route for me or any of our family. Its was too hard watching him suffer even though he was medicated. Something,  I will never forget.


PONTIAC — Milford Noel, 78, of Pontiac, died on Sunday (June 10, 2012) at 12:55 a.m. at his residence.

His funeral will be on Tuesday at 2 p.m. at  Calvert & Martin Funeral Home in Pontiac, with the Rev. Stephanie Soon, the OSF Hospice chaplin, officiating. Burial will be in Memorial Park Cemetery, Pontiac. Visitation will be from 12:30 p.m. until the hour of the service Tuesday at the funeral home.

Memorials in Milford’s name may be left to OSF Hospice or Fighting for Lizzy c/o First Financial Bank in Pontiac.

Milford was born Jan. 20, 1934, in Cass County, a son of McKinley and Letta Lowe Noel. He married Janet McCoy Reed on Oct. 7, 1968, in Pontiac.

He is survived by his wife, Janet Noel, Pontiac; five children, Milinda “Mindy” (Kevin) Noel Flick, Dry Ridge, Ky.; Timothy Reed, Lomax; Rory (Carlene) Reed, Kuwait; Jeanna (Paul) Reed Huette, Pontiac; and Rita (Jim) Reed Hoch, Safety Harbor, Fla.; thirteen grandchildren; ten great-grandchildren; three brothers, Harlan Noel, Chandlerville; and Terry Noel and Jerry Noel, both of Pontiac; and four sisters, Sylvia Cox, Virginia; Esther Reed, Springfield; Mildred Painter, Havana; and Betty Waterfield, Chandlerville.

He was preceded in death by one son, Wayne Noel in 1986; and four brothers.

Mr. Noel graduated from high school in Ashland. He served our country in the U.S. Navy from 1953 until 1963 during the Korean War, serving on the USS Halsey Powell Destroyer, the USS Francis Marion Destroyer and the USS Klondike Destroyer. He had worked at the Pontiac Chair Factory and Interlake. He worked for the state of Illinois as a prison guard at Pontiac Correctional Center for 26 years, retiring in 1989.

He was a member of the First United Methodist Church in Pontiac and a member of the Former Moose Lodge in Pontiac. Milford never met a stranger. He enjoyed gardening and was an avid St. Louis Cardinals fan, Milford’s family was his greatest love.

This obituary may be viewed and private condolences left at www.calvertmartinmemorial.com