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

Its Really Summer!! Living with Spinal Muscular Atrophy Type 1

Its been awhile since I posted. It has been a very busy last few months. So much has been going on! Lizzy has been healthy!!!She has been growing like crazy!!
School is out!!

Lizzy has had several appointments. One recent appt was for her to get a new chair. She has to have a new power chair. She has grown so tall that her chair is too small. Just down her ramp her head bounces so bad. So, Lizzy had a wheel chair eval and the perfect chair was selected for her. So, hopefully she gets approved for the chair.
We are going to the FSMA Conference in Minnesota and we can not wait. Some fantastic friends are making this possible for us. We have not traveled for a long while besides office visits to Madison. So, this is a much needed break. Praying all goes well here so we are able to relax see our best friends in the whole wide world and let Lizzy have her time to her friends also. Then, we are going to extend our stay and stay with our very good friends.

My stepfather is on HOSPICE and dying. This has caused a lot of questions for Lizzy. I answer honestly. She as a child has never experienced a death of a person she knows so well. We take her to see him. He has COPD and still living at home. My younger sister Mindy has been here with him since April. She has been caring for him and doing something I could not do. He is her Dad but watching your father die in front of your eyes is the worst thing a person could go through. I have been crying almost every day watching this man that was in my life for since I was in the 5th grade. It is hard for me. My mom is in the nursing home and has been staying at the trailer once or twice a week to spend some time with him. Mindy is doing a great job but she left her family to come here. That takes a lot. My heart seems to be breaking watching him die. Then, I had to help plan his and my mom's funerals. The hardest thing I have ever had to do in my life.  Its knocked the wind out of me .

We have been taking Lizzy uptown lately in her chair. Helps with her boredom and keeps her mind stimulated at looking in the stores.  Its her community and she needs to familiar herself with the surroundings. Then, she can tell us where she wants to go. The weather has been fantastic, No humidity and its been in the 80s until last few days and it hit the 90s. yesterday. Much better than last few years weather!

The Friday before Mother's Day I got this huge box in from FED EX. I was like huh? what is this? I opened it and I felt love pour out of the package. I was sent a flower box from some very caring awesome friends. It was the most fantastic present!! This flower box was made for Lizzy . Its something we can do together. Lizzy has a chore now. She has to water the flowers every night.
She is learning responsibility.
Missing our California friends badly right now!! This weather reminds me of California!! Some day we will go back.

So much to tell but I will leave you for now.
"We believe in miracles because we live with one!!"
www.our-sma-angels.com/elizabeth
http://www.aadietinfo.com/guideline-document/

Bucket List Baby Avery loses her Battle with Spinal Muscular Atrophy Type 1

http://www.inquisitr.com/228359/bucket-list-baby-avery-loses-battle-with-sma/?fb_comment_id=fbc_10150712163386483_21795305_10150712499441483#f3a3bbee394f922

My heart hurts for this family. Please add them to your prayer list. Fly High Little Avery Fly free of SMA.