A Magical Night at Oz The Musical - Spinal Muscular Atrophy

This was a great night for Elizabeth .

Elizabeth above with Disney star Orlando Brown. He played the Lion. He was excited to meet her. I was impressed with how kind and how he showed so much love towards Elizabeth

We took Elizabeth to the Muscial Oz in Normal,IL on Friday evening. Caitlyn was in the muscial as a munchkin. You could not take pictures during the production so afterwards we got to take pics with all the upcoming stars. Some of the stars were from Disney and American Idol. It was quite an experience for Elizabeth. She was hit with a wave of magical awareness that at times had her breathless at what was going on before her eyes.

Lizzy is pictured here with (left to right) Brenda Castillo,Tierinii Jackson and Tatum Sheers. The Doo-Wop girls.  These girls were great. They thought Elizabeth was beautiful.  They also commented on Dawn and Caitlyn on how beautiful they were too.

Here is Elizabeth and (Left to right) Vince Olmo, Haydee Venessa, Michael Sylvester, and Emily Greenwell. They were the dancers. They also were great to Lizzy . They said they thought Caitlyn needed to be in TV commercial because she had a perfect face for it.

Elizabeth and  "Wicked Witch Brenda"  played by Yes, a guy!! Ryan Knowles. He did very good. Wow.... he gave an excellent performance. Very talented young man. They all were but this guy blew us away. Elizabeth says she did not like him but she would smile and could not take her eyes off of him when we were waiting to get pics. I am sure because he played a scary witch is the reason she did not like him.

Elizabeth and the Wizard of OZ Ryne Sanborn. He was quiet and one of the other actors told us we was in Highschool Muscial. He was sweet.

The scare crow played by Thayne Jasperson and Lizzy. He was so awesome to Lizzy and commented on her Christmas hair bow. He also told Lizzy how beautiful she was. He had a bubbling personality.

Elizabeth and Tin Man played by Nathaniel Flatt. He loved Corbyn.

Elizabeth and "Glinda the Good witch" played by Vonzell Solomon( American Idol 4th season 3rd place ). She was really good actress. She talked to Lizzy also a bit.

Elizabeth and Dorothy played my Aundrea Fimbres . She is a very good actress also. 

The director, writer,choreographer for OZ Todrick Hall. Oh my gosh he was so great to Elizabeth. He asked her how she like the play and all sorts of questions.  He was very good with her. He very much impressed me on how he treated her.

This was quite an experience for Elizabeth. We all thought it was great.

Elizabeth woke up me up with her pulse ox screeching from heart rate reaching 160-190 about 4am. I jumped up thinking it was a fever or she was sick. I woke her up and asked her what was going on. She was dreaming!! Oh my that was scary. Never has that happened before. She was fine after I woke her up.

My kids went together and bought us tickets for this event for our anniversary . I am so happy we we able to go.

Many prayers for all the sick kids and those recovering from surgeries.

Many prayers also for our good friend MJ who just went through a huge surgery.

"We believe in miracles because we live with one"

www.our-sma-angels.com/elizabeth

A day away - Living with Spinal Muscular Atrophy Type 1

Today was a better day . Christen, Elizabeth and I took off for the day. Van packed we headed for the mall and a craft store to begin with. We left around 1pm.
If anyone wants to know where the best deals for Christmas dresses with the best quality is SEARS. I am telling  you I have looked online and no place can beat their prices. I wanted to go look at some of the dresses I have been looking at online.  I have looked all over  online I think the best deals are at Sears. They are 55% off. We were just looking today. Walking around the store I was stunned at the great deals on all their clothes. Great Quality too. So, that is a FYI.
We also went to Michaels also. They had Christmas wooden ornaments 50% off . They are .50-.99 a package. We did get Lizzy some to paint since they were cheap, keeps her busy and not bored. We have to do projects all the time. I know we are on a budget but I did not spend that much and it made her very happy. 
Then, we went to my daughter Dana's house picked up Robby and took him with us. We had to go get Rachael from a choir event in their town. There was Santa and MRS. Clause at the hall where we had to get Rachael. Christen was eyeing the crowd and there was hardly anyone in line. Christen decided Elizabeth would see Santa now. She ran back out to the van and said "Lets get her in there quick " Alrighty, then Elizabeth got to see Santa and Mrs. Clause and it was FREE.  FREE can Not beat that price and they did a picture and sending it to us. Paul paid like $25.00 for pictures for Lizzy at the mall last year and the year before. I wish I would of had my camera but I didn't.  Elizabeth asked Santa for" An American girl doll and socks then she went blank." I guess she did not have time to rehearse her list.   Socks? I know she told us cool socks but she has lots of socks not sure why she insists on socks this year. Her list at home is pretty long. Ranging from dolls to chocolate candy. She got upset on the way home saying "I forgot to tell him this and that....." I said" he knows what  you want Lizzy so no worries sweetie".
So, getting away helped a lot today. It was a good day after we left.

I had some words with Elizabeth's Dad today so my morning started out pretty bad. You know I have taken a lot over the past few years and do not say a whole lot to avoid confrontations but today he over stepped his bounds. So, after our heated debate over something he had no rights to bring up for discussion I told him " He was leaving NOW discussion was ended" .  He left mumbling something I do not care repeat and did not come back all day. So, Paul got a day himself and needed it. I  have decided it was time I demanded repect.
I laid awake all last night just crying over and over thinking about my life. I am not feeling sorry for myself when I am crying for the memories I miss. I miss a lot of our past.  I miss all our girls at home. I miss what Paul and I have lost in our relationship. Just think 35 years of good times as well as the bad.
A good friend reminded me I am the strength that keeps things together in our family. I guess I do.

Christen caught Paul yesterday with swollen eyes several times I guess and when she told the thought just tore me up to know he was at that point. To know he hurts just like I do and shares our worry was  hard for me to realize. He just doesn't not say a lot. That is why he has been tinkering around in his shop for months. He has always been so strong.
He was my support when everyone else was telling me there was nothing that we could do save Elizabeth. He told me I would find a way. He said "We have to save her" He helped me so much with her in the beginning and still at times helps a lot with her as far as keeping her busy. So, needless he has been my rock.  He has just seemed so fragile for awhile now. He is still the love of my life.

Thank you to all that replied to my last update.  I was not even going to post about it and then I did.  My fingers took over. LOL
Thank you for your kind words and for caring!!! 

Many prayers to all the sick kids!!!!!

Keep us in your prayers we need them to keep us strong.

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

Thirty-five years of marriage - Living with SMA

This is a us at our 25th Anniversary party. 
Today is my husband and mine 35th  wedding anniversary. Thirty five years is a long time with one man. We have been through so much together and not so long ago things were looking pretty good for our future at the time of this picture and up until 2003. Then, there was a turning point. I quit my jobs because of an injury to my back . I had worked two jobs. Lizzy was born two weeks before my injury. Then, I did not go back to work because I needed to take care of Lizzy and fight for her.  I will never ever regret my decison. 
Then, Paul was losing his job last year and was laid off most of the month of December and the plant closed down and was sold and he was laid off for good March 5, 2009. He was not hired back because of his union involvement even though his work record was exceptional. The place is getting ready to close here soon we hear again. A Spanish company bought it and they treat employees badly , cut the pay, busted the union etc. We have enough headaches now so maybe it was  good thing he did not get hired back. I just wish he could of found a job soon after his layoff.

Thirty five years ago we had no kids..... we did everything together. Paul was the love of my life. He still is but we get along now like my grandparents did.
I was sixteen years old and married. I remember imagining our lives when we were in our fifties. We are there.  We swore we would be together forever. He rescued me. It does not seem that long ago. Where did all the time go?  Now , he hides out in his shop and I take care of Lizzy and the  house-hold . His health is not so good  these days. I worry about him so much too. Where do we go from here?

Tonight,  I made ribs and my own homemade BBQ sauce for dinner. We can not afford to go out and eat. I am sitting on the home pc and he is on his playing one of Elizabeth's  games right now
 Did I think it would end up this way? Never in a 100 years. If someone told me my life would be like this I would not of believed it.
 I used to be  very arrogant not that long ago . I was very good at everything  I did and that helped me in my jobs.  I did not like that person I was.. but I was secure.  Now, Fat and broke..... Those words hit my heart like a ton of bricks.  I was a "go getter" from the time I young. I also did "beyond the dot thing" "Over achiever at work"  I was called all of the above from my employers.  Now, I worry about if we will have the money to pay the house payment or the electric bills. Does not seem fair does it? I guess they say we make our own destiny. I do not know how I made mine but I  guess I did. I have been crying all day and can not hardly think straight. I did not wake up all upset today. I was in a good mood. I was up early  I asked Paul a question  this morning and he tells me "He is 20 bucks short on the house payment" .  I lost it right there and then. He did not expect this out of me. I figured things out like I always do and we are okay but I did not know things were really this bad. I knew it has been rough but not this bad.  He used to stash money(saved for emergencies) all the time and the" Stash is GONE" and has been for awhile. Taking a deep breath  I know we will get through this.  I know we will.We always do. I know this because I have faith. Faith has gotten me through so much these last 6 years. We believe in miracles because.......
I got to get it together to make it all work.  I have to be there for Elizabeth to make sure she gets what she needs. I have to be there for my family.

Paul is going to trade school here soon and things will be good hopefully in few short months. Lizzy is doing great. We have our home. We have family. I have better friends than I have ever had. That is all that counts.
So, I guess I took the day off to feel sorry for myself and I had no reason to. Wow, what a day wasted.
Thanks for listening.

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

First Snow - Living with Spinal Muscular Atrophy

Its snowing and Elizabeth is just so tickled. She wants to go out side and sled and it just started snowing!! See the blur above that was Pepper pulling Lizzy last year and she wants to do it again!! I have gotten a new camera since this!! My brother and his kind heart got me a new one for Christmas last year.

Lizzy is totally over her last illness and while it did cause her to become much tighter in her joints but with the help of Linda her Myofascial Release Therapist and me working on her she is not so tight. Her back today is straighter also. Thank Goodness. I was worried. She has been pivoting to the one side really bad since her illness while in her power chair. I did stretching every day while she was sick as usual but this time I really noticed how tight she had gotten every where. I need to also get a hold of Tony at Plattners because her TLSO has not fit her right since she has gotten it and she NEEDS new AFOs.

Elizabeth started on some breast milk from a new donor and doing awesome on it. Its very exciting for Lizzy to get newborn donor breast milk.  The new born breast milk contains in the first few days contains colostrum and builds immunities. This stuff is great for Lizzy  Christen met the mom on WED that is donating to Elizabeth.  Another awesome lady!! A former breast milk donor of Elizabeth's set this up for her. We are so excited to have this milk for the winter. She is going to pump for Lizzy as long as she can. We call it "Elizabeth's Miracle blend." made with love.

Elizabeth and I have talked about all sorts of stuff this week. She is so funny and her comment when she doesnt like something or something is not going her way is " nice".   Its too funny.

She is getting all excited about Christmas.

Many prayers for MJ , Jake and Stella as they are not feeling well.
Keep Lizzy in your prayers also!!
"We believe in miracles because we live with one"
www.our-sma-angels.com/elizabeth

"Sense of Deep Love and Caring" Living with Spinal Muscular Atrophy

The "crisp" cold air hit here last night and the "Smell of Snow" stirred my senses.  No snow as of yet here but in the area they did have a few flurries yesterday in surrounding areas. 
The Christmas season warm bubbling inner peace has consumed me. Feels, so great to have that "sense of  deep love and caring" for all your friends and family . These feelings are  so very strong this time of year.  Its the season of miracles. I love this time of year. The warm glowing warmth inside your soul.

Lizzy's ramp is decorated with white lights , garland and red bows waiting patiently for Santa's big entrance. She is so proud it was her idea to do this year.   It will be a wonderful Christmas for Elizabeth.
Comparing last year to this year and seeing how she is cares for so many people, how she remembers so many people and things about them at six is just amazing. She is so wise for her young age.

We have met so many families this year that many have actually looked at Elizabeth as " Hope". For so many babies to be diagnosed and to find "Hope" in that tunnel of fear and heartache is something they need to find to be able to lead a life like we do. Its not a bad life. It is a "Safe Life". We do what we need to do for our own. We also have our inspirations( besides Elizabeth) that keep us fighting for her. We have met so many wonderful people. I have said it before " Never have I ever had friends like I do now". I feel like we are family . We are all a part of each others world.
We have special friends also that are making sure this is a Christmas that Elizabeth remembers. They have touched my heart in ways that leave me breathless to the act of kindness and caring they have shown for her. Thank you from the bottom of my heart. I can not thank you enough.

Elizabeth did not get picked as the IL MDA Goodwill Ambassador but that is okay.  (sigh of relief) We have a VERY busy life( In the Spring& Summer)  any way and even for Elizabeth to be nominated is an honor.
I have never met the new local MDA Goodwill Ambassador or the IL one. They picked boys for this next year.  Its great to actually have a MDA news letter now that gives you that info about the kids and their families. We found out today when we recieved the news letter. We will still help out when needed when we can.


Many prayers for MJ and our friend Jake G and they both are sick.
We have many of you in our prayers. Thank you for those of you in our life.

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

Questions that surprise you - Living with Spinal Muscular Atrophy

"Nina, who is going to take care of me when I am older?" Those words today took me by surprise. Tears flooded my face and I just held her tight. My heart felt like it was going to break. I have tears flooding my face again right now thinking about the moment when Lizzy asked me this today. Wow.... I was not expecting this question from her out of the blue. I told her " I will take care of you as long as I can and then Mommy if I am not around" Then, talking to Christen about this tonight Elizabeth had asked Christen this morning the same thing but added "she wanted to have a brother or sister who would take care of her when we were too old to help her." How can a six year old think about such things? What makes their little minds work like this? Some one will always be in our family to take Elizabeth because we all love her dearly. I will care for her until the day I take my last breath in this world.

Lizzy helped her Dad put up some lights on her ramp. She asked this year if we could do that for her on "her ramp".  So, we asked Brandon to put them up and he did. As you see in the picture above she is overseeing the project to make sure it was done right.

Thanksgiving is over and Christmas season is in full swing. Lizzy begged for snow the other night but only got a few sprinkles on Wed morning. She wants to ride in her sled so bad.
We had a great Thanksgiving with my Dad. We went out to eat with my him and my step mother Roz. He had us put back in a  corner with a huge table and we were alone basically. After, dinner since Kmart was across the street and not busy Lizzy got to run around Kmart having a blast. So, much to be thankful for.

Friday..... let me see uh.... I lost my mind for hours. I had three extra  grand-kids here. I love them  all but........ not all at once. I am still finding things they got into. Today, I am back to earth again. Paul hid out in the basement in his shop while they were here. Chicken.

We are having our family Thanksgiving tomorrow at Dawn's

Elizabeth  has been doing well now since WED and finally over that  bad sinus infection.

Thank you for all that asked about Lizzy doing her illness and added her to your prayers.

Many prayers for our friends Hannah and MJ who are very sick.

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

People in our Lives we are Thankful for - Living with Spinal Muscular Atrophy

Elizabeth is a bit better but still plugging. She is still on every three hour treatments.  Those treatments wee hours in the morning are kicking my hiney. I could not tell you when I have gotten 7 hours straight sleep.  I hate it when my girl is so sick. DR.Schroth put Elizabeth on another antibiotic on Saturday. She says Elizabeth has a bad sinus infection. Elizabeth did insist on sitting in her power chair today for an hour. She did well.

Elizabeth has been doing a lot of school work with her learning videos and is a sponge. She loves her new science Soft ware THINKIN SCIENCE. Very cool program. Teaches kids about animals and all sorts of things. She loves it. She had to call her mom today at Dawn's and tell her all about what she learned. Is that not precious?


The stove we got given to us works like charm. I cleaned it up and switched the oven racks and it works GREAT and looks great. Love it. I am still awed at how we got it so quick.  All we had to do was pick it up about 30 miles away and clean it.  It has more features than my other one did. Its not that old either. I am telling you somebody up there is watching out for us.

Paul did put the toilet back in the bathroom down stairs today since Brandon FINALLY finished the tile on Sunday but some how it was cracked. So, we have to buy a new toilet. Better to buy a new toilet than a new stove. I will take the good we have been having and not complain about the bad.

Paul  is going to take classes here soon for heating and air conditioning. Maybe he can get a job around here. Things might be turning around here before long. He has aged so much and his stress level has been very high. The only person he has patience with is Elizabeth. I am very worried about him.

Good things have been happening to us lately and special things in Lizzy's life too. Believing in miracles as well as blessings help get me through each day.

We have a new donor for Elizabeth for breast milk and we are so very excited. One of her previous donors( an awesome great lady) from last spring asked a friend to help Elizabeth. That itself is a miracle. Keeping her the amount she needs each day is something I always worry about. She does so well on the diet she is on I hate to cut her back on the breast milk.  Now, I will not have to!! That is such a relief!!  She sounds like an awesome lady. Lizzy's angels are working hard lately watching over her.

Thank you for all of you that care about Elizabeth. Elizabeth is such a special child. I will say it again to have her in my life is a gift. You need know her if you don't.  She is an amazing child. She is so wise for her young years. We have several conversations daily about all sorts of topics.

Keep Lizzy as well as the other sick kiddos out there in your prayers.

We have a lot to be thankful for. The people that have come into our lives are so very special to us. I am thankful for all you that are so dear to us. You are amazing people and each one of you are in prayers.


"We believe in miracles because we live with one"

www.our-sma-angels.com/elizabeth