Celebration of Life for an Inspiring Woman- Living with Spinal Muscular Atrophy

A Celebration of Life for a woman who really influenced my life was today Oct. 31. My stepmother Rosalind Reed lost her life to Cancer on October 25,2013. She was just 70 years young. I do not like calling her my 'stepmother" She was more like a mother to me. She helped me so much figuring out difficult situations my whole adult life.  I feel like I lost one of my best friends. Before, Lizzy was diagnosed we did so much together for so many years. We went to auctions when I was a kid. We had fabulous holiday gatherings with her and my dad until her passing. She took my us with her everywhere with her for many years. Horse shows, craft shows and so many different places. She just really enjoyed life!! She was very much loved by all that met her.
Please, say a few prayers for our family and mainly my dad to get through the days ahead with out her.
Her illness and diagnosis was so quick. I have cried for over three weeks trying to be able to accept that is was her time soon. I think it was one hardest things I ever had to handle. Part of my heart died with her I think. She was a wonderful teacher.mentor and a great friend. Its so very sad.  I just thank God for having her in my life.
She thought I was not happy because I have been home all the time taking care of Lizzy the past 10 years. In truth ,I told her" this is what God had planned for my life."  I accept it and it okay. I am fine.  The people I have met in The SMA world are some of the kindest sweetest people that I have ever met. God picked me to help take care of Lizzy and now my husband too. I am very good at what I do  I am not unhappy with my life at all.
Roz will not be physically in this world  with us but, I know she will be watching over me and my family. We will be together some day again. I know we will. Thank you Roz for being in my life. I will cherish the memories forever.

So what is the Plan? Living with Spinal Muscular Atrophy Type 1

Its been a very unusual last few weeks.
Lizzy was 10 on Sept.29 and had a great birthday party with her cousin Robby at my daughter Dana's house on Sept 28,2013. The date was my sister's birthday whom lives in Florida. Lizzy had a great party . She wanted all kinds of candy and that is what she got!! Thank you all that sent her presents!!

 On Tuesday evening a very special woman in my life had an accident in the bathroom at her home and fell. Next thing ,we knew she is on her way to the ER in Bloomington,IL On, Wed we get the news that she has melanoma all through her body and some in her brain. It was a day I thought my heart would break. My stepmother has been one of my guiding forces to be the person,  I am today. She kept me strong when I thought I could not go on and always helped me figure things out. My childhood was not always easy because my mom was sick a lot. I needed a strong women in my life. My Aunt Ginny was one and the other was my stepmother Rosalind Reed. This woman was always there for me through the rough times and the good. She was at all the kids/grandkids parties and always was a good grandma. The cancer doctor came in and told us "she may have a few months". Then, she had an MRI results where back on Thursday and the doctor said " Just a matter of days" Can you imagine going into the hospital for a fall and find out your are going to die in a matter of days? She thought she would have about 10 more years at least. She told me "I was her favorite." I just can not grasp a hold of this..... what is my life going to be like with out her? She is the matriarch of our family. I am having a hard time with this. She is home now on Hospice. She is such a strong lady. Now, it will have to be  just me now being the guiding force for our family. Am I ready to do this?
My nephew told the nurse" I do not believe in God.... he is taking my grandma away" The nurse turns to him and says" God always has a plan. There is Good with the Bad and just maybe, with out your grandma you will grow up and be responsible like you should be at age 20." Mighty powerful words but true... Roz always bailed him out of trouble and spoiled him rotten. He was her "Baby Boy". I think my nephew just better start believing quick in God. He might have a rough road a head if he doesn't.
Tears have been dripping off my face for three days and I can not seem to pull myself together because, my heart hurts so much.
Another bitter sweet thing happened on Thursday. Lizzy's dad signed all his rights over. How could anyone give up on a child like he did? Pure selfishness. He has not been there for or has he provided support for her. He was a "Show daddy" only there on birthdays and Christmas. He did buy her gifts for those times but he did not for the 10th birthday. I hurt for Lizzy but... I feel we can quit worrying. he can not cause us any more pain or drama. God has a plan for us and I would like to know what it is but ,I guess I will wait until future to see what good things are instore for us.
I will miss my stepmother so much and I pray my dad will be okay with out her. I do not think I have been through so much heart ache in one week as, I have been this week. I will cherish her last days with us.

Lizzy has been doing great. Got all her test results back from Madison and her diet is PERFECT according to the test results. Yeah!!!

Please, love your family every day like it your last. You never know when you are going to lose some-one dear. I just pray God will get me through to the next chapter in my life and helps me deal with the pain I am feeling. I know every one has a time to die but to lose someone when they just turned 70 years old a few weeks ago that is like a mother to you hurts so badly. She was only 15 years older than me.
I pray God takes her with no pain. I love this woman with all my heart. She has made a bucket list of things she has to get done before she dies. That is so sad.
Please, add prayers for my family in the weeks a head to be able to cope losing such a wonderful part of our lives.
"We believe in miracles because, we live with one!"

www.our-sma-angels.com/elizabeth

Huge News for SMA- Living with Spinal Muscular Atrophy

Huge News for SMA!!!

The clinical trial  for gene therapy is expected to begin in early 2014 and will be limited to Type I 

SMA patients, ages birth to 9 months. 

http://www.sophiascure.org/wp-content/uploads/2013/09/FDA-APRROVAL3.pdf

Thank you to all the people that helped!!  Many prayers have been answered!! 

Lizzy will be 10 years old in 8 days!! Can you believe it? They said s"he would not make it to age 1 and at the most age two!! " I will be sending a letter to the neurologist diagnosed her for the first time in about 5 years. I used to send him a little note on Lizzy's birthday and diagnosis day after she hit two years old for quite a few years.  I had quit because, I wanted to be positive and not dwell on the fact he did not know what the heck he was talking about. He also. did nothing to help the babies that had SMA type 1. We trumpet in the realization Elizabeth will be 10 years old on September 29!! 

"WE BELIEVE IN MIRACLES BECAUSE,WE LIVE WITH ONE!!"

www.our-sma-angels.com/elizabeth 

Changes and Double digits - Living with Spinal Muscular Atrophy

Where do I begin? This has been one of the best summers for Elizabeth. She has turned into a little lady.
For me? Hmm I would say" I do not think I have worried so much in my life ." It is amazing how much you can learn to live with out  things and adjust. Humans are an adaptable species, I guess.  Its been financially, the worst time in my whole life.  I can NOT focus on our issues in this update because, looking at Lizzy and how great she is doing, you have to give the man upstairs so much credit for making this little girl being the best she has ever been !  She keeps me sane I guess. She makes me smile. She is why I get up each morning. She makes me fight for her!  The stuff she says these days would make you laugh so hard. We shop at second hand stores a lot together. She says to me just a few weeks ago," Are you serious Nina? I would NOT ever wear that" and "That is just ridiculous!"
We have walked almost every night. Few exceptions here and there because, of heat, rain or I can NOT get Christen to go with us.I do not  like going alone with Lizzy because when we take the Wrigley. He can sometimes be ummm ...he can be a bit of a "stinker" . He barks at everyone and scares people half to death because of his size. He is just 9 months old but the size of a Shetland pony!!
We just had a trip to Madison last week. I think Lizzy shocks them on how well she is doing. I say it again. "Donor Breast milk and the supplements  helps her so much" The spinal fusion was a huge factor in getting Lizzy to be able to do so much too. She is in her power chair 8-10 hours a day. She has gained 4 lbs and 8.5 ounces since February. DR. H just glowed when he saw Lizzy. He is so great!! he said "She looks so much like a little lady". He only wants to see her once a year now!

Jerika Bolen was also in Madison. She was getting spinal fusion done like Lizzy did in November but, Jerika had other issues too. She had  gotten her growth rods out and some other things done also. Lizzy was very worried about her so we spent most of our trip with her after Lizzy's muscle clinic visit and before we left.

Lizzy will be double digits in a few weeks!! She is going to be TEN years old!!! It does not seem like it at all. Life just flies right by these days I guess! This year will be different. Her dad will NOT be around. He always got her anything she asked for at birthday and Christmas. He has chosen not to be in Lizzy's life anymore. Its sad but, he had issues dealing with her disease any way. He has not been around a whole lot the past few years except for holidays and birthdays. Lizzy is doing really well with the changes though. He has not seen her since January. Her anxiety is so much less and she totally is okay with him not being around. Wow, amazing how kids adjust so well. Thank you  lord above.

Lizzy and I have been working on school work almost daily. She is learning so much! I started teaching her about History too recently. The History of our county.  Christen taught her some stuff over the weekend.She is like a sponge. She was supposed to start school  but.. has not happened yet. Maybe tomorrow.  I have been teaching her myself .  I think we are falling in the cracks again. Lizzy's IEP did not go in a way we hoped. IL requires a minimum of 5 hours a week home bound instruction. KEY WORD "MINIMUM" So, the school says they will only give her that many hours. I have some resources from IL State Board of Education updated Jan 2013 that will come in very handy. I thought things were going to go smooth for us this year but,actually they are doing her an injustice. She needs a good education. So,if they are not willing to provide her one then, we will send her to a special needs school and the district will have to pay for it.  We shall see after the testing she is supposed to get soon. Lizzy needs asst tech things to help her do what she needs to do and the school is not willing to help from what we understand. We have a My Tobi eye gaze system that was given to Lizzy and the school  is unwilling to help update it for her because, they want her to be verbal. Well, the eye gaze is also for accessibility. They  just do no get it!!  Lizzy can only use her computer laying down. She can use her Ipad sitting up and does a great job but... many of her programs are online on her computer. We just have no one in our area that understands her needs for assistive tech. I feel a few challenges coming on in the near future for us. I am up for it(cracking my knuckles LOL) . Lizzy needs what she needs, plain and simple. She is NOT  mentally challenged. She just needs some help getting what she needs. Grrr Why is this so hard?

Lizzy was left this beautiful porcelain doll from her Great Grandma who went to heaven in February, this year. She loved Lizzy and was so proud of her. She was a very great lady. I know she watches over Lizzy. Her Grandpa Aaron and Grandma Sue brought it to Lizzy. They are very nice people.

We got a new BM donor for Lizzy. We got almost 1200 ounces in donor milk yesterday!! AWESOME!!. Thank you Haley!!

Prayers for my grandson Corbyn .He still has a virus he caught a few weeks ago. Poor  little guy!!
Many prayers for MJ and prayers for Jerika !!
Extra prayers for Paul. To get his sugar under control and to win his SSI case. He has been unable to work since his accident July 4,2011. It would make our life just a bit more easier.

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

Loving Life and Enjoying Each Day- Living with Spinal Muscular Atrophy

Lizzy is doing well. She is happy, healthy and a little beauty.She will be 10 in Sept!! Can you believe it?
She has a new dog named Wrigley. He is a Golden Doodle and 8 months old. Lizzy's Uncle Jeff and Aunt Dawn got him from a couple in Wisconsin for her.  They rescued him .She is so excited and loves him already. He is house broken and a very good dog. He fits in our family really well. We have been walking with him every night. We were in line for a service dog and we still might but, at this time the cost of driving back and forth 60 miles a way for training is not something we are able to do.  The big Moose jumps in bed with me every morning licks my face , licks Lizzy and when I get up to do Lizzy's treatment he sleeps in my bed until I get Lizzy out of the tub. He is hilarious. He looks like Chewboka off StarWars!! I mean in his face he really does!!  I think our lives will never be the same or boring! He is fitting right in.

We have stayed home for the first time in probably 10 years for the summer. Just walking almost every night, enjoying people coming over to see us,cleaning and just hanging out here. Its been a great summer. Its been peaceful. We walk at night most nights. Its cooler and the sun is not in our eyes. We walk all over our downtown. Caitlyn and Corbyn love to walk with us and so does Lizzy's friend Karly. Imagine kids loving to walk 20 blocks. I think that is great habit to get kids into. That way as adults they will like to walk. Well, a few nights since we have gotten Wrigley I have basically ran!! Imagine me at age 55 running!! I love it.

Christen has dropped about 40 pounds but me on the other hand maybe 5-10 pounds maybe more. I am not losing a lot. Of all places I have lost it my legs! I have chicken legs any way and a belly. I look like an egg with legs!!  I find out at the doctor on Monday how much I have lost. I am not fast enough for me. I am not getting any younger. In twenty five years I will be 80!!  I am having such a hard time getting weight off. My nurse practitioner Lisa thinks its because I only sleep 5 hours a night. Maybe, so but... I never had this hard of time losing before. My thyroid is under active but not enough for meds. I watch what I eat. I eats lots of fruit and salads. I just wish it was not so darn hard. Those darn steroids I was on for years for my back caused me more damage than good.

We do have a trip to Madison coming up the end of the month and it will be great to get a way!
Lizzy has been doing home work as much as possible online. Its hard to believe its August . Its been such a great summer it will be hard to jump back into fall. Then, winter ugh....... we have been out so much in the fresh air that just thinking about going on Winter locked down makes us sad. I am going to try to get Lizzy out as many days as possible even during the fall/winter months.
Keep us in your prayers. We have been facing some difficult times that I will post on how and what I am doing to get us through it. Pray it works. I prayed about it. I have get all my info together and faxed by tomorrow (I hope) things will be so much better for us very soon! I pray these people can help us and they have funding left. Its a gov. program.

Hope you all enjoyed your summer as we have. Stay tuned for some updates in the next few weeks after our trip to UW.
God Bless you all!!

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

Things will get better- Living with SMA

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

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

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

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

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

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

Help with Lizzy's van fund and medical fund

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

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

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

Shawnna Wendte

Initials, inc. - Independent Creative Partner

Phone - 309.224.9970

 

Been a Great Start to Summer!

Doesn't Lizzy look awesome? She has grown and filled out so good these last few months!! Thank you to all the breast milk donors!! You have given Lizzy your most wonderful gift!!
She is doing the best ever!!

Lizzy, Christen and I have been out walking almost every night. Thank goodness Lizzy stays up late. We go after dark because of the heat.
Hanging out here has been fun. Every night it seems we have an adventure on our walks. I love the exercise and Lizzy loves running around town. Her favorite place is driving fast down the law and justice center handicapped ramp here. The mosquitoes are terrible. Lizzy had some bites one night with  just OFF on so we started using lemongrass soap  in her bath also and she has not got bitten since.

Its been such a different life with Lizzy being able to stay in her power chair most of the time. Its been great for all of us!!
 Its already past the middle of June. Wow... How fast time flies!!

Last night we went to Monsters University Movie down town. We went with family and had a great time. Caitlyn , Lizzy and I walked home. We have to walk every night you know!

We went to Dawn and Jeff's on Fathers's day. The girls and I took the kids fishing . Lizzy had a blast. She had never been fishing before.

We still have the online fundraiser for Lizzy for a handicapped van. We have got a few hundred over 1000.00 raised. That is so great!!  Thank you all that have contributed. Christen is looking into more funding resources through a van company that sells accessible vans.  So, keep Lizzy in your prayers!! Walking with her is great but it will be hard getting her out with out a handicapped van. Laying on the back seat she plugs when in the van to long. She can elevate herself and maneuver her chair if she feels choky or her uncomfortable. She can not do that laying in the back seat.


We are missing all of our friends this year from the FSMA Conference. There was no possible way for us to attend this year or go any where for that fact! Lizzy so wants to go!! Hopefully, we can go to the FSMA  conference in DC one next year. Things should be looking up by then. Paul has his SSI  Disability hearing in Sept thank you to our US Congressman Adam Kinzinger's staff expediting his hearing! Whoo hoo Finally!! what a weight lifted of my heart!!

We have done pretty well for as hard as we have had it for the last almost 4 years. The last two years have been the worst since Paul's accident and his diabetes issues. It seems keeping positive,prayers and the love of friends have kept us going. There is a little girl that lives here that keeps me inspired also!!

Special prayers for our friends Charlie and Jake  !! They both have surgery for lengthening growth rods on Monday!!

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