Anticipation for Spring!! -Living with Spinal Muscular Atrophy

Hey, Spring we are desperately waiting your arrival.
Cabin Fever has ran into my plea "I NEED OUT OF HERE!" .  Lizzy and I have been stuck indoors since the first part of January. Well, with one trip to the dentist a few weeks ago. I mean come on just to the dentist. That doesn't count does it?
 Lizzy doing any home schooling with me is at a bare minimum right now. She has had a new teacher coming to the house since January, finally.  After, Lizzy's morning ritual that consists of her bath, stretching , face massage and treatments she is on her Ipad,on her computer or right behind me every second while in her power chair. She cracks me up. She told me the other day" Nina, you and I think a like, a lot. Which is okay but, why is every one else not like us?"  I was a bit shocked at this coming out of a 10 year old. I told her that we think a like mainly because, I explain to you why I think the way I do and you tell me why you think the way you do. We are around each other every day and that could be why. She said "Is that weird?" Trying to keep a straight face...... I said " I do not think its weird..... Its okay to agree with me and sometimes its okay to disagree with me if you have a good reason to." She said." Well, Nina.. you are right a lot of the time about things." Oh my I love that kid!!!  She is doing so well these days. I just love being around her. Lizzy is my inspiration.
The weather would not be so bad if it was not so darn cold and the FLU is EVERYWHERE!!
We go no where till we look up the CDC  on  http://www.cdc.gov/flu/weekly/index.htm#ISTE
No one comes in our house sick either. Its written on our doors with a big red STOP sign . If you ignore the sign and come in sick you are asked to leave. We have been basically illness free except Lizzy having a sinus infection a month ago.
Paul has been such a "Grump" being shut in. The truth of it is he gets out a few times a week and still a grump! I know he doesn't feel but, enough is enough!!  Some how I need to break his cranky cycle!!  Lizzy and I usually do well being in but... Not this year. I think its getting to me so hard is because not going any where I tend to drift into thoughts of losing my mom and my step mother. Nothing could of ever prepared me for the grief I have encountered this past year. My heart is having a hard time healing. I sit and cry almost every day. The two most important woman in my life since childhood are gone. I have been trying not to dwell on my grief but, dealing with "Mr  Crabby Pants" (My loving husband) just adds to my emotional state. He stays in his room a lot, is on the home pc for hours or he just complains constantly when he is down stairs. He is in a lot pof pain Lizzy and I agree " We need just to get away from him for awhile." We try to ignore him when he is like that but, sometimes its impossible...... UGH..... Spring, we need your presence so we can go on walks again! We do not need negativity in our lives!!
I have not done any craft things this year as I usually do during the winter. Just have not been able to get into them. It seems I just do not get a chance to do anything extra these days. Lizzy keeps me quite busy.

Many prayers to the families in the East Coast. Terrible Winter Storm hit many areas with bad power outages.
Borrowed this quote. It is so true.

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

Blessings Received, Paying it forward and Losing my Mother.

Sorry, I have not updated in awhile. We were all so exited about this past holiday season and Lizzy getting a handicapped van among other things. We thought finally, we had some great things happening in our lives. Then, a complete shock..my mother was hospitalized the day of our last Christmas gathering with my dad on December 29. The hospital said " That they thought she had a stroke." She could barely speak only make noises and was on bipap at the hospital. She said in a very slow almost whisper" I want to live" That was the day the doctors tried to get her to sign DNR papers. She was doing terrible when she was first in the hospital. I called my siblings home.  Seeing what mom's bipap settings were I convinced the lung doc to put her settings on a span of 10. They also added humidification at my request. Off Bipap she was on 10 liters of O2.  Mom was doing much better on the bipap after that. Then, the skin break down started on her face and she hated it. She would get all upset and take the mask off.  She had a full face mask on. My siblings started arriving and we knew deep down her time in this world was limited.  My bother  Rory and his wife flew in from Kuwait. My sister Rita flew in from Florida, my brother Tim came from around Iowa/IL border and my sister Mindy came from Kentucky.  We all were there to see her almost every day her last week. She was our center of attention and it felt good to have that "sibling bonding". I told her stories of her giving our kids their first baths after they were first home from the hospital and things she loved to hear. I put lotion on her face and combed her hair. My sister Rita stayed with her at night.  She loved her grandchildren and her great grandchild. She loved babies. She always cared so much about birthdays and the holidays that she would buy gifts or send cards. She was such a caring person and loved her family. She was so proud of her kids and grand kids.
She passed on Jan. 6 . The day after a bad winter blizzard. She loved the sun and light. She passed  peacefully looking out the window at the sun, Monday Jan. 6 at 8:25 am. My sister Rita was at her side. I had not left home yet because the roads were still being cleared off. There were sun dogs that day and I feel she was telling us she was at peace.

I have not been the same since her passing. Every thing I see reminds me of my mom. I think of her at least once an hour or more. My heart is having a hard time adjusting to her leaving this world. She had a rough last few years in the nursing home. It was hard for her not to live with her family. She was constantly in pain with her bladder. My heart hurts I could not just take her in myself. I had Paul and Lizzy to care for and I just could not take on more responsibility and do a good job for all three. She wanted constant nursing care so that is why she lived at the nursing home. She told us Christmas Eve 2012 she would not be here for the next Christmas. She made it a few days longer.I need to forgive myself and I have not been able to do that.
It was so hard losing my stepmother a few months ago but, losing my mother was unbearable. Again, three of my siblings, our families and I went through a funeral in just a few months. My dad also was having a hard time with my mom passing. The day she died is the day they signed their marriage license 60 years ago.
I just wish I would of been able to do everything she wanted me to do for her.
The last picture above is my mom the last week she was in this world with Reed, Rylee and me. Sad picture but.. feel the love. Ohh.. just breaks my heart to watch her suffer so.

Christmas had been great this year. My girls had helped a family out this year instead of exchanging gifts. In the past years we had people help us out when we had the roughest time in our life so, it was time to pay it forward.
Paul got Lizzy her handicapped van in Indiana. Thank you all that donated to Lizzy's fund. We did not raise a lot money online but what we did raise helped so much towards the purchase. It was a blessing to have so many kind people donate to help Lizzy. Thank you to all that helped.

Lizzy told her lawyers she wanted three things for Christmas this year. One was her dog Wrigley( which she already had since before her birthday) Two was that she got an handicapped van, and three was to have her name changed to Elizabeth LeeAnn Huette. She got all three. Her name was changed Dec.23 2013 and she got her van Dec. 23 2013. Life is good .

Never thought we would of made it through the last three years but, with faith and with being blessed with wonderful people in our lives we made it through!! Thank you to my friends and our family for helping us get through the toughest times in our lives. Thank you for being there for us.

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

Just Believing- Living with Spinal Muscular Atrophy

Its been a fast fall with winter approaching quickly. So, many changes happening. Lizzy is growing up so fast I feel like life is spinning ahead at full throttle. The past 10 years has been one of the most life challenging as any years before. Paul and I went from being totally financially secure and working hard until my injury. Then,loving a grandchild so much we stopped life to help give her the best life we could. Then, Paul being with out a job. He could not get work because of his age. Then, his accident making him disabled for life.We lived on so little. We had a few friends that helped us when it got so bad we did not know how we how going to make it through.  I can not believe we have made it the past three years (which was the hardest ever in our almost 39 years of marraiage). Patience and believing. Its amazing what giving it all to God can do for your life. Now, after all this time we are going to be okay. Paul won his SSI disability hearing and of today he starting making a monthly income. I do not have to do it all alone now and lay awake nights trying to figure things out. He has not got his back pay as of yet. We are using a lot of the back pay to purchase a handicapped accessible van since we were unable to raise enough funds to get her one. We did raise some and thank you so much for all that helped us do that. So, we are looking at used ones with low millage. Its a decision Paul and I made together. Its so hard for her getting any where with out one. I am getting older and she is getting bigger so lifting her to the back seat of the van with out help confines us to home all the time. Paul is not strong enough to help with the roll away ramp. We would like to do things with Lizzy by ourselves. I would like to take her by myself to visit her great grandmothers or the grocery store. We are unable to do that. We will all gain independence from getting Lizzy a handicapped accessible van and she will be able to stay in her power chair and look out the window. When this will happen I have no clue that is the just the plan!  Would be great if its soon!! It will all work out. You just have to believe!! My stepmother said on her death bed when she heard Paul won his SSI disability " You and Paul are going to be okay, now" She had compassion and a look of relief when she told me that. She is watching over us. I miss her so much it hurts. I accepted the fact she was going to die. I  just have not accepted the fact she will not be in the physical world in my life.

Lizzy has been doing great!!  She is very excited about Christmas this year. She has not made a list yet so we have no idea what she wants. She says " She has everything she wants!" I am like huh? That statement coming out of the mouth of a 10 year old!! I am sure she will figure out something or she is taking after me and my frugal ways I have developed in the past 10 years! I doubt she is taking after me. 

Have a great Thanksgiving!! 

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

www.our-sma-angels.com/elizabeth

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