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

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

Rain Rain Go Away!! Lizzy wants to go Outside and play!! - Living with Spinal Muscular Atrophy Type 1

Wow, summer kinda came quick this year.  What happened to spring? We have had some 90 degree days already and then rain for a week now. Lizzy wants to go outside!! Enough rain already!! Bad flooding around here too.

The picture above is Lizzy at Heritage Days in our home town last week . Then, her with her cousin Caitlyn and neighbor Blaze. Lizzy is" Miss Popularity" this year here with the kids all wanting to play with her!!
Things have simmered down a bit here if that is believable !! So, much less drama since February .
Lizzy's anxiety issues have gone away!! She is a bit sassy at times but she is not worrying like she used to and whining anymore. YES!! Life is good and peaceful!!! Thank you God!! Christen has her days but over all her heart  is healing and she is accepting things now. Funny how you take one negative person out of your life and positive things start happening. YEEEEEEEEES!!
Christen has lost a ton of weight and I have lost some but working hard at losing more. I have to be healthy I take care of Paul and Lizzy!!

I had a great Mother's Day. I went to church( don't faint). I just have not went in a long while because of the life changes the past decade. So, okay I went. Doesn't make me a bad person for not going regularly. I believe you do not have to go to church to have God in your heart. I pray regularly and thank God for what I have , pray for family and friends.

We took a trip up north  last Sunday and met the Pitzens to give Miss Avery, Lizzy's old power chair. It was great seeing them. We have not seen many families since conference last year. We miss all of our friends!! Getting back in touch with them also is hard sometimes.
The Pitzens are an awesome family. Good friends. Lizzy just loves Avery. Lizzy had to show Avery how to use the power chair. Lizzy did it but... did not like it!! She got all stiff and snotty with us for putting her back

in her old chair.  Notice the look on Lizzy's face!! ( chuckle) Lizzy said "She was glad to give it to Avery so Avery can run all over like her" Lizzy was unable to take her own power chair because of no room. (We are in so much need of a handicapped van!!)  Katy had to do some adjustments when they got the power chair home it home but I hear Avery is driving the "Princess Purple Power Chair" !! Gives me goose bumps to know another child will love this chair as Lizzy used to. Paying it forward is what its all about. The Pitzens treated us to a nice dinner and great time. The last time all of us ate out together ( Paul, Lizzy and I ) was when we were in Madison about two years back. I have a budget I have to stick to. I have to buy Paul's test strips, Lizzy's supplements, groceries and try to all the bills and its not easy.... but, I do it and do not think about what we are missing out on. I think about how well Lizzy is and how Paul's diabetic issues are slightly improving over what they have been in years. Got the keep the positive and let go the negative. God will find ways to get us through. I pray Paul's disability will get approved at his court hearing ( WHEN EVER THAT IS). We have been getting through but... just barely. It seems when we are really struggling and feel like we are not going to make it God helps us and works through others to help us some how.
Found this quote recently and yeah I, feel this way- May God give you:"For every storm, a rainbow, For every tear, a smile, For every care, a promise, And a blessing in each trial. For every problem life sends, A faithful friend to share, For every sigh, a sweet song, And an answer for each prayer."

We are walking at night when its not raining or nasty weather. We are up to 18 blocks!! All of our lives have changed so much this year. Lizzy is up in her power chair 8-10 hours a day most days and wanting to be outside. She is doing so well its amazing. Who knew how will her quality of life would improve so much?  Her spinal fusion has changed her life and her new power chair. I pray to God she stays this well. 

Lizzy has summer school starting next week. 
She also is back in swim therapy and speech. They are all shocked at how great she looks and how she is sitting up so well!! The therapists have not seen her since before the spinal fusion. The look on their faces when they saw Lizzy last week told it all!! Unless you see her its hard to visualize how much better Lizzy is.

We got a new portable Cough asst yesterday!! Then, shortly after we got that we found out that Lizzy was granted a Ipad 2 from GSF for Project Mariposa!! Christen applied for one and GOT ONE!!! My gosh! 
https://thegsf.org/campaigns/detail/projectmariposa/ This is only for children with Spinal Muscular Atrophy.

Lizzy has an Ipad that she had gotten a few years back from one of my best friends for Christmas. It was/ a wonderful gift. A dream come true!!   It s one of the first IPADs  and now because of technology and upgrades her Ipad is not able to do what she needs it do. She has not been able to down load many of the new apps or use it much for school any more. She loves to Skype but she does not  have a camera on her Ipad either. So, It was so great to hear Lizzy was granted one. Thank you GSF!! Wow, I never expected such a great day as yesterday!! Amazing!!whoo hoo

I just want to add something here. For those of you that do not take your kids out of the house. When, Lizzy was four she did not know what a mail box was, a post office, a movie theater and a few other things. We found this out when she was in speech from her answering questions. So, just a bit of my input but..please, take your kids out in the summer to experience things. Even if its on bipap take them out!! We at that time realized we were NOT living we were hiding in our bubble because we were so afraid to take Lizzy  almost any where. Take walks, go museums, go to an art gallery BUT get your kids out of the house so they can experience life. That is why we try to do things with Lizzy every day if we can. Experience life and all it has to offer. You do not have to go far a way just walk around your own town. People also get to know you when you are out and around.  Okay, done with my preaching just something I wanted to share.

Hope you all have a fantastic summer!! We will just be hanging around here at our home town!!

"We believe in miracles because we live with one!!!"
Lots of SMA info at

www.our-sma-angels.com/elizabeth
http://www.sophiascure.org/
http://www.smaspace.com/
http://www.fsma.org/
http://www.aadietinfo.com/
http://www.smasupport.com/

Living life and Challenges- Living with Spinal Muscular Atrophy

Sorry,I have not posted in awhile.There has much going on that has not been good. So, I feel I did not need to write when I feel that way. So, I do not post when feeling over whelmed.

Lizzy lost her dog two weeks ago. Pepper has been with us for over 10 years. Lizzy loved feeding Pepper french fries, pretzels or things she would lick and drop. So sad. When we go any where and come home Pepper would be wagging her tail and shaking her head barking greeting us.

This is the day before Christen and Paul had to take her to the vet to be put to sleep. 

I cried for about 4 days. It broke my heart. She had started throwing up blood and was unable to walk. She had a huge tumor from her leg to her groin area. She got bad very fast. She was a old but we loved her so much. She will be greeting me again some day. Love you Pepper you were the best dog we ever had. Miss you so much. 

Lizzy had some kind of virus the week Pepper got bad. Lizzy had high temp, sore throat and her nose kept filling up. I got her on antibiotic soon as could.  She did really well with this illness and with in a week she was bouncing back.

Lizzy has been outside a lot and all over town . We just went to the library on Thursday. She has been taking walks in her chair with her mom a lot. Its great they are spending more time than ever together. I can get things done like cleaning. Since Pepper is gone I have been shampooing carpets among many other things.

Lizzy is going to have summer school this year. Last year she did not but with her surgery and missing so much school we think she needs to have it this year. We are not able to do any vacations at this point so summer school might be a good idea. Working on many things for Lizzy to enhance her life. Her power chair has helped her quality of life since her surgery.

Lizzy has had to deal with a lot this year. Her father disappeared completely from her life. He blames me still for the break up with Christen. He says" I controlled were they went and what they did." No,  he never did accept Lizzy had SMA and never wanted the responsibilities of a child let alone a child as special as Lizzy. He only wanted Christen. He needed to blame someone so I guess its me. I do not care. Every-one knows the truth. I step in to help Lizzy when he stepped out and just wanted to be Dad for show around others. Lizzy deserves better. Lizzy has done really well with him not being round and gives her own opinion about things. She understands more than any of us would ever guess. She has been less whiney and does not get upset her mom goes out with friends anymore. Its  like she feels more secure that her mom is around more. Its amazing how much less drama is around and how calm our household has become. I like it!! 

Our faithful van broke down again. Christen got the part to fix it Paul put it in and that apparently is not only what is wrong. Not sure when we will be able to get it fixed. So, for now we will just walk and do what we can around town. Its almost to the 200,000 mark. We are doing a fundraiser to raise money for a new one. We have raised 850.00 so far. We are planning some other fundraisers too. We shall not stop raising money until we get Lizzy's the handicapped van she needs.. All the money we raise will go for the van. 

Many challenges have we have faced lately( well many the last few years) but we will get through them. 

Lizzy is my inspiration . Her and my faith keep me going. She is a funny, ornery,sweet , full of questions and such a little fighter. She has so much personality. She has a passion for life and everything it brings her. 

She is hopefully going to get a service dog soon. She was moved up on the list so hopefully we start the process soon. They have one in mind for Lizzy.  A poodle named Logan. I hope they like each other. We should be finding out soon when we get to meet Logan. Now, if we get just a small miracle so we get the van fixed and maybe we will be able to drive 60 miles for her to do that. 

Had a house full today. Its was Rachael's boyfriend's Prom. Rachael and her friend Cassie got ready here. Oh My... She was so cranky and nothing seemed to be right for Rachael!! I called her "Promzilla". I hope they had a wonderful time.

 

Where did the time go? Rachael is all grown up. Seems like not so long ago she was born. Lizzy and Rachael are very close.

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

Tough times and Its Spring finally!- Living with SMA

I need some divine intervention again. Sometimes,I feel I just want to give up and throw the towel in when it comes to difficult times . It seems the difficult times just do not want to leave us. How much can a person take you know? I just can NOT give up ! Its not in my nature to give up.

Paul still has heard nothing about his SSI claim. He can not work. He is not physically able to.

 I am Lizzy's caregiver and I have taken care of her since she was a few weeks old. I feel so bad leaving her if I go getting a job. I guess there is no choice I am going to have to. I do not trust anyone to take care of her. I take care of Paul and Lizzy. Lizzy gives me so much joy watching her grow but then watching Paul  struggle so badly I worry so much about him. He is so cranky these days and he has to nap every day for 2-3 hours. He used to be so good with Lizzy but he has no patience because he is in so much pain these days. I do not get depressed until I start paying the bills and I have nothing left and come up short for one of the bills.  We had a good many years and both of us worked so hard. I just do not understand why we have to be the ones that have endure with the hard times for so long.  

Lizzy needs a handicapped van so badly too. There is so much we need but we get by with so little. 

With out the love from friends we would not have been able to get as far as we have.

Enough , dwelling on the negative!! 

Lizzy is doing awesome. Her Mom and Dad went through a terrible break-up recently but Lizzy has done really well. She is beautiful and happy. She seems to have adjusted well  Kids are amazing on how they bounce back so quickly. She is busy "Bossing " us or giving her two cents on situations!! She does not miss a thing. Love watching her grow into the person she is. What a year but,  we made it through March for the first time in two years with being in Madison!! We can breathe a "sigh of relief". She also had a great Easter weekend. 

Its finally showing signs of Spring. Flowers are starting to coming up through the dirt, the smell of spring , days are getting longer and it is getting warmer. This is my favorite time of the year. The season or renewal.  Now, my allergies may disagree but, my heart is into this time of year. 

Prayers for my sister Lisa. She just went through a major stomach surgery. It was a brutal surgery but, she is on her way to recovery. She just needs some prayers. 

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

www.our-sma-angels.com/elizabeth

Hey, Spring where are you?-Living with SMA

 March. 12
The sun was shining today for the first time in a long time today and  all of sudden it got dark and it started snowing these huge snow flakes. Got so bad we could not see across the street . I heard it thundered out-side too. Then, the sun came back out for a few minutes. We were hoping for Spring soon so Lizzy and I could go out walking. She is anxious to take her newest power chair out and cruising. She is doing very well these days. She is in her power chair 6-8 hours daily. Its like a totally different way of life since her spinal fusion. Amazing.. to say the least. She is so smart but really sassy besides opinionated these days. She is happy and quite content that her mom spends a lot more time with her. She doesn't even complain when her mom is out anymore.

Corbyn turned 4 today. "Sigh". Hard to believe he is that old. Lizzy and him are very close.

The time changed Sunday and I do not think Lizzy and I have caught off from losing the hour sleep. If it means that Spring is closer we will adjust real quick..

Praying for good things to happen to us this spring. I think we are way over due.

We can not wait to get outside and start walking. 

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

. 

The Next Chapter in our lives - Living with SMA

Thinking about the events in our lives the last almost 10 years I could probably write a mini series. ( chuckle)
Boy, did that feel great to get those thoughts off my chest!! Lizzy and her mommy finally have gotten closer with out interruptions!! Its great to watch the bonding!

Oh a good note Lizzy is doing FANTASTIC!! Great doc appointments in Madison. DR. Schroth  says "Nothing surprises her. She is Just Lizzy"  LOL ! DR Halanski was so excited to see Lizzy. He says she is doing so well!!  
She is such a great kid. She is so full of life and such a joy to be around. She says things that crack you up constantly. She is in her power chair 6-8 hours a day. Moving so much more with her arms. Unbelievable that she seems so much stronger since her surgery.
Today, she has been a bit more handful than usual. We had a phone call this morning her Dad wanted to talk to her for the first time in a really long time at 6pm. She doesn't want to talk to him because all he does is "drill" her about things. She was upset. He did not call her thank goodness. "Sigh of relief"  Her Mom is home now and she is much better.
 We saw one of Lizzy's favorite people in Madison our friend Katie. Lizzy loves her girls too but the weather was really bad so did not get to see the girls :( .

We need Spring to be here soon!! . So we can get outside and actually walk!! Lizzy did go sledding at home last weekend. Loved it.

Starting a new chapter in our lives. Pray it goes so much more smoother!

Prayers for all the sick kids.

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

Winter Bubble, Sinus Infection and Flying to a Germ Free Island with Pixie Dust

Oh my goodness here it is  almost the middle of February and Lizzy has NOT left  the house since the first part of January. The CDC map says the flu is widespread STILL. Lizzy's teacher had strept last week and today thinks she has come down with stomach flu. UGH... So, glad we are NOT in public school. GERMS!! Lizzy said "We all need a Germ Free Island and fly there on Pixie Dust" I laughed. She is too funny. The imagination of kids. Love it!!

I ventured out last week and Paul and I did our taxes.  I went to a birthday party for Calib and Rachael yesterday. I felt like I had escaped! Lizzy stayed home with her mom since they do not have a ramp for her chair. She is in her chair every day and she feels she needs to take it with her every where. Love It!

Lizzy woke up about 5am needing suction today. Plugging, secretions galore, bloody nose and drainage. Yup, the dreaded SINUS INFECTION. UGH. Got her on antibiotic right away. She seems to be doing okay now besides the secretions and extra coughs. She is impatiently waiting for her Web-kinz Valentine Party that starts today at 4PM. Every 10 mins "Nina what time is it? " She is on treatments every 4 hours right now but if she needs to up them I will. I just hope she does not get any worse.

Lizzy's great grandma Hoffner passed away a week ago . Carolyn was a wonderful lady. She loved Lizzy and until she was not feeling well always made sure she checked on Lizzy. She helped Lizzy with a small benefit for our trips to California and Madison years back with the help from her friends. She had not been in touch much the past few years but, would send  Christen  or me a private message on facebook checking on Lizzy. She is the only family member on Lizzy's Dad's side that seemed to keep contact with us. Carolyn had went to holiday gatherings with our side several times. Very pleasant positive lady.  She was very honest in her opinions and I very much like that in people . She will be missed in our family.

Lizzy's mom Christen also had more things happen her this week. A good friend went in and got a cat scan and complications happened and she died at age 34.

Lizzy did the most amazing thing last Sunday during the Super bowl last week end she feed herself!!  The video above!!  We  were all STUNNED!! Wow! That girl never stops shocking us!!

Praying for a great year, Spring to hurry up getting here, all of our sick friends and Lizzy.
Please Keep Lizzy in your prayers!!
Please also forward her donation page to friends and family for a new van for Lizzy. She needs one really bad!!!
Changes are happening all around us.
"We believe in miracles because we live with one!"

www.our-sma-angels.com/elizabeth 

The Winter Bubble - Living with Spinal Muscular Atrophy

We have been living in our "Winter Bubble" since Christmas and it seems likes its been forever! Lizzy and I were in a discussion just the other day and we both decided we need to escape,  soon!! Thank goodness for the internet! That is our only link to the out-side world it seems. Elizabeth is doing fantastic. You can barely see her scar and is gaining weight again.

I have got a lot of cleaning done and plan on getting carpets shampooed this weekend.
Being organized is some thing that makes my life so much easier!!

Paul and Christen had been sick for 3 weeks and coughing last 4 weeks. Lizzy got the sick before Christmas and she got me sick the week of Christmas as I said it my last post.  Her and I got over it a lot quicker than anyone else. I ran around trying to keep everything sanitized and finally convinced Paul he needed to let me change his bedding. Men are so stubborn sometimes!! 

Lizzy is doing well. Just trying to get her up in mornings have not been easy with the colder weather. She says" Nina.. please just let me just lay here and watch TV. " Then , in the tub"Nina just let me soak" She is too funny how she tries to get out doing stretches and treatments still and she is 9 1/4 years old now. She has been doing treatments and stretches since she was an infant and still hates them!!I just keep telling her as I do every day " I only do these treatments and stretches because I love you and I want you to be strong." 

Lizzy's home-bound teacher Becky had to quit due to a change in her husband's schedule. It was very sad to have to lose a person so close to her but.. we have to think positive. Things change and we have to adjust. Lizzy was upset over the holiday vacation about the change but.. I think she is going to be okay. We have talked about it and she knows its no ones fault. She met her new teacher last Monday. Lizzy says. "She is okay"  Hopefully, it will all work out well. Lizzy is a pretty smart kid so I am sure she will do fine. Becky was a special person for all she did for Lizzy.We will always have a special place in our hearts for her. She will be missed. 

I have decided the situation with the "disgruntled soon to be relative" is something I am done letting it bother me. I have come the conclusion "Life is too short to live with such emotional roller coasters" You like us or you do not. We are honest people and we stand up for what we think is right. Family and friends are very important to us  I do what I have to do to keep positive and just pray about it. I went through  a lot emotionally this past Spring /Summer with family things and I refuse to put myself through any more unnecessary drama. I am so DONE. I do not have the time of patience for such nonsense in my life.
I am trying to get myself in "exercise mode"  Its not easy to get self disciplined!


Lizzy does really well with dealing with things going on around her. She has an opinion or makes a joke about things that shock me to death. 

Paul is feeling better from the illness but he has lost weight again. He has been going to diabetic counselor for a few months now and  is still trying to get his sugar levels under control. Keep him in your prayers.

Lizzy had a play date with her cousin today Taylor. They did some crafts and have been getting along really well.

     

Hope you are staying well!!
Adding some great links to some ideas for around the house helpers http://www.onegoodthingbyjillee.com. Great ideas!! They work too!!

Just remember this!!

 Thank you to all the people in our lives.
"We believe in circles because we live with one!!"
www.our-sma-angels.com/elizabeth

New Year and New Beginnings- Living with Spinal Muscular Atrophy

The holidays are over for 2012. What a year it had been. We got through it and ready to take on another one.
We had deaths, births, illnesses, surgery and so many things go on this past year. Taking a look back I take a deep breath and think wow, Its  2013 where has the years gone?
Its sad another year has come to an end  Its exciting that we have a new year to maybe start over some things we tried to take care of.
I have to get busy and get my bows going again. I have been so busy with Lizzy I have not been able to do much as far as extra things like that.  I will get busy here soon as get some sewing done for my mom and bows started. With the flu map and how wide spread looks like we will be staying home even more than usual.
 Lizzy has been "high maintenance" since she turned 8. Its attention she seem to want a lot of .  She doesn't like to give me a break . She needs to be entertained because the words" I am bored" come frequently from her mouth these days. Her new power chair has been life changing the past few weeks. She is strong enough since her surgery to be in it 4-5+ hours a day and possibly more. She is like a different kid while in it. DR. H really made her quality of life so much better. Its so great to see her so controlling more of her life. "Sigh" Life seems so good just to watch her.
1/7/2013
We have all had that "Viral Bronchitis Crude".  I had it for two weeks. Took my ol time remedy of Cayenne Pepper, ginger, honey,water and organic cider vinegar for 4 days . It took my sore throat away helped me get the phlegm up . I went to the doc and I was put on Zpack. I could not get over the chest congestion. Felt like I had a Sumo wrestler was sitting on my chest. Christen has had it for over two weeks and Paul is on week two with dizziness and so very sick . He has been to the doctor twice and I am so worried about him  his stubborn grumpy self refuses to go back. I am afraid it turned into Pneumonia..... Lizzy was sick for two weeks also but we kept her illness from going to her chest but it did take two antibiotics to get her over it. I pray she does not get it back from Paul. He needs to get a shower, change his germ filled clothes and let me change his sheets. What makes men to darn stubborn? He makes me so mad!!!
Lizzy's BFF was life flighted to Madison with RSV. Please add her to your prayers!! Her name is Sophia Salus.
There is something I need to write about. I have a very strong bond with my family and want to spend the Christmas holiday with them at least one day. You never know who will not be here next Christmas.  Last Christmas we were all sick and could not have Christmas Eve and Christmas Day with the family. Then in June my step-father passed away. Who knew? You know you need to spend as much time as you can with family. We had plans this year as usual to have Christmas Eve together with my mom,our kids and grand kids at Dawn and Jeff's. Its not about the gifts its about spending family together. It was planned on Thanksgiving. Well, this year one of the "soon to be relatives" got down right hurtful right along with her parents plastering terrible things all across face book that were untrue and really caused a lot of issues from being so childish and rude. The things that were said were so terrible and untrue. It was like middle school drama and uncalled for. You know..... I am just done trying with her period. I have enough going on and my life and you can only try so much. If she does not want to be a part of our family there is nothing we can do about it. I pray about it often . I have given it to God. Just remember family is so important but if an outsider comes in and causes so much drama you have to try to get it worked out if you can. Sometimes its so impossible you just need to let it go. You did everything you could to make things right and they still will not budge then is that is all you can do.
On a good note we are still here. Life is never dull with Lizzy that is a sure thing. She just told me this morning" she thinks she needs a bra." I was shocked yes but she is getting older!! But...... a bra?  She is nine!! LOL  Never dull with her,  as I said.
Thank you to my dear friends that helped us again this year get through the year. I can never thank you enough for your kindness and caring!! I thank my mother in law for her generous Christmas gift that helped pay to get the van fixed. Its broke down the Sunday before Christmas and needed a new fuel pump. I think prayers and believing in miracles is what get us through!!
I will close wishing every one a Happy Healthy New Year!!
"We believe in miracles because we live with one!!"
Keep us in your prayers!!
www.our-sma-angels.com/elizabeth