Feels like the longest January ever! / Living with Spinal Muscular Atrophy Type 1

Sorry, about so few updates these day! I will try to be better at this!
Boy, This has been a long month! They say it is because, we have not had much sun this month.

After, our stomach flu illness all is back to normal.

Lizzy is bored so bad! Netflix, Disney Plus, our dish network or all the 1000s of games she has downloaded from Itunes can NOT appease her boredom. We are on lock down to avoid winter viruses. She has her next Spinraza injection in a few weeks. We had to cancel the last one due to her and I had stomach flu.

Lizzy had her IEP this week and did really well. They even talked about her designing t-shirts! isnt that cool?  Only problem Lizzy needs updated Ipad and the school is not able to purchase her a new one. An old one but she has an old one. She just is not able to use some of the apps because her Ipad is too old. Need to figure that one out.

My diet has to start Monday! I don't get to walk anymore and the weight keeps piling. I feel like a wobbling penguin! I can not help I love food!  I have never been as heavy as I am now. I went back on my exercise bike yesterday. Now, to continue!! I need strength!

Believe in miracles!
Vote in the primaries!! Save our country!

www.our-sma-angels.com/elizabeth

A long over due update- Living with SMA

August is SMA awareness month. Here is a picture of Lizzy and her friend Kyla.
Lizzy is my hero.
I have not posted in so long and I apologize. I have been so busy these past few years its hard to even find 15 minutes to just sit down and post.

My dad has surgery again tomorrow to remove skin cancer on his arm. Its supposed to be routine but when you are 80 years old nothing is routine. Add him to your prayers please.

Lizzy has been doing great except for her sassy mouth at times. She is the worst when I am doing her last treatment before bed. I do not know where she got the mean streak but, I do not appreciate her attitude and how she thinks she does NOT have to do treatments at night. I make her pray after she does this and ask God to help her not be so mean. Not sure what causes her sweet demure to turn into a smarty pants little stinker at night. It will stop or her mother can do her treatments. She is beautiful and a great kid the rest of the time. I guess "Welcome to preteens"

My family has been cleaning my dad's house out that had 5 generations of stuff in it. We have found a lot of cool stuff, creepy relative pics from the 1800s, dust and a lot of junk. My gosh this has been the most over whelming experience in my life. Its been just 6 of us doing this. I mean this house was packed from the basement to the attic. We cleaned this out without central air in 90 degree weather. It literally kicked my hiney. I lost 12 pounds in a week and I believe it was from all the work I did!  You find out a lot about people when it comes to hard work. The ones who show up and the ones who has better things to do. Sad, but very true. Almost done. I am amazed of the work we have done and how much has been done.

I was upset last night as I watched a child with SMA dying on facebook. It tore my heart out I could not watch it anymore. The sweet little guy earned his wings this morning around 7am. How could a mother record her baby dying? Some people are "social media' Crazy. All I could do was pray for the little guys so he did not have to suffer. Not everyone thinks like me or feels like I do . I fight for my kids and grandkids. They are gifts from God. To watch them just die and do nothing is to me a terrible sin to me.  Fly high sweet boy fly free from your suffering.

Summer is almost over and fall is sneaking up. Where did the time go?
Lizzy's mom is expecting a baby boy in November. Kolton Paul Huette will be his name! Lizzy is excited! He is SMA Free!

Thank you to my friends for keeping up on us and sorry again I have not updated sooner.

"We believe in miracles because, we live with one!"
for info about Lizzy in her earlier years  please read Lizzy's website
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

 

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/

Moving Right Along - Living with Spinal Muscular Atrophy Type 1

It seems Lizzy has bounced back and back to her norm. "Sigh of Relief" This last illness scared the bejeepers out of us but she bounced back quicker than any if us anticipated.
We went to church yesterday with the family and Lizzy actually loved it. Caitlyn and Corbyn were baptized and Dawn joined the Lexington Methodist Church. So, we may be going every week. Since, she goes to bed earlier and up earlier it was not hard to get her ready to go and  on time. We actually were early yesterday. Isn't that amazing. LOL  I think we will be going to our local church though. I belong to the Methodist church about two blocks away so we could even walk and no loading the van would be necessary. We shall see how this goes.
As, I stated we have went through some changes since Lizzy hospital stay. Christen is home more and helps with Lizzy's nebs at night while I get some of my stuff done. That started over the weekend. Its seems to help me get caught up on some of the stuff I have to do too. Only problem with the going to bed early is now my eyes pop open at 4:30am every morning!! Lizzy wakes up and says "Nina pleeeease lay back down I am not ready to get up!" So , I lay awake for a few awhile and sometimes fall back to sleep but not often.
Oh, let me tell you about my crazy hair mess up over the weekend. Okay, I have not been able to get my hair cut in months so I have this natural curly crazy hair that is untameable. And .... this natural curly is close to looking like Bozo at the moment. A thanked my Dad yesterday for that gene. Well,  since I went through all the holidays with crazy hair that was turning white around the face I decided to color it. Well , The first time Saturday it came out close to a Hot Pink. Yeah, Hot pink. So, got the color I usually use for touch up and it turned Bright Red!!!!! oh my gosh I was so upset!! OMG imagine.... Going to church with a bright red mop on my head!! Christen laughed and laughed. Grrrrr Any way, I sent her out again to get me a  5R COLOR that my beautician recommended awhile back to fix one of my crazy hair color disasters. It worked but my hair is so long ( for me) . I hate my hair long because its so unruly. My kids like my hair longer and told me I could use a curling iron. What ever? I usually do not have time to wear make up let alone use a curling iron. Since, I no longer can afford the beautician I guess I cut it myself, curl it or cover it with a huge hat.  I really do not like white hair on me so I need to be careful with hair color.
My plants I have started in my basement with hydroponics and some with grow lights are doing well!! I have to transplant the hydroponic tomatoes this week and set outside during the warm days so they can grow tomatoes. Beautiful looking. I have flowers that are also doing well that have been under the grow light that are doing well too!! I need to get all those transplanted and start more. I love growing my own vegetables and flowers.
Next week Lizzy finally gets her new TLSO!! I have her back to what is was before her illness. That took time but we got it back!! Then working on getting her a new collar since she out grew her last one. Then. she has a wheel chair eval for first week in May. Hopefully, the power chair route will not take that long. Then she will be all set up for summer.
Sorry if I sounded emotional last few posts. This last illness took a huge toll on all of us and we did not really know how it was going to effect Lizzy but..... She is back to herself with a tad less whining!!
Believe in the power of prayers. It works. Believe in miracles because they are out there too!! Just look at Lizzy!!
Thank you all that prayed for Lizzy and helped during this last illness!! You are the reason she has bounced back!!  Love you all!!
"We believe in miracles because we live with one!"

Happy Spring!! - Living with Spinal Muscular Atrophy

Loving this weather!!

Corbyn my grandson turned 3 on Monday!! He spends a lot of time with me along with Lizzy and I would not change that for anything! He is such a cool kid!!


Lizzy has been doing VERY well since December. She has a sinus infection right now but doing well. I mean really who doesn't have sinus issues with this weird weather. Got her on the Zpak . She did great on blood tests last week. One poke and they had to get a lot of blood and drained one vein dry and first poke on the other arm and they got it!! These are our locals!! I insist on blood work every 6 months for her to see how she is doing with her diet and over all. First time it was done locally. Hope it works out. They never left a mark on her. Amazing. My good friend Mary said "It was because of the Vit K she has been getting since last fall" Just hope she is doing well. They have to send off her Essential Amino testing , Carnitine and fatty acids. . I believe they said they were sending to Mayo. I am anxious to see how she is doing.
She has not had school in three weeks because her teacher has been sick. I have her busy with Reader Rabbit and some Arthur projects. She is loving it and actually on the computer programs longer than she has school!!
Lizzy was fitted for a new TLSO  and we will be picking that up soon.
Her and I have been stuck home for months!! I guess that is a good thing because we were only ill during Christmas. Some sinus for us all but that is normal for us.She is doing swim therapy, OT and myofasical release.

Its been awhile but with this early spring weather I have been busy starting my tomatoes, flowers and some green peppers from heirloom organic seeds. I have been using a grow lamp on some of my starts 48 tomatoes, green peppers flowers and herbs and hydroponics on 24 plants of the tomatoes. I have all kinds that are heirloom organic seeds from all over the world.
I found some survival kitchen heirloom seeds that can do a 3/4 acre garden.  I am loving this too!! Thank you again Pinterest. Tons of articles on doing an organic garden on my page on gardens http://pinterest.com/fightforliz/gardens/  If you want to start on you own organic heirloom garden then check my pins out!  Have to take care of my family during this roughest time ever and this is the one thing I can do.
 Its getting harder and harder for us to get by these days. Paul has had several interviews and every time we think its in the bag and NOTHING. Keeping our fingers crossed for this last one that he was sure he had after 2 interviews and a pee test with one company. Then, he was called for a 3rd and he was sure he had it . Walked in and there was 6 other applicants ugh........ much younger.  Gosh. when does this end?  Does this man that worked so hard for his family for so many years get a break and get a job? The stress is tearing us apart inside. It sucks getting old!!

Any way we are trying to remain positive and carry on. I am preparing for a huge growing season and plan on canning everything!! Making my girls have a canning party with me!!
Enjoy this weather!! We are trying to!!!!

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

I know God won't give me anything I can't handle. I just wish he didn't trust me so much." Living with Spinal Muscular Atrophy

I thought the summer was going pretty smooth but seems like things keep happening all the time, Makes me wonder if in my past life if I was really bad or something. I am truly not a "WHINER" !! I know I try to stay as positive as I can but with the situations that keep finding their way to us makes you wonder. As,  Mother Teresa put it best "I know God won't give me anything I can't handle. I just wish he didn't trust me so much."  Mother Teresa was a wise woman . I have used that quote before because I think about that all the time.  I have to endure a lot the past few years. At some point we all face trying times and feel powerless to be able to get back on track again. If you give up and quit trying you will not get back there. I seem to be doubting myself more and more these days. Then, I pick myself brush myself off and continue on. Why I am I like that? I think its because of the life I have had since a child and because Lizzy helps me realize I can not just throw in the towel. I lost my arrogance from earlier years and replaced it humility the older I get .  If that makes sense.  I take each day as it comes. 


Its been a rough year. My husband does seasonal outside work like mowing, cutting trees down, weed eating etc just so, we can get by. Twelve bucks an hour these days is not the best wage in these trying times but it helps pay the bills. My mother has literally emotional drained me. This last weekend was bad with her. She is not well  but.. she  has went to the extreme recently. I think a lot is she wants the attention. With her recent mental frame of mind it makes it harder every time to deal with her. She has been as bad as a child. Well, worse !! Lizzy is a child and she does not act like my mother. I love my mom but too much is too much . Then, the event that happened this weekend to my husband was something I prepared myself for many years ago expecting it to happen  a long time ago NOT NOW. He is a rebel. No doubt why I married him was for the wild life he led. We have been married since Dec 5, 1974.He is 57 !!  He has mellowed with age. ....  I thought.   NOT!! He was out at my daughter's house and he flipped the 4 wheeler. He was taken by ambulance to our local ER and we spent 7 hours there last night. He had been laying across the lake for over an hour and half alone with out anyone hearing him whistling .  He finally found his cell phone called one of my girls and  they all ran to his side. Leaving me with Lizzy and freaking out on what was going on. He has a broken collar bone, 6 broken ribs and a fractured pelvic bone. He will be fine after weeks of healing. Yesterday,I was concerned for his life . Now today... I am concerned about how to pay the bills next month and the months after.  I get paid just a bit over $600 a month. The income tax we have been living on is almost all gone because we have lived on that also. What are we going to do? I am going to try to do his job mowing myself. Lets see. I need to lose some of this carb weight I gained . Might be fun or it might kick my hiney. 
I had made home made pulled pork, cole slaw and potato salad for Dawns on the forth where we were at when his accident happened. Since,  we were at the hospital my food was all taken home  with people!!  LOL At least they all liked my cooking. (Trying to add SOME humor to last evening.)

Lizzy was coming down with something Saturday and since we caught it quick "nipped it in the bud sorta speak" she was doing great yesterday. She is pretty tired today because she stayed awake  last nightwaiting for me to say prayers and said "She really missed me." Sweet Child. Bless her heart.

Paul is slightly better tonight.  He wound on his pelvic bone looked a bit better. I have to clean his wounds. I did it but it took everything I had but I did it !!I dont usually do wound duty!!  I get all light headed doing any kind of thing with the skin, blood  and bone thingy..... ewww.  The docs last night are worried about pneumonia with the 6 broken ribs.. Paul says" This is about as bad as taken care of your Mom" I sad "No, Paul I am supposed to take care of you when you get hurt." This does not bother me. You are my husband. I said "I can take care of you and Lizzy no problem. " WE WILL GET THROUGH THIS!!

The Casey Anthony Verdict shocked the heck out of me. I do not believe it. Are these people crazy to let her back out on the street. Makes no sense to me. Now , they will probably make a movie about her, write a book and she will be a millionaire. Commit a crime , become acquitted and become a millionaire. I see something REALLY wrong with this picture don't you? hmmmm?  Just hmmmmmm?

Please add Paul to your healing prayers. Also, add Julia Kay who has Spinal Fusion on Thursday.

One tip: Use : 100% Pure & Natural Ubiquinol as Coq10 supplement. It gets to the blood stream faster and is better for you!! I get the gels and poke it with a lancet and put it in Lizzy's food mixture while making it. I use 50mg Swanson Brand and going to up her very soon. 
"We believe in miracles because we live with one!"
www.our-sma-angels.com/elizabeth

Just living life,Finding Joy and Independence - Living with Spinal Muscular Atrophy Type 1

Lizzy has been enjoying life and I have been tagging along with her. Watching this new found independence and watching her reactions have me in awe. Who would of thought one little girl can enrich my life so much.

We have had appointments like crazy and afterwards we have been taking Lizzy with her chair to the mall and stores just to look around. She loves it!! She was not in her power chair very long  the last few years  because of some issues with seating and bracing. She had been to Wal-mart once or twice in her life in her power chair but had needed to come out of her chair due to positioning issues. Now, its a different for her she is in charge of what she sees and where she wants to go while in the mall or a store. Amazing to see her like this. The comments she makes are like she is a teenager. Like , "Gross, or Truthfully, Nina its just not my style or that is babyish looking." Imagine seeing everything from a manual stroller laying flat for over 7 years. Then, you are 7 years old and 8 months old and see a totally different world just sitting up. Its like she has never seen these things before. I love it!!
No matter how much things are going on around me when Lizzy is doing well and things are great I am as happy as I can ever can be. I find so much joy in Lizzy and Corbyn these days. I love the rest of my grandkids deeply but my life is surrounded with these two and their discoveries.

 I am so glad we kept pursuing finding a wheel chair vendor that knew how to figure things out for kids like Lizzy. I just wish it would of been a few years sooner. You are used to the vendors you have had for a longtime and want to give them every opportunity to accommodate your needs with their professional expertise. When they do not accomplish that you have to find some one that will. We had this equipment vendor we have now for a very short time before for a kid kart  for Lizzy and switched to another because we were told he did not deal with the power chair Lizzy's needed. Yes, he did and does. Live and Learn!! He was great figuring out just what she needed!!

Lizzy is about done with school and she is not likening the fact she will be done for a few months. We could not prove Lizzy was cognitive delayed enough to have her in summer school. She is a pretty smart kid.  Its summer so we have a few things planned but until we get the van fixed we will not going too far away. Broken belt in the tire, DVD quit working and a noise in the front Never ending list of things since the van hit 100,000 miles awhile back.  Having Lizzy chair in the van also there is no room with all we have to take with us to travel but we will live with it. We can not get a different van because Paul has still not gotten a job but he just completed a college computer course and math fresh up through Job Service so lets hope his newly acquired skills help his chances of getting a job SOON!!  We are living with in our means but with no income on his part and just mine the future for us looks petrifying to say the least!! It will work out I have faith.

We have less drama here since Lizzy's dad is not around so much.  Christen is treating me a bit better but there are days..... ahhhhhh where we still bump heads. Life's too short to argue... Not good for Lizzy either. Christen needs to learn how to respect me as a mother not as a friend or sister. I am Mom and I deserve respect. As, I said she is getting a bit better.

 Since, RSV I am pleased to say Lizzy is better than before. She is doing great in swim therapy. Her back is improving so much . Her strength is amazing. She is filling out and not so tiny anymore as she has been since she was an infant. She is such a beautiful child. She loves life and is exploring her new world of being mobile again.

Thank you to all of you that are in our life that share the same joys as us. Having a child like Lizzy in your life makes you stop, take in a deep breath, enjoy happiness and all life's wonders. We are all connected and to find peace and happiness in our world we have a achieved one of life's greatest gifts. Whatever method you use to define happiness the Dalai Lami says "That happiness is a state of mind more than a reflection of circumstances."
Live life one day at a time is the way I have learned to live.


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

There is something good in Every day- Living with Spinal Muscular Atrophy Type 1

Lizzy wanted to call the Easter Bunny directly. She said" I NEED to talk to him!" Being 7 and half I am thinking its time to tell her the Easter Bunny is make believe. But.... do I want her to bring her out of believing in magical things? I was younger than her I found out there was NO Easter Bunny. Hmmm what to do?

Lizzy has had  her good days and bad days this week. She was off bipap till 10pm last night and today she was on it around 1pm. I feel like I am not doing enough to get her well. Is she going to be weaker or is she just this way until she heals completely? I over think everything in her care right now. Am I doing enough? Am I patient enough? I am not used to her being like this and I feel such a failure these days because she is not totally recovered yet. I asked her what is going on and she said " I NEED my BIPAP NINA."

I try to stay positive but it seems I am having a hard time lately . Its feels like I am chained to my house right now and the walls are closing in. I pray to get me through this tough time but it seems I am not feeling any better after being home. I swear I am not selfish and all I do is want to care for Lizzy. No one is giving me a break here. Its like I have always have been right there for Lizzy but I am feeling emotional these past few days and I do not know how to stop it. Its like I don't want to leave her side but its like I can not breathe. I feel so guilty and helpless feeling this way. I love her so much but her whining and fighting me on treatments is wearing me out. I need some positive energy here. I think there is many factors involved responsible for these feelings.  Paul still is not working yet e so I am worried about that. I also have a "Care Plan" tomorrow at the nursing home with my mom's care team. That is also been hard on me. I know they say God never gives you more than you can handle but... geesh I think he trusts me too much these days!

There has been a few things going on with Lizzy's dad that makes me crazy too but I should be used to that. He does things to get me upset daily when he is around.  He torments me. Christen ignores it or says Mom Get over it.. But you know I have gotten over it enough and its time I have others back me. I just do not want him around so much. I do better with out him and me in the same room. He is so negative all the time that he sucks the positive energy right out of me and everyone around him. Lizzy does not need that.  Sorry, I had to vent.. Yes ,I have forgiven him many times and he always goes back and does the same thing . How can you keep forgiving someone that keeps repeating the wrong that they have done. Yes, I pray for him every night. I usually do not bring him up in posts but I feel so much better venting about it. Its a constant battle with him.

Maybe,  I am just plain tired. Maybe, I will get over this "Hump" in my life right now. Maybe, I will just start walking like I used to and clear my brain every night if Spring ever decides to get here. One thing I will NOT do is give up on Lizzy. I know she is struggling right now but she is  fighter and she will get through this and be stronger. I know she will.

"Every day there is something good in it"  I just need to remember that. I have so many great people in my life I should remember that too. Keep sending those prayers. We need them.

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

Home Never Felt So Good- Living with Spinal Muscular Atrophy Type 1

Home...... " sigh" Thank goodness.The last  few weeks have been like we were in a different dimension or some one else's life. It was our reality but I do not ever want to go through it again. I spent a lot of time praying and crying. I aged so much these past few weeks. My girls all told me "Mom your hair...... its like it turned white,  color it!"  So, I did today and its purple. Actually, Christen did it for me. I used organic hair color. Yep, its reddish purple. Lizzy said " It looks like a strawberry Nina!" Any way, I might be calling my beautician to fix it! ! Life, is slowly getting back to normal purple hair and all. I have had company come see how Lizzy is doing since we have gotten back. Tomorrow, I will be able to get a bit more caught up around here.

Lizzy is still on bipap more than normal but that is okay. She has been going on  it about 4 to 5pm. So, she is off a lot. It just going to take time. She is moving good and is on her computer several hours a day. I notice some nose flaring around 4pm or so and tell her its okay if she needs some bipap time. She tries to push herself to stay off. She has been getting up around 8am and off bipap at that time so she has accomplished a lot in the little time we have been home.

We had some wonderful nurses at American Family Hospital In Madison. We started blubbering like babies when we left. Kim, Claude and Lynn were so good to Lizzy. The RTs were amazing. Working side by side with the RTS was a relief knowing they knew what they were doing. The nurses said" we were so easy because we did every thing ourselves as far as feeds and taking care of Lizzy." Lizzy got really close to Kim  one of our nurses. Kim sat with her at her bedside reading books, doing a spa day , the two tea parties and just treating Lizzy so special. Claude also another nurse treated Lizzy so special. We had Lynn at night and she also treated Lizzy so well.

DR.Schroth was like a saint the way she arranged for Lizzy's med flight and handled our ER staff here to have such a quick and easy transfer. DR. Schroth was on vacation and did all this for Lizzy. What a wonderful caring doctor she is. I have already known she is great but this was way" Above and beyond the call of duty" She even had me on the phone two days before Lizzy made a turn for the worse helping me make sure Lizzy was in the best possible hands at home.

 Katie Poole has a special place in my heart for meeting Lizzy right off the med flight in the wee hours of the morning. She let Lizzy call us from her phone after she landed while we were on the road. She said " Mommy I am here. Katie is with me and I am okay!" I lost it when Christen repeated what she said to her. Lizzy is loved for sure by many. Our friendship with so many in the SMA community is just breath taking. The cards rolled in, the balloons, gifts, phone calls, two times we had  friends bring us supper. We even had a few friends stop up to check on Lizzy. I felt the strength of prayers surrounding Lizzy and also giving me strength to help her get through this. I have been known to be a bit clairvoyant at times but to feel the strength of words the prayers and feeling so many praying for her was undoubtedly the miracle that helped her get her through this bad illness besides her determination to live. Its like I could feel the words of the prayers. I could just go on and on about what wonderful people we have in our life that  are in our extended family. Thank you all so much!!

Now, I need to talk to my mom who is a block away at a nursing home and make sure she is doing okay. Its been hard to help her when my focus has been Lizzy. I still kept up what was going on with her and the social workers called me and updated me and my sisters. I am the one that makes Mom's medical decisions now and it the scares the heck out of me I am responsible for Mom's well being too.

Paul is still not working yet but waiting for the call any day to start driving a semi . They are waiting for the contract to come back through and he is in. Its harder than heck getting through this past year but the last few months after his total cut off unemployment has been the worst. Then..... Lizzy's illness. I think I have grown some "nerves of steel" or" brass ball"s because we have gotten through this all and we are okay. Its not been easy with added EXTRA stress ( which I will not go into) besides everything else but I have to say" Yeeeeees we are OKAY!!"
Now my diet starts AGAIN for me. I ate so much while Lizzy was in Madison I was worried they were going to have to "Roll my chunk hiney" through the doors. OMG.... It was unbelievable how much a stress eater I am.
Lizzy amino acid profile came back and it was fantastic. She was a bit high in glutamine but that was it!! The residents had a few others circled on the report but..... they were looking at the wrong values.They were looking at baby less than a month old. Wrong column.  So, I must know what I am doing as far as Lizzy's diet. I looked it over a few times and took a deep breath in and was relieved even during a terrible illness she was good.

Thank you again for all the prayers and just everything. Love you all. Thank you for being in my life!!
"We believe in miracles because we live with one!"
www.our-sma-angels.com/elizabeth

Blowing this place!! - Living with Spinal Muscular Atrophy

We leave for home tomorrow!!! WHOOOOOOO HOOOOOO. Doing the happy dance here!!

Okay , how do you put 30 helium filled balloons in a dodge caravan and get home? Lizzy wanted to take all her balloons home but for safety purposes we are donating the balloons to kids up here after they are sanitized. Can you see us trying to drive with a van full of balloons. Not likely!! LOL

Its been a whirl wind last few weeks. There were many days I did not sleep, argue with the attending docs, piss off the RTS and constantly pray for God to save our girl. I did not know if Lizzy would get through this terrible illness and still be the same kid that came through these doors the night we arrived. The part that hurts my heart is that this little girl had so much confidence in me to get her through this illness with out coming to the hospital. I wish I could of done it but I have to admit if we had not come here and DR.Schroth had not life-flighted her in I do not want to think of the what ifs. I aged 40 years in two weeks. Its been 21 days with RSV and now its finally OVER!! The worst illness ever that we have had to encounter with Lizzy.

The q-2 was treacherous but Lizzy is close to baseline again because of the RTS and their care with me at her side helping.  We wanted her intubated but they said no, that  it will be rough but she would get through this. they put the tool boxes with the intubation kit in Lizzy's room for peace of mind to us.  They said Lizzy did not need to be intubated. They took the boxes out of here last weekend after Lizzy turned the corner.
Lizzy had a tea party with her favorite nurses and PICU DR. Jake ( Lizzy said he is cute LOL) , and it was  so much fun for her. They all sat drank tea and Lizzy entertained them.  Kim was one of her favorite nurses besides Claude and Lynn. She liked all her nurses but these 3 she liked the best. Just a wonderful staff. She wants to take Kim home and have her sleep in Aunt Jessie's old pink room!!I need a "Kim" to help me at home. She has been so good with Lizzy.

I guess DR.Schroth is saying Lizzy needs growth rod surgery again...... *sigh* but we have to see the new ortho wants to do. We knew this was coming. In the mean time the new seating  for her chair is going to be picked up hopefully next week and her new TLSO.

Thank you to all of you that prayed, did some healing, sent positive energy, presents, balloons, brought food , phone calls, being my sounding board, brought supplies, help us with our stay etc and just for being yourselves. You are the greatest extended family ever!!

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

thursday 4/7 /2011 Lizzy update- Living with Spinal Muscular Atrophy

Update- Thursday

Okay , Lizzy had just a perfect night. Just awesome. She is on Q-3

Then, around 9am started another round of treatments . All of a sudden her O2 levels were dropping ... Then, Christen runs out of the room she was so upset while Deb ( RT) and I were working on Lizzy. Dropping O2s to the 50s, 70s heart rate sky rocking. She had a Huge stringy plugs that was cutting off all her air flow. I mean they were so long . God got me and Deb through this guiding our hands in getting this plug out. Lizzy turned blue 5 times this morning but she NEVER lost consciousness. We did it !! We got it ALL out and Lizzy says she knew we would get it and she was not scared. Can you believe she said she was not scared? ( Tears flowing right this second) It seemed an eternity.

So, now she is sleeping doing well. I had to sit with a blanket over my head to get myself composed and do some direct channeling to that divine source that gets me through each day thank again for the miracle that just happened.

I am going to come out of here stronger minded person than when I arrived.

Thank you for the prayers keep them coming.

"We believe in miracles because we live with one"

www.our-sma-angels.com/elizabeth

Two steps forward one step back- Living with Spinal Muscular Atrophy

Its been like riding on emotional roller coaster this past week.

Lizzy takes two steps forward and 1 step back. Breaks my heart to see what this little girl has gone through but on the other hand makes me beam with pride how she has gotten through it.

Yesterday, everything was going great and I expected this is the road to recovery . Then, she slid back again and bradyed again.

Last night, she was better but getting this junk out is unreal. O2 is still at 30%.

My mother is not well either. They are thinking its bone cancer. She is also in the hospital in our home town,

Its hard not to lose faith through times like this when there is so much going on but faith and believing in miracles is all I have.

Thank you my friends for being there for us.

Keep those prayers coming!!

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

www.our-sma-angels.com/elizabeth 

Living with Spinal Muscular Atrophy Type 1 - Magic DVDs and Having Hope

Its been raining here today. Its funny how when the sun shines you feel full of energy (even when its super cold out). Today, rain  dark and it was in the 50s and a Blah dark wet day.

Elizabeth and I watched the DVD version of BBCS Life narrated by Oprah Winfrey. Bought the series( used but in great condition). Lizzy loves watching them. Great learning experiences. Lizzy says "These DVDS are magic" Today was a good day to watch them again. Watching Lizzy's face was amazing while she was so captivated by this unique series about species that live in our earth. I just love her so very much!!

Paul has had no call backs on the job interviews. He has called and went back for his own follow ups and NOTHING. This is getting scary. To be cut off unemployment and STILL every week applying for job with no success. The news says  "Its getting better in the job market!" He still has not been able get hired . He was talking to one of his people he went to school with and they said" The way the tech school does it is that they only have to get 80% hired jobs with  grants " They hope people drop out  after mid term because they still get paid. . Paul was on the list NOT to find a job for( From the tech school he attended I guess)  from the beginning because of his age!" Is that a bunch of BS or what?  They were hoping he would not of had a 4.0 average and drop out. Well, he didnt drop out and had a 4.0 and NEVER missed a day of class. So, what a scam but..... he did learn things he didn't know and needed that schooling to secure himself a job when things open up. There is no PROOF of this to our knowledge but....can you believe he was told that? He showed them huh?

Its been so peaceful here last few weeks with just the four of us. No drama.... just peace. More positive.
Paul is pretty positive he will find work soon. I am just so worried about losing the house but trying to keep positive. The monthly bills are draining our money. I can not wait for spring and of a gas bill and electric bill. If If we could afford it we would go with solar energy. It would cost us a fortune but it would save is so much .
Just paid off all the utilities and house payment. Huge expense. Over 600 for a monthly gas bill? What is up with that? and over 300.00 for electric?? Why are these bills so high? I have Just Energy and locked in my gas bill a few years back. Was it that much colder this last billing cycle than ever before?
I can almost cry sending those checks out but they are paid for another month. "Sigh of relief" Then, soon it will be yearly insurance premiums for car and the van. ugh... It will all work out some way some how. I believe that God watches over us and he will make sure somehow we will survive. We have HOPE and just look what we have accomplished with HOPE.

Its Christen's 28th birthday tomorrow. It did not think any of my kids would be living with us still when they are 28 but you know I guess this is way its suppose to be.

My tip for this  post is to use Clorox wipes or Cavi wipes to keep door handles, phones, counter tops, faucets, arms of chairs , tables, toilet seats,etc every day to keep germs away . Not just during flu season but every day. Make sure you wash your hands after you get the mail. If you use suction caths try to get sleeved ones. Cuts down on illnesses . Make sure you wash all equipment including masks after every use. Just some things I do to keep our home safe for Lizzy!

Many prayers for MJ who is in the hospital having a procedure done, for Leah Miller to make a
quick recovery, for our friend Sheila and her family , for us to stay positive and say extra prayers Paul gets a job soon.

Magic is believing in yourself, if you can do that, you can make anything happen." 
-Johann Wolfgang von Goethe

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