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!!"

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