The best SMA Doctor in the World ( In our opinion) - Living with SMA

http://ourkids.uwhealth.org/stories/entry/beyond-expectations-the-sophia-dobbert-story/
Please watch this video. This is Lizzy's Doctor from Madison,WI Mary Schroth and Lizzy's friend Sophia
Great Video!!!  Good Job  DR. Schroth ,Andrea, Doug and Sophia

Our sweet Corbyn is home and Lizzy's V-day- Living with SMA

My  grandson  is home from the hospital thank goodness. Only thing..... they still do not know what is going on. His fever is gone and the rash seems to by disapearing. Still some bruising. Where is DR. House when you need him?

Busy week with birthdays this week and last. My brother in law Jim was Thursday the 11th, Jessica my daughter was the 12th , Jeff my son in law was the 13th , My daughter Dawn is today the 14th , Calib my son in law and my grand daughter Rachael is the 17th, my sister Lisa the 18th and my late father in law Bob was the 20th.

Lizzy has been doing great all day and actually been playing with her Mom while I had to do a family tree for my husband's side. Its a family project.
Lizzy got a new webkin from her Dad and she has been playing with it online all day.
I have not been online too much last few days to much going on here. Sometimes you just need a break.
Hope every one is doing well

Oh, I almost forgot ........geeesh Dawn's best friend Katie donated some of her breast milk to Lizzy yesterday.Is that great or what?  She has a great diet I hear and we are excited to have a local donor! Thank you to the man upstairs for keeping a close eye on Lizzy. Her guardian angel she calls " Molly" has been watching over her too. Yes, we believe .....

Lizzy gets her new AFOS and TLSOs tomorrow. We are very excited. Yeah, she picked Leopard again. That is her "Trade Mark" I guess.  Another busy brrrrrrrr cold week ahead.
Many prayer to all the sick kids!!
"We believe in Miracles because we live with one"
www.our-sma-angels.com/elizabeth

My Poor Sweet Little guy and Great Doc visit for Lizzy - Living with SMA

Many prayers please for my sweet little grandson Corbyn. The docs do not know what he has. He is in the hospital in Normal.IL . He started with 104 temp and weird rash. All tests have been negative but I have been researching and  I think it is Kawasaki disease as our doc here suggested yesterday when we had Lizzy in for her wellness check. His fever has been down but the weird rash that is causing bruises keep getting worse. Its hurts me so much I can not just go up to the hospital and pick him up and hold him. He just started walking yesterday. He will be a year old in a month. Its tears me up to know I can not be there for Dawn. We can not  expose Elizabeth to any illness.

We took Lizzy to Easter Seals today for an eval. It was a long day but I think we will get the services we need for Lizzy. We live them very much.  The OT and PT seem to be very excited to meet Elizabeth and seem they want to help her. They are going to start swim therapy but the question is when. It may take awhile because of Lizzy has to have medicaid approval. The OT and PT had never had a seen a child with type 1 SMA.  One of the other PTs popped in to see Elizabeth for a minute and he said he had seen SMA before. They were going to  check out her web-site and find out all about her. Elizabeth liked them also so I hope this gets approved quick! The OT measured Elizabeth for splints for her hands today. My request. Elizabeth needs some some hand splints because she is on the computer a lot and needs the extra support to keep her hand from getting more contracted. She is stretched every day but needs help with her hands  We got to see Gretchen the lady that serial casted Elizabeth a few years ago. Great lady. She saw Lizzy and came in to say hello.

Lizzy had a wellness visit with DR.Hough yesterday. Its been awhile since he has seen her. He was awed at how well she is doing . He could not stop talking about how he thinks her diet and home care is why she is doing so well. He really believes the donor breast milk has helped keep her so healthy. She has had only two sinus infections all winter and that is great. Its amazing how great she is doing. Makes you feel like you are doing something right when you get a great visit. Lizzy is up 3 pounds since Sept.

Again, please say a few prayers for our Corbyn to get better soon. Poor little guy. Prayers for all the sick kids and keep Lizzy in your prayers.

Lizzy is wireless now so I can actually get online and update more often!!

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

Learning Video on SMA, Melt downs,Dieting and Shining Stars - Living with SMA

DR.Schroth was just in Ohio teaching others about care of SMA. The video she made on this link below is the best. Newly diagnosed families and their doctors NEED to watch this video. It could save your child's life . It was made Feb 4 . Also ,to the hospitals that do not know SMA Protocol NEED  this info . DR.Schroth in our opinion is the best doctor in the WORLD for SMA. 

There is no excuses anymore for the ignorance of doctors about SMA because of the internet. Please watch this http://nch.dataserv.tv/NCH/Catalog/  Its  was FEB 4 with DR.Schroth in Ohio as I said. . VERY GOOD Video !! It could save a life . 

Elizabeth is doing well. She was sick until a week ago  bounced back but now she claims the internet until I get a new wireless router that will work so we can ALL  be on the internet. She had a melt down again today over me getting online and I told her she had to share. I had to do some extra coughs and suction over it but she is fine now. She I think learned throwing a fit to get her way is not going to always work with me. To care for a child with SMA can be a challenging life but to have a child with SMA and a  "spoiled brat"  is unacceptable. They need to discipline too. Not that we do not give Elizabeth a lot of what she wants but there is a point where you have to teach them what is acceptable behavior and unacceptable. She is a miracle child yes but she is very smart also and knows how to manipulate you when she wants something her way. I am the one that does most all her care so I let her know I was the one calling the shots. It worked. 

My friend Katie saved me with my dieting. You know I have not found one diet salad dressing that did not taste horrible until now. She told me about the one I am using now and love. Its "Newman's Own Light lime Vingaigrette". It is so good. Who would of ever thought that lime and vinegar could taste so good. I think you need to like lime to like it but its heavenly..... so good. I have a salad for lunch with a few pecans, rasberries, tomatoes and different organic lettuce and oh my it is so good.  I am been pretty good this past week. I kind of avoid the scales but I feel like I am losing. I need to get my Mayo clinic DVDs out and exercise.Self Discipline.. where is mine?  I have to do this for me. I make  boutique hair bows when I am not doing something for Elizabeth so exercising is something I have to make myself do.  I have gotten really good it as of the late making bows. I started awhile back and I have done many.  Mine are unique as they are my own design. Nothing like any one elses out here. I combine different basic bows with frills and little other things that I make my own.  I need to slow down doing this and work on this old fat body. I loved going to curves but I had to quit due to Moms working out after they were caring for their sick children and Paul getting laid off. IF it would stop snowing here walking would be an option. 

Tomorrow is Aleena Miller's 6th Birthday!!!!   Happy birthday Aleena. Six years old. We met you when you were just a baby. We been though a lot together the Millers and us. Amazing isnt it. They have done so much for the study at Stanford  by raising money to help fund the study, and getting AWARENESS OF SMA out there doing a conference in their area and continually helping families with information on care of these beautiful children. Stephanie Aleena's Mom had this video made . Aleena and Lizzy are the "Shining Stars" in it. Here is the link to the video Hope and Light Foundation. 

Many prayers out there to all the sick kids out there. Many prayers to the families that have lost a child to this terrible disease. 


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

More snow coming......... Living with SMA

Its been awhile since I updated.  Love this pic(above)  of Lizzy from last fall.  I totally apologize. Lizzy had gotten sick on the 27th and is better now. My focus is her when she is sick. Now, if I can figure out how to get my wireless internet to work life would be better. Elizabeth wants to be online all the time. She had a total melt down because I was online today. She has the computer access most ALL the time these days when its working.

I need to just give a quick update.  Lizzy is doing well. I failed myself this past week and dieting failed. Its going to snow here soon. Paul is the highest score in his class. Dawn quit work but is working more since she quit. We are not going to MDA camp. We are going to CCK but have to go see DR. Hough next week for a wellness check and release to go. We are going to the FSMA Conference but not sure how we will get there or or afford it but the plan is to go. It will just be Christen, Lizzy and me since Paul will be in school. Lost our bm donor and looking for a new one.  Not sure when we are going to Stanford next.
 It supposed to be snowing any minute again. ugh.....

MJ is home from the hospital and its Madison Reed's 13th birthday today!!
Many prayers for the kids who are sick.

Is it spring yet?

I will update more soon.
'We believe in miracles because we live with one"
www.our-sma-angels.com/elizabeth

And we have SUN today!! - Living with Spinal Muscular Atrophy

We have sun today. Yes.... The sun has not been out for what it seems for months. Need some of that natural Vit D to soak up. If it was not so darn cold I would just go sit on the steps for an hour or so.

Lizzy is addicted to the INTERNET now. She thinks she does not have to do any school work on the programs we have. She thinks she needs to be on her lap top constantly. So, how do you break that?  Its hard to discipline a child that is diabled because they want to be more independant and find a way to contol things in their lives themselves. I know....... just because she is handicapped does not mean she has to be a brat. She is not a brat but she gets VERY whiney, holds her breath and scares the bejeepers out of us when she does not get her way some times.

I have been pretty good sticking to my diet. The town we live in has a contest going on to help people get fit and healthy. For $1.00 you can have a team of 4 and you have 12 weeks to lose weight  The team to lose the most weight gets a Prize. I dont care about the prize I just want to progam myself again to lose and maintain!!    I have been working on my girls to do this with me.  So , far just today Jessica is interested but the problem is getting them to stick with it.  Keep your fingers crossed. I have been making recipes and we are  making a grocery list before shopping.  I have been doing bigger sides of veggies and less meat. I have been eating 5 fruits a day. The evercise....... UGH  I am trying to do but my day is so crazy sometimes even getting time for a bath sometimes is not until evening. The only problem is that Elizabeth's dad bought cheese cake, taco dip, lots of junk food  just to be a **it. then he told Christen "I love you just for who you are" . Give me a flipping break..... I am 51 and maybe men say that but.... every man wants a" hot" wife/girlfriend. I know I have been married for 35 years and I know I get treated better when I am thin. Its human nature.  Last time I was on steroids for my back I  lost the weight quickly because I worked two jobs, walked 5 miles a day and watched what I ate. Not so easy this time.  I have more going on in my life and many whole total life changes have taken place. These are not excuses these are FACT. I just have to work harder to get my self back to the way I used to think.

Did you know you can eat one piece of dark chocolate and drink green tea and it will calm you? Its good for you.  Yeah..... heard that today on the "View"

Paul is better this week and seems to be getting everything all figured out. He has been running around the house today with this stupid hat with goggles on making Elizabeth and us laugh.  He has been doing great on his tests but living with him has been a nightmare. I blew up at him over the week-end. He has been NO help to me what so ever with Lizzy, he gets mad very easy, He was so stressed out he was not comprehending what he reads and has to re-read things at times 6 times. I told him to relax and FOCUS!!! My gosh I went to college when I had 4 kids, bartended nights& week-ends and ran a house hold. He would not help me them either. Now, its all coming back to haunt him!! It was very hard for me and I did very well but I had I had to quit because he was not helping me. I raised the kids and he paid bills. That is about how it went back then. So, I brought that to his attention and explained to him HOW I DID it and how I learned FOCUS.  Maybe it helped.  I hope so.



I inserted  baby pics of Elizabeth above. Using my old computer I have lots of old pics of here!!

Five weeks till March!!  Sprng will be here before you know it!! 




Many prayers for the sick kiddos!!


"We believe in miracles because we live with one"

www.our-sma-angels.com/elizabeth

Please God help our Little friend - LIVING with Spinal Muscular Atrophy

It was a pretty good day early. Lizzy and I did some school work late this afternoon.. This morning she was not interested at all in school work. We talked  a lot, spent time together and NO whining today!! I just love my girl. Elizabeth you stole my heart from the day you were born. I need to cuddle with her tonight.

I  got a call from a friend that told me a little guy( Type1) I know was being life flighted to her area because of more ignorance of doctors. He was coming there to get proper care, . The little guy coded twice. TWICE.... today. Taking a deep breath tears were pouring down my face as I was talking on the phone. Man, I really just hate SMA. Thankfully, his Mom called  me tonight and he seems fine but she is an emotional wreck and scared to sleep. He is in the PICU until they figure out what is going on.
.I have been there..... Oh man I know she is afraid if she sleeps he will get bad again. Every second of every minute all you want to do is hold them and love them. He is so little. Its breaks my heart. . Is he just sick and needs  extra care?  I guess we will be finding out because they have done cultures and blood tests. The first thing the doctors said was "Trach". How could you make a decison like that not knowing what is wrong with your child. I am all for getting a trach done if is the right decison for that child.
I just really HAAAAAAATE SMA.

"Please God help this little friend of ours . Please save him. He is so young.
Please God teach these doctors how to care for these kids. Please God....  give these researchers the intellegence to find a cure let it be in our life time.  His Mama and Daddy works so hard to keep their son healthy.  "

My heart can not bear another loss in the SMA World.

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