Ear ache, Winter blues and web-site for rare diseases - Living with SMA

Lizzy has an ear ache and as of about 30 mins ago has low grade temp. Man, you know just when you think everything is great something else happens. I gave her motrin earlier today for the pain she was having. Local doc called in a script for Augmentin. My poor little sweetie. The doc's nurse said everyone is sick. Well, not me and I  am thinking staying  indoors might be the way to go this week. We "nipped this in the bud"and got her on antibiotic ASAP
I had ear aches my whole child hood and they just suck. Found out later in life that they were caused from an allergy to the heat in the house "Dry Heat". Dawn my daughter is the same way. That is why we moved to a house with steam heat over 20 years ago.
Lizzy seems content now and is on Web-kinz at this very minute.  She was VERY whining today and I was so afraid she was getting sick. Lets hope it the med takes care of the ears and that is the end of it.

I have to bribe her to do school work these days.

I find myself lately thinking of all the things I have been through in the past almost 7 years and the person I am now. Thinking about the mistakes I have made and learned from, the relationship I have with my spirituality and how I have never had this inner divine presence that now helps me get through each day besides our brown eyed "Rock Star" miracle child I care for every day.  I think about families that have touched my heart and the families I have helped with info I learned from taking care of Lizzy or they have helped me. The faces of the kids I have met or know because their faces are embedded in my heart in my inner soul.  Why was I picked  of all the people in the world to be who I am today? Is it because I always fight for what is right or he fact I don't throw in the towel when the going gets tough? How could almost 8 years ago I be that person that partied ,rode on a Harley,be a bartender and running a sporting goods dept  thinking my" Big Job" in my life was over raising my kid. I did not take any "**it" from anyone. I was very arrogant because I knew I was "Good" at anything I did. Then, with out notice went into a life of second guessing myself and worrying every night for two years or if we would lose Lizzy  I never ever thought I would be the person I am today. You know I can not sleep at all if I don't say prayers with Lizzy. We have to pray for all those dear to us and the sick kids with SMA. I get MAD  I get REALLY mad at times.
I am consumed with Hope. Hope that Lizzy will be able grow old, the hope that there will one day be cure and no more babies born with SMA. Will it happen in my lifetime? I believe it will I feel it coming closer.

It snowed again....I have had enough of this weather but what are you going to do? Its so  flipping cold.
I was hoping since Easter is so early this year we may have  an early Spring. That is what I get for thinking.

MY diet.....ugh.... I get so good then Slide back.... Shame on me!!

Lizzy made a video for her friend Drew http://www.youtube.com/watch?v=3B0bw6iKo7k . I say in the video that she is  using one hand but I meant one device. ooops 


Many prayers to Lizzy , Jake Goodson and Sophia Doebbert to get better soon!!


Here is an awesome site http://www.crdnetwork.org/blog/blog-for-rare-bloggers-from-around-the-world-come-together-for-rare-disease-awareness-and-support-for-world-rare-disease-day-2010-feb-28-blog4rare/
Bloggers of rare diseases.

" WE BELIEVE IN MIRACLES BECAUSE WE LIVE WITH ONE "
www.our-sma-angels.com/elizabeth

Long over do update - Living with SMA

Have you have thought you would never get caught up? Well, that is me this week. Then. I was messing with my AOL trying to get it to quit freezing on me and I deleted all my emails.... oops if you emailed me this past week please send again. 

Its been a very trying week. Had some bad days with an unrelative person that I will not disclose. You get to the point sometimes you JUST CAN NOT TAKE IT  ANYMORE UNNECESSARY BS. You get this over whelming feeling where you want to just shake the living crude out of them and say "Hey, I am JUST DONE ". Well, with not going into details I had enough I blew up .... Any way things are better I feel like I shot off like a volcano and my mind and body are at peace right now. It took a few days but I am okay. I am a survivor. LOL 

We do not have to go to Stanford until June!!!!! Is that cool or what? We are ecstatic. A weight has been lifted off our shoulders. The flight drama has still not been resolved as of yet I guess. Still no info on the labeling for the machines. We just know Elizabeth present bipap is not being made anymore and the new one we are hoping she gets is approved for flying.

We have been thinking about spring and summer. We have a trip to Kentucky in April, a trip to CA in June and one to Minnesota . So we will be very busy. They are doing a fundraiser in May for Elizabeth for our trip in June to drive to CA. Jessica ( my daughter)is also coming to help drive. So, It sounds like a busy summer.

I am on a project that I will post at a later date when I get it done. 

I wanted to  post this in my blog. These rules and Lizzy's doctor helped me keep my sanity. 

A very wise man once told me and I now live by these rules myself:

Three Rules in Dealing with Families 

Three  golden rules I live by ( and as much as I am involved in SMA the

> rules are essential to maintain sanity and a reasonably normal personal

> life) and never ( or almost never) violate. 

> 

> Rule one;  you cannot , no matter how hard you try , help everyone

> 

> Rule two; ( this is the biggy) you can only make a difference in the

> ones that truly want to be helped

> 

> Rule three; if you have any trouble and get frustrated see rule one

On a good note Paul is the top of his class!! 

Elizabeth's attention span just improved over 50% in testing she had on WED. 

Many prayers for Sophia Doebbert, Chase and Jacob Goodson. Sophia and Jacob are sick and Chase is having some plugging issues. 

"We believe in miracle because we live with one"

www.our-sma-angels.com/elizabeth 

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